Guilt over Mum being in a care home

Dear Nansnanny,
You have all my sympathies and I can understand how hard and difficult life is for you at the moment, especially as you must be exhausted and weary, which is not the best time to try and make serious decisions. So in my background, I have been a teacher and also done hospital car etc etc., and so have met many people who have been in a similar situation to yourself. There is always something for us to feel guilty about in such situation, whether you feel that you should have organised a care home before, or whether you feel bad that they are having to be in a care home and that you cannot , due to your own health do anything about it. So my suggestions are based on some realities, which you might be able to use to help you to think in a better way for both yourself and for your mother.

Firstly, could you try and have a bit of a rest, and then write down the situation as it stands today, the reasons for it, how your mother has been over the previous months and the things that she has got muddled over, whether it is where she actually is, or blaming you for stealing from her or poisoning her. Then also set out on another page, your own situation, your health, the pressure on you for being the nearest in mileage to her, and your own relationship and wishes for your life with your husband. So, you could also then write on another page, what you wish you could do, but also put the reality beside it , showing why it is not possible to do that.

You then have these pages to look back on in the future, when you might be having a day feeling very guilty, and looking at these notes, it will remind you just how exhausted and worried you were, and recognise that if you chose to have your mother with you right now, you would be even worse, as you could not even have a decent nights sleep and would be on constant alert and stress, on her behalf and we know that being constantly on edge and worried is the very worst we can do for a peaceful way to live.

Then if it possible , could you and your husband go away for a few days to b and b, or a caravan or whatever, but away from your home. The idea of this is that you would need to organise someone else in the family or a close friend to visit your mother, just while you are away, where they could promise to ring you if there was any need, but that the idea is to just give yourself a little time together, without stresses or worries. Not to do a great deal, but just being able to get up and have a leisurely breakfast, and sit and read the papers or go for a gentle drive round somewhere. Have coffee and look at some flowers or go to the pictures , perhaps watch the last downton abbey film. The idea is to just stop pushing yourself physically and mentally, and remember the pleasure of just you and your husband enjoying each others company. Dont make it a no go area, but try not to think of the situation at home or make plans until you return. I do think that if you could manage to do this, you would relax, regain your own strength in a little way and then be able to face the future as it actually is.

So when you get home, hopefully rested and calm, you could sit with your husband and write down possible scenarios. So you think what would happen if your mother came to stay with you, and if you are honest you will see that it really is not safe for her or you. If she came to stay with you and had a fall or any sort of accident you would again put the blame on yourself, which would not be fair to you, but our minds dont always go for the reality. Then you might think of the situation in the care home. So, without being smarmy, you could look out for the staff that you think are kinder or more in tune with your mother and try to get a relationship with them, where you are able to ask questions and know that they will do their best for her and you. At the same time , think of how you are received in the care home. Can you walk in at any time or do they have times when visitors are not allowed? So that can be practical that they have meal times and times they are getting residents dressed etc that they may not want visitors, but you should be able to go in and out easily other than those time s, so popping in at different times, so that you are not in a set routine of coming in at 2pm etc will let you see how things are going throughout the day and if you think that there are enough staff etc., and that they are treating residents well in general and your mother in particular. In practical things , is it possible for you to take a chair and perhaps a small table from her home that she recognises and makes her feel comfortable to see familiar things. If not, can you do quite a lot of photos of her past life for her to see, and also to let the staff recognise her as the person she was, not just the person she is now. Does she have a particular perfume she used to wear, that you might be able to get for her, is there a perfume that you actually wear that will remind her who you are. I think aromas and smells are very important and often are reassuring . So when my son was little and we travelled abroad, he had two little knitted animals a teddy and a rabbit, which I only washed one at a time, so that the familiar smells were there, and if they were in the bed that was his bed.

As for her getting very upset when you leave, this used to be very common with children when I was teaching. I used to get parents to leave, but then for them to go outside and stand in a particular place where they could look into the classroom, but the child would not be able to see them. It was always very reassuring for the parent to note that once they had left, their child was usually happily reading or playing with other children, but if they came back into class they would immediately start to cry and ask to go home. Well I know your mother is not a child, but in certain ways things are similar. Perhaps you could also leave a scarf or a pair of gloves or even a sweater that she knows in her room or near her chair. Then when her mind wont let her speak about her worries or wonder where you are, that sight and smell of something familiar may give reassurance that she is not forgotten, and she will remember that even if she cannot remember your name, she knows you are someone safe and loving who will come to see her soon. If after a while you do think that this is not the best care home for her,you could at the same time be looking about to see if there is anywhere else that seems more suitable for her, and try visiting that care home , seeing if it works in the similar way to the present care home, how safe it seems and how welcoming and if the residents are enjoying things not just sat round a room with nothing to do.

