oops--forgot to post addresses to locations for Patricia's prayer service, funeral, and wake.
Prayer service at Heritage Funeral Home, 57th and south Minnesota Avenue,
7 PM Friday, June 17th.
Funeral: St. Joseph's Cathedral School, 523 N. Duluth Avenue.
Services are in the school gym, as the church renovation is not yet completed. There is a ramp at the west end of the school by which you could enter. There are probably other doors that I am not aware of right now.
Interment: St. Michael's Cemetery, 3001 N. Cliff Avenue. You should be able to follow other cars. If you are making your own way there, go north on MN avenue to Russel St, turn right (east) and follow this road out to St. Michael's.
We will be going to the cemetery immediately after the funeral, then return to the school cafeteria for dinner.Father Fitzgerald has a tight schedule on Saturday, otherwise we would have had dinner first.
Annie
Wake: Mary and Randy's house, 1104 W. 5th St.
Friday, June 17, 2011
Monday, June 13, 2011
She Made It
As some of you may have heard, our dear mother, Patricia Ann Fallon passed away this morning around 10 AM. Mary, Kevin, Steve and Kathy and I were here; Paul and Tom arrived within a couple of minutes, and Jane a short while after. Colleen had been here over Memorial Day weekend, and will be back to Sioux Falls soon with her family.
One of our hospice nurses, Mary, called us as we were sitting with Mom about 9 AM this morning, and I told her what we had for vitals. She came right over, and in the 10 minutes or so it took her to get here, Mom had begun to slow down more. By about 10 AM, mom took the advice we had been giving her for a couple of days, and left for Heaven. It was a moment we expected, tried to plan for (how silly!) and had difficulty integrating when it happened.We had so many layered emotions; it was a very powerful and humbling experience, and we were honored to be there with her.
We are planning so far to have a prayer service at 7 PM this Friday (Heritage Funeral Home), with a gathering at Mary and Randy's (1104 W. 5th St.) afterward, and then the funeral at 10 AM Saturday at Cathedral. The ceremony will be in the gym of the school, because the church is still under renovation. We will have a dinner in the school cafeteria afterward. Mom will be buried at St. Michael's Cemetery next to Donald. That is just 10 minutes or so away from Cathedral. I will post a map in the morning, with all the relevant destinations. Just so you know, we have to get the final confirmation from Fr. Fitzpatrick tomorrow, but the church secretary said that these times should work with his schedule. Another item: we have not decided yet the order of events following the funeral--dinner then cemetery? Or cemetery then dinner? :) We may arrange things so that dinner will begin to be served, while those who wish to leave for the cemetery do so. We are sure there will be people who will not be going out to St. Michael's, and they could have dinner and visit while we do that.
Thanks for your kind calls and visits. You have lifted all of us up, especially Patricia.
Love,
Annie
Kevin here, just wanted to add that when the Hospice chaplain came for a prayer service after she passed, we had a chance to sing a couple of Mom's favorite songs for her giving a final send off, we sang Amazing Grace and When Irish Eyes Are Smiling and we think Mom was singing along.
The Friday night prayer service will be at Heritage Funeral Home at 4800 S. Minnesota Ave., in Sioux Falls. It is on the southeast corner of Minnesota Ave and 57th Street.
The funeral service is in the school gym right next to St. Joseph's Cathedral at 5th St. and N. Duluth. You can also park in the school parking lot behind the gym. That entrance is off of 4th St and Summit Ave.
We thank one and all for the kind thoughts, prayers and condolences that have been extended to our family. Thank you to each and all!
One of our hospice nurses, Mary, called us as we were sitting with Mom about 9 AM this morning, and I told her what we had for vitals. She came right over, and in the 10 minutes or so it took her to get here, Mom had begun to slow down more. By about 10 AM, mom took the advice we had been giving her for a couple of days, and left for Heaven. It was a moment we expected, tried to plan for (how silly!) and had difficulty integrating when it happened.We had so many layered emotions; it was a very powerful and humbling experience, and we were honored to be there with her.
We are planning so far to have a prayer service at 7 PM this Friday (Heritage Funeral Home), with a gathering at Mary and Randy's (1104 W. 5th St.) afterward, and then the funeral at 10 AM Saturday at Cathedral. The ceremony will be in the gym of the school, because the church is still under renovation. We will have a dinner in the school cafeteria afterward. Mom will be buried at St. Michael's Cemetery next to Donald. That is just 10 minutes or so away from Cathedral. I will post a map in the morning, with all the relevant destinations. Just so you know, we have to get the final confirmation from Fr. Fitzpatrick tomorrow, but the church secretary said that these times should work with his schedule. Another item: we have not decided yet the order of events following the funeral--dinner then cemetery? Or cemetery then dinner? :) We may arrange things so that dinner will begin to be served, while those who wish to leave for the cemetery do so. We are sure there will be people who will not be going out to St. Michael's, and they could have dinner and visit while we do that.
Thanks for your kind calls and visits. You have lifted all of us up, especially Patricia.
Love,
Annie
Kevin here, just wanted to add that when the Hospice chaplain came for a prayer service after she passed, we had a chance to sing a couple of Mom's favorite songs for her giving a final send off, we sang Amazing Grace and When Irish Eyes Are Smiling and we think Mom was singing along.
The Friday night prayer service will be at Heritage Funeral Home at 4800 S. Minnesota Ave., in Sioux Falls. It is on the southeast corner of Minnesota Ave and 57th Street.
The funeral service is in the school gym right next to St. Joseph's Cathedral at 5th St. and N. Duluth. You can also park in the school parking lot behind the gym. That entrance is off of 4th St and Summit Ave.
We thank one and all for the kind thoughts, prayers and condolences that have been extended to our family. Thank you to each and all!
Friday, June 10, 2011
Friday Night Notes
Hello from Sioux Falls,
Tonight finds us continuing to monitor Gram. She has been sleeping all day, except when we gave her care. Even then, she sometimes did not rouse. She is only minimally able to swallow, so no food (Ensure) today and just a few cc of water. She has had some trouble with leg cramps,which made her restless.. Our nurse helped us work out a plan with med. and warm towels from the dryer. The muscle finally relaxed, and so did Gram.
What we are working for right now is to keep her comfortable. So glad we have the hosp. bed. She seems more comfy with her head elevated.
It is so interesting that as Gram prepares to head back to heaven, we are also awaiting the birth of Maya Rose Wilmeth in Omaha. She was due on this past Wednesday, but seems to be holding out for a bit. She is Mary and Randy's second grandchild, and will be born to their daughter Rachael and her husband Mike.
This reminds me that Liz was born around the time that Grampa Don passed. Comings and goings....
In more arrival news, Kevin flew in from Denver yesterday, and we are so glad that he could come. Mom gave him several smiles when he got here, reached out to touch his arm. Kevin, Mary and I are sitting in Gram's room now, keeping her company and visiting with each other. Today Kevin made the most incredibly awesome chicken chili....fresh cilantro, celery, cheddar cheese, and a whole bunch of other great stuff. Best I ever tasted, extreme comfort food.
I am going to hang at home tomorrow instead of going to the art fair. Tom will take my display (and sell it all, I am sure!). He has some beautiful handcarved walking sticks, and pendants made of slices of interesting driftwood branches. He finds a lot of neat materials when hiking around the river. Our friend Lindsay will also be there, so that if we need Tom, he can zip over here in a short time.
Wow, the fireworks are going strong right now. The Sioux Falls Pheasants (used to be the Canaries) had a game tonight, and they always have some pyrotechnics afterward. Their stadium (aka The Birdcage) is not too far away. We can watch them and certainly hear them very well. Kind of fun. It is also nice to be a block away from Terrace Park when the Sunday night concert is going on.
It is a fun neighborhood in so many ways.
Mary and I met some of our new neighbors across the street. Becky is an energetic young mom with 4 little boys and another baby on the way. She is also an artist, and the three of us promised each other to get together for some artsy time one day.
Gram is still resting peacefully, all snuggled into her pillows and soft blankets. Will write again soon.
Love,
Annie, Kevin, Mary and all the Fallon kids.
Tonight finds us continuing to monitor Gram. She has been sleeping all day, except when we gave her care. Even then, she sometimes did not rouse. She is only minimally able to swallow, so no food (Ensure) today and just a few cc of water. She has had some trouble with leg cramps,which made her restless.. Our nurse helped us work out a plan with med. and warm towels from the dryer. The muscle finally relaxed, and so did Gram.
What we are working for right now is to keep her comfortable. So glad we have the hosp. bed. She seems more comfy with her head elevated.
It is so interesting that as Gram prepares to head back to heaven, we are also awaiting the birth of Maya Rose Wilmeth in Omaha. She was due on this past Wednesday, but seems to be holding out for a bit. She is Mary and Randy's second grandchild, and will be born to their daughter Rachael and her husband Mike.
This reminds me that Liz was born around the time that Grampa Don passed. Comings and goings....
In more arrival news, Kevin flew in from Denver yesterday, and we are so glad that he could come. Mom gave him several smiles when he got here, reached out to touch his arm. Kevin, Mary and I are sitting in Gram's room now, keeping her company and visiting with each other. Today Kevin made the most incredibly awesome chicken chili....fresh cilantro, celery, cheddar cheese, and a whole bunch of other great stuff. Best I ever tasted, extreme comfort food.
I am going to hang at home tomorrow instead of going to the art fair. Tom will take my display (and sell it all, I am sure!). He has some beautiful handcarved walking sticks, and pendants made of slices of interesting driftwood branches. He finds a lot of neat materials when hiking around the river. Our friend Lindsay will also be there, so that if we need Tom, he can zip over here in a short time.
Wow, the fireworks are going strong right now. The Sioux Falls Pheasants (used to be the Canaries) had a game tonight, and they always have some pyrotechnics afterward. Their stadium (aka The Birdcage) is not too far away. We can watch them and certainly hear them very well. Kind of fun. It is also nice to be a block away from Terrace Park when the Sunday night concert is going on.
It is a fun neighborhood in so many ways.
Mary and I met some of our new neighbors across the street. Becky is an energetic young mom with 4 little boys and another baby on the way. She is also an artist, and the three of us promised each other to get together for some artsy time one day.
Gram is still resting peacefully, all snuggled into her pillows and soft blankets. Will write again soon.
Love,
Annie, Kevin, Mary and all the Fallon kids.
Thursday, June 9, 2011
Thursday. June 9
Hello everyone,
Sorry I have not been a good correspondent lately. Have been busy, (but mostly in my head) and just have not sat down to pull together thoughts about how we are doing. Alz. is such a rollercoaster. Three steps into decline, then two steps to the positive. You keep trying to anticipate needs, adjust the emotions and effort levels to meet those, but each day or week keeps bringing more surprises. It was also sad to have lost our cousin Kimmie.. What a vibrant lady she ahd been! Tom, Paul and Steve attended her funeral. Mary and I thought we should hang here, as things were a bit touch-and-go with Mom around that time.
