Home versus home

[Northern75]

Hi all,

I haven't been on here for a while, as the past few months have been consumed with caring for my dad (he was diagnosed with Lewy Body Dementia in January and has deteriorated during the past three months at a rate none of us imagined was even possible). My mother, sister and I have worked a rota so that there was always someone there, as dad requires 24 hour care. In the past couple of weeks he's now been classed by the social worker and nurse as high dependency, as he is barely mobile (it now takes two people to move him, get him up from chair, take him to the toilet, etc) and he is at risk of choking when he eats or drinks anything (even water).

This week, dad went into a residential home for respite care, to give us a 10 day break to recharge our batteries (I have been looking after dad during the day times and then working in the evenings, my sister does the opposite, and my mother has been caring for him overnight which involves little sleep as he is very restless and does not sleep for more than a maximum of two hours at a time). Yesterday (dad's third day there) one of the nurses chatted with my mother and me and told us that we would no longer be able to maintain caring for him at home with the needs he now has. She told us that his condition is likely to continue to deteriorate rapidly, and that we don't have the skills or the means to care for him and keep him safe at home. There were a lot of tears. When I got home after work, I looked into additional support, such as using a night sitting service to help us care for dad in his own home. When I mentioned it to my mother, she was quick to dismiss it, and this left me confused and hurt. When I left the care home yesterday, dad told me that he had been 'stitched up' by his family. He refused to go to the day room, as he said it was embarrassing for other people to see him cry. It was completely heart breaking. I cried in the car on the way to work, having told dad before I left that I love him, and having had him reply with, 'I used to think you did'.

To sum up, I am worried that my mother has just simply had enough and doesn't want to have dad back home. I realise that his needs are great at this stage, but I also feel that home is the best place for him. I'm worried that his condition will deteriorate far more rapidly when he's in an environment that makes him feel agitated and unhappy, and alone with thoughts that his family has abandoned him. Yes, caring for him is physically and mentally exhausting, but none of this is his fault - he has fallen victim to the most awful, cruel, debilitating disease. My relationship with my mother has been fragile for months now, as has my sister's. I don't want there to be any more bad feeling, but we are never going to agree on this. Has anyone else experienced anything similar? How do people cope with the decision of moving a relative away from home? The guilt is overwhelming. I just want dad back home. Is this being selfish, or is this right? Is there ever a right answer?

 

[Grannie G]

Please listen to your mother. No one makes decisions for residential care without heartache and if your mother thinks it`s time, the time is right.

 

[Northern75]

Thanks for your reply. I appreciate what you say, although it is very difficult and upsetting to come to terms with.

 

[Beate]

There is nothing "simple" about having had enough, it's called carer's breakdown. You admit yourself how physically and mentally exhausting it is caring for him. Your Mum, who is older than you, barely gets any sleep at night! A nurse has told you he needs professional care! How many warning signs are you going to ignore? There are not many dementia patients loving the idea of a care home but you have to look at what's in his best interest and also your family's best interest. You can't go on like this. "Just wanting dad home" is a gut reaction but not necessarily sustainable. It's also not just for you to decide.

 

[Northern75]

Hi, and thanks for posting. I appreciate it's not for me to decide, and I haven't talked about this to anyone elsewhere - that's why I'm doing it here. I thought the forum was a safe place in which we are able to discuss our feelings without judgement. I'm not ignoring the signs, just finding them difficult to accept. Ironically, the few days we've not been caring for dad and are having all these future decisions to consider and think about have been much harder than the months spent caring for him.

There is nothing "simple" about having had enough, it's called carer's breakdown. You admit yourself how physically and mentally exhausting it is caring for him. Your Mum, who is older than you, barely gets any sleep at night! A nurse has told you he needs professional care! How many warning signs are you going to ignore? There are not many dementia patients loving the idea of a care home but you have to look at what's in his best interest and also your family's best interest. You can't go on like this. "Just wanting dad home" is a gut reaction but not necessarily sustainable. It's also not just for you to decide.

