Is it time for care home?

[lexie1968]

My dad has Alzheimers, and has steadily been declining over the last 6 months. He lives alone in his own home, has a carer 3 times a day, i visit during the week(i live an hour away) and my brother and sister visit at the weekend. He spends his days wandering round the house losing things, moving things, ringing each of us constantly demanding we go round, making up stories and crying. Recently he has started losing his door keys and now is even struggling to know what keys are. The other day i found him trying to unlock a door with a 20p ! We are at our wits end. We worry he isnt locking up at night, some mornings he cant open the door for his carer. We are going to install a key safe outside. What if theres a fire and he cant get out? He really is clueless most of the time. Struggles with remembering peoples names, doesnt like to leave the house, the list goes on and on. I personally feel its time to think about a care home, but how do we persuade him? Its such a big step, daunting for us all. We just need some friendly advice as no one seems to help from his clinic.
Sorry for the moan

 

[marionq]

I think you need to meet with his social worker to discuss what happens next. Contact social services for an assessment. If you intend him to be self funding you can bypass that and look for a suitable care home and sell it to him as a hotel for a break or a convalescent home.

 

[LolaJane]

If you think it is time, then you should at least look into care homes. Get a list together. Personally check them out. He will not get any better, so your proactive approach will pay off when the time comes. I am firm believer that you will KNOW when it is time. There will be no guessing "is it time" so being prepared will give you quite the jumpstart on what may seem like an impossible journey.

 

[Herbaltea]

I think when you ask the question, then it is time. We went through alot of this with my Mother. She started to wander outside at night even though we did have alarms on one of the doors, she just went out the other door (we had an issue with this but it took so long to get another alarm fitted-long story), it was time for her to go into a home. She had to be safe, fortunately someone always found her when she wandered and got in touch with us, we lived a matter of yards from her house too. It was all so very scary. She is now safe, well cared for and happy in her own way. She doesn't know where she is, we tell her that she is being well cared for and its all inclusive so she can have anything she wants without worrying and she seems to like that. It is not easy at all, but safety is the big issue. I hope you can have a meeting with the relevant personnel and get things sorted quickly. Sending you best wishes.

 

[Katrine]

You are describing MIL two years ago, just before she started wandering at night and ended up in hospital after a fall. At the time SS assessed her as having only mild care needs, but that means nothing. All they meant was she doesn't have severe or critical care needs. The fact that she was totally unsafe seemed of little weight. The SW said "we can't respond to a crisis that hasn't happened yet, you'll have to wait for the crisis". So we did.

Once in hospital and being monitored 24/7 the medical staff could see how bad her dementia was. SWs then assessed her as needing 24/7 care in a secure residential environment. This was mainly because she was physically active with no sense of danger, and no orientation to time or place, so she would wander at night if returned to her own home.

Our dilemma pre-crisis was - Is Mum happy and safe? No to both. Will she be happier in a CH where she will be safe, warm, well fed and will have company and reassurance. It's unanswerable isn't it? Eventually safety trumps happiness.

I can't say MIL was happy in care to begin with, but she's happy now, as far as that is possible. She relishes 'getting away with' being lazy because other people do the work for a change. We never thought she could ever learn to relax, but somehow she has. At last she accepts that she's earned a bit of a rest.

Your dad isn't happy now, is he? He's really confused and frightened. But he may, like MIL, cling to the supposed security of vaguely familiar surroundings a.k.a. ' my own home' even if nowadays he has difficulty finding the fridge and would rather leave the front door open when he goes out so he doesn't have to fiddle with those pesky flat metal things that you use to unlock the door.

 

[matchstick]

I agree with Herbaltea,when you think it is time,then it is time,ask yourself where will we be in 3 months,your Dads safety and well being are paramount.

 

[suzc5hg90]

In November last year my Uncle died. When we arrived at the flat my Aunt thought it was her Dad that had died. My Aunt continued to live in the flat for another three weeks. It became clear that she was struggling, she was losing her money/medicine and becoming very panicky/anxious. I became concerned when she kept saying that people were coming into the flat at night and taking things.
Eventually she phoned the police and told them she was locked in her office at work. It wasn't really a surprise when they diagnosed her as having Alzheimer's.

