Care home or care at home - what to do?

[Tim813]

Hi, I’m a new member and seeking some advice please. My mum was diagnosed with Lewy body dementia and Parkinson’s approximately 4 years ago. Since March 2020 she has been deteriorating. Social services and mental health team have stated she has no mental capacity anymore. She use to wander (but always came back) but the Parkinson’s has stopped her recently from going out as her mobility is poor. She has had 5 falls in 5 weeks with one stay in hospital. The other falls she has been found by me and was fine just needed to be pulled up. She does have problems with toileting and I find accidents around the house regularly. I’ve been getting conflicting advice from people. Some say she needs more care in the home (at the moment she gets two visits a day by carers- she doesn’t really like them and asks them to leave all the time) others say she needs to go in a care home.
I find myself constantly round at her house (I live 15mins away) because I am sick with worry and only get peace from that when I am at hers with her keeping an eye on what she does. She doesn’t know who I am anymore (this morning I’m the vicar’s husband!!!) but I do find myself hanging on to the good days. Professionals are stating care home, but the at home care provider is wanting to up the visits (I know they are biased). I have LPA for everything but I’m unsure what to do. She can dress herself, make cups of tea but doesn’t wash herself or cook anymore. Recently within the last 2 weeks her anxiety levels have increased. She doesn’t want me to leave when I pop round to see her as she is concerned about ‘the man’ coming to get her (she suffers with hallucinations too). She has rang the police too about her hallucinations and they have attended the property twice.
Any advice would be appreciated.

 

[Sarasa]

Hi @Tim813 and welcome to Dementia Talking Point. This is a very supportive place and you'll find lots of help and advice here as well as a listening ear or two.
Below is my story about my mother in law which is very long, but might give you some ideas of the pluses and minuses of various options. Certainly it sounds like your mother needs extra help, but I don't know if four visits a day would be enough. Accidents and falls happen when they happen not when someone is there to help. As well as my MiL my mother also has dementia. I moved her into a care home last year as she was started to put herself at risk due to her actions, though at the time her dementia wasn't as advanced as your mums. It's taken her a while to settle and of course covid restrictions don't help, but I think it was the best things I could of done for her.
I'm sure other people will be along shortly with their thoughts on the matter.


My mother in law is very similar to your mother in that she lives alone, and is unable to wander due to mobility issues. At the moment the only help he has coming in is her younger son calling in twice a day and her younger daughter coming over most evenings after work. The family tried extra help in the past but MiL didn't like it as she too gets very anxious round people she doesn't know. At the moment there is a great family debate going on about getting in more care. MiL can do nothing for herself anymore and is becoming incontinent too. My elder sister in law wants to try getting extra care in but brother who does the majority of the care thinks she will send them away. Elder sister ideally would like a live in carer and I can see the advantages of that. Accidents will be cleaned up when they happen, falls (fortunately there haven't been many of those lately) sorted, and she'll have companionship as she is no longer able to read or understand programmes on the TV. My husband and I think a care home would be best. MiL lives in a lovely detached cottage, but it needs lots of work doing on it and there is no downstairs shower and lots of things that need fixing to make it suitable to have someone else staying there. In a care home MiL would be safe, warm and have companionship when needed and her own room if she wanted to be on her own. The big downside is the fact that visiting would be difficult and I don't know how the family would cope with only one person being able to visit regularly as she is loved by all of us and we'd all want to see her as often as we could.

 

[Bunpoots]

Welcome from me too @Tim813

If the professionals are suggesting a carehome then you should seriously consider this option. With my dad we’d tried 4 care visits a day but it wasn’t working and he was left feeling anxious for much of the day while he was alone. He needed company all day and it sounds like your mum does too. Also, like you, I found myself visiting him several times a day to check he was ok, hadn’t fallen again or made a mess.

Dad liked his home carers and was generally co-operative with them but eventually he needed more. I imagine it’s even more difficult if your mum is telling them to go away.