 

[marmarlade]

i know what you are going through, i had to make the desision to put my hubby of 52 years into care,yes it broke my heart,and the first months were not easy.But i can say that he is a better person now,as he would sit all day at home and not say a word,or some times not even get off the chair.now hes always walking about talking to the other residents or staff .he evens helps the handy man, and we take him out weekends,yes he doesnt make much sense when talking to us but we answer to what ever he comes up with.so its not always bad to go into care and i know how your mum must feel i looked after my hubby for 5 years but it got to much in the end god bless you with what ever you come up with

 

[Northern75]

Hi Marmarlade, and thanks for your reply to the post. It must have been awful for you having to make that decision - this is the worst thing that has ever happened to my family. It's good to hear that your husband is settled where he is and that he seems happy. I worry for dad because he's always been pretty anti-social and has always relied on us for company (I live just down the road, so see my parents every day). I worry he will feel abandoned and that he'll isolate himself from the other people there. We all realised that nursing care would be an inevitable necessity at some point in the future - it's just happened so much quicker than any of us anticipated. I'm worried that I won't remember dad as he used to be, but only as he is now. Sending my thoughts to you and your family - dementia is the cruellest thing.

i know what you are going through, i had to make the desision to put my hubby of 52 years into care,yes it broke my heart,and the first months were not easy.But i can say that he is a better person now,as he would sit all day at home and not say a word,or some times not even get off the chair.now hes always walking about talking to the other residents or staff .he evens helps the handy man, and we take him out weekends,yes he doesnt make much sense when talking to us but we answer to what ever he comes up with.so its not always bad to go into care and i know how your mum must feel i looked after my hubby for 5 years but it got to much in the end god bless you with what ever you come up with

 

[Grannie G]

My husband was antisocial too Northern, and was a very private person, I suspect very much like your dad.

I really wanted to keep him at home but eventually realised I could not meet his needs and the care was taking its toll on my own health.

I was frightened if anything happened to me what would happen to him and realised I could help him settle in a care home and spend good time with him rather than stressful time because I had someone to share the caring.

I understand you are sharing the caring with your mother and your sister and believe you are meeting your dad`s needs. I suspect you really don`t realise how much your mother is being affected by the primary responsibility and care. I know I hid a lot from our son even though he lived a five minute walk away.

You are not being judged, even though it may feel like it because you yourself are also vulnerable. It`s good to talk things over with strangers because even though they are fellow carers and understand the situation, they can be more objective.

Talking Point is for peer support for carers and people with dementia. I doubt there is a carer here who has not been heartbroken when making the decision for residential care. I can also bear witness to the fact the health and demeanour of so many people with dementia has actually improved once they have settled into care homes, as has the health of the primary carers.

Nobody says its easy. It`s a living nightmare.

 

[Witzend]

It's almost always a heartache-ridden decision, even when all the relatives agree. But there may often come a time when 24/7 care at home is just too stressful and exhausting for the carer(s).

Many people do very well in care homes - I do hope you will find that this is the case with your dad. He is bound to be unsettled at first, and blaming the family for putting them there is pretty common in the early days or weeks - the person is so often quite unable to comprehend how hard it has been for the carer(s).
But many people do settle fairly quickly - fingers crossed.

 

[Northern75]

I just wrote a long reply to your post and my internet connection decided to fail and lose it all. In a nutshell, I spent this afternoon with dad - I couldn't get him on to the toilet when he needed to, and it has highlighted why he needs to be there and exactly how we are failing him. I realise that mum cannot cope with my dad alone during the nights, and I know that as his condition deteriorates it will jeopardise her health too, and that's the last thing I want. I suspect that, like you with your son, she doesn't tell us everything. We knew things would eventually come to this, but I think that the speed at which it's happened (dad was fine in October, other than slight tremor in his feet, and even in January he was far more physically and mentally able) has made things all the more worse. None of us were prepared for this (I doubt anyone ever is). It feels as though the flooring has just been ripped from under our lives. We promised dad he would never be put into a home, and now this. We couldn't have predicted what would happen to him, or how debilitating it would be, but it still feels like a complete betrayal.

My husband was antisocial too Northern, and was a very private person, I suspect very much like your dad.

I really wanted to keep him at home but eventually realised I could not meet his needs and the care was taking its toll on my own health.

I was frightened if anything happened to me what would happen to him and realised I could help him settle in a care home and spend good time with him rather than stressful time because I had someone to share the caring.

I understand you are sharing the caring with your mother and your sister and believe you are meeting your dad`s needs. I suspect you really don`t realise how much your mother is being affected by the primary responsibility and care. I know I hid a lot from our son even though he lived a five minute walk away.

You are not being judged, even though it may feel like it because you yourself are also vulnerable. It`s good to talk things over with strangers because even though they are fellow carers and understand the situation, they can be more objective.

Talking Point is for peer support for carers and people with dementia. I doubt there is a carer here who has not been heartbroken when making the decision for residential care. I can also bear witness to the fact the health and demeanour of so many people with dementia has actually improved once they have settled into care homes, as has the health of the primary carers.