Finally, I think your sisters must recognise the greater pressure that is placed on your by virtue of where you live, and I would suggest that you could try and organise a planned few days away every so often, where they might come and stay in your house and take over visiting. Alternatively do you think there is anyone either a friend or even someone you pay to visit your mother, who you could take with you for some visits so that your mother gets used to them. She may not recognise them particularly, but could still understand that it was someone from her family group keeping an eye on her.

I do hope that some or any of these ideas might help you look at this situation in a slightly different way. Even if these ideas do not help, they may give you other ideas that would give you some ways to see forward and not feel guilty. My granny was so very important to me, when she was killed in a car accident for many months I felt guilty that I had not finished a letter to her and sent it to her. It took me a long time to realize that my granny would not want me to feel like that and had never tried to make me feel sad or bad, so eventually I was able to get past that, and if you could look back some years, and remember how she was in better days, I think that that mother would not want you to feel so bad now, and would want to make your life easier and more pleasant. That is actually the bottom line, in that feeling guilty and miserable will not actually improve any of your mothers life now will it? But if you are visiting when you are rested and more at ease I do think she will feel that ease and you will both be able to enjoy time together. I am a singer, and it is proved that music is heard and recognised in a different part of the brain to speech. When we gave a concert in one care home a gentleman joined in a song when he had not spoken for some considerable time. Music does have a special effect on people and perhaps there is a type of music or favourite old songs that she might enjoy and remember and you could even sing with her, which she might enjoy doing and you will see a glimpse of the mum she used to be. Wishing you all the best, and hoping that you can give yourself some peace and space, before shouldering the burden, but be prepared to accept help from your husband, sisters and friends.

Please do not feel guilty. When dementia comes into the equation I feel it changes everything.
It was the hardest most heartbreaking decision when mother had to go into a home for her own safety, getting good care at home is hard to find and it is really tough to take on caring for someone 24/7.
Visits are hard, I go twice a week and it’s an hours drive and I stay an hour. I tell myself that is nothing compared to being a full time carer and I try to treasure time with her.
I remember Mum’s GP saying to me don’t let the dementia ruin your life as well!
The care home should notify you of all injuries/falls/incidents. I get a phone call but if I don’t pick up and email is sent from the nurses.

Namsnanny - Your post has brought back memories for me. My mum had dementia and on the advice of a social worker she stayed in her home with carers going in 3 times a day. They were not good. It was so stressful as she deteriorated. Some days she would be nice other times she could be really nasty and many a time I came away feeling the worst daughter possible only to go back the next day and she would be back to normal nice. She went walkabout one evening and luckily a kind man took her to the police station. She thought it was lovely. She would hide food and developed some really strange habits. I like others have said had to use 'love lies'. On rare occasions she would recognise me but usually I was 'Doreen'. (one of her cousins). After a fall where she was left on the floor by one of the carers she was admitted to Hospital and this was a turning point as it was suggested she come to live with me, which would not have been possible as I was working and with children at home did not have the room so she was put into a temporary care home for 6 weeks. She became a different person. Happy and looked after. I stopped worrying about the carers and her new social worker was great. After an assessment it was decided that she should stay in this particular home and although it was not local I knew she was safe. Unfortunately her and several of the other residents caught a nasty chest infection which led to her demise.
My mum did say to me on the last time I saw her "Flake you are a good girl " and I treasure that. Unfortunately I was not told that she was dying so could not be with her at the end. I just hope she was not alone..
I still have moments where I feel guilty even after 8 years but you have to put things into perspective. Be assured that you have done your best, and be kind to yourself.

