Experiences of moving an elderly parent with dementia into residential care

[prangers]

My very sweet MIL is 94 and has dementia and is getting increasingly frail. She’s living with a family member in a ‘granny annexe’ which is open to the main house, so she’s got privacy if she wants but doesn’t tend to keep doors shut. It appears that she, and they, are finding things increasingly difficult with care at home - she often stays in bed till mid afternoon anyway but there are increasing issues around hygiene and, most recently, ‘accidents’ which she tries to hide or clean up herself but she can’t get up off the floor. She’s also getting very forgetful.

Residential care is being discussed as a sensible option, but a few people I know have mentioned that that could accelerate deterioration.

While I am, and more importantly her immediate family are too, very much about quality rather than quantity with life, staying where she is also means it is so much easier to see and just hang around with her grandchildren and great grandchildren which gives her a lot of pleasure. The family are looking at other options too but I suspect the ones she lives with are starting to wonder how long they can cope. I have suggested, via DH, potential respite care or even just carers once or twice a day, at least for the time being to see if that helps enough to make it all more manageable.

This is uncharted territory for all involved so I’d love to hear views and experiences if anyone has had similar scenarios.

Thank you.

It seems a big jump from where she is (as you've described her) to a care home. I'd be first of all getting an assessment of her needs from SS to determine what adaptations can be made to her existing surroundings and how much care she needs to be able to function properly. Then getting carers in to do this. That won't be a "temporary" situation, but one that will perhaps increase as time goes on or lead to a decision that she requires 24 hour care. It also depends on how much of this care the resident family members are able and willing to provide. Good luck. It's a difficult journey for any of us.

Carers. She might object at first but just carry on regardless and she'll get used to them.

It’s a balance between the pleasure she might get from being in her home and the stress and worry of the other people living there

unless you are the one giving the care now , I think you have very little that you can say on this

Everyone wants to stay at home and not have carers, but many reach a point where that’s not an option.

if she’s able to be safe (ie: they can manage the doors situation and she doesn’t wander) then it may be possible for longer with carers coming in, but that’s likely to be privately funded.

I had this with my mum she lived at home but near me but it got increasingly difficult abs she was a wanderer so for her own safety she needed to go into care. The first home she went into was fantastic. She initially paid until her funds were below the threshold. It was the first home that was available and was in what I can only descibe as a working class area, however the staff were amazing they had an entertainments team, music events and lots of games and laughter. She has since had to move into nursing care as her dementia got worse and now doesn't really interact with anyone but I have never for one second regretted the decision. I can visit whenever I want but never have to worry that I'm not around.

Oh and also I feel that my mum would have been happier knowing that I can spend time with her as her daughter but not have to do her personal care as she would have been mortified that I was having to do that.

DM had dementia, a stoma, macular degeneration a stroke which caused dysphasia but was at home with three carers a day and my DB who lived with her. She went into respite a few times to give my B a break and also day care.Are adult social care involved because if not I think it would be wise to. DB was reluctant for DM to go into residential care but eventually it was too much. We found a lovely home which had three floors. Each floor had open plan sitting rooms with a kitchen and dining area so that residents could participate in baking or making drinks. They also had a private dining room so that families could join them for pre booked meals. My grandchildren who didn’t live locally, visited me during holidays and I would take them a picnic lunch and we would join my DM at lunch times and stay after. So what I am trying to say is there is help out there whilst at home and in the long term if you do your research some lovely nursing homes.

Agreed on at least trying with carers at home. In my experience (professionally) some people do experience a rapid deterioration in a care setting even with just respite stays.

Equally, I understand the impact the greater need for care can place on a household.

Does she have any preferences either way that she can articulate? Do you know if she would be horrified by carers assisting with intimate care etc?

It is very, very difficult to navigate the need for dignity and quality of life for your MIL with the needs and practicalities for those caring for her at the moment. It may well be worth trying the adaptations and carers at home as PP have said and if really no good then I would think a home would be a last resort.

But it will boil down to what those currently caring for your MIL are practically and emotionally able to provide. It is exhausting for everyone but there is no shame in moving MIL to a care home if they are really unable to cope any longer.

Good luck, OP.

We’ve had a very positive transition into residential care. I care for an elderly relative - EPICF ( elderly person I care for)

The company and activities/outings offered really improved EPICF’s interactions and interest in the world. After Christmas they actually told me hum much safer and secure they feel and how glad they were they made the move.

But you are going from a much less interventional baseline - we had a four time a day care package, emergency call system etc. before going for residential.

Paid care at home with proper incontinence products and people coming in to change them might be possible given there are family close by. But beware carers are in a tricky position if person refuses - they won’t force. One of the issues we had is that EPICF is a soap dodger and hates bathing/showering. They also hate getting up in the morning but on “wash day” (an increase in care package to give them a shower once a week that I fought and fought for ) they were inevitably up and dressed before carers arrived. So no shower happened.

This was causing endless skin issues which have been remarkably absent in care when a shower twice a week is just part of the routine!

Thank you everyone for your replies and experiences.

