How do you know when its time for a care home

[Dianneya]

Hi, This is my first post so please forgive me if I ramble. Dads had mixed dementia for 5 years now. My Mum died in December last year and Dad has gone downhill since. He is, most of the time very happy in his own little world but his routine is key. He calls most things "snaps" and "Nat West" so we have to spend many an hour trying to figure out what he is referring to. He refuses to wash or shower and hasn't washed since June and no matter what I or anyone else says he just point blank refuses. He wont let anyone help him and has had a number of toileting accidents but still we cant get him clean himself. We had carers going in 3 times a day however my sister used to take him out while the carers were there a lot of the time for some reason so when she couldn't go round as much he decided he didn't need or want the carers in his house and used to either refuse them entry or throw the food they made for him away and was rude to them. We pay someone privately to do his cleaning and companionship for 3 hrs a day 5 days a week but she is having a baby in December so wont be around for a while. My Sister goes in once a day and does his tea... Well I call it tea but its just a few snacks really. He is unable to cook or make a cup of tea but can drink wine (we water it down so there's less than a glass full of actual wine in the bottle). He doesn't now want any of his grown up grandchildren to visit and only wants me and my two sister to visit. Two of us work and like an hours drive away and the other lives close to him and doesn't work.
To my question (told you I might ramble, sorry)
My sister that lives close to him refuses to speak or communicate with me or my other sister but has passed a message on through her daughter that she is not willing to continue to look after Dad once the cleaner goes on maternity. She has said she wants him in a home, (she even named the home) but doesn't want any involvement in the arrangements. My other sister and I both feel a care home would be the best thing for Dad but I know he will refuse as he keeps saying no one can make him leave his home. We will be self funding but I have spoken to his social worker and he has suggested that I don't tell him he is going into a care home and when we get there just have a cuppa with him then leave. This seems really cruel and I know he will hate me for it. I also know if I tell him somethings wrong with the house and he has to move out for a while he will refuse. I feel so guilty and it will all be down to me to sort and be the bad one that takes him and leaves him there. I just don't know the best way to deal with it. Anything I say to him he will just refuse. Any advice would be much appreciated

 

[herdaughter]

Well, first of all, in order to force him into a home yourselves one of you has to have POA for medical decisions. Or you need social services to section him, which involves getting them in to decide he can't be safe at home. Are the carers from social services or totally private? They can help testify to that.

It is pretty usual for the person with dementia to claim they can cope, reject outside help except from family, blame the person who put them in the home, and demand to be taken home for months afterwards. Actually, it is quite possible for them to blame people who didn't actually make the decision (my father blamed my sister though it was actually me -- which was hard on both of us, but luckily she forgave me for the crime!)

This is one of the tough things about being a carer. It might help if the three of you sisters act together (why is the sister who lives close now saying she won't be involved?) but to some extent you'll have to keep gritting your teeth and saying to yourself, It's for his own safety, it's for his own safety, it's for his own safety.

It may help a bit if you all back off for a week or two and leave him to try and cook for himself so he is forced to see he can't cope. (Though he is probably still capable of denial.)

 

[Rosettastone57]

Well, first of all, in order to force him into a home yourselves one of you has to have POA for medical decisions. Or you need social services to section him, which involves getting them in to decide he can't be safe at home. Are the carers from social services or totally private? They can help testify to that.

It is pretty usual for the person with dementia to claim they can cope, reject outside help except from family, blame the person who put them in the home, and demand to be taken home for months afterwards. Actually, it is quite possible for them to blame people who didn't actually make the decision (my father blamed my sister though it was actually me -- which was hard on both of us, but luckily she forgave me for the crime!)

This is one of the tough things about being a carer. It might help if the three of you sisters act together (why is the sister who lives close now saying she won't be involved?) but to some extent you'll have to keep gritting your teeth and saying to yourself, It's for his own safety, it's for his own safety, it's for his own safety.

It may help a bit if you all back off for a week or two and leave him to try and cook for himself so he is forced to see he can't cope. (Though he is probably still capable of denial.)

