Guilt at placing mum in a home

[Orangebadger]

My mum has vascular dementia. She's had it for 12 years but it's been very stable with minimal progression to the point where other problems were more of an issue than her dementia, such as mobility decline etc. anyway she has lived with my family for the last 8 years. It's been fine. The last 2 she's had a carer morning and bedtime as that was becoming more challenging for her with her mobility more than anything else. However she had a few falls a couple of months ago which resulted in a 3 week stay in hospital, since her discharge she has been a lot more confused, quite combative and aggressive towards carers. She came home with carers 4 x a day. She was becoming a lot more agitated at night and waking and calling for me. Each time the carers came I was called to encourage her to let them help her, quite honestly it was a nightmare! I can't even write half of the issues as my brain is still boggling from it all. Anyway after another fall, well a few falls, she's back in hospital and this time after discussion with medics and therapists it's been decided that she needs placement in a nursing home. I completely agree, she is just not safe at home and needs care 24/7. But I feel riddled with guilt about it even though I know it's the best option for mum, I know she will hate it.

Not really sure why I am posting this! I am just looking for others who maybe understand. I am relatively young to be dealing with this, in my 40's. Mum had me late in life and I too had my kids later, so have young children too. Most of my friends are not at this stage in their lives yet. I am also an only child, so no siblings to share/ vent to, not that those with siblings have that guaranteed! I do however have a wonderful DH who has been incredibly supportive and wonderful with mum.

I feel your pain we have recently put mum in a home she has vascular dementia and alzheimer's she has declined rapidly since she was first diagnosed 18 months ago dementia is awful I have read falls can speed up the dementia sadly

I’m sorry you’re dealing with this, it’s so difficult. I lost my mum when she was only 60 years old so have no first hand experience with what you’re going through (although was part in some heart wrenching decisions with my mum’s 10 week hospital fight). I’m also dealing with it from a distance with my aunt who is a very “old” 82 and has fought tooth and nail against moving into a care home. In the end it was the many falls, the many “accidents” (she couldn’t make it to toilet towards the end in her home) and her aggression that made her only son (my cousin) make the incredibly tough decision that she had to go into a care home. He’s dealing with cancer himself and her carers “turned on her” and called her “a death waiting to happen”.
It’s been truly horrendous listening in on this from afar. My point of sharing this is that my aunt is now happily settled into a care home. Yes she was angry, yes she was truly vile to family for sometime, but eventually the lovely staff and the many new friends she’s made in the home has made her realise it’s in her best interest. And she could not stay mad at her son forever, he’s the only support she has after her husband passed many years ago.

Hang in there, it’s very difficult, some days it seems to be all an uphill climb but be kind to yourself- you can’t live like you were, you need to prioritise your young children and if your mum was well in herself she’d tell you the exact same thing. You’d give this advice to a very good friend who shared with you what you did us here. You are doing the right thing and that’s very difficult but it’s going to be for the best. Sending love ❤️

Hi I work in dementia care and I've been in a position where I've had to make the decision for a relative to need full time care. You will feel massive guilt at the beginning but you will soon realise how much you were struggling and that this is for the best, the guilt doesn't go away but it certainly gets a little easier.
Good luck with it, the next few weeks may feel like an emotional rollercoaster

she will be much safer in a home. and now you can concentrate on visiting and doing the 'good' social bits rather than doing the shopping / organising / worrying.

do visit when you can - set a schedule for once a week or whatever works. when you visit, take time to talk to the staff - find out how your mum is doing, tell them what she likes etc.

bring a magazine or some photos when you visit - it helps to have something to talk about.

make her a 'memory board' with lots of photos of family and things she will recognize to decorate her room

make sure she has suitable clothes for the care home and put nametapes in them.

and remember that she is now getting the care she needs, even if she isn't happy for the first few weeks.

Sorry you're going through this, it's really tough.

I once had an elderly relative who always said she dreaded going into a care home. But one day the time came, and I remember she told me she was actually glad to be there, because she felt so well looked after. Deep down she welcomed the extra help and it relaxed her.

I hope your mum feels similarly peaceful there.

A friend's dad had early onset dementia; they considered caring for him at home, but were strongly advised not to, as he was periodically aggressive, and they had young children - they were told that it wasn't good for their children to grow up fearing their grandfather's outbursts (also, he was only 60 when diagnosed, so younger than usual and still strong, not at all frail, so outbursts could be really frightening), so he lived out his life in a home. They were very grateful for older, wiser friends who told them that they hadn't failed their father, and they shouldn't feel guilty about finding appropriate care for him. It sounds like the same applies to you.