Today, Mom seems to be fairly static in her declined functioning. She is very unresponsive, though she will open her eyes if we insist (just to see if she can). She is again not able to swallow, as she was over Memorial Day weekend. She has lost a great deal of weight due to being too tired to eat, or too disinterested. Our dear Mom may be on her way home for real this time, and we will be so happy for her when she does not have to endure more. We shall keep you posted. When she does pass away and we end up finalizing funeral arrangements, we are going to try for a Saturday, if possible. This could facilitate travel for a lot of people or make it easier for those who are working M-F to attend.
Steve and Kathy were here over the past weekend, and it was great having them around. Steve and Tom did some maintenance involving tall ladders (thank you so much!-I was not excited about climbing up there myself!!!). Kathy kept the laundry and dishwasher humming, in addition to being our supportive geriatric nurse consultant.
Last week, Susan and Mary Parsley came to visit. I know it was emotionally, and physically difficult for Mary, as she is still recovering from her hip surgery. Mom was awake, but sort of in her own world during the time they were here. We were hoping for a lucid window, and though that did not appear. She was able to smile several times, and I feel that Mom was aware, on some level, of the love between them.
The last two weeks we have been going through boxes and boxes of old photos. Surprisingly, we came across some that none of us remember ever seeing, such as portraits of our Fallon grandparents and great-grandparents, snaps of Mom and Dad during dating years, interesting events such as a skating party on the pond at the Sutton farm, with JJ (I think) in his Army uniform. There are several of young women all dressed up in the latest fashions (which they probably sewed themselves), standing in a row on the bottom step of the front porch of Gramma and Grampa Sutton's house.
There is a lovely 5 x 7 of an outdoor breakfast served by Nel Hartwig after a morning horse ride. Mom is wearing a pretty striped dress, and helping to set food out on a table. Looks as if it was a beautiful day. Nel is the professor from SDSU that introduced Mom and Dad. I wonder if Mom went riding....hmmm. Nel is outfitted in jodpurs and knee boots, ever the horsewoman. From the stories I have heard, she had enough personality for 5 people.
Sarah Arnold is making a photo slideshow for us so that we can share some of these little gems.
OK, my loved ones, time to get going and pull some things together. Tommy and I are going to try to represent at an art fair at Harrisburg on Saturday. We will have to see how things go on the homefront first, but we will still try to be ready in case it works out that we can go.
Take care of yourselves, and we will keep you posted.
Love,
Annie and all the Fallon kids
Sorry I have not been a good correspondent lately. Have been busy, (but mostly in my head) and just have not sat down to pull together thoughts about how we are doing. Alz. is such a rollercoaster. Three steps into decline, then two steps to the positive. You keep trying to anticipate needs, adjust the emotions and effort levels to meet those, but each day or week keeps bringing more surprises. It was also sad to have lost our cousin Kimmie.. What a vibrant lady she ahd been! Tom, Paul and Steve attended her funeral. Mary and I thought we should hang here, as things were a bit touch-and-go with Mom around that time.
Today, Mom seems to be fairly static in her declined functioning. She is very unresponsive, though she will open her eyes if we insist (just to see if she can). She is again not able to swallow, as she was over Memorial Day weekend. She has lost a great deal of weight due to being too tired to eat, or too disinterested. Our dear Mom may be on her way home for real this time, and we will be so happy for her when she does not have to endure more. We shall keep you posted. When she does pass away and we end up finalizing funeral arrangements, we are going to try for a Saturday, if possible. This could facilitate travel for a lot of people or make it easier for those who are working M-F to attend.
Steve and Kathy were here over the past weekend, and it was great having them around. Steve and Tom did some maintenance involving tall ladders (thank you so much!-I was not excited about climbing up there myself!!!). Kathy kept the laundry and dishwasher humming, in addition to being our supportive geriatric nurse consultant.
Last week, Susan and Mary Parsley came to visit. I know it was emotionally, and physically difficult for Mary, as she is still recovering from her hip surgery. Mom was awake, but sort of in her own world during the time they were here. We were hoping for a lucid window, and though that did not appear. She was able to smile several times, and I feel that Mom was aware, on some level, of the love between them.
The last two weeks we have been going through boxes and boxes of old photos. Surprisingly, we came across some that none of us remember ever seeing, such as portraits of our Fallon grandparents and great-grandparents, snaps of Mom and Dad during dating years, interesting events such as a skating party on the pond at the Sutton farm, with JJ (I think) in his Army uniform. There are several of young women all dressed up in the latest fashions (which they probably sewed themselves), standing in a row on the bottom step of the front porch of Gramma and Grampa Sutton's house.
There is a lovely 5 x 7 of an outdoor breakfast served by Nel Hartwig after a morning horse ride. Mom is wearing a pretty striped dress, and helping to set food out on a table. Looks as if it was a beautiful day. Nel is the professor from SDSU that introduced Mom and Dad. I wonder if Mom went riding....hmmm. Nel is outfitted in jodpurs and knee boots, ever the horsewoman. From the stories I have heard, she had enough personality for 5 people.
Sarah Arnold is making a photo slideshow for us so that we can share some of these little gems.
OK, my loved ones, time to get going and pull some things together. Tommy and I are going to try to represent at an art fair at Harrisburg on Saturday. We will have to see how things go on the homefront first, but we will still try to be ready in case it works out that we can go.
Take care of yourselves, and we will keep you posted.
Love,
Annie and all the Fallon kids
Monday, April 25, 2011
Easter Monday News
Hello Again,
It was a lovely Easter day here. We also had a lovely dinner with Mary & Randy, Melissa and her boyfriend Mike (we really like him!), and Paul. Mom was beautiful in a new, deep turquoise silky tank top with matching sort-of-sheer jacket. It had a circle ruffle at the elbow. She wore her pearls too. I am kicking myself because I did not take a picture. She looked so pretty. I will try to have her wear that again soon, and take a pic then.
I have told this story to some of you, and some of you were first-hand witnesses. But here it goes again. Mary had made a gorgeous layered strawberry shortcake trifle dessert in a footed glass bowl. It was as tasty as you could imagine. So, Gram and I were sharing a serving of this. When it was gone, I decided I would like a bit more, so I said, "Gram says she would like more", as I passed my bowl back to Mary. There was somewhat of a clamor around the table as my statement was vociferously refuted by people who are supposed to love me. I then lied further, saying that Gram may have whispered this to me, or communicated by pointing to the dessert, and that is why no one but me heard her.
Suddenly, she clearly piped up, "Gram DOES NOT want more dessert!"
She has not spoken a complete sentence for a long time, nor has her speech been very intelligible. It was so much fun to know that she was listening then, and not about to let me get away with bending the truth.
On another note, I must say again that Gram continues to lose interest in eating. Today, for example, she could only eat half of her oatmeal, when a week and a half ago, she would eat the whole serving. Last night, she also began to show signs of having forgotten how to use a straw, after having been able to use one at Easter dinner. We struggled for a bit, then just went to a transparent glass. That way, I could see what she was getting related to the angle at which I held the glass. I have made her choke a few times, and the straws really helped us avoid that. Maybe this skill will come back to her; we will just have to see.
Several hours later, after I wrote this whole post>>>.....wow....how quickly things can change. Mom was able to get up from bed, use the commode, get in wheelchair, and get to the table. She ate some of Randy's luscious home-made chicken noodle soup (yes, even the noodles are home-made), drank a whole Ensure, 8 oz water, 8 oz milk,
and had an ice cream cup for dessert. She used the straw very well! Just wanted to let you know.
We need to be aware of the fact that if Mom's ability to take in nutrition and fluids continues to reduce, she could be leaving us this spring. I have heard some people say that without nutrition, a person could live for two weeks. Without water, maybe several days. We can give ice chips and swab Mom's mouth, though, if she can no longer drink, but another issue is swallowing. Niki says that some people forget to swallow, and then, giving fluids will cause choking. So far Mom can swallow, if we can get the fluids past her clenched teeth. Maybe she has decided that she is ready to be finished with all this, and she is taking advantage of something that she has control of.
I will try to get a weight on Gram tomorrow, if her feet do not hurt too much to stand on the scale.
Over the weekend, when we would get her to her feet to transfer, Mom would cry out that her feet hurt. She had difficulty taking small steps to turn herself around and sit in the wheelchair. It was obviously quite painful. We looked at her feet last night, and could not see anything. Today, however, both feet are swollen, and there are some red hot spots here and there. We would put a cold pack on them, but cold is very aversive for Mom. She probably would not be able to tolerate that. So we are making sure that her feet are elevated quite a bit of the time. Niki is coming in the morning to check this out.
Another interesting thing: we have talked about the fact that Gram has been seeing various people: the little boy with red hair, John, Edward, J.J., and 'the beautiful woman'. This week, for three days in a row, she asked me, 'Who is that tall gentleman?". Since I was only aware of the two of us there. I asked what he looked like, what color hair he had. She was able to say one time that he had dark hair, but that was it for describing this mystery man. I like to think it may have been Dad, checking in on her. Others may think that her brain is hallucinating. Just putting it out there for your consideration.
This experience of being with Mom is really quite rich in learning patience, learning how to accept new limitations, confusions, fatigue, and silly stuff like frustration with equipment.
There have been hilarious times, cozy times, times that make your heart swell.( ie: when Mom so often says, "Thank you so much" for the smallest thing. She also takes our hands and looks into our eyes, with some confusion in hers. We give her our name, and the confusion leaves her face, and she smiles and squeezes our hands.
Hospice continues to be so good to us. On Saturday, Mary, one of their nurses, volunteered to come sit with Mom so I could go out to lunch with Lindsay and her mom. We went to a newer place, called 'Kebobs'; the food was wonderful, and reasonably priced. After that, we went down to 'boutique row', the converted railroad station on 8th street. We wandered in and out of all the shops. In one of them, they were having a drawing to celebrate the fact that they now carry Vera Bradley bags. We all put our names in, and they called me today. I won the grand prize, an $88 tote that could be a carry-on! I have never had a bag that cost more than $20, I think. Mostly because I love searching for designer bags at Goodwill, where they are about $3. (...the thrill of the hunt.....) But this was fun, too! Mary got off early today, came to sit with Mom so I could go pick it up. It is very pretty, with about a dozen handy pockets. I may take it on the plane to Indiana when I go to Alex's graduation.
OK, should get this posted and get going.
Love to all!
Keep up the good work, Aunt Mary!
Annie and Gramma Trish the Dish
It was a lovely Easter day here. We also had a lovely dinner with Mary & Randy, Melissa and her boyfriend Mike (we really like him!), and Paul. Mom was beautiful in a new, deep turquoise silky tank top with matching sort-of-sheer jacket. It had a circle ruffle at the elbow. She wore her pearls too. I am kicking myself because I did not take a picture. She looked so pretty. I will try to have her wear that again soon, and take a pic then.
I have told this story to some of you, and some of you were first-hand witnesses. But here it goes again. Mary had made a gorgeous layered strawberry shortcake trifle dessert in a footed glass bowl. It was as tasty as you could imagine. So, Gram and I were sharing a serving of this. When it was gone, I decided I would like a bit more, so I said, "Gram says she would like more", as I passed my bowl back to Mary. There was somewhat of a clamor around the table as my statement was vociferously refuted by people who are supposed to love me. I then lied further, saying that Gram may have whispered this to me, or communicated by pointing to the dessert, and that is why no one but me heard her.