For clarity, any decision would be nothing to do with me but this thread is because DH is obviously very concerned with what's best, safest and sustainable so we are talking about it a lot. Also, none of the people involved have direct experience of this previously so other views from people, albeit Mumsnet, is useful.

From what I can see, she is with it to a point but seems to be getting very frail very quickly. Her hearing is shocking (always has been!) which obviously doesn't help either but she seems in a world of her own. As she's living with family they can, to a point, make sure she is eating and drinking but they are finding it a lot harder by all accounts. We are 3 hours away and both work shifts and weekends (NHS) so while we can help it's also not something that can be done quickly or spontaneously.

There has been no incidents of her wandering off or needing to be watched from that perspective. It's more the opposite problem, she doesn't want to do much at all (even get out of bed a lot of the time.)

@DanaScullysLegoHair I am unsure if she has said what she wants either way, and DH is yet to ask his sibling so he doesn't really know either as yet! I said it would be a good thing to ask, and sometimes the most obvious and basic things aren't always the most obvious questions to ask either! They are the sort of family that don't talk about feelings or anything 'uncomfortable' easily which makes me suspect that things might be worse than they seem for the conversations to be starting now. Finances aren't an issue so thankfully that major potential problem won't arise. I hope this doesn't sound too harsh but it also seems like she is just wanting to quickly wind down and go, she isn't as cheerful as she once was and she often doesn't seem to want to do much at all. Antidepressants have been suggested but she has had nasty reactions to medicines before so the GP has apparently said it should be an absolute last resort.

@BeaTwix Your point about hygiene is interesting. She won't refuse to wash, but often insists she has had a wash, which isn't great. I'm not sure how that would translate to carers coming as she might think they shouldn't be there!

God, it's so difficult!

@Fiddlesticks1 Wow! It's amazing how long people can last with numerous serious issues isn't it!

I think the family are concerned she'd feel like she'd been dumped 'out of sight' but I do think that residential care seems the nuclear option. It's not like this is an uncommon problem!

It’s possible that in a structured environment where everyone gets up and there is a morning activity the desire/ability to stay in bed all day might retreat.

Depends to a degree on whether home activities would be accessible. The home my grandfather was in didn’t have a great selection and refused to go. The one EPICF is in has a veritable smorgasbord ranging from manicures, gardening, music to lectures by academics.

Has there been any involved with Social Services up to this point? Has she had a needs assessment at all? I would think that should be your relative's first point of call, and then convene a family meeting from there to determine how you all might best get those needs met. She may or may not refuse carers, but it's a bit OTT to jump to looking at care homes before that's tried (unless the set up she's in at present somehow mitigates against that).

@SylvanMoon I am not fully sure what's been formally assessed and what hasn't. I know an OT has been involved for sure, but I am unclear on other aspects.

I've suggested to DH that he asks via text so we, well he, can have that info and not forget. As it's my MIL I am not really involved, I am more supportive for DH as no major decisions would have my input (obviously!) This thread is really helping as, as I said in the OP, it's unchartered territory for everyone involved. I am also wondering if there is quite a lot DH doesn't actually know about which is leading to such a jump but that is speculation rather than fact.

You have done really well to keep her in the home sphere to the age of 94. My DM recently died after 3 years in a very pleasant care home and so was only in the home environment with carers coming in until age 87. She was relatively amenable and easy to deal with but dementia is a progressive disease and eventually you are likely to need 24 hour care. The sooner you find a care home you like, the better. You could start with a respite stay and that could well turn into a permanent placement. Whoever is currently checking up on her constantly will be feeling the brunt of the ongoing care and no doubt also welcome some respite.

Both PIL's seemed absolutely fine up until approaching their 90th birthdays and then suddenly PIL had a massive stroke, seemingly out of nowhere, which killed him. The family think that he was possibly hiding that MIL was showing early signs of dementia even then - as I have said in a previous message, they aren't a family who openly discuss things that are uncomfortable unless it becomes unavoidable, which I think is becoming the case now.

I can say this on here as it's anonymous, but it's a concern that this situation could drag on for years but MIL's quality of life becomes less and less. I wouldn't say this to the siblings, although I have to DH and he said the same, the easiest (and unfortunately least likely) thing would be that a bit further down the line she went to bed and passed in her sleep. I know that is what we all want, for ourselves and those we love, and it's such a shame that that is so rarely the case.

@Itwillbefinehonestly I think that care homes, or at least the financial aspect, was looked at a long time before it could potentially be needed so they know what's available locally. It's easier to look at things that are emotive when it's not a 'must' I suppose. I don't know if things like carers etc have been looked at though. The more I personally think about it, the clearer that is as a sensible first step, unless there is a reason for this not to be mentioned as yet. I will suggest to DH that he asks directly (and hopefully then gets a straight answer!)

I am amazed that you do not already have private carers coming in. The person doing most of the care will not be able to carry on indefinitely. It grinds anyone down.

@Itwillbefinehonestly I am not a part in any of the decisions, she's also not even living near us. The family members (my inlaws) she's with have been, as far as they've let on, okay up until very recently.