New to the forum and very worried.

[jaws]

Hello to you all.

My father has a diagnosis of advanced alzheimer's. He lives alone, near to myself and my brother. He was diagnosed about 18 months ago but we had been trying to get him to see his GP way before this. The situation as it is at the present time is that he has carers from an agency visit 3 times a day for personal care and help with meals. By the way, we had to fight tooth and nail with him for this as her was insistent that 'I know what I need to know and do what I need to do - and that's it!!' He also goes to a day centre twice a week and we transport him. We visit him daily but we all work full time as well. The social worker who assessed his needs has closed the case now.

Dad has started to urinate up has kitchen cupboards; soil himself at times; go to bed with all his clothes on - shoes as well; refuse personal care; be sexually inapropriate with me; wander at night banging on neighbours doors and shouting; get lost when he goes out during the day; and he does not recognise us as his family any more. He says he has no family and hasn't seen them for years. He thinks we are his friends. He gets de-hydrated as he doesn't eat or drink unless you put things in his hands.

He did not want to go to the day centre at first but now likes it and asks if he can go to 'his club' often. Whenever we go to see hime he is always curled up in a ball on his sofa. He gets very depressed and says he wants to die.

As a family, we don't know whether he would have a better quality of life living in a care home now. It's such a hard decision. Our parents had my nan living with them and they always told us never to do that with them as it put their lives on hold until my nan died - and my mom died shortly after that. After mom died dad used to ask me to finish him off rather than put him in a home. I think I would end up battering him if he lived with me and it brings tears to my eyes to say that - I feel so guilty. He's always been such a good dad to us.

How do we know when it is the right time for a care home? We would appreciate any support or constructive advice at all.

Ta. Sorry it's lengthy!!

 

[Lucille]

Dear Jaws

There are plenty of people on here who can comment on your situation from their personal experiences. My mum isn't as far on as your dad sounds, so I don't really feel able to give any practical hints or tips. What I will say, however, is that I think you might have answered your own question. From the description you have given, I would suggest that your dad needs to go into a care home.

As for the Social Worker closing the case. They did this with my mum but now 12 months on are involved once again. I think you need to speak to your dad's GP, (maybe get the GP to visit your dad at home to see how he is 'coping' ... clearly, he isn't) and hopefully further intervention will be forthcoming.

I think at some point, we have all blithely said to our friends/relatives, that we wouldn't put them into a home or some such remark. There comes a point though, that ultimately your dad could become a danger to himself. You have mentioned his dehydration. The fact that amongst the other things mentioned, he is also wandering, means that he is vulnerable. You also need to think of you and your family - you have lives to live as well. Don't feel guilty - the fact you're posting on here says a lot about how much you care for your dad.

 

[Nebiroth]

From what you say, I would suggest that you ought to be looking at residential care now. If nothing else because of the risks to himeself caused by the wandering and not eating/drinking and being very depressed, and the risk to others if he is knocking on neighbours doors or to you with inappropriate behavior etc.

From what you say I don't think that his staying with you is an option. I think that it has reached the point where professional care is needed in a secure setting (which sounds worse than it actually is).

The most usual route is to go through the GP. Hopefuly the GP will see how unable to care for himself dad is, even with visiting carers, things have gone beyond that now. Bang on all the doors you can find and demand that action be taken. Make sure that all concerned understand the risk you feel dad is in if things are left as they are. Be prepared to contact Social Services and say that it is an emergency.

Everyone at some time has probably said they never want to go into a care home or asked their family to promise that they will never be placed in one. However, sometimes circumstances dictate that promises have to be broken in the best interests of all concerned.

Many people with dementia will insist that they are "alright" and that there is "nothing wrong". It can make it extremely difficult to get them to accept thay are ill and in need of care.

Perhaps it is possible to persuade dad that a care home is simply his "club" where people are able to stay full time, like a "hotel" say.

 

[Grannie G]

Dear jaws,

From your post, I would certainly say your father needs care. I`m not sure whether or not he is at risk, but he does need attention.

My mother wasn`t doing anything like the things he does when she went into residential care, so I feel your father is more than ready.

If he likes day care, couldn`t you tell him he can go every day, and even sleep there if he wants to. That might be a way forwards.

SS will give you a list of homes to visit and I wish you luck.

Please let us know how you get on.

Take care

Love xx

 

[blue sea]

Dear jaws
My experiences support the views of the others who have replied to you. It seems to me that your dad would be safer, more comfortable and probably happier now in full time care. The thing with this illness is that the deterioration continues - sadly there is no hope of an improvement in your dad's ability to cope. He has now lost the ability to care for himself in any meaningful way and therefore needs professional, full time care. Don't feel guilty about this. Your dad's needs go beyond what you could manage in your own home. It is a really difficult stage to face up to, I know. If you get a proper assessment carried out of your dad's medical and welfare needs, you will then have a professional view on the matter to help you decide what is best. There are some very good homes out there so it's worth doing your research and visiting several, checking inspection reports etc. It sounds as though your dad would accept such a change now, even if he can't fully understand what is happening.
Good luck with it all.
Blue sea

 

[Skye]

Dear jaws, I have to agree with what everyone else has said. It certainly doesn't sound as if your father should be living alone, and if he lived with you you would soon be at breaking point trying to cope with him.

Don't worry about your promise, it's a promise that has hels so many people to ransom, and it's neither fair nor realistic. No-one knows how AD is going to develop, but we all know that in the later stages the help of professionals becomes essential.

