Hello all. Long post alert.
First posted here back in September when I had a crisis with mums mobility after her consultant reduced her parkinsons meds to try to reduce her hallucinations. Silly doctor. It was a UTI with a very strong hold all along.
Just got her relatively stable for 3 short weeks and the consultant rings to increase the pregabalin he prescribed in September for leg pain. I don't know why he did this.
Within one week her mobility was rubbish again, her coordination was poor, overnight incontinence. And then on 31/10 she had a fall overnight and I found her on the floor having laid there for at least 10 hours. She was very distressed and cold. She was taken to A&E where I learned she'd also had a heart attack, brought on by the stress of laying on the floor for hours and hours.
Cue the next two weeks where instead of getting better with treatment she just got worse and worse. She literally became like a zombie. Couldn't move independently, couldn't eat or drink without help. And for all her mobility issues mum had always been sharp. Now she was off her head somewhere else. I thought this is it. Dementia has kicked off. Doctors told me to start looking for a care home place.
I then thought to look up pregabalin on drugs.com as it was the only recent change. Holy shit. All the side effects were exactly like they were describing my mum. I took my concerns to the consultant and asked him to take her off it, which he said he would do but could only wean her off slowly because it's withdrawal effects can be horrific.
Well yes they were. As she slowly regained her mobility so delirium kicked in, which was a blessing really because this meant she moved off the social pathway home and onto the health pathway. This meant I could press for her to move to respite instead of going straight home.
So after 6 weeks in hospital (where I visited every single day) she moved into a respite bed and today, after being there for just over a month, she has finally come home.
She has a care package in place for next 4-6 weeks but she'll be on her own the rest of the time, including overnights.
All the tech the OT said mum would get for coming home has not come. But there's a delivery of equipment coming tomorrow for her.
She's had a stairlift fitted (own expense) but took her a few go's trying to turn the seat with her feet / hands and I'm still not confident she's going to be able to do it in her own tonight to get to bed.
I've now left her and I'm not sure what time the carers are going in tonight. I've set the alarms back up in her phone to remind her to take her drugs until the pivotal box arrives.
Trouble is in theory all this 'support' stuff Occ therapy can provide sounds great. The reality is none of it is there or set up for the day she arrives home. It all feels like a great big risk.
However this catastrophic situation has meant that now is the time to reestablish some boundaries. I want to be her daughter and not her carer. As she declined so much and so quickly last year I just stepped up until the point I was suffocated by her needs. When the social worker in the hospital asked me what I could do in terms of care I said nothing. You can not rely on me. But I only had the strength to say that to her from reading the advice on your posts.
If your still here thanks for reading. Cockroach all