Thank you all for understanding and sharing your stories. @orangetriangle sorry about your mum with having both Alzheimer's and Vascular dementia. I haven't read that falls can exacerbate dementia but I have that infections can. Poor mum had back to back pneumonia and then covid. So I imagine that May play a part.
@Vallmo47 so sorry about your mum. I have a friend who lost her mum to early onset dementia in her 60's. Just horrific and at least my mum is elderly. Your aunt sounds very similar to mum, I just hope mum can settle somewhere and be happy again.

Yes I imagine the guilt will never subside, maybe it will if mum is happy elsewhere and like you say @parietal I can concentrate on the nice things and spending quality time with mum, which has been lacking for the last few months for sure.

@gethaggling I have no regrets about having mum live with us, especially through the pandemic, we at least got to see her and she wasn't in a home full of covid with no vaccinations etc. But yes one of my boundaries has been aggression, now she has not been aggressive with any of the family, just the poor carers, but obviously this could change in an instant and I would not want my kids to either witness this or be on the receiving end of it, so the time is right. The other boundary is falling. I'm here with mum in hospital now, she's seems settled here, still asking about my dad, he died 11 years ago, it's only the last 2 weeks that she seems to have forgotten that. It's awful having to tell her over and over again that he's died.

I'm so sorry @Orangebadger but it's not your decision and you shouldn't feel guilty.

I'm assuming that they had a Multi-Disciplinary Meetinv and it was decided that the best option to keep your DM safe is in a card home.

You agree so there's nothing to feel guilty about, you're simply doing what's in her best interests.

My DMIL was moved to a care home 2.5 years ago with Vascular Dementia and seemed to really like it there.

It is partially my decision as I have power of attorney for both financial and health and mum lacks the mental capacity to really know what is in her best interests. She's waiting to have a mental capacity assessment which she will not pass, but I know this is needed before the next stage.

If she's up in the night though @Orangebadger you simply can't keep her safe at home so it really is in her best interests. From experience, it's just a very short matter of time till she starts wondering at night and it's very cold and wet to be put in your nightclothes

Absolutely I know it's the best thing for mum and she is not safe at home. She can't wander at all though as her mobility is too poor, this is why she's falling. It's a triple problem, refusing all help from carers, falls and nightwakings. All far too much, she needs care 24/7. But this does not stop me feeling guilty. It's also happened very suddenly, like her dementia has fallen off a cliff edge. Before its was really her short term memory and a lack of inclination for self care, that was pretty much it. Now it's so much more, I guess it's just taking a bit of adjusting to for me. I imagine my guilt will subside over time. My aunt was in a nursing home as she had advanced MS, her home was lovely, my dad also spent the last few months of his life in a home. However they were both very pragmatic people and had full capacity so was there choice. I was happy they were getting good care and I was able to enjoy my time with them. Mum is very different, she has always hated residential/ nursing homes and really struggled to go and see my aunt especially, less so dad. So I know even in her right mind she just didn't like them.

It will be best OP. We had to make that decision for my lovely DMIL when her increased care needs meant that 2x daily home care visits weren't enough and we didn't feel she was safe at home. Also because we weren't local to her the food situation wasn't great as all I could do was stock her up with ready meals which the carers heated for her.

DMIL had been against the idea of residential care, but once she was there she settled in very quickly and a few months later, because of her memory loss, she couldn't remember where she used to live before the home. She had been lonely at home since FIL died and she enjoyed having company at the home. Also she loved the food there - the meals freshly cooked and having people bring her tea and cake or tea and biscuits whenever she fancied. She got very attached to some of the carers and they to her. She was there for 2.5 years before a stroke which led to her death.

My top tips are: visit lots of homes to find one you like. The one we chose for DMIL was very good but some just reeked of urine and doom. We chose one near us so we could visit easily.

You'll need to ensure that every single item of clothing is marked with her name for the laundry. I ordered iron-on name tapes. Go through her clothes, books, possessions, pictures with her to decide what she wants to take and leave. Check out how much space is in her new room - DMIL took some items of her own furniture but used the bed and easy chair provided by the home. We put up quite a few of her favourite pictures.

Make sure the home knows about her food preferences- DMIL hated mushrooms and didn't eat beef so they made sure the kitchen knew that.

Also you'll probably be asked to provide some "pocket money" for her - they kept some of DMIL's cash to pay for things like trips out, hairdresser or chiropodist visits, and if she wanted to donate if they had a charity event. They would let me know if I needed to top up her cash reserve.
It was a relief to us when DMIL was settled in a home as we knew she was eating well, having help to wash, being given her meds on time, having her incontinence dealt with, could not wander out into danger and would be found quickly if she fell or had another stroke.

Good luck OP.

I do really feel for you and I know it's not as easy as me saying "don't feel guilty" but hopefully you can take some comfort from the fact that the HCPs are saying that's the best and safest place for her.

