Care home sadness and guilt

[Jessie5]

@petervm, my heart goes out to you because I totally relate to how you feel. The situation is utterly heart breaking. I completely relate to the feeling of wanting to snatch Mum up and take her home. I wrack my brains to try and think of other solutions, but I do know in my heart of hearts we are at a stage of no longer being able cope at home and it sounds to me like you are there too? But it is so, so hard to accept.
Hopefully if you find a home better suited to her needs things will get better for you and her?
Wishing you lots of strength to make the right decision for you all.
The forum has been a huge source of support the past few days, so keep sharing, you are not on your own.

 

[northumbrian_k]

Hi @petervm and welcome to Dementia Talking Point.
Now you have found this supportive community do have a good look around as there is a wealth of knowledge and experience on this site. You may wish to consider starting your own thread (it is as simple as posting to existing threads) as that way replies received will be specific to your circumstances.

From your post I can see that you are trying to rationalise and justify what seems to be the best, if not the only solution. You mention returning your mum to safe and familiar territory but I fear that this is no longer an option. What was once familiar is likely to become less and less meaningful to her. The effort of keeping your mum safe and properly cared for will swamp you.

It is good that you have discovered early on that her current home is unsuited to her needs. Finding one that can provide a safe environment and the level of care that she needs and deserves is imperative. There really is no reason to suppose that the move will affect her in the way you suggest. Rather than a hammer blow, moving her to a home that can meet her needs will ultimately turn out to be the best thing to do. It can be hard to accept - and unwarranted guilt can get in the way - but there comes a time when doing what is right takes precedence over what one would wish for. That is not failure but a realistic decision that shows courage and love.

Let your head rule and somewhere down the line you may find that - freed from the stress of being a carer - your heart catches up. What seems like the hardest choice can turn out to be far better than one fears. That has been my experience in the 2 years since my wife moved into permanent care.

Wishing you all the best

 

[northumbrian_k]

Hi @Jessie5 Just to say that, whilst I have replied directly to @petervm, I hope that some of what I have said will be helpful to you too. You have received good suggestions from others. Feel free to continue lurking if that suits you but remember that empathy and good advice are only ever a post away.

 

[Jaded'n'faded]

@petervm I fully understand why your emotional reaction is to gather your mum in your arms and bring her home to be with her family in familiar surroundings.

However... it sounds like her dementia has advanced considerably since she was last there. What if you made all the arrangements then she didn't recognise her home? What if the next week she doesn't recognise her family either and rejects your help?

Please go for the new care home. If it's not perfect, you can always look for a different one. Consider that today is the best your mum is going to be. Tomorrow she will be worse, and the day after. (I hate saying that but unfortunately it's true.)

 

[petervm]

Thank you so much @Banjomansmate @Jessie5 @northumbrian_k @Jaded'n'faded

I have found your words comforting and certainly will help with me coming to terms with a horrible situation. Like @Jessie5 my brain is on the constant lookout for a perfect solution and it's very irritating when it starts up at 3 o'clock every morning mulling the next fruitless plan.

I now need to put all energy into finding mum the best home I can. When I spoke to her on video call just now (half-two in the afternoon) she was still in bed and thought it was morning. She became very agitated very quickly and wanted to get up. She needs to be somewhere else where she can be mentally stimulated and staff are dementia trained and do not feel intimidated by her state-of-mind.

Yes, I am new to the forum @northumbrian_k but already getting good advice. Thanks to all

 

[Hazara8]

That instinctive reaction, to take hold of a loved one and whisk them away from a hitherto strange place and restore them to the familiarity of a life which stems perhaps from that place we term " home ", is both normal and seemingly wholly right despite everything. A mother comforts a child with affection borne out of a love which is deep and without any need for explanation whatsoever. It comes from the heart and it is the essence of Care. All of this promotes that powerful urge to maintain that relationship with a mother, who is vulnerable and unlike the child, no longer able to relate cognitively, unable to function as once before with that capacity that enables the relationship of loving Care to continue as before , at home. Dementia makes the rules and we ignore that at both our peril and that of our loved one. What you do NOT want in any way whatsoever is to reach that irreversible point of no return which l term "emergency respite". The critical stage by which the situation has deteriorated to such an extent that a "blue light" scenario plays out owing to the fact that the loved one has become out of control, profoundly upset, frightened and potentially open to self harm. This was my own experience and one which even in these challenging times, outweighs anything l have encountered in my life that we might term ' life changing '. Each case will be different because we are all different. But one needs to focus on two fundamentals: Best Interests for your mother. Best Interests for yourself. In many ways the two are really the same. Finding a GOOD Care Home must be a priority. Dementia trained Care Staff of course, but above all an atmosphere which is authentic in that role, with Staff who truly wish to be there and who can relate to dementia in its varied forms but who fundamentally relate to the dementia resident as a PERSON. Perhaps l was lucky in finding precisely that in the Care Home into which my mother entered when the emergency arose.
For over five years as a volunteer in the Care Home l witnessed the value of an environment which catered specifically to dementia. That Care operates for 24 hrs a day at best. The regime is designed to acknowledge dementia in an individual and treat it accordingly with patience, understanding and a continuity which is nigh on impossible at home, because you have to sleep!
But what was evident to me in daily observation, was how dementia has its own " language" whereby residents appear to communicate even when it seems to be uncoordinated chat or simply unintelligible.
To peer through a doorway and see a once frantic, distressed and desperately unhappy mother sitting calmy chatting to her neighbour in the lounge and no longer on the cusp of trauma and desperation leading to nowhere but the inevitable, is a wonderful thing . At worst the Care Home gives a degree of solace. At best , it provides a quality of life even subject to dementia, which is virtually impossible to replicate at home.
None of this is ever easy. Dementia remains an enormous challenge and for those who Care, it can change lives and also destroy lives. Let the Care Home become " home" and treat it accordingly. A mother is special and l was blessed with having a very good one. To honour the love she gave unreservedly to myself l could do no less than ensure she received the very best of Care available once my own abilities were exhausted and before l succumbed to the sheer level of unceasing Care which is not truly understood outside these forums nor the psychological impact of the ' secondary bereavement ' which accompanies the transition into Care.

