Think a care home is becoming inevitable for my DM

[nonevernotever]

Going to be a long one afraid. She'll be 89 next month. She was always very fit and healthy until the first lockdown when she had a stroke that left her with a bit of weakness on her left side, lack of motivation/energy and she was diagnosed with mixed dementia a couple of years ago. She lives alone with carers visiting four times a day (only three times a day until her last hospital stay) to make food, help her take her medication and put her support stockings on and so on. She's just had a four week stay in hospital with a nasty bout of diverticulitis but has lost so much muscle mass and motivation that she's really wobbly even with a Zimmer . She can still shower herself but needs support to get there and is really struggling to dress/undress too. She's had an accident every day since she came home because she is struggling to get up from her chair without help. She fell down the stairs last weekend too. She won't let her carers help her shower or get dressed but wants me to help her the whole time. I'm currently spending an hour with her every morning getting her up, coming back mid afternoon to make sure she gets to the loo and then coming back to help her into her pyjamas. My sister is also more than pulling her weight and is the main person having to come down in the night if anything shows on the cameras, but we're both at the end of our tether and this clearly isn't sustainable.(Just in the last 7 weeks we've had three trips to a and e in an ambulance in addition to mum's hospital stay). We spoke to mum today about a care home on the grounds that we're not sure we will be able to keep her safe at home much longer (for example she wears a fall detector but when she fell down the stairs last week it didn't go off because she didn't fall from a height and she didn't think to press it, just lay in a crumpled heap on the stairs waiting for one of us to get there) and we 'd like her to still be able to enjoy the activities in the nursing home . She agreed immediately, but has looked so sad ever since that were feeling really guilty now, even though we know it's probably the solution. She has enough to fund 6-7 years in the good local home that she previously said was the one she wanted to go into if it came to it (she used to visit others in care homes all over our city, so knew most of them well) though it isn't on the council list. I don't even know what I'm looking for from this post. A hand hold? Validation? Or just practical advice on how to go about making the arrangements and helping mum to settle in and be happy when it will mean shedding most of her possessions, losing more independence and her cats having to come and live with us.

Ohhh, it is sad when it gets to this stage but you have to do it to keep her safe.

At least she seems amenable; quite often the elderly person isn't in agreement, which can be very stressful for all concerned.

I hope it all goes smoothly.

It is sad. But it's the only solution. Your mum can see this logically, but it's still upsetting that it's now reality. Don't feel guilty, it'll happen to us too in our time.

Talk about the things that are important to her she can take with her, talk about her being able to visit you (and her cats), talk about you having more energy and drive to be able to take her out to places/shops/cafes. Acknowledge that it's shit and find something hopeful

aw it is difficult OP but it could all work out and it’s all done out of love and care for your mum. I am sure you have done so but just reassure her about the cats - you can always have mum round your homes to see the cats again for family occasions so she can see them and know they are safe and she will be looked after in the Carehome and it may well improve her well being as well as safeguarding her.

It’s the only solution and she may well enjoy it and feel settled once there. Good Luck.

It is the best solution, and your mother has agreed - which is very unusual. So you are not contradicting her wishes, and you also know which care home she'd like to move to. It is very sensible and thoughtful of her to have talked about that in advance.

In practical terms, call the manager of the care home and ask to go round and meet her to talk about your mother's needs. Then you will need a second meeting for the manager to assess your mother, you can either take her in or the manager may visit.

The care home will be set up for her needs with mobility aids and carers on hand 24/7, so they will be able to keep her safe. Realistically her remaining independence means falling down stairs and having accidents, which isn't the kind of independence anyone would want.

You don't need to discuss getting rid of her things, that isn't urgent. Just reassure her about the cats. As others have said, you may be able to take your mum to your house to see them, if she is mobile enough.

Don't feel guilty. You've looked after her so well for ages.

I’m going to go against the grain on this one. I don’t agree that a care home is her only option. I think you’re kidding yourself that they are nicer and safer than they are.
I have worked in the care sector for over 15 years and have seen the realities of these places. I now work in community based care - for good reason.

You need to get to the bottom of what is worrying her with regards showering with the carers and stress to her that you or your sister helping her is not an option. She needs to accept the carers help. Remind her that if she was in a care home this would be the situation. If she is prepared to accept it in a care home then why is she not accepting it at home.
You need to get her an occupational therapist in to assess her and to advise her on safe practical changes to be made in the house to reduce the number of falls. No rugs, no steps, nothing to trip over, no unnecessary furniture. Hand rails where needed. Get her a different zimmer frame if the one she has isn’t secure enough for her. Or a wheelchair or small mobility scooter in the house. All these things a private OT will be able to assist with and at a lower price point than shoving her in a home.
Get her an appointment with the incontinence team from her GP practice.
In a care home she will likely decline quickly. Out of efficiency everything will be done for her. Which initially she may like. But it isn’t good for people. The saying use if of loose it is very very true. Care homes end up deskilling people. Instead look at ways of safely enabling her.