My mother-in-law went into care last year straight from hospital. She was self funding and even with carers, it became clear that she was unable to cope on her own at home. She point blank refused to go into care, so we waited for a crisis. She became ill last year and she went into hospital. At that point, we found a care home who came out to assess her . We told her she needed to recuperate in the home, the reality was she was never going back home. We didn't involve social services, we just organized it ourselves. Hospital transport took her straight to the care home . We had POA for finances and health . Although we lodged the health POA with the hospital, to be honest they weren't really interested. Social services weren't interested either as we were self funding

 

[Dianneya]

Thanks for the reply. I don’t know why she says she won’t be involved, I suspect it’s because she can then say to people she didn’t have anything to do with it and it wasn’t her idea. I don’t have POA for dad but the home is talking about, if needs be they will put a DOLs in place. He phones my sister and me at all times of the day and night. We have cameras up and he constantly wanders around the house, only seeming to sleep for a couple of hours at s time. I did think it might be worth putting in carers through a care company again ( my sister cancelled them) And just leaving him to get on with it and seeing how he will cope. The lady who comes in every week day is great and takes him shopping and cleans but even though he loves her to bits she struggles to get him to get changed and can’t get him to wash. Dads SW hasn’t done a mental capacity assessment as he thinks it will upset dad too much. He’s already had a skin infection and I’m concerned the lack of personal care, especially as he has had toileting accidents is going to lead to a serious infection very soon. I just want to do the right thing by dad but feel whatever decisions are made he will hate and won’t accept.

 

[karaokePete]

Hello @Dianneya you are welcome here and I hope you find the forum to be a friendly and supportive place.

I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required, knowing the right time for a Care Home and sorting out useful things like Wills, Power of Attorney etc. There is also a Dementia Guide in the list.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

 

[Guzelle]

My OH is now in a care home we are self funding. I needed to have an operation so I had no choice. I told him we were going for coffee he was angry at first but he is now settled. As we re self funding social services said I could find a home myself they needn’t be involved. They helped me find this home which was near where we live and specifically for dementia patients.

He was ready for the care home he was very difficult to look after. He could hardly do anything and could become aggressive with me and my daughter if he didn’t get his own way! He wouldn’t wash he wouldn’t let me go anywhere he just followed me around the house. He wanted to go out but wouldn’t let me talk to anyone.

He didn’t eat much and slept a lot. In the home he is clean not aggressive always glad to see me. He is eating better. He has lots of people to talk to with entertainment on some afternoons. I do feel guilty and lonely but I know how it would be if he came home. He wouldn’t go to a day centre or have careers to help me. I was very depressed and frustrated. I do feel less stressed and go out more with friends and it’s nice not having to face the aggression when I come home.

 

[Rosettastone57]

Thanks for the reply. I don’t know why she says she won’t be involved, I suspect it’s because she can then say to people she didn’t have anything to do with it and it wasn’t her idea. I don’t have POA for dad but the home is talking about, if needs be they will put a DOLs in place. He phones my sister and me at all times of the day and night. We have cameras up and he constantly wanders around the house, only seeming to sleep for a couple of hours at s time. I did think it might be worth putting in carers through a care company again ( my sister cancelled them) And just leaving him to get on with it and seeing how he will cope. The lady who comes in every week day is great and takes him shopping and cleans but even though he loves her to bits she struggles to get him to get changed and can’t get him to wash. Dads SW hasn’t done a mental capacity assessment as he thinks it will upset dad too much. He’s already had a skin infection and I’m concerned the lack of personal care, especially as he has had toileting accidents is going to lead to a serious infection very soon. I just want to do the right thing by dad but feel whatever decisions are made he will hate and won’t accept.

There comes a point when the person with dementia's needs outweigh what they want to happen. It sounds like you have reached this point. The default answer is always going to be no from the person with dementia. My mother-in-law was like this. The lack of personal care is very common. My mother-in-law had carers in three times a day for three years and she refused personal care during that time. She could wash herself of sorts but her hair was not washed at all for 3 years. It got to the point where she was not safe in her own home and problems arose when the carers weren't there, especially overnight. Eventually she needed 24/7 supervision and went into care

 

[Sirena]

I agree with all @Rosettastone57 has said. And I think your dad's SW is absolutely right - don't tell him he is going into a care home, just arrange it and take him there. Tell him he's going somewhere he'd accept going, wherever that may be - I told my mother she was going on a mini break. That meant she was cheerful about it and arrived in a positive frame of mind. We had lunch with her, and then left her there.

What else can you do really? He is going to be upset no matter how you frame it, but he needs to be in a care home, and you need to do it in the way which distresses him least.

