All very familiar stuff. I live 400 miles from my mother who has lived on her own for over 20 years. (she lives in Scotland so the care arrangements might be slightly different there) As she has aged, she has needed more help. I have been doing that remotely, organizing things, managing her finances etc. Difficult to know when her dementia started but it was obvious a few years ago that she was exhibiting the early signs. I discussed this with her GP but nothing happened until she had some UTI/delirium event and the GP referred her for assessment. She was assessed as having Alzheimer’s and was assigned a psychiatric community care nurse. I also involved social services and arranged for a basic homecare package, which the council arranged and funded.
She had another delirium event, (but at least by this time she was getting visits from the care workers) , and ended up in A & E, was discharged and two days later ended up being taken to a specialist dementia care unit of a large Psychiatric hospital. She was there for 7 weeks (which she hated) but at least was safe and was getting assessment and care.
She was assessed as being able to live independently with a homecare package, once the council had fitted some handrails and safety equipment in her house (all free to us) .This worked fine for a while although she needed more and more help from me as she was less able to go shopping. She went out and got lost a couple of times and seemed determined to accept the minimum help from the carers. The inevitable happened and one day I received a call from the care provided saying there were fire engines at her house. She was in a really bad way babbling incoherently and had causes a fire in the kitchen, probably leaving something on the cooker.
She was taken to hospital was diagnosed with delirium, probably caused by a UTI and assessed as not being capable of independent living. She went form there to a (really nice but not cheap) care home in Feb 2020 and is still there. Has all the same issues as others on the post, wanting to go home, asking for parents, etc etc.
The pandemic has been really bad for her, and she has continues to deteriorate. Good days and bad days. Care home staff are great.
The point of this extended story is that Dementia is a horrible, progressive disease. Sometimes with spells of stability and sometimes rapid deterioration. You can’t really know how it will go.
She was lonely and unhappy at home, so a care home was on the cards but my point is that if you worry too much about arranging a care home “too early”, then you never know what might happen.
Some individuals seem to settle OK in care homes, but most seem to have issues. There are often no good decisions you can make, only less bad ones.
If you recognize this story, and you are some way down the path I have described, then hopefully this might help you with decisions you might have to make.