There is nothing to stop you going to view nursing homes specifically equipped to deal with dementia residents, prior to social workers updating you. You can also ring around to see who has an availability. I’ve heard many people say as soon as they walked in they knew it was the right place. I would also be asking if you could take some of her furniture; a comfortable armchair or chest of drawers, along with photographs or other important familiar things. They can offer a lot of reassurance and comfort. With regard to a camera I think that’s a great idea, some of them can let you access to check her through your mobile, giving you reassurance too. Wherever Mum resides you have to remember that she needs 24hr nursing care and the decision was made in her best interest for safety and I’m sure with a lot of love. Be kind to yourself first and foremost, it doesn’t mean that you love your mum less because you are unable to care for her. You are showing how much you love her be acknowledging that she needs so much more than you can give.
Sending hugs and well wishes.

Lots of advice given already. I would just add that it might well be helpful to contact your local branch of Carers UK. I found them extremely helpful when my husband had to go into care (dementia & physical frailty). They are there to advise and support YOU, and that is invaluable, because you are carrying a lot!

Incidentally, the care home my mother is in, ring us the moment there is any incident where Mum might have received an injury even when there isn't one! Suddenly out of the blue, she stood up and tried to walk for the first time in 3 years yelling, "I'm off to catch the bus home!" Naturally she fell. However, she bounced well and there wasn't a bruise on her. The home rang and explained what had happened. Her usual carer was so shocked, she was in tears. Now there are protocols in place to safeguard her. If you don't have that in the home, I'd make other arrangements.

Sorry, mistype "dementia"

My daughter in law's mother and her aunts looked after their mother until very recently, with carers coming in a couple of times a day. She had demential and they all decided, with medical advice, that she should go into a care home, something she had always fought against and which they had delayed for some years.
However now that she is there she is very happy, not being at all bothered that she is no longer cared for by her family whom she doesn't usually recognise.

As a family we felt terrible guilt when my mother went into a Nursing Home. Not only did she have dementia and was doubly incontinent but was also unable to walk. It just became too much for all of us. My mother also was desperate to come home. At first we told her that she had to stay there for your sakes but now we say things like, "When you are fit enough," or "When your room is ready," as she no longer has a memory to remember what we say for more that a couple of minutes. She is much happier.

We used to visit every day but when we realised we could visit her, walk out and then return a couple of minutes later but she couldn't remember we'd been there 5 minutes before, we cut it down to every other day. She no longer misses us in the same way (most of the time doesn't even acknowledge us) but we continue to visit so we know she is being well cared for. If she is unwell, we up our visits. We don't need to because the care is excellent but feel we must.

We used to take her out but she gets so distressed now as she is doesn't recognise anywhere least of all the outside of the home when she returns.

It does get better and what you have to remember is that you have a duty to you and your family to have a decent life too. That is sometimes hard to see when you are going through the care stage and the initial months of your charge going into a home.

Primrose I think that is the secret formula. The ones whose relatives are very involved and visit them a lot tend to get treated better as they know it will be noticed quickly if anything isn't right. This sounds a dreadful thing to say and I know there are many lovely carers and homes, but far too many that are not.

In some ways I wish it was possible to just let her go home if she wants to and, as she is probably not all that far from the end of her life, let her enjoy her freedom until she finally does something careless that brings her life to an end. Does another 2 years of safety and care (though I am worried they didn't mention her injuries) balance 2 months of freedom spent where she wants to be. HOWEVER, if you took her home you'd get blamed when she finally forgets something is cooking and sets fire to everything. This society and the law values length of life over every other consideration of quality of life.

Witzend

One thing I’d say to anyone going through similar, or reluctantly feeling that is really is time for a care home for a relative, especially if dementia is involved.

Please ignore those pious types who tell you, oh so sanctimoniously, that they’d never put their relative in a care home!

Ten to one they’ve never had to cope with dementia on a day in, day out basis. Most people are utterly clueless as to the practical daily realities. I will fully admit that dh and I were blithely clueless when we first took FiL to live with us. Like so many, we had to learn the hard way.

Paragraph 2 - and those who assume you put your loved one in a care home and leave them! I visited my Mum every other day for over 3 years. Sometimes I brought her back to mine for a day, sometimes I pushed her out in the wheelchair and very often I stayed for lunch at her care home as she enjoyed this and the food was really good. Plenty of other families did likewise.

That is so hard for everyone Namsnanny. ... I am sorry you are all going through this.