It was an easier decision for me, before Covid, as I could visit dad in his carehome whenever I wanted to but your mum sounds as though she’s at a similar stage to my dad was when he eventually needed full time care. After he’d settled in the home we were both happy with it - and much less stressed!

 

[Bod]

Care Home would be my decision.
There would be 24hr staff on hand, who are skilled in the requirements that she has.
Yes it would be a great up-heavel for her, and you to an extent. But her needs would be met.

Bod.

 

[lemonbalm]

It sounds as though, for your mum's safety and your own peace of mind, that you should be considering a care home now. Even with an increased number of care visits and your own visits, your mum is on her own for a lot of the time.
She would probably be less anxious with people around her. It's a hard decision to come to, particularly at the moment with visiting restrictions, so keep posting for support and advice. You don't have to tell your mum that it's permanent. It can just be to "get her a bit stronger" or just "so she can be looked after for a while". I'm still telling my mum that after more than three years.

Whatever you decide, let us know how things are going.

 

[Rosettastone57]

Hi, I’m a new member and seeking some advice please. My mum was diagnosed with Lewy body dementia and Parkinson’s approximately 4 years ago. Since March 2020 she has been deteriorating. Social services and mental health team have stated she has no mental capacity anymore. She use to wander (but always came back) but the Parkinson’s has stopped her recently from going out as her mobility is poor. She has had 5 falls in 5 weeks with one stay in hospital. The other falls she has been found by me and was fine just needed to be pulled up. She does have problems with toileting and I find accidents around the house regularly. I’ve been getting conflicting advice from people. Some say she needs more care in the home (at the moment she gets two visits a day by carers- she doesn’t really like them and asks them to leave all the time) others say she needs to go in a care home.
I find myself constantly round at her house (I live 15mins away) because I am sick with worry and only get peace from that when I am at hers with her keeping an eye on what she does. She doesn’t know who I am anymore (this morning I’m the vicar’s husband!!!) but I do find myself hanging on to the good days. Professionals are stating care home, but the at home care provider is wanting to up the visits (I know they are biased). I have LPA for everything but I’m unsure what to do. She can dress herself, make cups of tea but doesn’t wash herself or cook anymore. Recently within the last 2 weeks her anxiety levels have increased. She doesn’t want me to leave when I pop round to see her as she is concerned about ‘the man’ coming to get her (she suffers with hallucinations too). She has rang the police too about her hallucinations and they have attended the property twice.
Any advice would be appreciated.

I agree with other posters. The care home option is the best way forward. There comes a point where the person with dementia's needs become so great that they outweigh what they or family members want to happen. You have now reached that point

 

[Norfolk Cherry]

I was in the same situation with my mum, I recognise the situation completely. In my case, my mum's anxiety increased to the point that she would refuse to go in the house, and sat outside on her front step. She also started walking with her frame to attempt to get to my house. So it was her escalating anxiety, in spite of 4 carer visits plus me that led to her moving in to her care home. I hope this helps you make the decision, so hard to do but inevitable. I still carry a lot of guilt that resurfaces from time to time, but there it is. Unless you have support from other close family members and can share it, looking after someone with dementia alone is unlikely to work in the long term. I learned this from reading about carer breakdown on here. Wishing you well.

 

[Frank24]

Hi Tim,
Live in home care is very difficult. My mum had it for a year and a half. Fraught with all sort of problems. You have a change over of staff which is required for breaks and leave of course but it is sometimes difficult for the person with dementia to accept and that brings its own problems. It sounds to me that your Mum would struggle if she is already having problems knowing who is who so people coming and going more frequently could be distressing. My mum often wanted people to leave and would go out into the street and come distressed. My mum is is a care home home now and I've realised that some of the situations she was put in by the home care company and my choice of care were probably not ideal. Long term as people mention, full time care is really the only option. I know I rallied against this when people said it to me. All of these decisions are really hard and at the end of the day you can only do what you feel to be right at the time.