She is now in a care home and has settled in very well. I think she knows that she is getting confused with most things and she understands that we are trying to do the best for her. She still has a certain amount of independence but now she no longer has to worry about her medicine/money, cooking meals. We have the Power of Attorney so that we can help sort out her paperwork and she knows that we will look after everything for her. Most importantly she also has company of the residents and staff to help her.

We are just relieved that she is now happy and safe.

 

[Adcat]

I've been in a similar situation and I was at my wits end with worry. In the end, I moved home and currently my dad is still in his own home with 24 hr companionship provided by me and a paid carer. This means that he is safe and generally happy. However, I am shattered and still at my wits end! Frankly, my experience with SS has been very disappointing to date. I know it's highly likely that I will have to face the care home option and am tentatively investigating this option so that I am best placed to choose rather than have SS telling me what to do as dad is a self funder and I have the power of attorney for health and welfare. Good luck and take care.

 

[lexie1968]

Thank you for all your comments, they do help, especially when so many have had similar experiences.
I think me and my sister will start looking at care homes with a view that if things carry on deteriorating, we have options. One thing that worries me, we have PAO on money but not health, does that mean that if he refuses to go to care home we can't make him?

 

[marionq]

Thank you for all your comments, they do help, especially when so many have had similar experiences.
I think me and my sister will start looking at care homes with a view that if things carry on deteriorating, we have options. One thing that worries me, we have PAO on money but not health, does that mean that if he refuses to go to care home we can't make him?

It will certainly make it harder so this is where you have to come up with a convincing story about why he needs a rest in this convalescent home, a short holiday in this nice hotel, a break from all the worry about cooking and cleaning etc. try him for a couple of weeks. If he enjoys the company he may choose to stay without persuasion.

 

[suzc5hg90]

The solicitor advised us to get the Power of attorney for both health and welfare at the same time. My Aunt lives 20 miles away from us and we have been told to try and keep her in the area that she knows for selecting a permanent care home. We have two small children so it has been a challenge to deal with all of the paperwork. Some companies are more willing to help than others. The main thing is that we now no longer have my Aunt's flat/bills to worry about so now we can just concentrate on making sure that she is in a happy homely environment.

She was in hospital while they assessed her and she was quite unsettled but now she has gone to a home near where she lived and she is more like her old self and enjoying speaking to the other residents/staff. She likes to wander around the home a bit but benefits from knowing that she has her own room for privacy and space.

 

[lexie1968]

A quick update...i was at dad's yesterday when his community nurse came to take his blood pressure as he has recently started on memantine tablets (is that right spelling)
Anyway I told him how bad I thought dad was getting, and that we wondering about care homes and he said he was no where near ready for a care home! I told him about our worries about security and he said dad knows how to lock up and just pretends he doesn't to get our attention! How does he know? Dad constantly loses his keys, I'm sure that's not attention seeking! He said that unless he's in danger there's no need for a care home. Anyway it's made me think, do I want him in a care home so he's not my responsibility anymore? I think the answer is yes, which makes me feel awful. So we shall carry on as we are, and wait for the next thing to happen.

 

[canary]

My thought is - what does the community nurse know about dementia?
I have come across so many people who say that people who have dementia are "attention seeking", when actually its the symptoms of dementia and they are not doing it on purpose.

edit to say - do not feel guilty if you decide that he needs to be in a care home. We all live with that guilt, but its not justified

 

[rocketscientist]

Time for a care home?

We also faced this a few years ago. Unfortunately - similar to an earlier post - we were only able to get my mother to move into a care home when she wandered out of the house, had a fall and was taken to hospital. Hospital can only discharge her to a safe place.
Obviously this is not ideal, and things could have been worse - she could have had a serious injury. So I certainly recommend trying to encourage your father to move into a safe environment before it comes to an emergency situation. At least investigate homes and see what is available.
Perhaps you could persuade him to move into a home on a short term basis, tell him its a holiday. Quite likely, such a short term stay could be turned into a permanent move. By the time my Mum moved into a home, she didnt really understand what was happening, and she didn't actaually miss her most recent house.

 

[Rosie56]

I am also at this stage and have had some nasty shocks recently (I live quite a way from Mum) when her heating failed, twice, and each time she just sat there in the cold and didn't tell me. The regular carer has been off sick and I discovered the stand-ins weren't feeding her properly (she has to be given hot food and prompted to eat and they weren't bothering to do this, just accepting her 'no thanks' and giving her a drink of water! ). I worry about her constantly and have arranged another assessment next month but with a sinking feeling it still won't get us anywhere.