My mother would not have volunteered for a CH, but after several weeks she greeted me with the words "I love it here!" (I think she was worried I had come to take her away!) But whether she settled or not, she was at risk in her own home so it was the only option, and from all you have said that definitely applies to your dad too.

Your dad may not be happy whatever you arrange - because the dementia means he can't be happy. The best you can hope for is that he is content, and the best hope for 'content' is a good care home. He will have help and reassurance 24/7, he will be clean, fed, well hydrated, and safe. The point has arrived where you have to do what is best for him.

 

[Dimpsy]

Hi @Dianneya, my mum still lives with us, so we haven't reached the 'thinking about a CH stage' - yet!

If, as you say, your sister won't want people to think she was to blame for your dad going into a CH, it will probably backfire on her.
A caring daughter sees a failing father and takes responsibility for his safety and future care, wherever that may be, whereas your sister seems to be turning her back on him.
You will get ever such a lot of support and advice from this forum, best wishes for those difficult decisions and keep posting.

 

[Champers]

Just yesterday I moved my mother to a CH after months of deterioration. Similar story - carers going in to do her medication but she would regularly refuse to take it or deny that she ever needed it. She could be very biddable one day and a screaming banshee the next. She was adamant that she made her own breakfast, cooked herself a full lunch and supper but I regularly threw out ready cooked food that I had arranged for her that was out of date. She was extremely rude to the volunteers who did meals on wheels - told them she wouldn’t give the food they supplied to a dog.

The last fortnight she had stopped answering my phone calls, so I had no way of checking she was ok and be able to prompt her to eat. The final straw was a neighbour telling me that Mother’s cat was starving (she’d always looked after it well, despite her dementia) When I visited, the poor cat had bread crusts in its bowl even though there were loads of sachets of cat food.

I arranged a CH 10 minutes away from where I live and drove the two hours to pick her up. I just told her we were visiting another family member. Packed a case whilst my husband distracted her. I gave her no clue or even discussed where we were really going. She would have screamed blue murder and probably have sat on the ground and refused to move had she been told. I couldn’t have faced physically dragging her into the car so I just lied about my true motives.

I can honestly say that last night I had the best nights sleep I have had for months and months knowing that she was now in a safe environment and would be fed and cared for 24 hours a day. I didn’t realise the worry and strain I was under until I got her into the home. She was as mad as a snake when she realised she’d been misled, but my conscience is clear because it was done totally for the right reasons. I’m convinced that it wouldn’t have been long before there were some very serious incidents.

Please take care of your own mental welfare first. There is only so much anyone can take and it’s frightening how quickly caring for a PWD will subsume you too.

 

[Dianneya]

Thank you all for your advice, it really has helped me a lot. This is one of the hardest decisions I have had to make and have been full of self doubt, even though it breaks my heart everyday to see his self neglect and the distressing state he is in. I have spoken to Dads SW this morning to discuss the various options. I explained that my issue with letting Dad get to crisis and how I don't think I could forgive myself if something happened to him that I could of stopped, however I was concerned Dad hasn't had a Mental Capacity assessment and I was making decisions that I knew would be against Dads will. He said after speaking to Dad in his home last week he can see that Dad doesn't have Mental Capacity anymore and that if he were to do one at this stage it would just alienate Dad more. Even though I know a CH is the best option for Dad it doesn't make the decision any easier. It would appear my options are letting Dad get to crisis and potentially hurt himself, wander off, not take his meds, not eat and not wash or change his clothes or put him into a CH where at least he would be looked after but against his will.

 

[Rosalind297]

It would appear my options are letting Dad get to crisis and potentially hurt himself, wander off, not take his meds, not eat and not wash or change his clothes or put him into a CH where at least he would be looked after but against his will.

Alas this about the size of it. Given this binary choice, you know what you have to do.

It’s all very well allowing a crisis to develop but there’s no controlling what the outcome will be - a crisis could turn into a catastrophe. Could you live with that? Yes, your Dad won’t want to go and won’t make it easy for anyone but in time he will most likely settle so your choice could be seen as an indefinite, escalating nightmare situation as opposed to a difficult but de-escalating caring solution. He’s your Dad, he needs his dignity and to be properly cared for.

Good luck and keep us up to date on progress.

 

[Witzend]

I'm so sorry, it must be such a worry for you.

