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.
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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