Suddenly, she clearly piped up, "Gram DOES NOT want more dessert!"
She has not spoken a complete sentence for a long time, nor has her speech been very intelligible. It was so much fun to know that she was listening then, and not about to let me get away with bending the truth.
On another note, I must say again that Gram continues to lose interest in eating. Today, for example, she could only eat half of her oatmeal, when a week and a half ago, she would eat the whole serving. Last night, she also began to show signs of having forgotten how to use a straw, after having been able to use one at Easter dinner. We struggled for a bit, then just went to a transparent glass. That way, I could see what she was getting related to the angle at which I held the glass. I have made her choke a few times, and the straws really helped us avoid that. Maybe this skill will come back to her; we will just have to see.
Several hours later, after I wrote this whole post>>>.....wow....how quickly things can change. Mom was able to get up from bed, use the commode, get in wheelchair, and get to the table. She ate some of Randy's luscious home-made chicken noodle soup (yes, even the noodles are home-made), drank a whole Ensure, 8 oz water, 8 oz milk,
and had an ice cream cup for dessert. She used the straw very well! Just wanted to let you know.
We need to be aware of the fact that if Mom's ability to take in nutrition and fluids continues to reduce, she could be leaving us this spring. I have heard some people say that without nutrition, a person could live for two weeks. Without water, maybe several days. We can give ice chips and swab Mom's mouth, though, if she can no longer drink, but another issue is swallowing. Niki says that some people forget to swallow, and then, giving fluids will cause choking. So far Mom can swallow, if we can get the fluids past her clenched teeth. Maybe she has decided that she is ready to be finished with all this, and she is taking advantage of something that she has control of.
I will try to get a weight on Gram tomorrow, if her feet do not hurt too much to stand on the scale.
Over the weekend, when we would get her to her feet to transfer, Mom would cry out that her feet hurt. She had difficulty taking small steps to turn herself around and sit in the wheelchair. It was obviously quite painful. We looked at her feet last night, and could not see anything. Today, however, both feet are swollen, and there are some red hot spots here and there. We would put a cold pack on them, but cold is very aversive for Mom. She probably would not be able to tolerate that. So we are making sure that her feet are elevated quite a bit of the time. Niki is coming in the morning to check this out.
Another interesting thing: we have talked about the fact that Gram has been seeing various people: the little boy with red hair, John, Edward, J.J., and 'the beautiful woman'. This week, for three days in a row, she asked me, 'Who is that tall gentleman?". Since I was only aware of the two of us there. I asked what he looked like, what color hair he had. She was able to say one time that he had dark hair, but that was it for describing this mystery man. I like to think it may have been Dad, checking in on her. Others may think that her brain is hallucinating. Just putting it out there for your consideration.
This experience of being with Mom is really quite rich in learning patience, learning how to accept new limitations, confusions, fatigue, and silly stuff like frustration with equipment.
There have been hilarious times, cozy times, times that make your heart swell.( ie: when Mom so often says, "Thank you so much" for the smallest thing. She also takes our hands and looks into our eyes, with some confusion in hers. We give her our name, and the confusion leaves her face, and she smiles and squeezes our hands.
Hospice continues to be so good to us. On Saturday, Mary, one of their nurses, volunteered to come sit with Mom so I could go out to lunch with Lindsay and her mom. We went to a newer place, called 'Kebobs'; the food was wonderful, and reasonably priced. After that, we went down to 'boutique row', the converted railroad station on 8th street. We wandered in and out of all the shops. In one of them, they were having a drawing to celebrate the fact that they now carry Vera Bradley bags. We all put our names in, and they called me today. I won the grand prize, an $88 tote that could be a carry-on! I have never had a bag that cost more than $20, I think. Mostly because I love searching for designer bags at Goodwill, where they are about $3. (...the thrill of the hunt.....) But this was fun, too! Mary got off early today, came to sit with Mom so I could go pick it up. It is very pretty, with about a dozen handy pockets. I may take it on the plane to Indiana when I go to Alex's graduation.
OK, should get this posted and get going.
Love to all!
Keep up the good work, Aunt Mary!
Annie and Gramma Trish the Dish
Friday, April 22, 2011
Gram Notes
Hi everyone,
Gram continues to be her happy, positive self. We brought in a hospital bed for her a few weeks ago, because she seemed to like sleeping in one when in respite care. She does the same thing here-when settling in for the night, or a nap, she smiles and smiles! When asked if her bed is comfy, she says, "OH, yes!" so there's an endorsement.
We may have zeroed in on a better sleep med, Risperidone. Gram can have one to four tabs each evening. Usually it is 2, so that is good that she is not needing the max dose all the time so far, and we have some options left there. This is about the 5th sleep med we have tried. Some have made her more agitated instead of calmer. We were told to watch for that, as it can happen often in older people. We have had some wild and very interesting nights, but they are much more predictable now.
Mom has had some recovery of the use of her feet/legs and her ability to stand and pivot to a new seat. For a couple of weeks now, she went back to how she was before Mary's birthday. That was the day when her legs suddenly did not support her at all. We have not been walking, but just being able to transfer means she can get the heck out of bed, use the bathroom, get a GOOD shower in the tub (with a shampoo!), get to the table, use her rocker that she loves, and so on. It is amazing how important this one ability can be.
The last 2 days, Mom has been very tired, however. She was not able to respond well to prompts of 'wake up", "let's go, Kokomo!" and all our other silly morning rituals. She just curled up more compactly in her blankets, and ignored me. Sometimes she would say, "No, no, NO!" and grab blankets back from me. I like that spirit.
When this happens, I work on getting some breakfast into her by serving it in bed. We got a hosp. table with the bed, so I put that over her, bring in the coffee, toast, yogurt, oatmeat---whatever we are having that day. Most days this inspires her to participate, but it did not work the last 2 days. She could have cared less about her morning cup of coffee, which she generally loves. I tried Ensure with a straw in the bottle, and that is the only thing that got a positive response. She was able to swallow that. I think the delivery method, using a straw and keeping the mouth sealed, helps her to swallow. She did not do well with yogurt, applesauce or other foods presented on a spoon. If she allowed this food into her mouth at all (sometimes she did not), it sort of just sat there. Choking risk became an issue, so I quit trying to spoon-feed her if she did not swallow initially
On Wednesday, I kept at it until we finally got up and dressed. However, Mom had difficulty staying awake in her chair. He head was down most of the time, and it took a lot of prompting to get her to eat. She wold sleep unless I made a lot of 1-to-1 interaction attempts It got to be so that I was pretty much standing on my head to get her to interact and eat. After a while, I asked if she wanted to lie down, and she said 'yes'. So that is what we did. Mom had an afternoon nap, and we got up again for the evening. She did eat a small dinner, and then went to bed for the night.
Strangely, she was pretty restless, so we worked our way up to 4 Risperidone tabs, her limit.
Then next day, Thurs., as I have mentioned, she was very sedate. This morning, although she is not up out of bed yet, she has showed signs of being more chipper and 'with it'. Yay!
I need tot wrap this up and get us going, but not before I wonder aloud again about the strangeness of ALZ. At school, we dealt with a lot of brain issues, traumatic brain injury, strokes, congenital brian abnormalities, cortical blindness. In my experience, brain functioning was fairly static, staying the same over time. We tried to access other parts of the brain for basic skills, by programming and repetition. With ALZ, functioning can seem lost, then magicallly reappear the next day. Our nurse, Niki, explains to me: "It's not a linear disease". That is my new mantra for the week.
.
Our trusted expert in geriatric/dementia care, our sister Kathy Fallon, says that there may come a time when Mom is just tired of eating, or just not interested any more. She also may forget to swallow, in which case, continuing to try to feed her will eventually induce choking.
I figure that she can choose to sleep or not, eat or not,, and so on. If you have other feelings on this, let's talk about it.
Alrighty then, talk to you later!
Love from the Home Office,
Annie and Gram
Gram continues to be her happy, positive self. We brought in a hospital bed for her a few weeks ago, because she seemed to like sleeping in one when in respite care. She does the same thing here-when settling in for the night, or a nap, she smiles and smiles! When asked if her bed is comfy, she says, "OH, yes!" so there's an endorsement.
We may have zeroed in on a better sleep med, Risperidone. Gram can have one to four tabs each evening. Usually it is 2, so that is good that she is not needing the max dose all the time so far, and we have some options left there. This is about the 5th sleep med we have tried. Some have made her more agitated instead of calmer. We were told to watch for that, as it can happen often in older people. We have had some wild and very interesting nights, but they are much more predictable now.
Mom has had some recovery of the use of her feet/legs and her ability to stand and pivot to a new seat. For a couple of weeks now, she went back to how she was before Mary's birthday. That was the day when her legs suddenly did not support her at all. We have not been walking, but just being able to transfer means she can get the heck out of bed, use the bathroom, get a GOOD shower in the tub (with a shampoo!), get to the table, use her rocker that she loves, and so on. It is amazing how important this one ability can be.
The last 2 days, Mom has been very tired, however. She was not able to respond well to prompts of 'wake up", "let's go, Kokomo!" and all our other silly morning rituals. She just curled up more compactly in her blankets, and ignored me. Sometimes she would say, "No, no, NO!" and grab blankets back from me. I like that spirit.
When this happens, I work on getting some breakfast into her by serving it in bed. We got a hosp. table with the bed, so I put that over her, bring in the coffee, toast, yogurt, oatmeat---whatever we are having that day. Most days this inspires her to participate, but it did not work the last 2 days. She could have cared less about her morning cup of coffee, which she generally loves. I tried Ensure with a straw in the bottle, and that is the only thing that got a positive response. She was able to swallow that. I think the delivery method, using a straw and keeping the mouth sealed, helps her to swallow. She did not do well with yogurt, applesauce or other foods presented on a spoon. If she allowed this food into her mouth at all (sometimes she did not), it sort of just sat there. Choking risk became an issue, so I quit trying to spoon-feed her if she did not swallow initially
On Wednesday, I kept at it until we finally got up and dressed. However, Mom had difficulty staying awake in her chair. He head was down most of the time, and it took a lot of prompting to get her to eat. She wold sleep unless I made a lot of 1-to-1 interaction attempts It got to be so that I was pretty much standing on my head to get her to interact and eat. After a while, I asked if she wanted to lie down, and she said 'yes'. So that is what we did. Mom had an afternoon nap, and we got up again for the evening. She did eat a small dinner, and then went to bed for the night.
Strangely, she was pretty restless, so we worked our way up to 4 Risperidone tabs, her limit.
Then next day, Thurs., as I have mentioned, she was very sedate. This morning, although she is not up out of bed yet, she has showed signs of being more chipper and 'with it'. Yay!
I need tot wrap this up and get us going, but not before I wonder aloud again about the strangeness of ALZ. At school, we dealt with a lot of brain issues, traumatic brain injury, strokes, congenital brian abnormalities, cortical blindness. In my experience, brain functioning was fairly static, staying the same over time. We tried to access other parts of the brain for basic skills, by programming and repetition. With ALZ, functioning can seem lost, then magicallly reappear the next day. Our nurse, Niki, explains to me: "It's not a linear disease". That is my new mantra for the week.