Namsnanny

I just wanted to say that I understand your feelings - i can relate 100% to that permanent feeling of dread. I have reached the point where I literally feel sick every single time my phone rings, or even if I hear the same ringtone on someone else's phone when I am out of the house, fearing it is a call from or about my mother.

We had to put my mum, who is the same age as yours, into a care home only a couple of weeks ago. She had reached the point where she could no longer cope at home even with carers going in on a regular basis.

Neither I nor my sibling lived near enough to be able to be hands-on, and staying with her for the two weeks prior to her going into the home actually brought me to the brink of a breakdown, and confirmed that even if my home were suitable for her to move in with me and my husband (which it isn't, and is to small to be adapted), this option would never work.

Mum was accepting of moving into a care home near us, but just two weeks on things are dreadful, and the guilt I feel is awful. Prior to going into the home, she was a bit forgetful, and could get a little bit confused if she was outside her comfort zone, but most of the time she was still very aware of what was going on around her, and was still very sociable, enjoying the company of her many friends.
But after just two days in the home she became very confused. A UTI was diagnosed, but her confusion has got worse since then, not better, and she is phoning me several times most days (and evenings) in an awful state, believing that I or other family members have been killed, or arrested, or even worse - some of it really is the stuff of one's worse nightmares, but i wont dwell on those..

She is so frightened and lost, and I feel literally sick with guilt for having persuaded her to move into the home, but helpless too, as other options are very limited right now until her house is sold to make more funds available.

The sensible part of my brain tells me that we need to hang on in there, and try to accept that we can only do what we can do, but even as I write this, the rest of my brain that this screaming that is far harder than it sounds and isnt enough.

I do hope things improve for both you and your mother 💐

One thing I’d say to anyone going through similar, or reluctantly feeling that is really is time for a care home for a relative, especially if dementia is involved.

Please ignore those pious types who tell you, oh so sanctimoniously, that they’d never put their relative in a care home!

Ten to one they’ve never had to cope with dementia on a day in, day out basis. Most people are utterly clueless as to the practical daily realities. I will fully admit that dh and I were blithely clueless when we first took FiL to live with us. Like so many, we had to learn the hard way.

I am sorry you are in this stressful and emotional situation.
I think there are 2 issues here:
1. Is she well enough to be cared for at home with a proper care package? It sounds as though not. So you have no need to feel guilty.... but it is hard to swallow I know. I had to throw in the towel with looking after my late OH and it was very hard.

2. Is she safe and being well looked-after in her current home? It must be very stressful feeling insecure on that score.

I would advise speaking to Age Concern as a start. They will be used to such queries and they have lots of experience. They will signpost you to the next step.

In the middle of all this, please look after yourself. There is no perfect answer here and that is not down to you ... it is a fact of life and you can only do your best to achieve the best compromise possible.
Sending a handhold.

Humbertbear ... The camera is a good idea. I'm hoping she will be moving out of there soon, to more permanent accommodation.
Thanks for the suggestion, very helpful.

Some people, as you say just don't really know what they would do until they are in the same situation.

V3ra

However the injuries happened to your mum, from what you say the care home didn't tell you about it at the time. That's not acceptable.
I'd be looking for a different home, like other people have suggested.

Yes, your right. I'm glad people are underlining the fact that this is not acceptable.
I was surprised they didn't call about the first injury tbh.
They were quick to phone when I forgot to leave the incontinence pants she needs, which I was grateful for.

CariadAgain ... Good advice, which I shall certainly take on board. Including the thoughtful last paragraph.

We are supposed to get a recommendation for Mum's future from her social worker soon. So hopefully we can be checking out homes soon.

Off topic, can I ask how you knew lockdown was on the way?

Erica23 ... Your post made me smile, although I know I shouldn't .
The thought of all the problems people have to go through from all perspectives of dementia, getting told off for talking wasn't one I had thought of

Yes my mum used to push a chair against the door as the lady across the corridor used to wander in, she was also confused and used to get angry with us whilst we were visiting for talking.