 

[Tim813]

Thanks everyone. I’ve started making a list of nursing and care homes near by and have rung a few. I’ll let you know how it goes. Thanks for the support.

 

[RiverT]

Sorry to pick up this thread a bit late but it's something I've been talking about with my mother. At the moment she's just at the start of what is probably dementia. It hasn't been officially diagnosed yet, but it's in the process and I've spoken to a psychiatrist who looked at her scans and said there's slight evidence of what is probably vascular dementia. Mum manages everyday care and looking after herself OK, but her memory is poor and she gets confused sometimes during conversation. She has a carer who comes once a week just to do shopping, because she doesn't feel happy driving and lives in a small village with no shops.

She has always been adamant that she wants to stay in her house until she dies. Because she's always been so clear in her intentions, I'm planning for live-in care in the long term. I live a long way away and have my own family, so I'm not in a position to move nearer her. I'm thinking could we eventually get to a point where I might have to override her wish to stay at home, and look at a care home or nursing home for her safety. I'm wondering what that scenario might be - would it be if someone like a doctor or even a care agency advised me that live-in care isn't suitable? Can I or should I override her wishes if the situation demands it? Thanks for any thoughts from others who might be further down the road than me.

 

[Shedrech]

hello @RiverT
a warm welcome to DTP

I suggest you talk with your mum about getting Lasting Powers of Attorney in place so you are able to help her manage her finances and stand for her part in health and welfare issues should the time come

and yes, her wishes can be overridden if your mum becomes at risk of harm in her home or care at home no longer provides for her needs satisfactorily ... either by an Attorney acting with the LPAs or by Social Services calling a Best Interests meeting

sadly, many of us here have had to step in when needs outweigh wants, but it's not always necessary as some folk are able to stay in their own home ... you are being sensible to consider all scenarios

 

[Athlemea]

I have a successful live in care arrangement for my dad through an agency. There are very few change overs as the main carer has chosen to work for several months at a time and then take a month break.

It can work but it was rocky to start with - but a move to a care home would have been worse i think, based on having tried 3 weeks respite previously.

With one to one care i can call the house any time, can visit as the restrictions allow (my dad is housebound so this is only possible when garden or indoor visits are permitted) and he is in a familiar environment which makes a huge difference to his level of confusion.

However although the cost is small considering the carer gives up their life pretty much, it is an eye-watering amount of money which is not sustainable in the long term.

Good luck, whatever you go for.

 

[RiverT]

hello @RiverT
a warm welcome to DTP

I suggest you talk with your mum about getting Lasting Powers of Attorney in place so you are able to help her manage her finances and stand for her part in health and welfare issues should the time come

and yes, her wishes can be overridden if your mum becomes at risk of harm in her home or care at home no longer provides for her needs satisfactorily ... either by an Attorney acting with the LPAs or by Social Services calling a Best Interests meeting

sadly, many of us here have had to step in when needs outweigh wants, but it's not always necessary as some folk are able to stay in their own home ... you are being sensible to consider all scenarios

Many thanks for your advice. I've already set up both LPA's and taken over most of my mum's finances, plus my sister is already handling much of her medical side, talking to the GP practice.

 

[Seaholly]

I'm another in a similar boat!
Mum is no longer able to spend any time alone, other than maybe 20 minutes max, on a good day, if she knows I am just popping to the shop and she is settled and occupied.

In her lucid moments, she has started to talk about wanting to go into a local care home because (in her words) she feels like the house she is in no longer feels like 'home'.

I'd support her decision, because while in the past, it's been something she's said as a threat when she's lashing out, recently she has started to say it when she's settled and we're chatting about the future. She feels she wants to let us all carry on with our lives now.

Covid aside - which makes it a bit of a non-question for now anyway, my brother is dead against her going into a home of any kind because he says she's not in her right mind and she'd hate it. He feels she is 'being a martyr' and thinks she's a burden on us but what she actually wants is to remain at home.