.
Our trusted expert in geriatric/dementia care, our sister Kathy Fallon, says that there may come a time when Mom is just tired of eating, or just not interested any more. She also may forget to swallow, in which case, continuing to try to feed her will eventually induce choking.
I figure that she can choose to sleep or not, eat or not,, and so on. If you have other feelings on this, let's talk about it.
Alrighty then, talk to you later!
Love from the Home Office,
Annie and Gram
Notes on Marfan's Syndrome in the Fallon Family
Tim and I am awaiting our follow up appts with the cardiologist after my tilt table test, and Tim's cardiac ablation. Double checking Tim's rhythm, and EKG, and we still need to find a treatment for me to take...meds to make me keep water in my body so I don't dehydrate which causes low blood volume, and low BP, passing out. Or steroids to help with this as well.
I have found out that my low BP can also be associated with Marfan's and I have read that as well. So I am betting I have Marfan's too, Just not as severe as Tim's. So, it is probably in our sibling group generation, and you all have 50:50 chance to have gotten it from dad. And 50:50 chance to have passed it on to your kids. It is autosomal dominant (thus the 50:50 chance), so you only need one defective gene, not two, and you either get it or you don't.
The taller and more slender people have more of a risk.
Some symptoms of Marfan's: heart issues (May be Di Gorge Syndrome, which they also think Tim has), sleep apnea, scoliosis, hernias, spontaneous collapsed lungs, detached retinas, hypermobility in joints, low BP/fainting, chest malformations, malformation of jaw, etc. There are more, but these are some of the main ones. Many people don't even know they have it (like me-as I age, they are popping up) until someone else in the family is found out to have it. Can be so subtle, or all the symptoms very noticible.
Just passing on the word, and for you to keep an eye out for these things. I am really not trying to be a downer...I just want you to have this information in the back of your mind, if anything arises with yourselves, or the next generation of the Fallon clan.
Love to all of you.
Colleen
I have found out that my low BP can also be associated with Marfan's and I have read that as well. So I am betting I have Marfan's too, Just not as severe as Tim's. So, it is probably in our sibling group generation, and you all have 50:50 chance to have gotten it from dad. And 50:50 chance to have passed it on to your kids. It is autosomal dominant (thus the 50:50 chance), so you only need one defective gene, not two, and you either get it or you don't.
The taller and more slender people have more of a risk.
Some symptoms of Marfan's: heart issues (May be Di Gorge Syndrome, which they also think Tim has), sleep apnea, scoliosis, hernias, spontaneous collapsed lungs, detached retinas, hypermobility in joints, low BP/fainting, chest malformations, malformation of jaw, etc. There are more, but these are some of the main ones. Many people don't even know they have it (like me-as I age, they are popping up) until someone else in the family is found out to have it. Can be so subtle, or all the symptoms very noticible.
Just passing on the word, and for you to keep an eye out for these things. I am really not trying to be a downer...I just want you to have this information in the back of your mind, if anything arises with yourselves, or the next generation of the Fallon clan.
Love to all of you.
Colleen
Saturday, April 2, 2011
Mary Parsley"s Progress
Just returned from nine days at Moms. Susan was there also for most of the time. Sharon arrived Friday, as did her daughter Laura (which was a surprise for Sharon and Mom). Also Michelle Lamberty arrived today for an overnight. We are planning to have someone with Mom all of the time for about a month. She sees her surgeon on April 27 (her birthday).
Mom is doing wonderfully well. Has been able to get herself ready for bed and then dressed the next morning for three days! She struggles some and it is hard to watch that but she wants to do it and is determined so mostly we let her do it. Yesterday she wanted to learn about all of her medications so she, Sharon and I did that.
She has not attempted any cooking, but that will come. Her appetite has improved the last couple of days, which is good.
Just a quick up date to say all is going well!
Stephena
Mom is doing wonderfully well. Has been able to get herself ready for bed and then dressed the next morning for three days! She struggles some and it is hard to watch that but she wants to do it and is determined so mostly we let her do it. Yesterday she wanted to learn about all of her medications so she, Sharon and I did that.
She has not attempted any cooking, but that will come. Her appetite has improved the last couple of days, which is good.
Just a quick up date to say all is going well!
Stephena
Gram Tries Respite Care
Hello everyone,
Our most recent Gram news is that she has just returned from 5 nights in respite care. Our hospice program gives us 5 nights every 90 days, and the place where they provide this is at Sanford Hospital.
We tried this for three reasons. I have been needing a break, as Gram has not been sleeping well for quite a while. Also got a call for a 4-day subbing stint at my favorite school, and I want to keep my foot in the door there. It would be too hard on Gram to go out 4 days in a row to DayBreak. There is a new symptom that is coming and going, too. We never know when Gram will have a day when her feet 'don't listen', and seem to be stuck to the floor. On days like that, it is too dangerous for us to try to get out the front door, with the three steps we have there.
Thirdly, we have been wondering if Gram would be comfortable at a facility.
We decided to try it, and bring her home if she got more anxious there.
It worked out well, though, and we ended up having Gram there for all 5 days. We took turns stopping in every evening, and found that she was SO comfortable and cared for. Staff sat with her for the first 3 nights to make sure she would not get up and hurt herself. She did not try to do this, probably because she seemed to like her bed. She just snuggled right in at night, with her big fleecy blanket from home, and did great for the most part.
There was one night when she got a little anxious, and so she was given her anti-anxiety med. That handled the problem. Overall, she required much less medication for restlessness/anxiety over the 5 days there than she had for the previous 5 days at home.
The staff at Sanford was so friendly and willing to accept our recommendations for ways to work with Gram. They evidently have hospice patients 'visiting' quite often, and they were all ready to meet Gram where she is and go from there. Now if I need a break later on, we will feel OK about having her there.
Hugs and Such,
Annie
Our most recent Gram news is that she has just returned from 5 nights in respite care. Our hospice program gives us 5 nights every 90 days, and the place where they provide this is at Sanford Hospital.
We tried this for three reasons. I have been needing a break, as Gram has not been sleeping well for quite a while. Also got a call for a 4-day subbing stint at my favorite school, and I want to keep my foot in the door there. It would be too hard on Gram to go out 4 days in a row to DayBreak. There is a new symptom that is coming and going, too. We never know when Gram will have a day when her feet 'don't listen', and seem to be stuck to the floor. On days like that, it is too dangerous for us to try to get out the front door, with the three steps we have there.
Thirdly, we have been wondering if Gram would be comfortable at a facility.
We decided to try it, and bring her home if she got more anxious there.
It worked out well, though, and we ended up having Gram there for all 5 days. We took turns stopping in every evening, and found that she was SO comfortable and cared for. Staff sat with her for the first 3 nights to make sure she would not get up and hurt herself. She did not try to do this, probably because she seemed to like her bed. She just snuggled right in at night, with her big fleecy blanket from home, and did great for the most part.
There was one night when she got a little anxious, and so she was given her anti-anxiety med. That handled the problem. Overall, she required much less medication for restlessness/anxiety over the 5 days there than she had for the previous 5 days at home.
The staff at Sanford was so friendly and willing to accept our recommendations for ways to work with Gram. They evidently have hospice patients 'visiting' quite often, and they were all ready to meet Gram where she is and go from there. Now if I need a break later on, we will feel OK about having her there.
Hugs and Such,
Annie
Thursday, March 24, 2011
Mary Parlsey Update!
Hi to everyone! Well, Mom has progressed well and much to our suprise she will return home on Saturday! Yes, this Saturday March 26. She will come to the house tomorrow(Thursday) with OT/PT staff to determine what changes need to be made, besides those already made. Susan ans I will be there on Saturday, and I think Scott, along with Earl and possibly Cindy Lamberty, who has been there all week. I will stay for a few/several days. Sharon may be coming for a few days. This discharge day came much faster than we anticipated so we're still getting organized! Give us a bit to get Mom settled then visit when you are in the area and or when you have time. Love to all, especally "The Dish"!
-Stephena
-Stephena
Friday, March 18, 2011
Annie, I hope I have done this correctly and thanks for the chance to participate! Mom's address is 612 Wicklow Lane, Brookings, SD 57006 (The lady has lived in the same house for 50 plus years with four different addresses!)
I spent from Monday until noon today (Fri) with Mom. She is doing marvelously well! Today she was "transferred" from acute care to "swing bed" status. (No room change.) No, her bed does not swing! It means only that she is no longer in need of acute care but does need rehabilitation. She is working with both PT and OT in preparation for going home. We have heard from two weeks to 20 days. I am betting on two weeks or less. And then to home. Mom had surgery on Monday (3/14), a replacement of the ball of the hip joint. She was full weight bearing when they got her up on Wednesday, which went fairly well. Thursday she needed two units of blood (she insisted she wanted Irish blood only), and then there was no stopping her. She walked fifty feet Thursday and did some grueling exercises as well as beginning with Occupational Therapy (dressing, etc.). Friday she repeated the fifty feet and exercises in the morning then did about 200 feet and exercises in the afternoon.
I would give all of you her direct phone number but she has many visitors and phone calls and she really needs to work on rehab! When she goes home Susan, Sheila, Scott, Val, Stacia, Sharon
and I will work a rotation to be with her 24 hours a day for a while at least. We/she would be glad to have you visit any time (without charge for use of facilities Tom!) And she certainly loves to get cards.
Annie, thank you again for being allowed to participate!
I spent from Monday until noon today (Fri) with Mom. She is doing marvelously well! Today she was "transferred" from acute care to "swing bed" status. (No room change.) No, her bed does not swing! It means only that she is no longer in need of acute care but does need rehabilitation. She is working with both PT and OT in preparation for going home. We have heard from two weeks to 20 days. I am betting on two weeks or less. And then to home. Mom had surgery on Monday (3/14), a replacement of the ball of the hip joint. She was full weight bearing when they got her up on Wednesday, which went fairly well. Thursday she needed two units of blood (she insisted she wanted Irish blood only), and then there was no stopping her. She walked fifty feet Thursday and did some grueling exercises as well as beginning with Occupational Therapy (dressing, etc.). Friday she repeated the fifty feet and exercises in the morning then did about 200 feet and exercises in the afternoon.
I would give all of you her direct phone number but she has many visitors and phone calls and she really needs to work on rehab! When she goes home Susan, Sheila, Scott, Val, Stacia, Sharon
and I will work a rotation to be with her 24 hours a day for a while at least. We/she would be glad to have you visit any time (without charge for use of facilities Tom!) And she certainly loves to get cards.
Annie, thank you again for being allowed to participate!
Health and Wellness Report
Dear Family,
I am behind on what's happening in the family. There are a couple of people needing extra prayers right now, Linda Fallon and our aunt Mary Parsley.
I have written about Linda a couple of times, but here is the latest update, an email from Kevin.
Many of you have already gotten this, but I don't think he has all the addresses for nieces and nephews, so posting here.