My mother was much the same - she'd never in a million years have agreed to go into a care home - why would she, when according to her there was nothing wrong with her? She had of course no idea that by then she couldn't even make herself a cup of tea. And to be honest, she really wasn't safe to be left alone at all any more. We had managed with her wonderful cleaning lady and frequent visits and 'sleepovers' , but neither I nor siblings lived near and it just wasn't sustainable any more.

She was self funded and we never involved SS at all. After a lot of looking we found a home that seemed right. (And proved to be - it was a dementia-only home.). We didn't discuss it with her at all - no,point when she'd only have got angry/upset and refused to go.

The move was planned like a military operation! My sister and I took her ('out for lunch' - it was a 60 mile drive to a care home near me) - brother and BiL followed later with some of her things (surreptitiously packed the night before) and some small items for her room.

It's a measure of how bad she was by then that she didn't twig that it was a care home - you'd have thought it so obvious - she really did think it was a restaurant.
After a very nice lunch my sister undertook to tell her she was staying. I don't mind admitting that Inwas too chicken.
I can't pretend that she was happy, or that she settled quickly, but on the whole it was easier than we'd frankly been absolutely dreading.
But by then there was really no alternative, she hadn't been happy at home either - so often anxious or frightened of things she couldn't even name.
All best wishes. I hope you find a way with the least stress/distress all round.

 

[Sarasa]

I didn't tell my mum either. She was far from happy, but it was a necessary thing to do. She was getting more and more unsafe, I lived two hours away and my brother (a similar distance away) was due to have a major operation and couldn't help at all. Mum had started to do unsafe things like drinking with random men in the next door pub, and I just wasn't prepared to wait for a crisis.
If you and your sister are happy with the home your other sister has chosen I'd start making plans to move him.

 

[Glokta]

This is something I’m trying to prepare for, my Mum is deteriorating and we have been trying to keep her in her home, more because she has a dog than any other reason. He’s a little Jack Russel and has been so good for her over the years, but she is not able to look after him or herself anymore, although she insists she’s caring for herself. What I’ve noticed in the last few month is that she’s becoming lonely. We do our best but her topics of conversation are narrowing, she’s started to lack stimulation, and I really think she’d be happier in a home. I’ve talked to her about this but she’s so scared of loosing more control. She’s clinging to Paddy, the dog, using him as an excuse. It’s so sad, but an increasing stressor on me to be her ‘company’. Only me and my brother are involved, but the burden lies mostly on me, and I hold the powers of attorney. My mother has been a domineering and aggressive person all her life. I’m literally shaking in my shoes when I think of just taking her to a ch!

 

[Sirena]

@Glokta my mother's excuse was her cat. The cat was the bane of my life, the biggest barrier to her moving. I did not discuss the move to the care home at all with my mother because it would have distressed her - she would have had a meltdown over leaving her flat but mostly over having to leave him. She had cats all her life and always said she preferred animals to people.

But regardless of what she said she wanted, she needed to move to a CH, so I arranged it all without any discussion. On the day I said she was going on a mini break. Meanwhile I was doing all the background work, arranging the care home, cancelling the day carers, informing her landlord, planning the journey, rehoming her cat - I put a lot of energy into that but I wanted to be able to tell her he was being well looked after. So she had no worries about it while I was run ragged, but at least I didn't have the added stress of her her being anxious and upset.

She asked about the cat for several weeks and was satisfied with my answer that a nice lady was looking after him. Since then, she hasn't asked about him and I realised recently she no longer remembers him at all.

 

[Rosserk]

Well, first of all, in order to force him into a home yourselves one of you has to have POA for medical decisions. Or you need social services to section him, which involves getting them in to decide he can't be safe at home. Are the carers from social services or totally private? They can help testify to that.

It is pretty usual for the person with dementia to claim they can cope, reject outside help except from family, blame the person who put them in the home, and demand to be taken home for months afterwards. Actually, it is quite possible for them to blame people who didn't actually make the decision (my father blamed my sister though it was actually me -- which was hard on both of us, but luckily she forgave me for the crime!)

This is one of the tough things about being a carer. It might help if the three of you sisters act together (why is the sister who lives close now saying she won't be involved?) but to some extent you'll have to keep gritting your teeth and saying to yourself, It's for his own safety, it's for his own safety, it's for his own safety.