As it is, we finally seem to have found good carers (fingers crossed) who actually send the same person most of the time, so mum is coming round to the idea of the carer doing 2 days with her instead of one. This would be a huge help, although mum has long lost the capacity to understand why spending 60+ hours a week with her can be draining!

My argument is that if mum wants to go for it - let her! It's a decision she can take while she still has a bit of cognition left to take it and if she wants to do one last thing to give her children some freedom back, why deny her the right to be 'mum' one last time? I'd also like her to make the call while she can and settle in while she still has some awareness of what she's done.

My brother's argument is that care home = fast track to dying, because she'll just go downhill, have nothing to live for and end up sitting in a chair, staring into space! Admittedly, the last time she tried respite it was a disaster, but that was a particularly poor care home and she wasn't there long enough to settle in.

Cost-wise, if you factor in meals, water, electricity, council tax etc., a care home isn't the most expensive option for full time care by any means. I'm really torn, because I believe now that if we found the right care home, mum would settle and enjoy some quality of life and we could still visit every day.

 

[Duggies-girl]

@Seaholly are you spending all of your time looking after your mum and spending 60 hours a week with her. How much time does your brother spend looking after his mum. I may be wrong but if he doesn't help with the caring and I mean real help that includes giving up lots of his free time then he should keep his opinions to himself, he is talking a load of rubbish.

Is your mum self funding because that is often an ulterior motive for wanting to keep someone in their own home and if he isn't helping with caring he is on to a winner.

The cost of a care home is small compared to the cost to your health and wellbeing. and if your mum wants to go to a care home then she should go and at least then you would tried it.

 

[anxious annie]

Hi @Seaholly , does your brother or you live with your mum? Or does she live alone?
My sister and I cared for mum who lived by herself, and it just got harder and harder over the 2 abd a half years until we were exhausted and had very little time for ourself. Mum always said she didnt want to go into care but just over 12 months ago wehad to move her as she was starting to be unsafe, forgetting to eat and drink.
We couldnt believe it as mum settled so well, she loves the company and activities, lots are on offer. You just have to choose carefully, dont go for the "hotel" style ones, go for the "clean smelling" home , and caring staff.
Its hard in care at the moment with current visiting restrictions, but this must get better soon. If you can get extra care at home and you can cope I'd say don't move your mum just yet. You can start to investigate homes, get brochures, read reviews etc so that once you can visit to look round you'll be able to sort things more quickly. If your mum wants to go, maybe she's lonely like my mum was. You and your brother will be able to go in to be with your mum and still care for her, take her out etc ( post covid), but without the strain overwhelming you. I don't think your brother understands how homes now operate, choose wisely, residents will obviously have "down time", and no doubt nap, but they're lively places too, if you choose a good one. You'll know from "respite" the type you don't want. There's lots of support on TP about how to choose a home, what to ask etc so make sure you find this out first.

 

[Seaholly]

Thanks to everyone for their advice. Although we've all got user-names, I don't want to go into too much detail about the domestic situation as it is a bit complicated and explaining it would give too much away!
I really do think mum would get a new lease of life if we found the right place for her and if she knew we were enjoying our lives and coming to see her with news of the outside world and what we'd been up to. Her biggest joy in life was being a mum and making our family home such a lively and loving place and that's all gone for her. Whichever way he looks at it, my brother just can't see that. He sees it as our mission to keep her in the 'family home' even though, although he lives there, he works long hours and is actually only around with her for around 3 hours a day except at weekends, when its about 6 hours. The truth is, it's just a house now and a pretty sad one at that.

I can honestly say there are no ulterior motives on his part: he's just not that sort of a person. He just sees things the way he wants to see them, to suit his preferences and needs and can't see the point of anyone else's opinion once he's made up his mind.