"Hello Every one,
We got the Oncologist report back today there definitely was not any cancer in the lymph node and things came out pretty clean with the lumpectomy and it sounds like the treatment is going to be Radiation and hormone therapy, no chemo, we will know more when we go to the surgeon on Friday. Linda is in a little discomfort yet and cannot do anything physical for the next week and a half. Thanks for all your Prayers. Prayer does work.
Love Linda and Kevin"
In addition, you may not have heard that Mary Parsley fell and broke her hip. It will be 2 weeks ago this Sunday that it happened. She had surgery the day after, and we heard that she would be in the hospital for 10 days to 2 weeks. She may be home by now, or perhaps that will be in the next few days. Nevertheless, she faces some very tough recovery time and could use all the cheering up she can get.
Shoot! Can't find Gram's address book to give you Mary's address. In my book, I have her old one with a box number, before her street became Wicklow Lane. So here is a pasted-together version, without her house number. I am pretty sure it will still get there:
Mary Parsley
______Wicklow Lane
Brookings, SD 57006
Steph, if you see this, could you send me the correct address via email? I will get you set up to have posting rights here so that you could add other Parsley family news whenever you feel like it! Could you give us an update on how your mom is doing? I could call Brookings, but I am sure that phone is ringing off the hook and the people answering it are exhausted with telling Mary's news.
OK-have to get going. Volunteering at DayBreak today! Fun!
Love You,
Annie
I am behind on what's happening in the family. There are a couple of people needing extra prayers right now, Linda Fallon and our aunt Mary Parsley.
I have written about Linda a couple of times, but here is the latest update, an email from Kevin.
Many of you have already gotten this, but I don't think he has all the addresses for nieces and nephews, so posting here.
"Hello Every one,
We got the Oncologist report back today there definitely was not any cancer in the lymph node and things came out pretty clean with the lumpectomy and it sounds like the treatment is going to be Radiation and hormone therapy, no chemo, we will know more when we go to the surgeon on Friday. Linda is in a little discomfort yet and cannot do anything physical for the next week and a half. Thanks for all your Prayers. Prayer does work.
Love Linda and Kevin"
In addition, you may not have heard that Mary Parsley fell and broke her hip. It will be 2 weeks ago this Sunday that it happened. She had surgery the day after, and we heard that she would be in the hospital for 10 days to 2 weeks. She may be home by now, or perhaps that will be in the next few days. Nevertheless, she faces some very tough recovery time and could use all the cheering up she can get.
Shoot! Can't find Gram's address book to give you Mary's address. In my book, I have her old one with a box number, before her street became Wicklow Lane. So here is a pasted-together version, without her house number. I am pretty sure it will still get there:
Mary Parsley
______Wicklow Lane
Brookings, SD 57006
Steph, if you see this, could you send me the correct address via email? I will get you set up to have posting rights here so that you could add other Parsley family news whenever you feel like it! Could you give us an update on how your mom is doing? I could call Brookings, but I am sure that phone is ringing off the hook and the people answering it are exhausted with telling Mary's news.
OK-have to get going. Volunteering at DayBreak today! Fun!
Love You,
Annie
Thursday, March 10, 2011
News of Linda's surgery and followup
Hi everyone,
Kevin called tonight to talk about how their day at the hospital went.They are exhausted, and I asked if I could put an update on the blog for him. He agreed, and said he will also get some emails out tomorrow, but does not have all the addresses that we have for the blog.
Today Linda had a biopsy of the suspicious spot on the lymph node, and it was negative! She then had the lumpectomy, and is home now. It will be a tough few days, their surgeon said.
The breast tissue was sent to the oncologist. Next week, they will see the surgeon and the radiology specialist. Linda will have radiation and/or chemotherapy, if I understand it correctly, depending upon what the oncologist finds.
We are keeping you in our prayers, Linda and Kevin!
If you don't have their mailing address, it is:
7288 South Iris Court
Littleton, CO 80128
Annie
Kevin called tonight to talk about how their day at the hospital went.They are exhausted, and I asked if I could put an update on the blog for him. He agreed, and said he will also get some emails out tomorrow, but does not have all the addresses that we have for the blog.
Today Linda had a biopsy of the suspicious spot on the lymph node, and it was negative! She then had the lumpectomy, and is home now. It will be a tough few days, their surgeon said.
The breast tissue was sent to the oncologist. Next week, they will see the surgeon and the radiology specialist. Linda will have radiation and/or chemotherapy, if I understand it correctly, depending upon what the oncologist finds.
We are keeping you in our prayers, Linda and Kevin!
If you don't have their mailing address, it is:
7288 South Iris Court
Littleton, CO 80128
Annie
Monday, March 7, 2011
Hi again-surprise! Two posts in one week.
Yesterday was neat. Mary Parsley and Steph and Earl K. stopped in for a visit on their way to the Summit basketball tournament at the arena. They were going to root for SDSU, of course!
Mary looks fabulous, as always, and says she and Juanita are still very busy with orders for their beautiful textile art. She went to Hawaii in Feb. with Sheila, staying with Shaun on Maui. She had fun, but picked up bronchitis along the way, and spent many weeks recovering from that after she got home. Thankfully, she says she is at the tail end of that.
It was good to get caught up with Steph and Earl and the news of their family, too. Their son, Will, got married and lives in Lincoln now. More Nebraska connection!
Mom's friend, Donna Hicks, came over today. Mom was in a quiet phase, but she was a good listener. Donna asked her to sing 'When Irish Eyes Are Smiling", and Mom DID! She got through the whole first chorus (stanza? section?) with no mistakes, and in beautiful voice. It was wonderful! I have not heard her sing by herself and remember all the words in a long time. It was a cool moment, and a testimony to their friendship, I think.
Mom is walking so much better this week. We are walking more than using the wheelchair now. Previously, when she was off the memory meds, Mom had a lot of trouble accessing her feet. They seemed to be 'stuck' on the floor, and we had problems pivoting from, ie. bed to chair.
She now also remembers that she needs to turn around as she approaches a chair or the bed, so that she can sit. That had kind of disappeared for a while.
Bedtime is still tough, off and on. The last 3 days have been a mystery. Friday night, I don't think Mom slept an hour. I tried the different prescriptions she has for sleeping and also for pain.
In the morning, I thought maybe the memory meds that we restarted are now beginning to help her sleep again, and the anti-insomnia med (which we started while OFF the memory meds) was too much, perhaps making her feel restless.
So then, Saturday night, I did not give Mom the anti-insomnia meds. She slept like the proverbial, very happy baby. (She was sleeping so well, I could not get her out of bed until almost NOON! on Sunday. Well, that's not entirely true. I could have gotten her up, but she was NOT happy about that possibility, the times that I attempted this. Chalked it up to making up for Friday night.)
But, AhHA! I thought. That's it!! We will skip the sleeping med! At bedtime Sunday night I held it back again. Strangely, we had another night like Friday night.
Our hospice nurse came today and we hashed all this out. We are going to try just the pain med by itself. That is the only plan we have not tried yet. If we don't have a good night, I will call them tomorrow and we will come up with a new plan.
It is getting a little trickier figuring out what Mom needs, as she is having a harder time telling us what is wrong. We just keep trying different options. Hospice has been very good, and I know they will keep trying to help us work out the details.
Okeedokee.....I need to get going. Talk to you later!
Saturday, March 5, 2011
Liz just wrote me that she was looking for this blog, typed in trishthedish.net, and found a site for a buxom mature Florida woman who is a model of provocative poses.
LOLs all over the place! Secret lives.....
In real life, things with Gram are slowly declining. It is amazing how many steps there are to declining...It's OK though. She speaks a few intelligible words, and sometimes has a long yarn to tell. The story seems to be loosely connected bits and pieces of real or imagined memories, but try as hard as I may, I cannot follow the threads. Some of the times when I can understand her well are when she seems to have visions or sightings of people that I can't see. "Who is that little boy?" she will often ask, keeping her eyes focused on a certain spot on the wall or drapes. I ask her what he looks like, what color is his hair. She says it's red, sort of dark. I seem to lose her when I ask what he is wearing. It is so odd that I can't usually understand her speech except when these things happen. Kind of cool and interesting.
Most of the time, Gram can transfer pretty well from one chair to another, to and from bed, etc.
Kathy Fallon taught us a couple of techniques that helped a lot., when she and Steve were here last weekend. We also had some good talks and she shared a lot of other insights into eldercare, what it was like when she and her siblings cared for their mom, and so on. It was invaluable. Thank you so much, Kathy!
Gram can feed herself at least half of the time. Breakfast is usually her best time for that. Also, if the meal is something that she likes a lot, she does well. If the texture or taste or something else is not quite agreeing with her, we help her get the protein at least, then supplement with yogurt, pudding, Nutrigrain bars, etc. She also loves applesauce, pineapple, and bananas.
Some days Gram can ambulate very well with her walker, some days she can't maintain upright posture by herself. I have taken to sleeping with her every night, with her bed pushed up into the corner to help her stay in bed. She was getting out of bed by herself at night, and falling. (She only got as much as a bruise, once, otherwise did not seem to be hurt. There is the potential for her to break a hip or something else, so we will do what we can.) Now if she tires to get out of bed, she has to climb over me, or scoot out the end of the bed, which she has figured out pretty well! I usually put her wheelchair or other stuff there in order to give myself more time to wake up and catch her if she tries to get out that way. Most nights now, she only wakes up once, so that is not so bad. She just wants to go to the bathroom, so we both go, and that saves me getting up on my own later. That makes it a cooperative effort!
We could really use help caring for Mom the weekend of May 28th, when I will be gone to Alex's graduation. We have the hospice respite facilities on standby if we have to use them, but think Mom would do better if she could stay home. If anyone has time then, that would be so appreciated. We would need a female person to help Gram in the bathroom and with dressing. We could probably get a person from hospice to help with bathing, because there are more opportunities for falling then.
Let us know if you have any time to help out then. Paul and Tommy can sit with Gram, but don't do bathroom or dressing duty.
I will be flying out on Friday AM about 6 AM, and returning Mon. night about 11 PM.
Mary would take Mom for that weekend, but Rachael's baby is due the next week. You just never know! Randy will be out of town, so she needs to be available to go to Omaha if BG Wilmeth decides to make her appearance then!
On another note. if you have not heard, our sister Linda Fallon was diagnosed with breast cancer last week. It is a stage 0, which is good news. Today they met with her surgeon to find out more, but I have not heard how that went. Please keep them in your thoughts and prayers as they go through this.
Linda's email is: godblessit@hotmail.com
Kevin's is :kjamesfallon@msn.com
Okee-dokee, everybody. I should sign off and get going to other things. Take care, and thanks again for you calls and help!
Love, Gram and Annie
LOLs all over the place! Secret lives.....
In real life, things with Gram are slowly declining. It is amazing how many steps there are to declining...It's OK though. She speaks a few intelligible words, and sometimes has a long yarn to tell. The story seems to be loosely connected bits and pieces of real or imagined memories, but try as hard as I may, I cannot follow the threads. Some of the times when I can understand her well are when she seems to have visions or sightings of people that I can't see. "Who is that little boy?" she will often ask, keeping her eyes focused on a certain spot on the wall or drapes. I ask her what he looks like, what color is his hair. She says it's red, sort of dark. I seem to lose her when I ask what he is wearing. It is so odd that I can't usually understand her speech except when these things happen. Kind of cool and interesting.
