Care home sadness and guilt

[Jessie5]

I haven't posted for a while but have been lurking for a while taking great comfort from this supportive group. I am saddened that so many families are coping with this horrible illness, but at least feel a bit less alone. I just need to get things off my chest today.

My Mum has been living alone with Alzheimer's for a number of years now, she was diagnosed 4 years ago, but had symptoms long before that. It became apparent last winter that she was coming to a point that she wasn't safe to be left any more. My sister and I tried to support her at home staying over, making more visits etc and we managed to limp through until this month where she seems to have taken a real dip quite suddenly. (Tests haven't revealed an infection, so just the illness I guess). She has started to wander off out of the house and was brought home by the police last week, which is so worrying as she is so confused and can't see due to sight problems. Her night time waking which used to maybe ever third night is now pretty much every night and makes looking after her absolutely exhausting. She also has a downstairs loo and is partially sighted so has a long walk to the bathroom from bed and has started to have a few falls. When she is deep on confusion she forgets how to walk. She has also started to call my sister at all hours as she doesn't know where she is.

Social services really don't care, they haven't offered a care assessment as she is self funding and just said we should try assistive technology to alert us if the door opens, which doesn't feel helpful as she could be out in a busy road in seconds before any help could get there.

So we came to the sad conclusion that it is time for full time care. We took her to a local care home for 3 weeks respite, but I can't see how she can possibly come home. Dropping her off was awful. She was very distressed. She has always been a private person and I can see that it is distressing for her. I think she fear she will never see us again.

The other truth is I just don't want to put my life on hold any more. Before Mum was ill we cared for my Dad, so my sister and I have been carers for over 10 years now and feel exhausted. And I feel really guilty about this. I am managing at the moment as I am furloughed and my husband works from home so can do more child care. But the reality is that my job won't be coming back after furlough ends so I really need to get job hunting, which I am finding hard to mange with my caring role.. My sister feels the same, she works for herself and her business has taken a real hit whilst looking after Mum. I know in her lucid moments that Mum doesn't want to be a "burden" on my sister and myself, she is proud of our lives and would want us to live them to the full. It just feels so hard to have to sacrifice her well-being for our own if that makes sense?

I just feel so sad and guilty. I know it is early days, I hope that she will enjoy the company. We are visiting on Saturday to give her a chance to settle, so I hope once she sees us she will realise that she hasn't been abandoned. I just suppose I hoped she would be in a permanently confused state when full time care was necessary, which is not the case as she actually she still has really lucid moments among the confusion and takes great joy in her children and grand children.

Anyway, thanks for listening, feels good to off load.

 

[Sarasa]

Hi @Jessie5, there is a stick around here somewhere to bash the guilt monster and I think it's you and your sister's turn to have it. Moving your mum to a care home is the best thing you could do. Even if you moved her in with you or you moved in with her it would shortly get to a time when her needs would require a whole team of people. You are not sacrificing her well-being but doing what is best for her, even if she thinks it isn't.
The truth is that for a lot of people with dementia they will not be happy anywhere. They know something is wrong and think if only this or that happens or I go 'home', it will all be better, but realising that the problem is their dementia not their environment. My mum, who is also partially sighted, was very unhappy in her flat because she thought the neighbours were stealing from her. Due to various things that happened I moved mum to a care home. She was equally unhappy there at first and kept on claiming she wanted to go back to her flat, where things had been fine. Gradually as her dementia progressed she's settled in and is now content in her own little world.
When you visit be as happy and upbeat about how lovely it all is, as your mum will pick up on your mood, and if you seem upset, she'll be too. If she asks about going home, fudge the issue, there is work to be done on her house, the doctor says she needs to convalesce, whatever you think she'll understand. Then when you leave, just slip away without any great goodbyes. It feels rude, but it'll stop your mum wanting to go with you and getting distressed.
I'm sure others will be along shortly with their tips and experiences. There is such a wealth of knowledge here.

 

[Jessie5]

Thank you Sarasa, that is really kind and helpful. It has been such a tough few weeks. I will definitely try and find that stick! And excellent advice about visiting I hadn't really thought about fudging the issue of her going home. I will definitely try that!

 

[jaymor]

@Jessie5, I would also add to the good advice above, if possible don’t have a coat on when you see your Mum. Look as if you have just come in from another room, it makes it so much easier to leave too.

 

[Sirena]

I agree with Sarasa, please don't feel guilty. I think we all resist the idea of a care home, but there comes a point when the person with dementia's needs take priority over their wants. You have done your absolute best for your mum and you are continuing to do so, because you are ensuring she is safe and well cared for.

I told my mother she was going on a mini break. The mini break never ended, and within a few weeks the care home was her new world and she never referred to her old life. She has been very happy there, and the staff are wonderful.