 

[Countryside1]

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.

You are not alone.........your story is very similar to ours. Caring for my 78 year old mum alone in her own home (obviously the insidious progression of the dementia over the last 4.5 years, me alone then my sister adding support then council funded Carers 3x per day) culminated in finding her at the bottom of the stairs with a fractured shoulder and pelvis in April. The ‘crisis’ point (for her) had arrived, although mine had been a constant crisis dealing with it all (I am the baby of 5 and mum was/is my best friend). Dad had died suddenly, after 18 months of my care following a hip replacement, just before mums diagnosis and dementia journey began.
Anyway.........looooooooong stressful lockdown pandemic toilet roll nightmares medication mishaps confusion tears A&E visits after falls/head knocks arguments denials clear ups apologies tears wanting to die(her) trying to rehouse to ground floor council swaps(non existent choices) giving up work (me) tears isolations a wonderfully successful Christmas and Mother’s Day at my house(so glad I took my teenager out of college 2 weeks before end of Xmas and Easter terms for infection precautions for that) .........she ends up in hospital in agony (took an hour to get her from floor to ambulance with screaming gas and air confusion, you can imagine, anyone on here knows the turmoil dementia causes at every turn) with only 1 named visitor(my older sister has LPA) for 6 weeks in single room there, a lot of it on morphine. Just Skype video calls from me which were awfully upsetting and confusing for her. Her walking again ‘rehabilitation’ was not possible and never successful with the dementia in rapid progression with the stress of it all so after assessment she was discharged into the dreaded care home (a private ‘posh’ one but too large, informal and varied residents to properly care for mums dementia), 2 weeks full isolation in her room there before I could see her face to face first time in 2 months.
Further assessment concludes she’ll never go home to the family home of 45 years but a smaller dementia only care home is sought after now (fingers crossed but worried as ever) as she is mostly distressed there and cries wants to die upsets other non dementia patients at all hours with her shouting and overflowing Incontinence pads/leaks (from a woman who house cleaned every day and bleached the kitchen sink and showered/bathed twice a day, before March 2020/pandemic was walking into town every day with her trolley, making her food, eating with a knife and fork) it’s a living hell really.
I try to see the positives but she always said ‘when I can’t get out and about myself I’d rather be dead’ and she meant it. Dementia’s slow stealing of my precious mother has been a torture for her and for me and my daughters(she was at both of their births with me).
Soooooo......you and your precious mum and us are also hoping for a more dementia led care home for our mums.
I know how you feel, it is so stressful and upsetting I feel over the months my brain changing to cope and strengthen with this massive trauma this disease forced on us.
We just want a contented place for our loved ones to exist in with some joy if lucky!!
Due to my mothers physical condition now with her inability to learn to walk and the care homes inability to have/had enough time/effort needed to make that happen it would need to be more ‘nursing’ equipped too. She also cannot feed herself now either since the injuries.
I am very sorry this is so long.....it’s a long lonely journey this one, as we all now unfortunately know. And our little bit on here is the tip of the iceberg of our daily reality. I hope you find a solution that works for you and your mum.
I miss my mum SO much. But I dread visiting her. I worry about her constantly.
This week we are starting to close/pack up her house as the council need it back. Yesterday she was crying and angry at me for not taking her home, she has no clue obviously of what we’re doing, yesterday was a very hard visit again.
I’m sorry I’m not very positive. Reading some similarities on here though makes me feel less alone with it all. X

 

[Jessie5]