Most of the time, Gram can transfer pretty well from one chair to another, to and from bed, etc.
Kathy Fallon taught us a couple of techniques that helped a lot., when she and Steve were here last weekend. We also had some good talks and she shared a lot of other insights into eldercare, what it was like when she and her siblings cared for their mom, and so on. It was invaluable. Thank you so much, Kathy!
Gram can feed herself at least half of the time. Breakfast is usually her best time for that. Also, if the meal is something that she likes a lot, she does well. If the texture or taste or something else is not quite agreeing with her, we help her get the protein at least, then supplement with yogurt, pudding, Nutrigrain bars, etc. She also loves applesauce, pineapple, and bananas.
Some days Gram can ambulate very well with her walker, some days she can't maintain upright posture by herself. I have taken to sleeping with her every night, with her bed pushed up into the corner to help her stay in bed. She was getting out of bed by herself at night, and falling. (She only got as much as a bruise, once, otherwise did not seem to be hurt. There is the potential for her to break a hip or something else, so we will do what we can.) Now if she tires to get out of bed, she has to climb over me, or scoot out the end of the bed, which she has figured out pretty well! I usually put her wheelchair or other stuff there in order to give myself more time to wake up and catch her if she tries to get out that way. Most nights now, she only wakes up once, so that is not so bad. She just wants to go to the bathroom, so we both go, and that saves me getting up on my own later. That makes it a cooperative effort!
We could really use help caring for Mom the weekend of May 28th, when I will be gone to Alex's graduation. We have the hospice respite facilities on standby if we have to use them, but think Mom would do better if she could stay home. If anyone has time then, that would be so appreciated. We would need a female person to help Gram in the bathroom and with dressing. We could probably get a person from hospice to help with bathing, because there are more opportunities for falling then.
Let us know if you have any time to help out then. Paul and Tommy can sit with Gram, but don't do bathroom or dressing duty.
I will be flying out on Friday AM about 6 AM, and returning Mon. night about 11 PM.
Mary would take Mom for that weekend, but Rachael's baby is due the next week. You just never know! Randy will be out of town, so she needs to be available to go to Omaha if BG Wilmeth decides to make her appearance then!
On another note. if you have not heard, our sister Linda Fallon was diagnosed with breast cancer last week. It is a stage 0, which is good news. Today they met with her surgeon to find out more, but I have not heard how that went. Please keep them in your thoughts and prayers as they go through this.
Linda's email is: godblessit@hotmail.com
Kevin's is :kjamesfallon@msn.com
Okee-dokee, everybody. I should sign off and get going to other things. Take care, and thanks again for you calls and help!
Love, Gram and Annie
Tuesday, February 8, 2011
Alzheimer's Assessment Tool
Hi again,
Have a virus in my computer, and it kicked me out of blogspot twice. I lost some text and the Alz list. So attempting the list again:
Have a virus in my computer, and it kicked me out of blogspot twice. I lost some text and the Alz list. So attempting the list again:
February 8, 2011
Hi everybody,
We have a few new things going on with Gram. Over the past few weeks, she has had some difficulty from time to time with her mobility. She would be good one day and have some instability while walking on the next day. This past weekend, though, she had her most challenging days yet. She had trouble moving her feet to walk, and we had to prompt her, "right foot, left foot" to help her get going and to continue moving. She had a great deal of difficulty getting into Mary's car on Saturday. We always have her back into the car, sit down, then swing her legs in, to avoid having her stand on one leg during the process. On Saturday, she just could not back up close enough to the car to get her bumper safely on the seat. We had to restart many times, and physically prompt, too, before she made it. She seems to be having trouble coordinating motor functions, especially when they get a little complex. Walking and going down the front steps makes her uneasy and fearful of falling.
The motor troubles began about the time that we stopped using the memory meds. We wonder if restarting them will help her with her motor functioning. We are going to try that to see what happens.
Mom had a difficult night last night. She began to have anxiety, which is characterized by shallow, fast breathing, and a worried look on her face. We have had a med called Ativan for anxiety, which has worked pretty well. However, when she has anxiety at bedtime, we don't use it because she will be getting Tamazepam, a sleep aid, at that time. Previously, this strategy has worked well, but last night it did not. Mom continued to show symptoms of anxiety, and it was escalating. By 3 AM I gave her an Ativan, and by 4 AM she finally was able to settle down.
Today I contacted Hospice to ask if I should have given the Ativan at bedtime with the Tamazepam, and they have a message in to Dr. Ecklund. They will call us when they have an answer. They usually get an answer the same day; they seem to have a hotline to anyone we need, which is great.
Our hospice nurse forwarded an assessment for Alzheimer's patients, that lists functioning levels in the progression of the disease. I am going to attempt to paste it here or attach it so you can all see it. When you ask how Gram is, we have been able to describe what she is still able to do. Sometimes I have felt a little lost, because I wished I could know what to expect next. This assessment is not the Holy Grail of Alzheimer's information, it is just one tool that can be a part of.
We have a few new things going on with Gram. Over the past few weeks, she has had some difficulty from time to time with her mobility. She would be good one day and have some instability while walking on the next day. This past weekend, though, she had her most challenging days yet. She had trouble moving her feet to walk, and we had to prompt her, "right foot, left foot" to help her get going and to continue moving. She had a great deal of difficulty getting into Mary's car on Saturday. We always have her back into the car, sit down, then swing her legs in, to avoid having her stand on one leg during the process. On Saturday, she just could not back up close enough to the car to get her bumper safely on the seat. We had to restart many times, and physically prompt, too, before she made it. She seems to be having trouble coordinating motor functions, especially when they get a little complex. Walking and going down the front steps makes her uneasy and fearful of falling.
The motor troubles began about the time that we stopped using the memory meds. We wonder if restarting them will help her with her motor functioning. We are going to try that to see what happens.
Mom had a difficult night last night. She began to have anxiety, which is characterized by shallow, fast breathing, and a worried look on her face. We have had a med called Ativan for anxiety, which has worked pretty well. However, when she has anxiety at bedtime, we don't use it because she will be getting Tamazepam, a sleep aid, at that time. Previously, this strategy has worked well, but last night it did not. Mom continued to show symptoms of anxiety, and it was escalating. By 3 AM I gave her an Ativan, and by 4 AM she finally was able to settle down.
Today I contacted Hospice to ask if I should have given the Ativan at bedtime with the Tamazepam, and they have a message in to Dr. Ecklund. They will call us when they have an answer. They usually get an answer the same day; they seem to have a hotline to anyone we need, which is great.
Our hospice nurse forwarded an assessment for Alzheimer's patients, that lists functioning levels in the progression of the disease. I am going to attempt to paste it here or attach it so you can all see it. When you ask how Gram is, we have been able to describe what she is still able to do. Sometimes I have felt a little lost, because I wished I could know what to expect next. This assessment is not the Holy Grail of Alzheimer's information, it is just one tool that can be a part of.
Saturday, January 22, 2011
MOP mystery
I am not sure why, but blogspot calls me MOP. They did not even give me a chance to put my name in, I don't think, when I started this. Maybe they did, but I missed it.
Once upon a time, when Matt and Liz were in Italy, I commented on one of their blog posts. I signed myself MOP (Mother of Pearl), because Matt used to call me that in emails.
I suppose there is a place I can edit this, but won't worry about it right now. No, I don't think of myself as a mop. It's OK.
I sometimes sign my emails to Arica and Alex as MOA1 and MOA2....don't you just love secret family cryptography?
Once upon a time, when Matt and Liz were in Italy, I commented on one of their blog posts. I signed myself MOP (Mother of Pearl), because Matt used to call me that in emails.
I suppose there is a place I can edit this, but won't worry about it right now. No, I don't think of myself as a mop. It's OK.
I sometimes sign my emails to Arica and Alex as MOA1 and MOA2....don't you just love secret family cryptography?
Updates-Cabin Fever, etc.
Howdy everyone,
Thought I should write with some Gram news today. A couple of things have been happening.
After I wrote last time, Mary, Tom and I talked about the effects of the memory meds on Gram's functioning. We thought they maybe caused all the extreme sleepiness, loss of balance, and general drop in function. As the disease progresses, it seems like a teeter-totter: now that she is farther along, the memory meds seem to make her groggier than they once did. We recently did a trial of Aricept, but Gram could barely walk while taking that, even at a very reduced dose. We discussed the issue of quality of life vs. longevity--what was the right thing to do? We decided to have a trial period of having Gram off the memory meds, to see how she would be. So far, she has been more 'present'. In the last few days, she has admitted to being 'hornschwoggled' several times! She had previously quit such little personality expressions. She is back to often doing a quick hula dance when I sing the hokey-pokey to get her to 'turn yourself around' for sitting. Ha! That's fun. She has not said her famous toast lately, but who knows? It is just great to see some of her old self. Gram is not sleeping all day as she was before, so we have taken her back to DayBreak. She is able to participate there somewhat, and they say that her functioning level is appropriate for being there.
We would like the opinion of the rest of you siblings as to what you think is the right thing to do. Post on this blog, so we can get all of our input in one place, if you can-vote for keeping memory meds, or not keeping them.
The next issue I want to tell you about is that Gram has had another fall. I did not hear her get up, and found Gram sitting on the floor in her bathroom at about 4 AM Friday morning. This time, however, she seemed really confused. She was not able to do our 'get up onto a chair' technique of getting on all fours, then climbing onto a chair I bring. We tried for about 45 minutes, but it was beginning to stress her out. I could have called Mary to help me, but thought I should call the hospice nurse to get Gram assessed anyway, so why wake up Mary when the nurse would help me get her up, too? I called hospice, and they sent a nurse, we got Mom up into a chair, and assessed her. It turned out that nothing was broken! Yay! We gave Mom a pain pill just for preventive measure. I went to work, as I had a day of subbing lined up, and she went to DayBreak, where she had a pretty good day. They said that she napped for a couple of hours in the afternoon.
We were tired last night. Gram was up twice in the night, but went to the bathroom and then right back to bed. We did not get up until 10AM! Gram still seems a little tired. About a half-hour ago she began to get short of breath again. I tried the calming techniques, but they did not seem to help, so I gave her an Ativan. She was determined to stand up and walk then, and she was shaky at it. I took her to her bedroom, thinking she could sit in her rocker for a while. She headed for the bed, so that's where we went. I will see how she is doing in a little while. We have to not let her sleep too much in the daytime, or she can't sleep at night. Maybe she is still getting over the stressful fall incident.