Jaymor has reminded me - I never said goodbye when I visited, I said I was going to the loo, so we avoided any difficult goodbyes.

 

[Frank24]

Having placed my mother recently after a long time of trying to hold together full time care in the home, a full time job and living a great distance away - I can really empathise with your situation - Life is sort of about survival at the moment and in our previous lives we were more able to drop everything to accommodate our elders family. I think getting lost and bought back by the police is fairly worrying. I wouldn't be happy for that to continue to be a possibility for long. Its too stressful trying to manage that dynamic.

 

[spandit]

The other truth is I just don't want to put my life on hold any more... It just feels so hard to have to sacrifice her well-being for our own if that makes sense?

You haven't sacrificed her well being. You've done what's best for her. Even if it's just respite for you - you can't care effectively if you're stressed to the max. I'm dreading my father coming home from respite, if I'm honest...

 

[Hazara8]

This is always a challenging moment. The transition into Care. The " guilt " is really a reaction to what seems plain wrong and unfeeling coupled to the ' alienation' of having all the familiarity of a home and all the associated activities of the Care one has given, suddenly ending and one feeling helpless and often profoundly upset about the whole thing.
The unfortunate facts tell us a different story . Dementia does not get better. Symptoms can change and within an environment which caters specifically for this particular disease, can often be curbed. The good CARE HOME provides safety and care as an ongoing process and that is important. Because other residents are also living with a dementia one often gets an environment which can function surprisingly well in a way which would be impossible at home. Residents communicate in a manner which might seem simply confused to the onlooker. But l have seen " chat" taking place between residents whereby 'gobbledegook ' actually brings about interaction because each person is living in their own dementia world which remains somehow able to function despite what to us is bemusement or senseless. The key words are " best interests " and in that respect the eventual move into the Care Home has to be seen as such.
There are good points being made here about how to behave when you visit. People with dementia can pick up on mood and emotion. If your mother has lucid moments then that is when deviation or ' white lies ' enable reducing stress or upset. The normality of posture and voice helps in this. In short allow the Care Home to be " home " as it stands.
When l visited my late mother ( three times a week) in her Care Home l used to talk with the Care Staff first, then enter the lounge or her bedroom as if l was always there. I would sit down beside her casually and after few moments quietly ask if she would like a cup of tea. Usually this resulted in a calm and unstressed visit. Not always of course.
The transition is inevitable and wholly appropriate because when dementia becomes traumatic at home, then both Carer and the loved one lose all.
Let the Care Home become " home " to you and allow that relationship to nurture your mother through the ongoing Care being given. As long as that Care is as good as it can be, then there is comfort in that. And if when you step into the lounge and see your mother looking happy and settled and interacting with other residents , then that can afford great comfort and peace of mind. None of this is ever easy. But it need not be filled with despair nor a sense of guilt because it is both inevitable and appropriate. It is dementia which sets the rules and to deny that is a mistake because the loved one it inhabits cannot prevent it nor cure it, nor understand it. We can do something and that is all that matters. Dementia alas doesn't care one jot. But we are human and as such we do care . We might call it Love.

 

[Jale]

If possible can you time your visit to just before a meal, when we visited mum before covid we usually went before lunchtime, and then we would leave as meal preparations were being started. We would often wheel mum down to the dining room and then as one of the carers actually took her into the dining room we would leave. Since covid when I have visited mum and prepare to leave she usually always asks why I have to go - so dentist appointment, plumber coming round, dog to vets have been used on a regular basis and she seems to accept that more than me just saying Goodbye.

Do not always believe what your loved one tells you either - according to mum she is never fed, never has a drink and doesn't see anybody all day. When mum went into the nursing home we told her she was going to a different hospital (she was moved from hospital to the home) and we called the carers nurses. You will probably find that you will become an expert at white lies or dodging awkward questions.

I still feel guilty that mum had to go into a nursing home, but I know now how close I was to breaking although I would never have admitted it.

Wishing you well for your visit, take care x

 

[Jessie5]

To all who took the time to reply, thank you so much for the wise words. They have given me a huge amount of comfort, it is nice to not feel alone in this situation, sad as I am that you have all been through this too.

 

[Jessie5]

@Jessie5, I would also add to the good advice above, if possible don’t have a coat on when you see your Mum. Look as if you have just come in from another room, it makes it so much easier to leave too.

That sounds like a great idea. I really hadn't thought about this! Thank you so much

 

[Jessie5]

Having placed my mother recently after a long time of trying to hold together full time care in the home, a full time job and living a great distance away - I can really empathise with your situation - Life is sort of about survival at the moment and in our previous lives we were more able to drop everything to accommodate our elders family. I think getting lost and bought back by the police is fairly worrying. I wouldn't be happy for that to continue to be a possibility for long. Its too stressful trying to manage that dynamic.