You are not alone.........your story is very similar to ours. Caring for my 78 year old mum alone in her own home (obviously the insidious progression of the dementia over the last 4.5 years, me alone then my sister adding support then council funded Carers 3x per day) culminated in finding her at the bottom of the stairs with a fractured shoulder and pelvis in April. The ‘crisis’ point (for her) had arrived, although mine had been a constant crisis dealing with it all (I am the baby of 5 and mum was/is my best friend). Dad had died suddenly, after 18 months of my care following a hip replacement, just before mums diagnosis and dementia journey began.
Anyway.........looooooooong stressful lockdown pandemic toilet roll nightmares medication mishaps confusion tears A&E visits after falls/head knocks arguments denials clear ups apologies tears wanting to die(her) trying to rehouse to ground floor council swaps(non existent choices) giving up work (me) tears isolations a wonderfully successful Christmas and Mother’s Day at my house(so glad I took my teenager out of college 2 weeks before end of Xmas and Easter terms for infection precautions for that) .........she ends up in hospital in agony (took an hour to get her from floor to ambulance with screaming gas and air confusion, you can imagine, anyone on here knows the turmoil dementia causes at every turn) with only 1 named visitor(my older sister has LPA) for 6 weeks in single room there, a lot of it on morphine. Just Skype video calls from me which were awfully upsetting and confusing for her. Her walking again ‘rehabilitation’ was not possible and never successful with the dementia in rapid progression with the stress of it all so after assessment she was discharged into the dreaded care home (a private ‘posh’ one but too large, informal and varied residents to properly care for mums dementia), 2 weeks full isolation in her room there before I could see her face to face first time in 2 months.
Further assessment concludes she’ll never go home to the family home of 45 years but a smaller dementia only care home is sought after now (fingers crossed but worried as ever) as she is mostly distressed there and cries wants to die upsets other non dementia patients at all hours with her shouting and overflowing Incontinence pads/leaks (from a woman who house cleaned every day and bleached the kitchen sink and showered/bathed twice a day, before March 2020/pandemic was walking into town every day with her trolley, making her food, eating with a knife and fork) it’s a living hell really.
I try to see the positives but she always said ‘when I can’t get out and about myself I’d rather be dead’ and she meant it. Dementia’s slow stealing of my precious mother has been a torture for her and for me and my daughters(she was at both of their births with me).
Soooooo......you and your precious mum and us are also hoping for a more dementia led care home for our mums.
I know how you feel, it is so stressful and upsetting I feel over the months my brain changing to cope and strengthen with this massive trauma this disease forced on us.
We just want a contented place for our loved ones to exist in with some joy if lucky!!
Due to my mothers physical condition now with her inability to learn to walk and the care homes inability to have/had enough time/effort needed to make that happen it would need to be more ‘nursing’ equipped too. She also cannot feed herself now either since the injuries.
I am very sorry this is so long.....it’s a long lonely journey this one, as we all now unfortunately know. And our little bit on here is the tip of the iceberg of our daily reality. I hope you find a solution that works for you and your mum.
I miss my mum SO much. But I dread visiting her. I worry about her constantly.
This week we are starting to close/pack up her house as the council need it back. Yesterday she was crying and angry at me for not taking her home, she has no clue obviously of what we’re doing, yesterday was a very hard visit again.
I’m sorry I’m not very positive. Reading some similarities on here though makes me feel less alone with it all. X

Oh @Countryside1 I wish I could give you a big hug. Don’t apologise for long msg, I found it helped to let it out, I hope it did for you too. It is so hard watching a very much loved person disappear. My Mum also says she would rather be dead, so understand how you feel with that one. Mum was also once close to my kids. They still brighten her day, but my little one finds being with her hard as she doesn’t really recognise them as individuals anymore, which is hard for a 9 year old to understand. This horrible illness robs so many people of so much, it isn’t just the person with dementia, is it?

I hope you find the right home for her. You are a loving daughter, so I know you’ll strive to find the right place.

Also giving you strength with clearing out the house. My Mum had been in her home for 50 years. I know it will be heartbreaking.

 

[Sarasa]

Oh @Countryside1 , that has been so tough for you all. I hope you find a home that suits your mum and her needs. They are out there.
You've come to the right place to off-load, there is always someone here to listen and give you a virtual hug {{{{ @Countryside1 }}}}

 

[Countryside1]

Oh @Countryside1 I wish I could give you a big hug. Don’t apologise for long msg, I found it helped to let it out, I hope it did for you too. It is so hard watching a very much loved person disappear. My Mum also says she would rather be dead, so understand how you feel with that one. Mum was also once close to my kids. They still brighten her day, but my little one finds being with her hard as she doesn’t really recognise them as individuals anymore, which is hard for a 9 year old to understand. This horrible illness robs so many people of so much, it isn’t just the person with dementia, is it?

I hope you find the right home for her. You are a loving daughter, so I know you’ll strive to find the right place.

Also giving you strength with clearing out the house. My Mum had been in her home for 50 years. I know it will be heartbreaking.

It helps weirdly to know I am not alone in my active grief. I think being the baby of a family of 5 it helps to know others understand. X

 

[Countryside1]

Oh @Countryside1 , that has been so tough for you all. I hope you find a home that suits your mum and her needs. They are out there.
You've come to the right place to off-load, there is always someone here to listen and give you a virtual hug {{{{ @Countryside1 }}}}

Thankyou, it helps to share and read others stories. These poor precious people with dementia, it’s torturous to everyone who loves them.