Another issue, just so you know the whole picture, is that Gram is continuing to lose weight. She is down to 175 from 205 last spring. We are not sure why this is happening, as she seems to be consuming about the same amount of food. We have had to chop or grind up meat for her, as having to chew a lot exhausts her. I make soup fairly often because it is easy for her to eat, and she seems to like it. I can run that through the blender if we need to, and call it 'creamy chicken soup', and it does not look too weird. On the other hand, some foods do not look very appetizing when ground or pureed. In addition to changing the texture of some of her foods, we have added Boost to her daily intake. Hospice, bless their hearts, sent us 2 cases after I told them of the weight loss. Gram likes it. I even used the vanilla on her oatmeal, instead of milk, and she ate all of it.
There might be something else going on with Gram that is causing her weight loss. At the present time, we are not looking for that. All the procedures, X-rays, scopes, etc. would be so difficult for her. In addition, I do not think we want to put her through a surgery to correct anything we might find, would we? The last time she had surgery, when her knee was replaced, she had a very difficult time recovering from anesthesia. Mary and I felt that she lost a lot of cognitive functioning at that time...it was more like a huge 'dropoff' instead of the gradual loss we had been seeing. So there is the potential for that to happen again, if she has a surgery. I doubt a surgeon would agree to work on her, as she is just not in great health to begin with.
If any of you have any comments on how we are doing things, please weigh in, either here or to our personal emails. We are all in this together, even though we are separated by many miles, in some cases. If you have an opinion or suggestion, please let us know about it.
For this next week, Gram and I will go to DayBreak on Monday for a few hours. I have volunteered to do some valentine art with the participants. Our hospice social worker is coming on Tues AM to give me some ideas on activities for adults with limited cognitive functioning. I ran out of those, as Gram either could no longer do the ones we had been doing, of seemed uninterested. I have a sub day tentatively lined up for Wed., also, if Gram is doing OK then.
I love the hospice people. They have been so supportive; I am really glad that the DayBreak nurse suggested we give them a call.
Okee Dokee.....that is about it for now. Hope I covered all the bases. If you want things to be done differently, please email, blog, or call us, so we can talk about it.
We love you,
Annie
Thought I should write with some Gram news today. A couple of things have been happening.
After I wrote last time, Mary, Tom and I talked about the effects of the memory meds on Gram's functioning. We thought they maybe caused all the extreme sleepiness, loss of balance, and general drop in function. As the disease progresses, it seems like a teeter-totter: now that she is farther along, the memory meds seem to make her groggier than they once did. We recently did a trial of Aricept, but Gram could barely walk while taking that, even at a very reduced dose. We discussed the issue of quality of life vs. longevity--what was the right thing to do? We decided to have a trial period of having Gram off the memory meds, to see how she would be. So far, she has been more 'present'. In the last few days, she has admitted to being 'hornschwoggled' several times! She had previously quit such little personality expressions. She is back to often doing a quick hula dance when I sing the hokey-pokey to get her to 'turn yourself around' for sitting. Ha! That's fun. She has not said her famous toast lately, but who knows? It is just great to see some of her old self. Gram is not sleeping all day as she was before, so we have taken her back to DayBreak. She is able to participate there somewhat, and they say that her functioning level is appropriate for being there.
We would like the opinion of the rest of you siblings as to what you think is the right thing to do. Post on this blog, so we can get all of our input in one place, if you can-vote for keeping memory meds, or not keeping them.
The next issue I want to tell you about is that Gram has had another fall. I did not hear her get up, and found Gram sitting on the floor in her bathroom at about 4 AM Friday morning. This time, however, she seemed really confused. She was not able to do our 'get up onto a chair' technique of getting on all fours, then climbing onto a chair I bring. We tried for about 45 minutes, but it was beginning to stress her out. I could have called Mary to help me, but thought I should call the hospice nurse to get Gram assessed anyway, so why wake up Mary when the nurse would help me get her up, too? I called hospice, and they sent a nurse, we got Mom up into a chair, and assessed her. It turned out that nothing was broken! Yay! We gave Mom a pain pill just for preventive measure. I went to work, as I had a day of subbing lined up, and she went to DayBreak, where she had a pretty good day. They said that she napped for a couple of hours in the afternoon.
We were tired last night. Gram was up twice in the night, but went to the bathroom and then right back to bed. We did not get up until 10AM! Gram still seems a little tired. About a half-hour ago she began to get short of breath again. I tried the calming techniques, but they did not seem to help, so I gave her an Ativan. She was determined to stand up and walk then, and she was shaky at it. I took her to her bedroom, thinking she could sit in her rocker for a while. She headed for the bed, so that's where we went. I will see how she is doing in a little while. We have to not let her sleep too much in the daytime, or she can't sleep at night. Maybe she is still getting over the stressful fall incident.
Another issue, just so you know the whole picture, is that Gram is continuing to lose weight. She is down to 175 from 205 last spring. We are not sure why this is happening, as she seems to be consuming about the same amount of food. We have had to chop or grind up meat for her, as having to chew a lot exhausts her. I make soup fairly often because it is easy for her to eat, and she seems to like it. I can run that through the blender if we need to, and call it 'creamy chicken soup', and it does not look too weird. On the other hand, some foods do not look very appetizing when ground or pureed. In addition to changing the texture of some of her foods, we have added Boost to her daily intake. Hospice, bless their hearts, sent us 2 cases after I told them of the weight loss. Gram likes it. I even used the vanilla on her oatmeal, instead of milk, and she ate all of it.
There might be something else going on with Gram that is causing her weight loss. At the present time, we are not looking for that. All the procedures, X-rays, scopes, etc. would be so difficult for her. In addition, I do not think we want to put her through a surgery to correct anything we might find, would we? The last time she had surgery, when her knee was replaced, she had a very difficult time recovering from anesthesia. Mary and I felt that she lost a lot of cognitive functioning at that time...it was more like a huge 'dropoff' instead of the gradual loss we had been seeing. So there is the potential for that to happen again, if she has a surgery. I doubt a surgeon would agree to work on her, as she is just not in great health to begin with.
If any of you have any comments on how we are doing things, please weigh in, either here or to our personal emails. We are all in this together, even though we are separated by many miles, in some cases. If you have an opinion or suggestion, please let us know about it.
For this next week, Gram and I will go to DayBreak on Monday for a few hours. I have volunteered to do some valentine art with the participants. Our hospice social worker is coming on Tues AM to give me some ideas on activities for adults with limited cognitive functioning. I ran out of those, as Gram either could no longer do the ones we had been doing, of seemed uninterested. I have a sub day tentatively lined up for Wed., also, if Gram is doing OK then.
I love the hospice people. They have been so supportive; I am really glad that the DayBreak nurse suggested we give them a call.
Okee Dokee.....that is about it for now. Hope I covered all the bases. If you want things to be done differently, please email, blog, or call us, so we can talk about it.
We love you,
Annie
Saturday, January 8, 2011
We're BLOGGING!
Hi everyone! Randy had a great idea-we should make a blog to help keep everyone up to date on what we are up to at 1100 W. 5th Street. I had to call this one
GrammaTrishTheDish.blogspot.com, as other ones I would have preferred were not available.
--at least I think that is what I called it. I will share it with siblings, and then you can see the address, and subscribe. If you subscribe, you will get our news each time we post. There may be some bugs in the system (my technology skills) that I will have to figure out, but here goes, anyway (this is my first blog).
Gram stays very happy. She always tries her best to do whatever we ask of her. We are blessed, because ALZ is not always so kind to families. Many elders become aggressive and/or uncooperative, and so far we have never seen any of that. She seemed to really enjoy Christmas, especially when she got to hold or play with Jayden. She remembered Morgan and Molly, and that was wonderful.
Gram had been going to DayBreak whenever I would get a day of substitute teaching. The last time we went there was Dec. 17th. Mom had been having difficulty participating there, and was sleeping most of the time. She needs almost 1-to-1 interaction to be able to stay awake and somewhat aware. She was having difficulty staying awake and feeding herself, during meals at DayBreak and at home. Some meals she does not need any help with, and during other meals, we feed her almost all of it. Another feeding issue is that she can get exhausted with having to chew enough to complete a meal and get enough nutrition. Soft foods, such as oatmeal and applesauce work well, so sometimes we puree other foods that would require a lot of chewing. I love our $19.99 'Magic Bullet' knockoff! It's so much easier to use than a full-size blender or food processor. We have a mini food processor too, but I still prefer the Bullet.
Since Gram can't participate at DayBreak very well, I have stopped taking her there. They never said that she was no longer appropriate for their program-they are so good to us. I worked there for a few months last spring, and continued to volunteer there one day a week up to a couple of weeks before Christmas. We are pretty close with the staff there. One of the women that works there has become a good friend, and stops over now and then. So, you see, they love Gram a lot and I am sure they did not want to have to ask us to find an alternative. Gram is the only one that slept all the time, and I know that the goal is to have participants active, except for regular rest times.
All this is leading up to the fact that I had a discussion with the DayBreak nurse, and she suggested that we contact hospice for some help at home. I was so surprised; I thought hospice was more for the final weeks of life, for illnesses like cancer. I guess they also work with ALZ patients! I guess the point is to help families keep their loved one at home. We called them, they came over and gave Gram a brief eval, and she qualified for their services. Everything is paid for by Medicare and Gram's Postal Worker's insurance. I am sure you are startled to hear that Gram is getting hospice services, but this is quite different from the idea of 'hospice' that we have in our heads.
.
Here is a current list of what they are doing for Gram:
-a nurse visits twice a week to evaluate Gram, make sure that any new needs are taken care of.
-the nurse is our connection with Dr. Ecklund, Gram's primary physician.
-we don't have to make her go in the car to the clinic any more-the nurse and dr. take care of
any concerns that we bring up. Dr. orders any meds needed, and Lewis Drug delivers them to
the house!
-hospice provides any comfort-related meds at no expense to Gram-it is all covered! For example, Gram has lately had some trouble with being short of breath. Dr. tried a drug called Ativan, and it stopped the episode. The diagnosis is that these are anxiety attacks, probably brought on by not understanding her environment, and being apprehensive about 'what will happen next' and 'how will I get "home?" '
Gram has been particularly anxious at dark, when she maybe feels she has stayed long enough, and polite guests should know when to go home. She begins to talk about her dad coming to pick her up, "or should I start walking home?" This is one of the only sad times of our day, usually. She is so sincere, and her feelings are so real. This is also the time of day that she was most likely to have an anxiety attack. Can you imagine if you did not recognize your surroundings, or the people with you, and had no way to go anywhere else (and did not know where to go, if you could go)? I am amazed that Gram does as well as she does. She is pretty amazing! She responds to the Ativan and our reassurances.
other comfort-related meds are: any pain meds, meds for diarrhea, constipation, and probably other situations I don't know about yet.
-they also brought us a wheelchair, so we can get out, go around the block (exercise for me), or go to the mall for some walking (exercise for both of us-Gram could walk behind the chair as much as she could, then ride). We don't want her walking outside right now because of the ice.
-they brought us a commode, which we could place by Gram's bed for nighttime use. Right now, she is getting up on her own to use the bathroom, and if the commode was right there, she would not have to work hard trying to find a place to go potty. (Sometimes she goes right to the toilet, other times I hear her go past my door while looking).
