I don’t even know where to start. This week has been so awful. So sad. So confusing. And so out of the blue. Not that I had any right to expect a warming from Alzheimer’s.
But that’s been our history. The pattern. The M.O. Mom gets sick (usually pneumonia), mom declines rapidly. Mom gets well. Mom rebounds physically and to a small extent, mentally. There is always a giant piece of her memory that gets lost, but her ability to function in the moment has always come back strong. Even after a trip or two to ICU.
But not this time. This time, no illness, no fall, no trauma, no major life change. Just one day making her own bed, dressing herself, going to the restroom unassisted. And the next day, not able to get out of bed. She sat up. She got her feet on the floor. And that’s where she got stuck.
This weekend we’ve been up and down and really down. She’s spent far more time in bed than out. But she talks about getting up. She asks to go sit in her favorite rooms and places. She wants to join us for dinner (even though I think she thinks it’s a big dining room like at her assisted living facility). But she hasn’t left her room.
She hasn’t been able to stand alone. She hasn’t been to the bathroom. She isn’t eating. She is frightened. And I am so worried.
This is so new and I’m not sure how to handle it. I want to push her, but not hurt her. I want to encourage her, but not make her feel badly because she can’t do something. I want to make sure she is taking her medicine, but if she’s not eating…is it still okay to give her full doses?
And, I threw a major fit on Friday with the home health supervisor over an LVN that was coming to see mom…so they have been in my home and VERY attentive. 99% of the folks we have had in our home have been so good with mom. We just got one that didn’t mesh with me, I guess. Either way, I think they are not happy with what happened and don’t want to lose our business because of it. And I don’t want to change either – I think of mom’s home health aide as part of our family. I adore her PT and the PT supervisor. I want to make it work.
So, we have a new nurse who specializes in Alzheimer’s and we got a visit from the PT supervisor and the social worker and got the ball rolling on hospice. We have an egg crate mattress cover coming and 2 giant packs of depends and tubes of barrier cream and some resource numbers on the way.
Which is great…but what about mom. She’s uncomfortable. She’s in pain. She has stopped moving her body because ‘it hurts’. She is not eating enough to ever get stronger. And she has lost most of her words. Top that all off with a big dose of anxiety.
I’m still getting her up and dressed. I think it helps. I let her stay in bed on Saturday because I was all alone and it was too hard and I was too unsure. I thought maybe a day in bed might ease the pain in her wrist and heal whatever else is ailing her. NOPE! Bad idea.
So, I get her up. I get her dressed. I am no longer asking her to do many things. It’s too hard. She can’t do them anymore. I make her bed. I cut her food. I brush her teeth. I put the denture cream on her dentures. I tie her shoes. Today I even had to put the glasses on her face.
Yesterday we found the beginnings of a bed sore. I am freaking out. I know how bad those things can get and how painful. I do not want that for mom. So, now I have to adjust her sitting positions and her legs and the pillows and how she lays in bed. But the nurse confirmed that I should get her up and dressed as long as I can. It does seem to put her in a better mood. And it will help her not develop any more sores.
She is also favoring one shoulder, one hand, the opposite leg and leaning to one side. The leaning is new. The shoulder, hand, leg stuff has been off and on for years…but now it’s all at the same time. The leaning freaks me out. The PT thinks it’s in an effort to make all the things that are hurting hurt just a bit less by positioning herself that way. Who knows. There are stories all over about Alzheimer’s patients and the leaning.
The worst part of it – she is lost. Completely lost in her mind. She is scared. She is sad. She cries out continuously for her mom, her brother, me, my daddy, her mahmaw and sometimes just to God to help her. I can be sitting right beside her and when she cries out. It’s like she can’t see me or hear me. She is lost somewhere in her brain and all the jumbled up memories.
No one should have to go through this. No one. She tries to talk and the words just don’t come. Or they do come, but they don’t make sense. They are strings of words that were never meant to go together in a sentence. And I can see in her eyes that she is looking for an answer from me. I’m just relying on instinct to answer the incomprehensible questions. Thankfully, most of the time she smiles and seems happy. But maybe she’s already forgotten what she was trying to ask or she’s just happy someone is with her.
And I’m so tired. I feel physically exhausted, but I think it’s just the stress. And I ache. The lifting and pulling and squatting and pushing to get mom up and down and changed and in bed and onto her side is taking it’s toll on this old body. And oh my goodness – sitting on the floor at mom’s feet so I can be close to her is a chore…when did I get so old. I just pray that the neighbors aren’t watching me as I try and get back up once I’ve been down on the floor for too long…it’s Monty Python! I haven’t been able to get to the pool, so I’m trying to think of this as my workouts until I can get back to swimming!
Whatever it is – if I sit down for a minute – I doze off. And then I pace the house all night worried about mom. I hear her calling out. I logically know that she can’t get out of bed or over the rails, but logic seems to have no stronghold on Alzheimer’s…so I worry.
That’s it – that’s where we are. Stuck. For no apparent reason. With no real plan. And no real hope. But no real threat of the end. Just stuck in worry and sadness and frustration and sweat and tears. It’s part of it. Part of being a caregiver. Part of the bargain. The deal. The trade-off for having a parent that lives to be a ‘ripe old age’ and is “otherwise healthy” were it not for the Alzheimer’s….stuck.
As always – prayers are so appreciated.