I realise the title may seem a bit mean but as a family we are stuck and feel we have run out of options.
My father is in his 90’s . His wife died this year from dementia related issues. She had noticeable dementia for over 10 years but the last two years were brutal .
She had become very difficult to deal with and was violent at times. He barely managed that during the day but obviously got tired and at night she would wake with no idea where she was and would smash things up either in rage or fear. After an incident she had a fall and was hospitalised for treatment. A decision was made between my sister and social services to move her from the hospital to a care home. My father was very angry about this and has essentially cut my sister out of his life. After entering the care home my mother unfortunately took a fall. While still conscious she was unaware of her surroundings and us for the last 9 months of her life. She died during lockdown which nobody was able to attend.
With hindsight let me say the following things which may help other people at this phase
- I recognised my mothers decline long before my father (because I live a long way away didn’t see her as often). I should have pushed harder for testing and social services support.
- My father gave the best care he could give. That care was not good enough. He never had a break, he got tired and grumpy and he had no way to cover nights or gain perspective. You cannot argue with dementia. He did - a lot.
- He thought everyone offering help either wanted money from him or was an idiot - that includes his family. He would not allow intervention of any kind . The ultimate decision to move my mother into care, and which care home , were selected by purely events, not by choice.
If you are in a similar position I strongly suggest you make a plan. Don’t let events choose for you. - Visit. Even if they don’t recognise you, they will get better care. The act of observation changes the behaviour of the observed.
My father lives in a huge badly maintained very old listed property. He is hoarding. He has no clothes washing or hot water facilities. The property is damp because he wont put hot water or heating on. Some of the ceilings have collapsed. There are rats and mice. Because of my mothers problems he removed the door handles internally and they have not been replaced. He will not allow anyone to repair, clean, or throw anything away. Any minor successes I’ve had have been followed up with an email that says I don’t need to bother to visit. I’ve tried sympathy, empathy and anger over time. His response is to ask me when I’m going home.
I have tried several times over the past 15 years to open a dialogue with him with on my mothers care and then on perhaps moving to a smaller easy to maintain property or even sheltered accommodation . He rejects everything as either a threat or an insult. I have suggested I fund a lawyer for him to get advice. He says all lawyers are crooks. My brother has probably made the most progress. He has been permitted to tidy the garden but cannot touch the house or throw anything away. As a family we did have a brief and sensible discussion about power of attorney in 2010. He has since then did nothing more with it and refuses to respond to any questions on it.
We’re stuck. His mental and physical health is declining. I can only see this going the same way as my mother where we cant choose but an event will choose for us. We have asked the doctor and social services for help but they seem to be unable or unwilling to do anything during the lockdown and find him “difficult” to deal with. I have taken legal advice which basically says “he has the right to make bad decisions” .
My brother has told me my father has a volunteer who helps with some clothes washing and transport - she has never been inside the house and we don’t exactly know who she is. I have thought about tracking her down but am not sure on what expectations I could expect on confidentiality and perhaps joining my sister on the never be spoken to again list…
My desire for my father is safe, comfortable and happy. None of those things seem possible currently.
Any suggestions welcome.