Try to spend some time visiting some NHs. I think you'll be pleasantly surprised. Most of them these days are clean, attractive places, with wonderfully caring staff. There are exceptions of course, but you'll quickly spot them!

Do give it a try, I'm sure you know the time has come. Let us know how you get on,

 

[cariad]

Hi, I think the time is right when you start to seriously ask yourself that question. It's always going to be a hard decision but nevertheless one that needs to be made. I wish you all the best at this difficult time.

 

[christine_batch]

Welcome to Talking Point,
Firstly, I cannot understand why the S.W. closed the case. I agree wholeheartly with previous threads, you need to go down the path of a Care Home. I was told a year before my husband at the age of 61 had to go into a Care Home, saying I will not give in and it resulted with my disability getting worse. My Doctor telling me if I did not let them put Peter into a Care Home Peter would out-live me. As I have 4 children and 6 grandchildren, I had to take stock of my life. With due respect you have a life of your own and when a person needs 24/7 care your father will receive it and at least you will know that he is safe.
Wishing you all the best. Christine

 

[Canadian Joanne]

I must agree with the other posts. It sounds like your father is ready for full time care now.

I like Sylvia's suggestion that he can go to his "club" every day and even stay overnight. It could be presented as a holiday away for a week or two. I know it is very difficult, but learning to lie for a greater good is something everyone here has done at some time or another. If he enjoys the company of others, and it sounds as though he does, a facility will offer companionship in addition to the safety, proper eating and hygiene.

Good luck.

 

[clarethebear]

Hi Jaws

Welcome to TP.

My family went through a similar sort of thing you are going through. My Nanna wasn't feeding or drinking. She didn't wonder but started seeing people that weren't there are throwing water at them. She also lived on her own. Yes it is very hard but like the other's that have replied to you, I also feel it is time your dad needs to go into 24/7 care.

With my Nanna we told her we needed to have some work done on her house and she needed to go to the home for a few weeks while the work was carried out. That was now 9 months ago.

I hope these posts will help you and your brother in someway, to make the choice you feel is right for your dad.

Take Care
Clare

 

[Sandy]

Hi jaws,

Much good advice has been given. I would echo the word now.

As it can take quite a few visits to find a care home that you are happy with, and many of the good ones can have waiting lists, I would get onto the search process ASAP.

There is a good Alzheimer's Society factsheet that is worth looking at:

http://www.alzheimers.org.uk/Caring_for_someone_with_dementia/Residential_and_nursing_care/info_selectingcare.htm

You can look on the Commission for Social Care Inspection's (CSCI) web site to obtain a listing of homes licensed to take people with dementia (also called EMI homes) and to read inspection reports:

http://www.csci.org.uk/registeredservicesdirectory/rsadvsearch.asp

Take care,

Sandy

 

[fearful fiona]

Dear Jaws,

Just to agree with everyone else. I have recently had to put both my parents into a care home because they were just too vulnerable at home. My mother has Alzheimer's and my father has cancer. You may like me go through the whole range of emotions, i.e. feeling you've abandoned them, wondering if you should have done more yourself, feeling guilty, etc. etc. But the important thing is that there comes a time when professional 24 hour care is needed and this can only be provided by a care home. From what you've said it really sounds like that as soon as possible is the best option.

There have been some awful reports in the press about care homes, but once you've started looking around you will find there are some very nice places out there with wonderful caring staff. My Dad has settled in well, but my Mum is really struggling but the staff of the home they are in are doing all they can to help her.

I hope you find something soon, it may be difficult at first, but at least you will know that your father will be safe and looked after.

Good luck!

 

[Margaret W]

Dear Jaws,

It is difficult to know when the time has come for a Care Home, but reading your post, if it were my dad, I would be looking now for such a home.

As he is a relatively lively man, it might take you a bit longer to find a suitable home than for someone who is more introvert, if he has started to urinate up the cupboards and been sexually demonstrative towards you, you do need a home which can cope with that behaviour rather than just a residential home - though that behaviour might disappear if he is in a different environment. Does he display any such behaviour at his "club"? His behaviour in his own home and with his own family (though you say he doesn't recognise you as such, but if he only behaves like that with you, then it is because you are familiar to him in some way), might be totally different in a care home.

Get the social worker back, and possibly the consultant psychiatrist, or even get him admitted to an assessment unit for a while, before you make a decision.

Hope it works out.

Love

Margaret

 

[Taffy]

Dear jaws,
Welcome to TP, from your description of your fathers situation I would agree with others that it certainly seems like it is time for your dad to be placed.

dad used to ask me to finish him off rather than put him in a home.

My mum use to say the same thing and at the time she was of sound mind. She would say, if I ever lose the plot take me to the river and push me in and don't look back, I can't swim.

You and your brother have done well to get this far with your dad. Unfortunately, the time comes for most carers when placement is necessary. As other have said, there are some very good homes with caring staff.

Whatever you decide, I wish you all well. Regards Taffy.

 

[jaws]

Hi Everyone,

Thanks for your wonderful words of support. I know it has to be our decision but it helps knowing that there is support out there.

I have taken the first steps and made a referral to social services who are going to assess his changing needs - talked it over as a family and are going to push for care. He has his own property and can fund himself to stay somewhere 'nice'.

Once again, thanks and keep up the good work.