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In caregiving for a person with a condition that gets progressively worse, like dementia (and I'm sure many other conditions), there are losses, small and large, expected and unexpected. The large losses are mostly expected, and we mourn them. We mourn the small losses, too, but I'm guessing they are often surprising to us.
I'm starting this topic to see whether caregivers in our group want to share some of the surprising small losses.
(When I originally thought of doing this forum post, I had some losses in mind for my older sister, Edna. Right now I can't really think of any "good" ones. I'll put a couple of weak ideas, just as idea joggers for you other members.)
She does not remember how to cover herself with a blanket when she is chilly, even when the blanket is right beside her.
Edited 072310 to add:
When a door is half open, she does not seem to understand what to do with it, that is, how to push it open so she can go through it. Sometimes she will stand there and wiggle the lever handle, and call me to help. Sometimes she will close the door, and close herself in. I plugged the night-light back in in the bedroom after she shut herself in, in the dark.
I'll add some others as I think of them.
Last Edited on: 7/23/10 9:51 PM ET - Total times edited: 1
is 81, and suffers from dementia. We moved her to a nursing facility in December, but the care was just too bad and we ended up moving her in with me. I get mixed blessings from her living with me. I find myself stressing over her condition more and more. Now she has forgotten how to use the toilet. Not that she doesn't go to the restroom, she just plays with her undergarments and tries to make them into a cup to catch what she's doing. She doesn't understand anymore that it goes in the commode.
She doesn't remember that my dad passed away nearly three years ago. She asks me every night when he's coming to get her and take her home.
Dementia is a horrible, horrible disease! I think I'd rather lose the ability to be mobile than to lose my mind. I've watched and cared for both of my parents' as they have progressed downward with the disease. I have been told that it's worse on the caregiver than it is the patient, but I don't know so much about that.
Edna does not realize any more the way gravity works, how to hold things so gravity does not win.
She will hold or wave a glass any which way, and be shocked when it spills.
When she is eating with a spoon, she will point to something with a spoonful, and usually not even notice when the food falls out on the tablecloth or towel.
This is nothing really new, but it just hit me afresh, reminding of the depth of her losses.
I had been taking the tags off some new socks. After I finished, Edna was sitting with a rolled-up pair of socks in her right hand.
I put a few pieces of a broken-up cookie in the palm of her left hand. (She is left-handed.)
She asked, What's that?
A: Yes, cookies.
A: In your hand.
She thought a moment, then put the hand with the socks in it to her mouth.
A: No, the other hand. (and took the socks away from her)
(She asked this several times, and never realized there were things in her hand, though I pushed on them 2 or 3 times so she could feel something was there. In fairness to her, the pieces were small, and tan. so she may not have been able to see them)
I finally picked them out of her hand and put them to her mouth.
A bit later, I handed her a larger piece, and she noticed and ate that OK.
But it hurts.
I look at my dad and wonder where he went. :(
I can't tell you how many times he has asked me what's wrong with him, why can't he remember anything anymore, tells me he feels so stupid.
I read something the other day about chapters. Chapters in our lives, how things would be easier to accept if we looked at them as chapters.
The dementia journey has just begun with him, and it's going to be a race between his heart giving out or his mind.
Yes. It hurts. But you are not alone.
A few days ago, I walked into the bathroom; Edna had been walking around our place, and went in there a few minutes ago.
I noticed she seemed to have something in her mouth. I did not remember her having had anything to eat recently, and she had not been chewing on any "leftovers" earlier.
When I asked, she took it out and gave it to me. It was a ROCK. A chunk of cut granite about 2 inches by 1 1/2 that I had brought back from a stoneyard on a Maine island. (We went to New England last year, for 2 weeks) I kept it in the soap dish on the wall, along with a few other souvenir pebbles and shells. Of course, I moved all those immediately.
She has tried to eat non-food items before, but almost always in connection with a meal. Thinks like jelly packets or sweetener packets that she sees while waiting for food. I have found her mouth full of shreds oh paper a couple of times, like a paper towel or napkin.
This is not a "small" loss. But this seems to be the best place to put an update for Edna. Thanks to everyone for all the love that you show to others on this forum.
Edna fell the last part of September, hitting her head on the corner of a table. The doctors think the fall was caused by a seizure. They took her off the anti-stroke medication that the previous doctors put her on, and onto an anti-seizure med. There was no damage likely to be lasting shown on a brain scan, though there was some bleeding inside her brain as well as from her scalp. But she has apparently "forgotten" a lot about balance. She has been in a wheelchair nearly full time since then. I believe it is harder also for her to communicate now.
Unfortunately that leaning backwards and *refusing* to stand up straight is pretty typical of dementia patients. Dont know how many times I have gone to stand someone up, and they nearly break my back with that leaning backwards stuff!
Dementia/Alzheimers is so hard, its like you watch your loved one die twice, the first time when they forget who they are, and not knowing who you are, and then their true final passing.
And YES dementia is actually harder on us, then on the patient, why is this? Because they live in their own little world where, in their minds, if we just left them alone and let them live their life, they would be fine.
I have many stories, some sad some more cheerful, some funny, that I could share, I love being a caregiver, and I will always be one.
At the moment I am not working in a nursing home/hospital setting as I have the past number of years. I am a live in aide for a family friend, she drives me BONKERS some days! She is a severe diabetic and refuses to understand that what she eats effects her entire day. She has had 3 strokes (one that struck her blind in the left eye) and it messed up her balance, and her thought processes. This past Oct she had a heart attack, and THAT scared me straight! Now Im the food and medicine Nazi, but I dont care.......her health comes FIRST, then her feelings. I love her dearly, but she is just so neglectful of her health.
Okay, I have hogged this enough, have a good one, and Linda, remember to give your sister a hug every day, you are lucky in that you are able to keep her home with you, alot are unable.