I am so sorry to hear that you are going through this too. I hope your Mum is settling and that you are managing to adjust.

 

[Jessie5]

You haven't sacrificed her well being. You've done what's best for her. Even if it's just respite for you - you can't care effectively if you're stressed to the max. I'm dreading my father coming home from respite, if I'm honest...

Thank you for this, I can totally sympathise with the dread of returning to full time caring. It is so hard. My sister and I only managed a few weeks of 24/7 care. It is absolutely exhausting and consuming and regular breaks are absolutely essential in order to survive.

 

[Jessie5]

This is always a challenging moment. The transition into Care. The " guilt " is really a reaction to what seems plain wrong and unfeeling coupled to the ' alienation' of having all the familiarity of a home and all the associated activities of the Care one has given, suddenly ending and one feeling helpless and often profoundly upset about the whole thing.
The unfortunate facts tell us a different story . Dementia does not get better. Symptoms can change and within an environment which caters specifically for this particular disease, can often be curbed. The good CARE HOME provides safety and care as an ongoing process and that is important. Because other residents are also living with a dementia one often gets an environment which can function surprisingly well in a way which would be impossible at home. Residents communicate in a manner which might seem simply confused to the onlooker. But l have seen " chat" taking place between residents whereby 'gobbledegook ' actually brings about interaction because each person is living in their own dementia world which remains somehow able to function despite what to us is bemusement or senseless. The key words are " best interests " and in that respect the eventual move into the Care Home has to be seen as such.
There are good points being made here about how to behave when you visit. People with dementia can pick up on mood and emotion. If your mother has lucid moments then that is when deviation or ' white lies ' enable reducing stress or upset. The normality of posture and voice helps in this. In short allow the Care Home to be " home " as it stands.
When l visited my late mother ( three times a week) in her Care Home l used to talk with the Care Staff first, then enter the lounge or her bedroom as if l was always there. I would sit down beside her casually and after few moments quietly ask if she would like a cup of tea. Usually this resulted in a calm and unstressed visit. Not always of course.
The transition is inevitable and wholly appropriate because when dementia becomes traumatic at home, then both Carer and the loved one lose all.
Let the Care Home become " home " to you and allow that relationship to nurture your mother through the ongoing Care being given. As long as that Care is as good as it can be, then there is comfort in that. And if when you step into the lounge and see your mother looking happy and settled and interacting with other residents , then that can afford great comfort and peace of mind. None of this is ever easy. But it need not be filled with despair nor a sense of guilt because it is both inevitable and appropriate. It is dementia which sets the rules and to deny that is a mistake because the loved one it inhabits cannot prevent it nor cure it, nor understand it. We can do something and that is all that matters. Dementia alas doesn't care one jot. But we are human and as such we do care . We might call it Love.

Thank you so much for taking the time to right this. Some really helpful and thoughtful points that I hadn't considered and have really helped me enormously.

 

[Jessie5]

If possible can you time your visit to just before a meal, when we visited mum before covid we usually went before lunchtime, and then we would leave as meal preparations were being started. We would often wheel mum down to the dining room and then as one of the carers actually took her into the dining room we would leave. Since covid when I have visited mum and prepare to leave she usually always asks why I have to go - so dentist appointment, plumber coming round, dog to vets have been used on a regular basis and she seems to accept that more than me just saying Goodbye.

Do not always believe what your loved one tells you either - according to mum she is never fed, never has a drink and doesn't see anybody all day. When mum went into the nursing home we told her she was going to a different hospital (she was moved from hospital to the home) and we called the carers nurses. You will probably find that you will become an expert at white lies or dodging awkward questions.

I still feel guilty that mum had to go into a nursing home, but I know now how close I was to breaking although I would never have admitted it.

Wishing you well for your visit, take care x

Thanks you so much for sharing your thoughts on visiting. Really helpful advice that I will follow.

Your note on not believing what your loved one says made me smile as we've literally just had this. Care home were saying just how well she was settling in, joining in chatting to people etc, then they passed the phone to her and she was full of how awful it is. and that she has no one to talk to. I am sure it does feel like a huge adjustment to her, but all the staff are so caring and friendly that I do feel she's in safe caring hands, even if she doesn't like it.

 

[Jale]

Thanks you so much for sharing your thoughts on visiting. Really helpful advice that I will follow.

Your note on not believing what your loved one says made me smile as we've literally just had this. Care home were saying just how well she was settling in, joining in chatting to people etc, then they passed the phone to her and she was full of how awful it is. and that she has no one to talk to. I am sure it does feel like a huge adjustment to her, but all the staff are so caring and friendly that I do feel she's in safe caring hands, even if she doesn't like it.