On top of this, I realise I have had bad legal advice. I understood from the solicitor that what we had was a POA that would enable me to make health decisions for her. Checking it today, I noticed that it's only about her financial affairs. My heart sank. Can someone please tell me if I have any rights at all without a POA concerning health?

 

[chrissie121]

My dad has Alzheimers, and has steadily been declining over the last 6 months. He lives alone in his own home, has a carer 3 times a day, i visit during the week(i live an hour away) and my brother and sister visit at the weekend. He spends his days wandering round the house losing things, moving things, ringing each of us constantly demanding we go round, making up stories and crying. Recently he has started losing his door keys and now is even struggling to know what keys are. The other day i found him trying to unlock a door with a 20p ! We are at our wits end. We worry he isnt locking up at night, some mornings he cant open the door for his carer. We are going to install a key safe outside. What if theres a fire and he cant get out? He really is clueless most of the time. Struggles with remembering peoples names, doesnt like to leave the house, the list goes on and on. I personally feel its time to think about a care home, but how do we persuade him? Its such a big step, daunting for us all. We just need some friendly advice as no one seems to help from his clinic.
Sorry for the moan

Hi there Lexie

I so, so understand what you are experiencing with your Dad. I have experienced all of this and more this year with my Mum. We struggled also to get help from the memory clinic and the consultant. I spoke at length with her GP and he advised me to speak directly to Social Services. I would suggest you do this as soon as possible as they are so busy it can take some weeks for them to visit. However, I would advise you to tell them it is urgent and you need emergency assistance, as this will speed up when they send a Social Worker to interview and assess your Dad. They will agree a time to visit ( you can be at the home with your Dad). You can advise how he is and the type of things he is doing and your worries about him. From a practical point of view - the losing the keys is a worry for dementia sufferers and you need to install the key staff as soon as possible and provide the key code to the carers, and perhaps a good neighbour. You should also provide it to Social Services once you have been appointed a social worker. The Social Worker will assess how your Dad is when she speaks with him and then will obtain family views and concur if he needs full time care. To raise it with him I would suggest you all mention some respite care - Dad its getting harder for you to manage and we have been worried about you and think you could do with a little rest. We did this with Mum, it did take some time to convince her and I would be lying if I said the past 6 months has been plain sailing. I won't bore you with all the details but suffice to say, if you can persuade him to go for a week or two weeks respite - this will give you and the family a little rest and he might enjoy the change of scene and company. I would advise when you are waiting to hear from SS that you start to check out the care homes. they are all so vastly different but the key thing is finding a home that will look after him like you would but with activities and events going on, not a nursing home but a residential care home who are experienced in dealing with your Dad's illness. Key things for a home: check out the ages of the other residents, how many others are the same gender, what activities/stimulation do they offer residents, ,can they take personal possessions that sort of thing. What are they staff like, do they seem friendly and caring? You don't have to visit loads of homes, jusst check out on the websites and then whittle down those you like the look of. Social services will ask the families opinion and work with you if you have a home you particularly want. They are also able to work with you if you want a home in an area that is not where you Dad lives but is where your family live. There is so much to advise but the first thing you should do is contact your GP and advise him of your concerns and ask if he could visit your Dad. Secondly contact Social Services. Can you up the number of times the carers go in? Who currently provides the carers - is it private or social services - if the later then speak directly to your contact there as the carers should have a care plan for your Dad and be recording how he is each time they visit, this would be something the social services team would take into account when reviewing his need for some respite care. Once you have him convinced to go for respite care - the home will then assess him and his needs for full time care. This is the beginning of a very stressful time for you all, including your Dad, so be prepared but be strong. My Mum is now in her third care home. The first one for respite she didn't settle and had a spell in hospital, the next one was a nursing home and not able to address her needs or provide stimulation and the last one she has been in now for 2 weeks is addressing her needs. Mum is still not settled and very angry with us for moving her and it has been awful but we know she is now safe and well. Like your Dad, the change in behaviour and the inability to be able to cope with small mundane tasks like losing the keys can happen over night and you then know the time is right now to start the process of full time care. good luck and take care.

