So this afternoon I have a meeting with the Care Home Manager for my mothers CHC assessment checklist.
I requested she do it about a month ago and have had to chase. I am nervous she doesn't think it is worth it, but will see this afternoon, and in the meantime was going to share my forthcoming journey to see if it helps anyone in future, or anyone has any pertinent advice.
My mum has Alzheimer's, evident from 2019. Formally diagnosed rapid onset in July 2020, by which time I decided to place her into a care home - having tried to get carers in, she often sobbed, went wandering when they were not there, tried to escape when they were, hugely overdosed on her thyroid medication, and eventually got violent and police involved etc. I have dual LPA on my own - no other close family / friends of hers, so do it alone (with the support of you lovely forum people).
Fast forward her progressive decline...
The duty nurses have agreed with me that when she is undergoing another rapid decline the tell tale is she gets very aggressive - they test her for a UTI (with difficulty), which has been positive before, but they believe this is just as a result of refusing personal care, and it is an increase in her trazadone that eventually helps.
In these episodes it can take four carers just to have basic hygiene care. She will bite, slap and punch. Last month, in the middle of the night, she punched another resident in their sleep, pulled the hair of another (I still feel awful about this). She will refuse food, drink, medicine, or anyone getting near her. Eventually, after agreement with the GP to up her trazadone and some specialist care and encouragement by a couple of the staff (often putting her drink next to her and walking away / watching at a distance), some covert meds begins to bring her round. Usually this has involved the Care Home Support Services (CHSS) mental health team coming in to support the staff in her care plan and psycho-social interventions.
Consistently - she is doubly incontinent. She doesn't know where she is and gets upset easily by questioning as she doesn't understand and gives incoherent answers. As her only visitor, she does not recognise me as her daughter. She has lost ~10kg in 3 months due to sparodic eating / drinking and needs prompting. Her meds are covert and have been for a while. She cannot form full / coherent sentences, often talking to me about the "sick girls who come up from the mill" and how busy she is working to care for them and how she worries for someone who needs to get away but can't. There are other random trains of thought that come out, I piece some like these together after 30-45 minutes with her mumbling, I say very little, just agree with her and reassure her, "I'll get that sorted, you know I always do" to which she smiles.
If I offer her a drink, she struggles to make a choice e.g. water or cranberry juice? But if I say "I'm getting some juice, did you want some?" She will usually say yes. She used to spend her days wandering the corridors of her floor at the home, pacing, could not sit still. She wanders less now, her ankles and feet swollen as she often just sits in a chair mumbling to herself rather than go to bed, she will shuffle about, usually slowly and using the handrails in the corridors. TV, reading, jigsaws, games etc are all not possible.
She's had two falls in the past few months, one was more of a fall off her chair / found on the floor. She used to help the lifestyle team with activities, now she doesn't interact with anyone and usually won't leave her floor (unless tempted down by the icecream van)- she's shouted before about people being on her property when shuffling about.
I've visited before and she's been shivering in her chair saying she is cold, when she has a blanket next to her, so I've immediately wrapped her up. I've also found her trying to reach her shoes and fiddle a few times, I can usually determine this is pain, as she's had problems with her feet and toes historically. She has a pain patch (if she doesn't manage to rip it off!)
Her medicine has a sedative effect, so has periods of being very passive, very quiet and obedient. Even letting the inhouse hairdresser given her a wash and dry at times.
Her DoLs was only done in February this year (part-pandemic backlog, part falling between some gaps) and it is pretty damning saying she needs 24-hour care, cannot make decisions, has no concept of time, place or people.
I am hoping given her behaviour and unpredictability, combined with other needs, will be enough.
She has always been self-funding, but potentially won't last until the end. She worked so hard all her life, always full time, worked towards three degrees and a Masters whilst working. I know if she was able to, she'd be asking me to fight for recognition that her care is above that which social services could provide, and is primary health care needs now.
So, wish me luck I guess!
LostLiz x