Mum would never join in the activities if we were there but when we watched from around a corner one day we saw her joining in and even smiling but as soon as we appeared she stopped, that was another reason for timing our visits right

 

[Snuffette]

The guilt monster is just awful isn't it! All the advice on here is spot on, I now leave mum just before tea and cake in the afternoon and tell her I'm off to work - even on a Saturday and Sunday. The carers walk her down to the lift to say goodbye to me and she then goes for her tea - seems to work ok, but things can change daily so steel yourself for the ups and downs. You have done the right thing though, both for you and your mum - as dementia progresses it is a 24/7 caring situation and us mere mortals are just not equipped mentally - as we are too close, or physically. This forum is fantastic for advice, I check on here daily for support, just knowing there are others out there in the same situation is a massive help.

 

[Izzy]

@Jessie5 you may find this booklet from Alzheimer’s Scotland useful. Section 2 makes references to emotions/guilt.

https://www.alzscot.org/sites/default/files/images/0000/0275/lettinggo.pdf

Wishing you strength.

 

[petervm]

I too, along with my sister, feel the massive weight of guilt and emotional turmoil about my mum being in a care home. Thank you to everyone who has responded to @Jessie5. You have helped me as well.

Until seven weeks ago I was caring for my elderly mum at home. She has significant long-term physical ailments and was diagnosed with mixed dementia earlier in the year. She lives with me and things were ticking over, but becoming more challenging with every day. She refused outside help and my role was becoming a 24 hour commitment.

She was admitted to hospital in May for a physical condition. She was kept for five weeks. She has always hated hospitals and has fortunately avoided them for most of her life. She thought she had been kidnapped and could not understand what she had done wrong to be put into such a place. The hospital did a great job with her physical issues but her state-of-mind deteriorated rapidly, not helped by her having no mental stimulation at all and the refusal of the hospital to allow any more than a one hour visit a day. A request to the ward sister that mum should see a dementia nurse was met with amazement and we were told that this would only be possible if mum was violent.

When mum was ready for discharge, still with significant long-term medical issues, I was asked what we, the family, wanted to do. By this time, mum was unable to understand what was going on. I asked for at-home 24/7 care, knowing that this was out of the question, and was told that this was out of the question! Why ask what patients and families want? Experts will not give advice through fear of litigation, it seems.

The actual result was that mum was discharged to a nursing home under the NHS covid-funding “bed to assess” arrangements. The home is fine and mum is well cared for, clean and well dressed, good food and, after a horrendous quarantine period, able to sit in the lounge with others. She has, though, been very agitated and during video calls asks repeatedly to come home. What she says is true. It is her home. She made the home what it is. All her things are there. Owing to positive covid tests, physical visits to the home have not been allowed. We tried the “essential carer” argument but were met with a negative response.

The last seven weeks have been the most horrendous experience.

Mum has now been assessed by social services and it is generally agreed that she needs a nursing home with dementia support. The home she was placed in have brilliant nurses but do not have the resources or trained dementia personnel to cope with her increasingly erratic behaviour. It is evident that they are not familiar with the best techniques to communicate with a dementia patient. Basic things like not contradicting them, not telling them they are being rude and not lying to them. The placement was done on the basis of her many physical ailments alone and clearly a dementia diagnosis on the discharge summary was considered an insignificant issue. She was taken in by the home, who happily accepted my mum, and the covid-funding, willingly. They fully admitted, from day one, that they would not be able to manage anyone who wandered or was challenging.

We are now faced with the prospect of mum being moved, again, to a home that can accommodate her. This will be another hammer blow to her and us.

The family dilemma is: do we bring her home, as she wishes and can reason why when she is lucid or do we follow professional advice and go along with the move? My heart wants to whisk her up in my arms and return her to safe and familiar territory, her long-term home. The thought of mum never stepping into her home again is unbearable and heart-breaking.

I think the advice given to @Jessie5 and the experience of others would suggest that I should follow my head, not my heart, as difficult as it is. A nursing home with dementia support is best. The emotional toll of making a decision where no one is a winner is awful, horrible, all consuming and just feels paralysing.

I know I am not alone and many of us suffer the guilt, anguish, sleepless nights, and sense of failure when our most loved ones need us the most.

 

[Banjomansmate]

You were told before she left hospital that your Mum needed 24 hour care but this wouldn’t be provided at home by the LA, so unless you can afford to pay for this care yourself I don’t think you have much choice. As her needs will gradually become greater do you really think you could cope at home without increasing full support? I think you know the answer in both your head and your heart. You have to be practical no matter how much you feel she should be at home.
I’m sorry if this sounds blunt but your Mum needs proper nursing and dementia care.