And I know that if she was how she was before she wouldn't have liked a care home but dementia does change people and you just can't predict if she will like it or not.

Asking to go home though is very common, so be prepared for her to ask. It doesn't mean though that she's unhappy there or wants to come back to your home. Usually is just a sense of hone and safety that they remember from long ago

I seem to remember reading somewhere if someone has forgotten their partner has died, and you would have to keep repeatedly telling them that, you tell them they are currently out shopping or something similar so they don’t have to go through the distress of being told daily their partner has died.

My DF started to have falls and ended up in hospital. He had cancer and dementia. Initially they said he could go home but DM couldn’t cope with the falls and his memory fell off a cliff once he was in hospital so was at the stage he couldn’t be left on his own. My DM was distressed about him having to go in a home but a nurse said you can go back to being his wife and not his carer. Unfortunately the cancer got to him before he could actually go into a home

We've gone through this this year with my grandmother following my grandad's death in January. The difference in her from last year to this is heartbreaking. She had to go into a home during the summer following a couple of falls during the night, one of which caused a head injury. She was also getting day and night mixed up and the family were really worried that she would start going out and wandering in the middle of the night. We had to remove all of her tablets because she was forgetting she had already taken them and flying through her prescriptions too fast.

It's very sad but she is safe and cared for where she is now and has visitors just about every day. Had she been at home or staying with family, she would almost certainly have fallen again or put herself in danger.

But if the professionals had not agreed that she needed to move into a care home, despite you having POA they would not have facilitated such a move. So really, the decision was out of your hands. 💕

We put my mum in a care home 2 yrs ago because we couldn't get the care package to work and I thought it was the best way to keep her comfortable and safe.
My brother didn't agree and it's been a bit of a fight but it really was a good move for her which he had begrudgingly admitted.
It's a lovely home and her care has been good.
She's currently in hospital after a fall and I'm just willing her to get better enough to go back to the home as being in hospital is not good for her.

I seem to remember reading somewhere if someone has forgotten their partner has died, and you would have to keep repeatedly telling them that, you tell them they are currently out shopping or something similar so they don’t have to go through the distress of being told daily their partner has died

A white lie and distraction is definitely the kindest way. My DMIL asked for her DM & DF right up until her speech went. We used to say they'd gone shopping and around pick her up in a bit and then distract her with something else. Revealing the truth of them dying would put her into full grief, which wouldn't have been fair as she wouldn't remember what had been said but would still be very upset.

My friends mum couldn't remember that her husband had died. They were with him in hospital when he died and the next morning she phoned at 7am to ask what time they were going to visit. Once the funeral was out of the way she told her he was visiting his brother. That kept her happy for 3 years until she died.

I agree about the white lies to keep your parent happy. I had to sell my mother's house to pay for her to go into a home. She was fairly happy there but used to ask me when she was going home (someone else was living there). I used to ask her if she had her key and she would rummage round in her bag until she found it. I would then say 'that's good. When the doctor says you can go home, you will be able to get in'.
I think her physical health improved when she went into the home.

it's the best option for mum, I know she will hate it.

We went through this with DM and DMiL. They both adapted remarkably well, the staff were kindness themselves. It didn't take long for DM to start telling us that she was on a cruise and ask me to get her an evening handbag to 'go' with her dress.

The staff went along with it and DM was safe and settled. No one was more surprised than me.

The DM you remember would almost certainly hate it. It may be the right time for her. If you can find a room, an initial two weeks respite visit can be a good way to ease into the idea.

Your nose will tell you which ones to avoid. Other than that, proximity to your own home and the ok to visit anytime rather than at set hours were key for us.

All the best, and let yourself off those feelings of guilt.

I get this, although quite correctly you should feel no guilt. Easier said than done I agree. My dad who is 80 recently went into a care home and I’m an only child although I do still have mum but she is currently unwell. Whilst I know it’s the right thing, it did take some time to get the wheels moving so I completely understand your position.

There’s some great advice on here and I wish you well.

Um not everyone feels guilt, please don't tell people that they will feel 'massive guilt', and indeed the guilt won't 'go away. You are wrong.

OP your mum will be safe, that is key. Please do not feel guilt, it is unnecessary anguish to heap upon your head.

I had this with my lovely mum but it was the safest thing for her. She had mixed dementia (vascular and Alzheimer's). It would have been impossible for me to look after her by myself as I am a single working mum with a tiny 2 bed. Luckily we found her a lovely care home just around the corner from me where the staff were wonderful and cared for her until she sadly died three months ago. Try not to feel guilty but I know it's hard.

Agree with Tight. Some people just feel a huge sense of relief. My DMIL wasn't safe, fir a long time and getting her into a caring home where she was safe was the best thing anyone could have done for her.