Please don't use terms like 'shoving her in a home'. No family member wants to have to make the decision to move their loved one to a care home but it can sometimes be the right option. I did not experience any of the issues you mention with my mother's care home.

They actively encouraged the residents to do everything they could for themselves and only intervened when necessary. My mother was very happy there and did not deteriorate quickly, she lived a lot longer than I expected - seven years.

I agree a lot can be done to help elderly people stay at home, but there can come a point when help is needed 24/7. At that point unless there is a live-in carer, whether family or professional, a care home is the answer.

Some really helpful points made here by everyone, thank you. @businessflop25 thank you for the alternative perspective too. In our defence She has had several assessments from occupational therapists over the years with another arranged for next week. I've also booked a private physio to come to the house for rehab. Until then we , and her carers, are bullying (in our case) or cajoling (the carers) her into doing as much as she can for herself. Unfortunately while she already has many of the adjustments you mention and which I think have contributed to her being able to stay there as long as she has, some just are not possible in her house. There are 10 steps up and down to negotiate between the front gate and her front door. The back gate is better - there are only four steps there. There are 18 stairs up to her bedroom. That has an ensuite with a double shower and a shower seat, but even then there's still a step over the sill. The Zimmer itself would be fine if she used it properly, but you have to remind her to do that . She's a furniture surfer - on her good days she abandons the Zimmer or swings on it with just one hand. On her bad days she can end up leaning forward at an impossible angle because she's forgotten to move her feet to keep pace with the Zimmer. I think she would struggle to learn how to use a mobility scooter too even if the layout of her house would permit it and in any case there are just too many twists and turns. Today was a very good day , and on her second trip upstairs (the first was because she'd had an accident, ignored the spare pants etc we'd left in her eyeline in the downstairs loo for just such occasions and went upstairs to change) with me walking directly behind her she did all but the last stair impeccably, and then her legs buckled on the top stair and she swayed backwards with me catching her. She's stubborn and always used to be fiercely independent so she doesn't remember to wait for someone to be there. With the best will in the world we can't be there all the time. I'm under no illusions about care homes being some wonderful haven either, but it's a heck of a lot easier because mum has spent so much time over the last thirty years visiting people in nursing homes. Up until her stroke in 2020 she was still visiting half a dozen different people every week. She gave us a very short list of homes to consider and a much longer list of her requirements. The top rated home on her list does also push residents to do things for themselves, is no more than ten minutes from both me and my sister and no more than 20 minutes for her friends. Because most of her assets are her house, while a live in carer would be a great option, it's only affordable for a year or so. Where we are the cost at £1890 per week on average for a sole live in carer is almost as much as the care home and she would still have to pay to maintain her house. So if she's going to have to move, I'd rather it was while she still has a chance of enjoying the activities (and the on-site cinema) and so we can spend time with her every day that isn't just about nagging her to eat, wash, get dressed etc.

I know all too well the horrible feelings of guilt, but the fact is, there may often come a point where someone needs 24/7 care - by which I mean someone on hand ALL day, ALL night, 365 days a year - which just isn’t feasible in a normal family setting.

And it does sound as if you’ve certainly reached that stage.

You really, really need not feel guilty @nonevernotever

Your mother needs to be somewhere safe. If you hadn't caught her today, she'd have fallen down the stairs and possibly died.

Please, there is no need at all to try to justify your decision on this thread. Or to anyone in real life. You've done your very best, and it's time your mum was in a place of safety, where she'll get her meals, her medication, and as much help as she needs.

You may be able to take the cats to visit. I take mine to visit a friend in a home.

Her house isn't suitable for her any longer

How about selling the house and moving her to warden controlled with 4 x care a day?

We tried Dad at home after a nasty fall and hospital stay but he (at 91) just couldn't cope with the stairs/steps/uneven slabs etc

You honestly sound as though you’ve done as much as you can to keep her in her own home for as long as possible. Moving your mum into a home at this stage will hopefully do two things: 1. Ensure she’s safe and well cared for 24/7 and 2. Release you from the constant worry/anxiety of ‘what’s going to happen today’.

When you’re caring for someone at home, you end up putting your whole life on hold and yes that’s a choice many make out of love but it’s also a very, very tough way to live. If the home is one your mum liked the look of (in years gone by) and you’re confident they’ll look after her, then it makes sense to do this now. You can visit whenever you want, help her room to look like ‘home’ and you get the additional benefit of being able to put down some of the crushing mental strain.

My DM (86) moved to a care home from hospital after a fall which resulted in a hip fracture.

Absolutely no regrets. There was no feasible alternative.

A good care home is set up to care for elderly residents. Corridors wide enough, step free shower rooms etc etc.

The staff helping DM know how to safely use the different aids which DM needs to move between bed and wheelchair. They do this far better than hospital staff did.