-I am going to ask if hospice has any alarm systems, so that I can always know when she is up. I have tried sleeping with her so I would not miss any 'wakeups', and that just makes her not sleep so well. Last night I missed one, then heard Gram humming, and found her happily curled up on the floor in the living room! I asked her what happened, and she said she fell. She said she was not hurt. I checked her all over, could not find any sore spots, but we will have to check again for bruising today. I felt terrible! It appears she wandered until she ran into the side of a chair in the LR, lost her balance and fell. Some ideas I have are putting a tall gate across the hallway near her room (the walk-through kind of gate, that takes two hands to open--I wonder if she would be able to open that? :) ) The bedroom and bathroom have more open walk space, night lights, etc. We could also keep a lamp on in the living room, but that might confuse her when she goes looking for the bathroom. We will just keep working on this until we get a better way.
-hospice will help us keep up Gram's nutrition. They will supply any shakes, like Ensure, to make sure she gets enough calories/protein each day, if she is too tired to eat. A nutritionist will come to see us if we need that, with lots of ideas on how to maintain good nutrition.
-a social worker came to visit yesterday. She will be our liason with any other agencies, such as County Human Services, etc., if we need that.
-we could get a home health aid, who would help with housework, or a personal care aid, who would help with bathing. We don't really need this right now, but if we get really busy with Gram someday, we might take a little help. I think this is mostly for homes where an elder lives alone, or for an elderly couple, where one cannot assist the disabled one to bathe, etc.
Other things going on:
-Gram is having trouble with vision. It seems that it is something like cortical blindness, where the problem is in the area of the brain that processes what comes in through the eyes. If those brain cells are not working, Gram's brain cannot make sense of what is coming in. She often says, 'I need to get my eyes checked'. She does have macular degeneration, and when she started commenting on her vision, we took her to Dr.Tufty, her opthamologist. He checked her eyes, and said there was really no change there to account for the worsening vision. We ended up repeating this visit a few months later, just to be sure. His opinion was the same. Evidently, the lutein she has been taking has slowed/halted the macular degeneration, so he sees no further deterioration of the maculae. The only other possibility is ALZ plaques in the vision processing center of her brain. This gets complicated by the fact that Gram, like many other ALZ patients, often closes her eyes. Sometimes I will give her something, like a cup of coffee, and say, "Here you go, Gram, a nice cup of coffee". She may say, "I can't see it", but she also has her eyes closed. :-) She does open them with a reminder....
Other than the things mentioned, Gram's other body systems are doing pretty well. Heart, lungs, etc. are doing well. We keep lotion on her religiously, to avoid dry, itchy spots that she has gotten other winters. The most beautiful thing is that she seems to know she is loved and safe, when we explain who we are, and that this is her house, and she does not have to leave it. We explain this a lot, especially when she seems to be getting anxious, or dark is coming on.
Our overall goal is to not have to take Gram to a nursing home. We think she will be less anxious here, if she can remember anything about this environment. A new environment undoubtedly would cause more anxiety. And we want to make sure that things get done in the ways that work best for her, that we have found out by trial and error.
OK, I hope this is not too overwhelming. We will include the fun things, too! Our latest fun thing is Dahlia, Sarah's cat, discovering a little clay rattle. I will try to post some here, otherwise you can find them on my Facebook page.
Thanks, everyone, for your contacts and calls! We love them!
Go ahead and comment on this blog about any family news if you want to. Maybe we can use this to keep up on everybody. I have to find out how to give you all rights to add photos, etc.
Love to all,
Gramma Pat and Annie
GrammaTrishTheDish.blogspot.com, as other ones I would have preferred were not available.
--at least I think that is what I called it. I will share it with siblings, and then you can see the address, and subscribe. If you subscribe, you will get our news each time we post. There may be some bugs in the system (my technology skills) that I will have to figure out, but here goes, anyway (this is my first blog).
Gram stays very happy. She always tries her best to do whatever we ask of her. We are blessed, because ALZ is not always so kind to families. Many elders become aggressive and/or uncooperative, and so far we have never seen any of that. She seemed to really enjoy Christmas, especially when she got to hold or play with Jayden. She remembered Morgan and Molly, and that was wonderful.
Gram had been going to DayBreak whenever I would get a day of substitute teaching. The last time we went there was Dec. 17th. Mom had been having difficulty participating there, and was sleeping most of the time. She needs almost 1-to-1 interaction to be able to stay awake and somewhat aware. She was having difficulty staying awake and feeding herself, during meals at DayBreak and at home. Some meals she does not need any help with, and during other meals, we feed her almost all of it. Another feeding issue is that she can get exhausted with having to chew enough to complete a meal and get enough nutrition. Soft foods, such as oatmeal and applesauce work well, so sometimes we puree other foods that would require a lot of chewing. I love our $19.99 'Magic Bullet' knockoff! It's so much easier to use than a full-size blender or food processor. We have a mini food processor too, but I still prefer the Bullet.
Since Gram can't participate at DayBreak very well, I have stopped taking her there. They never said that she was no longer appropriate for their program-they are so good to us. I worked there for a few months last spring, and continued to volunteer there one day a week up to a couple of weeks before Christmas. We are pretty close with the staff there. One of the women that works there has become a good friend, and stops over now and then. So, you see, they love Gram a lot and I am sure they did not want to have to ask us to find an alternative. Gram is the only one that slept all the time, and I know that the goal is to have participants active, except for regular rest times.
All this is leading up to the fact that I had a discussion with the DayBreak nurse, and she suggested that we contact hospice for some help at home. I was so surprised; I thought hospice was more for the final weeks of life, for illnesses like cancer. I guess they also work with ALZ patients! I guess the point is to help families keep their loved one at home. We called them, they came over and gave Gram a brief eval, and she qualified for their services. Everything is paid for by Medicare and Gram's Postal Worker's insurance. I am sure you are startled to hear that Gram is getting hospice services, but this is quite different from the idea of 'hospice' that we have in our heads.
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Here is a current list of what they are doing for Gram:
-a nurse visits twice a week to evaluate Gram, make sure that any new needs are taken care of.
-the nurse is our connection with Dr. Ecklund, Gram's primary physician.
-we don't have to make her go in the car to the clinic any more-the nurse and dr. take care of
any concerns that we bring up. Dr. orders any meds needed, and Lewis Drug delivers them to
the house!
-hospice provides any comfort-related meds at no expense to Gram-it is all covered! For example, Gram has lately had some trouble with being short of breath. Dr. tried a drug called Ativan, and it stopped the episode. The diagnosis is that these are anxiety attacks, probably brought on by not understanding her environment, and being apprehensive about 'what will happen next' and 'how will I get "home?" '
Gram has been particularly anxious at dark, when she maybe feels she has stayed long enough, and polite guests should know when to go home. She begins to talk about her dad coming to pick her up, "or should I start walking home?" This is one of the only sad times of our day, usually. She is so sincere, and her feelings are so real. This is also the time of day that she was most likely to have an anxiety attack. Can you imagine if you did not recognize your surroundings, or the people with you, and had no way to go anywhere else (and did not know where to go, if you could go)? I am amazed that Gram does as well as she does. She is pretty amazing! She responds to the Ativan and our reassurances.
other comfort-related meds are: any pain meds, meds for diarrhea, constipation, and probably other situations I don't know about yet.
-they also brought us a wheelchair, so we can get out, go around the block (exercise for me), or go to the mall for some walking (exercise for both of us-Gram could walk behind the chair as much as she could, then ride). We don't want her walking outside right now because of the ice.
-they brought us a commode, which we could place by Gram's bed for nighttime use. Right now, she is getting up on her own to use the bathroom, and if the commode was right there, she would not have to work hard trying to find a place to go potty. (Sometimes she goes right to the toilet, other times I hear her go past my door while looking).
-I am going to ask if hospice has any alarm systems, so that I can always know when she is up. I have tried sleeping with her so I would not miss any 'wakeups', and that just makes her not sleep so well. Last night I missed one, then heard Gram humming, and found her happily curled up on the floor in the living room! I asked her what happened, and she said she fell. She said she was not hurt. I checked her all over, could not find any sore spots, but we will have to check again for bruising today. I felt terrible! It appears she wandered until she ran into the side of a chair in the LR, lost her balance and fell. Some ideas I have are putting a tall gate across the hallway near her room (the walk-through kind of gate, that takes two hands to open--I wonder if she would be able to open that? :) ) The bedroom and bathroom have more open walk space, night lights, etc. We could also keep a lamp on in the living room, but that might confuse her when she goes looking for the bathroom. We will just keep working on this until we get a better way.
-hospice will help us keep up Gram's nutrition. They will supply any shakes, like Ensure, to make sure she gets enough calories/protein each day, if she is too tired to eat. A nutritionist will come to see us if we need that, with lots of ideas on how to maintain good nutrition.
-a social worker came to visit yesterday. She will be our liason with any other agencies, such as County Human Services, etc., if we need that.
-we could get a home health aid, who would help with housework, or a personal care aid, who would help with bathing. We don't really need this right now, but if we get really busy with Gram someday, we might take a little help. I think this is mostly for homes where an elder lives alone, or for an elderly couple, where one cannot assist the disabled one to bathe, etc.
Other things going on:
-Gram is having trouble with vision. It seems that it is something like cortical blindness, where the problem is in the area of the brain that processes what comes in through the eyes. If those brain cells are not working, Gram's brain cannot make sense of what is coming in. She often says, 'I need to get my eyes checked'. She does have macular degeneration, and when she started commenting on her vision, we took her to Dr.Tufty, her opthamologist. He checked her eyes, and said there was really no change there to account for the worsening vision. We ended up repeating this visit a few months later, just to be sure. His opinion was the same. Evidently, the lutein she has been taking has slowed/halted the macular degeneration, so he sees no further deterioration of the maculae. The only other possibility is ALZ plaques in the vision processing center of her brain. This gets complicated by the fact that Gram, like many other ALZ patients, often closes her eyes. Sometimes I will give her something, like a cup of coffee, and say, "Here you go, Gram, a nice cup of coffee". She may say, "I can't see it", but she also has her eyes closed. :-) She does open them with a reminder....
Other than the things mentioned, Gram's other body systems are doing pretty well. Heart, lungs, etc. are doing well. We keep lotion on her religiously, to avoid dry, itchy spots that she has gotten other winters. The most beautiful thing is that she seems to know she is loved and safe, when we explain who we are, and that this is her house, and she does not have to leave it. We explain this a lot, especially when she seems to be getting anxious, or dark is coming on.
Our overall goal is to not have to take Gram to a nursing home. We think she will be less anxious here, if she can remember anything about this environment. A new environment undoubtedly would cause more anxiety. And we want to make sure that things get done in the ways that work best for her, that we have found out by trial and error.
OK, I hope this is not too overwhelming. We will include the fun things, too! Our latest fun thing is Dahlia, Sarah's cat, discovering a little clay rattle. I will try to post some here, otherwise you can find them on my Facebook page.
Thanks, everyone, for your contacts and calls! We love them!
Go ahead and comment on this blog about any family news if you want to. Maybe we can use this to keep up on everybody. I have to find out how to give you all rights to add photos, etc.
Love to all,
Gramma Pat and Annie
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