It may help a bit if you all back off for a week or two and leave him to try and cook for himself so he is forced to see he can't cope. (Though he is probably still capable of denial.)

Hi reading your response has me worried

My mother lives with me and I haven’t been able to cope for months. She doesn’t have the funds to pay for a care home so would need funding. I’ve phoned SS and told them I can’t cope but all they’ve offered me is respite which she will either have to pay in full or at least contribute she’s refused to go and SS say they can’t make her. She has approximately 21k.

Because she can’t afford a care home and lives with me does that mean I have no choice but to keep trying cope? She’s never had any assessment by SS and we’ve never seen a Social worker. I don’t have the luxury of approaching a care home covertly or otherwise and I don’t have health and well-being POA. She’s been assessed by the mental health team as lacking capacity but there’s never been any mention of her being sectioned. I really think my mum would settle in a care home eventually she is very social and I 5ink she’d get far better care than I can ever give her.

 

[pevensey]

Hi reading your response has me worried

My mother lives with me and I haven’t been able to cope for months. She doesn’t have the funds to pay for a care home so would need funding. I’ve phoned SS and told them I can’t cope but all they’ve offered me is respite which she will either have to pay in full or at least contribute she’s refused to go and SS say they can’t make her. She has approximately 21k.

Because she can’t afford a care home and lives with me does that mean I have no choice but to keep trying cope? She’s never had any assessment by SS and we’ve never seen a Social worker. I don’t have the luxury of approaching a care home covertly or otherwise and I don’t have health and well-being POA. She’s been assessed by the mental health team as lacking capacity but there’s never been any mention of her being sectioned. I really think my mum would settle in a care home eventually she is very social and I 5ink she’d get far better care than I can ever give her.

Hi reading your response has me worried

My mother lives with me and I haven’t been able to cope for months. She doesn’t have the funds to pay for a care home so would need funding. I’ve phoned SS and told them I can’t cope but all they’ve offered me is respite which she will either have to pay in full or at least contribute she’s refused to go and SS say they can’t make her. She has approximately 21k.

Because she can’t afford a care home and lives with me does that mean I have no choice but to keep trying cope? She’s never had any assessment by SS and we’ve never seen a Social worker. I don’t have the luxury of approaching a care home covertly or otherwise and I don’t have health and well-being POA. She’s been assessed by the mental health team as lacking capacity but there’s never been any mention of her being sectioned. I really think my mum would settle in a care home eventually she is very social and I 5ink she’d get far better care than I can ever give her.

These posts are some of the most distressing posts I've read for a while, everyone in this heartbreaking situation, everyone living with the guilt 24/7 of doing what they really know is the very best thing for their loved one, everyone's head telling them, yes this is the best thing for my mum or dad but their heart telling them completely different. It's the most awful heart wrenching decision we will ever have to make. I'm going to have to make this decision in the next few weeks and my heart and head are telling me two different things, my daughter says to listen to my head but my heart keeps shouting louder. Hubby is in rehab for 4 weeks due to lack of mobility and were having meeting next week to discuss what happens next. When SW rang to tell me about meeting she casually said "do you want him to come home" I felt quite sick as I felt quite panicky at thought of him coming home and starting all the stress of caring all over again. I'm 78 yrs old and just feel I cant do it anymore. I would love another 10 yrs hopefully of
ME TIME but yes I FEEL SO SO GUILTY.

 

[Sirena]

@Rosserk From what I have read on here, in your situation there would be a Best Interests meeting with social services to decide what is best for your mother. If you say you cannot cope with her needs any longer, that will encourage SS to recommend a care home. Others who have been in the situation will have more info.

 

[Champers]

If it’s any comfort, I’ve just had a phone call from the manager of the CH that I moved mother by stealth into on Monday. The update was so positive.

There is NO way she would ever have agreed to going in and - I’m not exaggerating - became apoplectic with rage when I tried to gentle suggest it several times. She kicked off initially when she realised what had happened but since then she has settled, has had a shower and hair done, eating and drinking like a horse. She’s joined in and even led the dance exercise and told a carer there that’s she’s feeling very happy and settled.

I’m sure that I’ll get it in the neck when I visit and she’ll - as always - do the victim thing but I’m now convinced it’s the absolute best thing I could have done for her. She wasn’t taking care of herself at all in her own environment. Already, her quality of life is massively improved.