 

[suzc5hg90]

The day before my Aunt was taken to hospital I felt that she was beginning to really struggle to cope with living alone so I phoned the social worker to ask for advice. At this point she wasn't diagnosed with Alzheimer's, but all the signs were there. I told the SW that my Aunt was very vulnerable. All she really said was it was too soon after my Uncle had died to make a proper decision. She said I should not take on too much as I have two young children to look after.
She didn't realise that my Aunt & Uncle had been struggling to cope for several years but they had been reluctant to have a home help. My Aunt's sleeping arrangements were far from ideal and she was imagining that people were in her flat at night. During the day she was going around the neighbours door's in her block asking if they had her medicine. I was starting to worry that she would wander outside to the busy main road.
Sometimes you have to go with your instinct on things. I was not surprised when the hospital phoned to say that she was there. For a brief time I wondered if my Aunt was attention seeking but the doubt was cast aside when I looked at the bigger picture. She is not really the person she once was and at certain times she is realising what is happening to her.
Go with what you feel is right.

 

[skidpan]

Lexie1968 - this all sounds very familiar with where we were with my MIL about 15 months ago.
Now is definitely the time to research care homes ready for the move. My MIL was often unable to find/use keys so we had a keysafe installed so at least the carers could get in during their visits. MIL also left the house at odd times and was found more than once at a bus-stop dressed in her nightie.
The final straw was when she started putting slippers and clothes into the grill and oven. She was clearly at risk, but was very adamant that she didn't want to go into a home. We had to go down the route of persuading her that she needed a break from home so why didn't she try staying at this place that was a bit like a hotel.
Although her dementia is now much worse and she often doesn't know us when we visit, she is now safe and secure in the home.
You will always feel guilty about the move, even though you know it is the right thing to do. If you are going to self-fund, then go for it as soon as you are ready. If not, then get your dad assessed by someone who knows what they are doing and take it from there.

 

[referee50]

Hi Lexie, so sorry to hear where you are with your Dad. I had a similar dilemma 18 months ago when my Father broke his hip. At the time he was still in the family home with my Mother and she was already struggling to care for him as his Altzeimers was worstening. The break was the catalyst for us all to accept that she could not look after him at home, and gave us time to look for a Care Home. We already had Power of Attorney so that also helped.
Please don't feel guilty, although I know how hard it is not too. You have to put his safety first.
However, it is not an easy job to get him into Residential Care these days. I would suggest you keep written lists of the problems you are facing with him, as you will have to get the Social Services to agree he is "lacking capacity" to make decisions about his own health/safety/housing needs etc etc before they will agree to anything, so bear those points in mind when preparing your list. I made sure I spoke to the Mental Health Team Social Worker before she interviewed him as I knew, at a basic level, he would appear quite capeable. Don't assume the Social Workers etc "know" they have Altzeimers and are therefore making exceptions for this, the truth is often far from that as the whole Care system is under so much pressure. I made sure she knew his "trigger", which was "where do you want to live", at which point his demeanor completely changed, he became aggressive and soon showed he had no concept of his care needs, he didn't even remember he had broken his hip!
Oddly, after we got him into a Care Home on the basis of it being "respite because of his injury", he refused to go home at the 6 week assessment point as he liked it so much! His Alzeimers has contined to worsten, hard to tell if he is happy but he is certainly better cared for there than he would be at home, plus there is Company and someone on hand 24/7 to keep an eye on him.

 

[Fiona P]

Hey - youre not moaning, actually what you are is: worried, concerned and feeling in limbo

I am just going through this now with my dad, he is very much loved and has a team of 4 of us doing all the necessary.
Dad had dementia 8 years, started respite last September 2 x 1 week stints

Masive decline since October steep decline since 28th Dec.

In the space of a month - and this is still a shock to us - he was assessed as no longer able to be at home
The Social worker here has been amazing. The decision wil ultimately be taken out of your hands and it is not you putting him there, the disease is . Talk to SS see what their assessment says. we need to ask ourselves, for dad's safety should he be at home? where is dad better off? in a CH with company or at home with a carer coming in for an hour max? All these things we have had to do in the last month ( less than)

talk to the family, SW and local Alzheimer co-ordinator as a team you will do the best. You are now about to for an alliance of professionals, you are the professional on your dad, SW is professional in care homes and support and Alz Co-ord will be invaluable and think of things you've not thought of yet.

Best of luck