Esmay

Am emotional rollercoaster is exactly how anyone feels when it comes to elder care .
It's horrendous for you to deal with.
You aren't alone.
One friend had to go abroad to get her mum after a kind neighbour phoned her to say that her mother was behaving oddly.
It was a nightmare bringing her home and it was nightmare at home trying to deal with her confusion.
Finally when she attacked her husband she was taken into care .
Even so social services were alerted about some bruises on her mother -they had been caused by people trying to prise her mother off her husband.
I know an elderly lady ,who barricaded herself in when her daughter came to collect her to take her to the home .
It is heartbreaking .
My father began to show some signs of cognitive decline .
I was asked how he'd been before he'd become old and sick .
It was very difficult to explain that he''d always behaved in an odd way and being demanding ,angry and paranoid was the normal for him .
I could see how terrified he was of carers and nurses .
Any change in routine distressed him .
He was very difficult to calm .
But I made the decision to care for him until the end and that's what I did .
It's what I wanted to do as I'd promised my mother .
Whatever you decide to do is your choice .
Don't feel remotely guilty-you are doing your very best for her .
I wish you lots of luck .
Take care .

Esmay ...Thank you for posting. Funny you mention a lady barricading herself in her room, that is exactly what Mum does.

The door locks from the inside, but of course the staff can actually open it if and when they need to, so she piles up carrier bags with her clothes in them. She is quite afraid, and doesn't want to talk to anyone.

I do appreciate the good wishes, to know others understand helps

Amendment - the Lockdown started 2 weeks after he went into that home. Not 2 weeks before.

Indeed - what I've seen of carehomes varies a lot. My grandmother was in one with an en suite bathroom, mini library next door, doctors surgery next door and the wake after the eventual funeral was held in a function room there and the top two staff attended it.

Come the time my father was deemed to be bed-blocking just before Lockdown and everyone ganged-up that he had to go into a home I'd evaluated them from afar (as I'm 5 hours away from there now) and chosen three to go back and have a look at. The difference was "night and day" between them and I'd decided against a basic one literally as I walked up the drive. I chose the luxury one with an ex-military person running it (my father is ex-military himself) and I'd spotted a carer with her arms round one of the residents giving them a hug and the manager knew all the peoples names as she showed me round and knew what was likely to be the thing they wanted to say to her if they came up to her as we walked around.

There is guilt/always guilt whatever one does and, in my case, I'd "known" for months (maybe a year or two?) before Lockdown started in 2020 that the Government would impose a Lockdown. I didnt know when. I didnt know what their stated reason would be. I just knew to start making what plans I could that year or two before they started it up - so the guilt feeling was that it started literally about 2 weeks before he went into that home - but I know it would have been one heck of a worry whichever home I'd chosen as to whether they might start using those drugs (was it Midozalam I seem to recall?)

But I made the best choice I could and not knowing when the Lockdown was going to start. I quite deliberately ignored the costs - though I can see now I had chosen the most expensive one there is there - as my erstwhile brother and his wife (who were managing things) refused to tell me what money there was or wasnt and I just had to go on the basis "He's 93...my parents own a reasonable house and the law won't let them throw my mother out whilst she needs it still to live in - and they can wait till whenever that house is no longer needed for any money my parents havent got in savings if it comes to it" in order to cover costs if need be.

But definitely go and inspect the nearby homes now - so you're all prepared - ready to check out how the residents look, if there's any safety hazards, etc. Then - as long as your mother owns a reasonable house - regard the money as being there in one shape or form or another to cover the costs and choose the very best one there is near you. I'd rejected one just from what friends of mine in the area told me about it. I rejected two others primarily because I was wondering where the heck the residents all were as I walked around and the doors to their rooms were open and I still couldnt see them.

I think another clincher on the one I chose was the manager pointing to a room as we went past it and saying "That's the sensory stimulation room" and I was thinking "What the heck is that when it's at home? But I presume it's because some of the people in here have dementia - and I know my father has that. So I guess it's a good idea". Another aspect of the one I chose was it was clear they expected that relatives would be able to join the residents for a meal there if they wanted to - which I thought was a good point (though I already knew my mother/his wife was refusing to go and visit him anyway!!).

There might well be guilt - whatever you do - but there's nothing you can do about that.....because most people feel that (with the best will in the world). But you have to do the best you can - for everyone's welfare (including your own).

ViceVersa ...My Mum is at the stage where she realises her 'brain doesn't work,' as she puts it.
Which means she partially understands she can't cope, but is also aware of the abandonment she feels.
Thanks for your supportive words, much appreciated.