How about selling the house and moving her to warden controlled with 4 x care a day?

That's not a good idea. Someone with dementia will inevitably deteriorate, and require 24 hour care. They also never settle in a new house. It's hard enough for them in their old house, where they supposedly know the location of everything. Moving them to a house where they're essentially lost is going to make them even more confused.

This isn’t my experience of elderly relative in CH either. Went in (their choice) relatively early, before carers needed, but requiring more than cleaner, gardener and meal deliveries. They were at the stage when being at home was becoming overwhelming, and keeping on top of maintenance causing anxiety. They were very vulnerable to scammers/doorstep callers too. No falls by that point but it was only a matter of time.

CH incredibly positive and gave them a whole new lease of life. They were encouraged to maintain independence and the freedom from worry and the better diet compared to the frozen meals meant they really flourished for the first five years. Made new friends, got involved in activities that interested them. I think the companionship
helped - very miserable sitting eating microwave meals on your own all the time. They have now deteriorated (dementia) and need carer help but that’s eight years on from the initial move into a care home.

I had to move DFather into a care home. He had carers 3 times a day but was bouncing in and out of hospital with falls and infections getting increasingly frail. He was also reluctant to engage with carers helping with personal care. I could see this was going to end with him dead lying on the floor overnight having fallen or an infection carrying him off.

Since going into residential care he has not been in hospital overnight once. He has some falls, mainly because he is stubborn and doesn’t want to use aids, but most the home can handle most and he has only had an ambulance called once when he cut his head and was taken in for an x ray of wrist.

I honestly think he would be dead by now if he had clung on at home. He has a decent quality of life, gets fed a variety of decent foods, has entertainment options and other people to talk to when he wants to.

Do speak to the homes you are interested in and visit, they won’t necessarily have space immediately but the nature of the environment is spaces will come up without notice. Full on charm offensive if there is a lack of places so they call you first as soon as a space appears - you have to move quickly.

do you have POA? If not strongly recommend putting in place if she still has capacity, it makes things 100 times easier.

A care home literally saved my mums life. She was there 5 years until 94 years old. She was very happy. She thought it was her own home.

Remember, pre dementia, it’s very unlikely your DM would want you to be living like this in the prime of your life. It’s certainly not a sacrifice I’d like my children to make with jobs, lives, families and opportunities of their own.
I agree it’s CH time. No better use of their assets at this stage.

OP I looked into a live-in carer for my mother too, and came to the same decision in terms of costs. And I didn't think staying home any longer was in her best interests anyway. I agree with the posters who say their relative would have died considerably earlier if left at home.

As you say, there comes a point when mobility aids are little use because the person cannot or will not use them, and they can't safely be left alone.

It is sad when the person's health and mobility declines to the extent they need a care home environment, but it can be a positive option and your mother has even selected the one she wants, so you're following her wishes.

I’ve been through the move to care home with multiple grandparents and parents. It is sad and hard but in all cases, it hundred percent was the right choice. They eat better, get their hair done regularly, have some company. My grandmother in particular had a new lease of life. You can’t keep doing what you’re doing now, you’ll break under the strain and also she’s just not safe at home.

When I think of my DM's care home compared to her own home there are so many things which make my DM's life better than it would otherwise be:

• her room is set up for someone with severe mobility issues: space, hospital style adjustable bed.
• her shower room has sufficient space plus a high seat toilet so DM can be assisted
• the care home has a range of assistance aids so that DM can be safely moved between bed and wheelchair. The staff are trained to use these safely.
• furniture is designed for people who have mobility issues: sturdy, good height
• staff are trained and respect that residents have a choice and are facilitated to make choices.

Something I do appreciate with my DM's home is that care is centred on the residents. Sometimes family expect care to take a particular form, the care home prioritises resident needs over family wants.

This last one is especially relevant to me, I have a family member who wants to control all aspects of DM's care without always really having the knowledge to back this up.

Some really good points to think about here - thank you to each and every one of you.

Today is one of the worse days and it's really brought home that there aren't any other real options. Mum only recognised her younger grandchild today and was asking them to tell her who her family is. This morning she managed to shower and dress herself, but midway appeared to forget how to move her legs when walking with the Zimmer.

Can anyone recommend practical steps? I know we will need to make an appointment to visit the home (and others if they don't have a vacancy or something doesn't feel right when we visit) and we'll need to speak to mum's financial advisor or a specialist advisor to work out how to maximise her money for her care. Do we need to speak to her GP/the council anyone else at this stage?

Good care homes do exist, and they’re not necessarily the most expensive, either. Speaking from experience of 4 elderly relatives here - my Dm, FiL, an aunt, and an aunt of dh.
All very well cared for, and my DM lasted very nearly 8 years in hers, until she died at 97.

I will add that we did in each case look at quite a few before choosing, though.

Does she already get attendance allowance? She may well be able to get the higher rate when she goes into a care home.