Yesterday was the same, normal day. Rather like Groundhog Day around here for past few weeks. I am not at all complaining. It is a routine that all seem able to live and cope with.
Aunt was admitted to hospital in mid November due to fall that fractured ribs and a vertebra. After surgery and 10 days in hospital bed barely moving, her mobility had gone from actively moving around house with no assistance to hardly able to stand with 2 people assisting. No walking. It was a big shock/crisis for us, since we had no idea how do the appropriate care with such an immobile person and didn’t know if change was permanent or not. Luckily, I’ve had a little nursing training, and tried to pick up all I could from nurses in hospital, and we had a lot of home services after discharge. So even though she never regained her previous mobility level, she has gotten back to being able to walk with a frame with wheels and one person as assistance.
With all that said, it is actually a benefit to us carers that she did lose some mobility. I hope that doesn’t sound too awful, but now she is at little danger of falls since she can’t ambulate independently, and isn’t chasing us all over the house or escaping out the door when agitated.
Normal day now is up at 8, mood good usually so we always bathe her in morning. Bed baths except on Saturdays. I stay home until 9 to help with this. Then she goes to her lift chair in living room, and I go to work. We have a over lap tray for her food. She is on purée diet now. Chewing was wearing her out and she would take more than an hour to eat. At noon, my 2nd oldest daughter is done with work, so she assists oldest Dau (main carer) to take Aunt to bathroom. She is fully incontinent, but if we take her to toilet, she will usually go in there which is great when you have fecal incontinence. It requires two people because if she gets angry with personal care or has a mess, you need one person to keep her standing and holding on to frame, and one to clean her up. We never know when or if she will kick off. She is on a very high dose of anti-psychotics, but they are not effective at completely eliminating aggression and violence.
Then back to lift chair until 4-5. We have found that the later we wait to take her to her bed, the worse she becomes in the evening with sun downing as far as working herself up, so she is toileted, changed to nighttime incontinence pants, and put in bed at 4-5. 80% of the time, this will make her angry and violent. If she can see anyone when like this, she will just keep being agitated, so being alone in her room gives her time to calm down for supper. She has a hospital bed, so we sit her up and give her supper/tea about 6:30 or 7. I’m home from work at 7, so I lay her bed flat and make sure she has her room warm enough before turning off her light at 8. She sleeps through the night without issue since she has side rails on bed and can’t get herself out of bed even if she didn’t. I have a video monitor in her room so I can keep an eye on her without going in there.
Then the next day, we do it all again. Like I said, very Groundhog Day.
Right now, we don’t usually take her anywhere because the stimulation is just too much for her and I don’t want her to end up yelling and swearing at strangers, and it’s winter. But I hope in the spring, we can take her out for walks in her wheelchair.
I know another decline will come, I just don’t know if it will be days, or weeks, or years. Every decline comes as a shock and with sadness even though you know to expect it. She no longer knows anyone’s names, though I think she sees some people as familiar. Most of the time she can’t even tell you her own name and is largely non-verbal except when agitated. She just exists. No real life or understanding, rarely smiles, never laughs. In past 6 months, she has lost a lot of physical and mental capacities. It’s so hard to just see them disappear before your eyes with nothing you can do to help it.