 

[Sarasa]

Hi @Seaholly, this is very much the situation my husband is in with his siblings regarding their mum. They want to respect her wishes to stay at home, but she really can't manage without a lot more help than she currently has. Last week a mix up in communications meant she was in soiled clothes for at least twenty four hours for instance. I think its only a matter of time until she ends up in hospital, due to a crisis that could have been avoided.
Welcome to Dementia Talking Point @EmJay1 . Do you know why your sister is so cross about what happened? To me it sounds like you did exactly the right thing. Once people with dementia start wandering it is very difficult to stop them, and the next time she might not have been so lucky. If your sister only talks to your mum on the phone or via video calls she may well think she is more capable than she actually is as there is something that's called 'hostess mode' round here where someone with dementia can put on an act of seeming far more together than they really are for a short while. I'm also assuming your mother might have been asked to leave her retirement flat anyway as often once dementia progresses they are no longer suitable places for someone with dementia to live.
I'm sure other people will be along soon with their thoughts, you'll find this a very friendly and supportive place.

 

[EmJay1]

Thanks @Sarasa for your comments.
Very interesting it what you say about 'hostess mode' - never heard of it before (is it an official term?).
There is certainly a difference in view between us based on our observations and conversations with mum. My sister has phone or FaceTime conversations with mum but its on her terms - she makes the calls and drives the conversation - and to be fair she is good at the general 'what's been going on with the family' stuff and to divert mum away from anything mum gets confused about.
With me, I tend to be the one mum contacts when she is confused and/ or anxious - primarily around not thinking she is at home in her flat, that she has been taken out for a meal (when the carers come to her flat to prepare her meals) and that she wants me to come and pick her up, that she has been abandoned and is alone, that she is being moved from one flat to another etc.
I also visit mum regularly but even then am often met with confusion about where mum thinks she is, and the carers have seen the same. As a result the conversations I have with mum are very different- I'm reassuring mum, trying to reduce her anxiety, trying to get her to accept that she is at home and safe and that we all know where she is, but its not easy and can result in antagonising mum as she then believes that I don't believe her about where she thinks she is. And with her poor memory the conversations tend to be somewhat circuitous!
So there is definitely a difference in opinion regarding the levels of confusion, mums capability and what her needs are. That said there seems to be an almost philosophical rejection of residential care by my sister - a recent email exchange provoked a strongly worded response listing a whole host of reasons why mum shouldn't go into a home ranging from mum's overall health, to infection control (CoVid), to mental stimulation, all of which equally apply to mum continuing to live independently. I'll keep on trying though - I have to because at some point we will need to sell her flat etc so support mum's long term care and I will need her on board to do that.

Thanks @lemonbalm - I think you are correct in that the sibling who is closest to the problem deals with it and 'moves on' to the next issue. Due to distance and being out of the country my sister has no involvement with mum's day to day support - financial management, bills, doctors, hospitals, care agency as well as the almost daily phone calls panicking about something - so again she has no practical perception of the realities of mum's support needs. She knows I do all this, but knowing it is being done and doing it are two very different things!

Thanks for your support

 

[canary]

@EmJay1 - Im sure you are right in your assessment of your sisters perception of the situation. People with dementia can hide their symptoms from others for a short while. I dont think "hostess mode" is an official term, but we have all seen it when they are faced with other family members and doctors/social workers/other "official" people. Its the most annoying thing, because you are jumping up and down shouting about all their problems and then when they see someone else they sort of pull it all together, only for it all to fall apart when that person leaves, or they walk out of the consulting room. The upshot of this is that the person who has seen(or talked to) them doesnt believe that they are that bad and you are left picking up the pieces of someone who is worn out with the effort of appearing normal and really grumpy and/or confused.

Im sure that moving your mum to a care home is the right decision. Im afraid that my personal feelings are that someone who is not directly involved in the day to day care of someone with dementia has not earned the right to veto what the main carer feels is necessary for their care.

Edit to clarify who I was replying to