I’m trying not to panic. I would appreciate help thinking up a good routine. Apologies for the length. I’ve tried to split it up.
Background:
My dad was my mother’s primary carer. I did all their cooking, shopping, healthcare appointments and admin and some of the cleaning. He helped her with everything else and was with her most of the time. Dad got cancer and I (along with my siblings) nursed him at home until he passed away last week. My siblings have returned to their homes (100s of miles away). They are supportive from afar but my brother works off shore and is about to become a dad and my sister has preschool children and lives two flights away. They used up all their leave to help with dad.
Her Situation:
She has had Alzheimer’s for a few years and needs support getting washed, dressed, all meals. She needs someone to help her to bed and to stay overnight because she’s terrified of the dark. She is usually continent and reasonably cheerful. She ok-ish during the day and enjoys being given wee jobs like dusting to do but needs supervision. From about 5pm she stops knowing who anyone is, where she lives, what’s happening. Her mood darkens and she can be cross and fearful. She has declined significantly since dad became ill and more so since he died.
My situation:
I live next door. I have three primary children and a stressful ft job. I’m currently off work on bereavement leave but will need to return soon. My husband is supportive but also works.
Carers:
She has carers 3x 15 minutes. They come at 10.30, 5.30 and 7.30. She’s afraid of the evening carers and very resentful of them being there. If I can hold her off from getting dressed the morning carers will help with washing and dressing but it’s quite late to start the day. She likes the morning ladies. I’ve approached a private carer but not heard back. The council carers tell me there’s not much out there.
Friends and family:
She has a good friend who comes to take her out an afternoon a week which she loves as long as it’s not to any dementia related event or place. Other people with memory issues upset her. At dad’s funeral various family offered to sit with her sometimes.
Future:
There are no places in the local care homes and anecdotal reports suggest that isn’t going to change plus it’s over £2k a week. Social work aren’t returning my calls. We live very rurally. It is likely that I will care for her until she becomes physically ill/dies.
Questions:
How do I set up a routine that allows us to manage?
Are there templates or planning tools I can use?
What should I get the carers to do? These times are not useful for her current routine and I don’t know what to use them for.
What tips do you have for helping me help her?
How do I get her to accept care?
What can I get my siblings to do?
How do I manage my own mental health because currently I feel overwhelmed and ill?
Are there benefits I or she can access?