Managing cognitive decline and end of life

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

  1. 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.
  2. 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.
  3. 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.
  4. 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.

Steve , what a horrendous situation you and your family are in, you seem to have tried all avenues to help him, but to no avail, I’m sorry but I haven’t any ideas to help, if social services got involved I don’t suppose they would let them in, because of the rats etc, it is a definite health risk, not just to him but also the neighbours, you could talk to the council, but as the lawyer says he can do as he pleases, hopefully somebody else on the forum who has been in this sort of situation, will be able to help you, my thoughts are with you all xx

Dear Steve,
Having read your post I can’t get it out of my mind. It is such a sad situation. Like Jude said, it sounds like you have tried all avenues to help your father. He sounds like his own worst enemy and you and your siblings must feel like your hands are tied.
In recent months I have read some posts from other people who have been in similar situations. If you type ‘hoard’ in the looking glass in the right hand corner of the page you will see their posts.
In my daytime job I have had to do courses on Safeguarding, and learned that self-neglect is a form of abuse, but a very difficult one to deal with because of the fine line between our responsibility to protect the person and their right to live the way they want to, even it is harmful. My husband works a s a carer for the elderly in the community and in the 20 years he has been doing this work he has come across many situations where people were either neglecting themselves or were at risk of harm from the spouse they were looking after, On rare occasions the only way a situation could be resolved was to get a person sectioned, but only as a last resort I hope you will never have to go down that route and that you will eventually get the support from GP and social services that you are looking for.
Until then, my suggestion would be to continue to be there for your dad, to let him know that you love him, and concentrate on him as a person, rather than on all the things he does/does not do, or all the things you would like to for him. We cannot change other people, the will to change has to come from them.
AgeUK has a lot of helpful leaflets. The one in this link has information you may find helpful, in articular the sections on self-neglect (page 7), the duty of the local authority (pages 8-10) and the role of the Court of Protection (page 19).

It would be good if you could find out more about this volunteer your brother mentioned… Maybe she could support your request for help. If she works for an organisation, she could raise her concerns and they could maybe do something from their end. That way, your father can not put the blame on you if something gets done. When my mother was neglecting herself after my father dad, nothing we said to her worked. In the end we asked one of her carers to raise concerns, and she got the right help in place so that we could concentrate on just being her children rather than constantly having to worry about her state of mind. Like you, all we wanted was for her ‘to be safe, comfortable and happy’. I hope that you will see this happen with your father.
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Dear Steve, what a terrible situation and such a worrying time. The two community volunteers have kindly offered some advice and possible routes to go down. My sister in law works for AgeUK and she goes into houses to clean, shop etc. If she has concerns then it can be reported to the relevant agencies. Also the local authority can and should be of help, particularly with vermin. You could try contacting environmental health or get the neighbours to. As the lockdown eases perhaps try the GP and social services again. I do hope you can sort something Steve as it’s a horrible situation for all concerned. Let us know how you get on. Sending love x

I forgot to mention Steve that all local authorities will have a First Point of Contact. You can find the number by ringing the council general enquiries. They can be very helpful. Good luck.