Nobody says its easy. It`s a living nightmare.

 

[Northern75]

Thanks for your comments, Witzend (and I can empathise with the name). I spent the afternoon with dad today and was unable to get him on to the toilet when he needed to go (the carers were all busy helping those unable to feed themselves, and I couldn't physically lift him - I already put my back out earlier in the week before he went into respite). I know that things are becoming impossible, but having to accept it is heart breaking. Dad was nasty again today when I left - he said to me between gritted teeth that we had all conned him - and I know this isn't him speaking, but it still hurts like hell. I hope you're right and that he will become more settled over time.

It's almost always a heartache-ridden decision, even when all the relatives agree. But there may often come a time when 24/7 care at home is just too stressful and exhausting for the carer(s).

Many people do very well in care homes - I do hope you will find that this is the case with your dad. He is bound to be unsettled at first, and blaming the family for putting them there is pretty common in the early days or weeks - the person is so often quite unable to comprehend how hard it has been for the carer(s).
But many people do settle fairly quickly - fingers crossed.

 

[Cat27]

It's not a betrayal. It's doing the very best for your dad & that's what you are doing.

 

[Gwendy1]

It's so very hard on all of you, but I think you have to listen to the advice from professionals at this time. My dad was assessed for nursing care following a horrific festive period where he was trying to climb out of windows at home ( he had 24 hr carers at the time- not their fault, just the illness progressing). Dad actually suggested going into care home, which made life soo much easier for everyone.. However, I was told by social worker that if dad hadn't agreed, bottom line, he would've had to go in anyway for his safety.
You'll still be there for him, and your mums health is precious too. But, it's difficult for your family, and your dad, obviously. I wish you strength for the days ahead. X


Sent from my iPhone using Talking Point

 

[angecmc]

I feel for you and your family, it is not easy, what I would say though is that with Lewy bodies dementia it is as you know very unpredictable and unfortunately with hallucinations they can become violent, this happened with my Mum, your Mum has probably decided at the right time for permanent care, it is very possible that if she left it there may come a time when the decision would be taken out of her hands and would possibly involve him being sectioned and that really would be a worse situation to be in. Try to look at it this way, you are doing the best thing to keep your Dad safe and instead of being the ones doing all the personal care, you will be able hopefully to have quality time with your Dad, it doesn't mean you have given up on him, he will need you to be his voice and you will make sure he is well looked after and you will not hopefully lose your Mum to carer breakdown, it has taken my Dad nearly 3 years to recover from caring for my Mum. Take care xx

Ange

 

[Linbrusco]

Such a hard stage... I am in complete knots about it, to the point I came down with shingles with all the stress this past week.
I am the main carer for Mum 75 with Alzheimers.. also Dad 78 with cognitive impairment.
In recent months Mum has deteriorated, also developed incontinence, has had 2 UTI's, trips to after hrs emergency doctor and hospital etc
I have been caring for Mum, for last 5 yrs, and the last 3 yrs with Alz. I am also caring for Dad, caring for Mum if you know what I mean, as he has a hard time understanding.
Mum and Dad live in their own house behind ours.

Dad doesn't tell me half of whats going on, and tells my sister even less.
Mum keeps him awake at night, and is usually up from 4am off and on backwards and forwards to bed. Mum is also getting to the agitated/nasty stage with him and myself usually because she cannot understand something. Starting to see things and hear things but they don't cause distress... yet. Mum wants to be out every day, as there is little to occupy her time at home. I have organised 3x weekly outings through Alzheimers Society. Come the weekend she wants me to take her out, several times a day, because she forgets that shes been out, but I also have my own family to consider. One weekend I had to take Mum to the supermarket 3 times. She gets quite agitated when nothing to occupy her, and I feel shes not far off the wandering stage.
Dad has had one night apart from Mum in 3 years, and my last break was 7 mnths ago.

I mentioned the word Respite to my sister and it resulted in unpleasant phone conversation.
Despite this we have had Needs Assesors in, and Memory Team coming in to determine what level of Respite care Mum would need... if we did use Respite.
My sister seems to think it is all me wanting Respite, but Dad has developed high BP since, and when I see the look on Dads face at times, and hes falling asleep in his arm chair at 9am as hes dead tired, and I'm getting a knock on the door at 7am to come over and sort Mum out as she won't listen go him) then its time to start thinking Respite with view to long term care.
Ideally I would love to keep Mum at home for as long as possible, but her safety is questionable, and Dad is less than capable of caring for Mum other than just the practical level.

 

[99purdy]

Hi Northern,

Just wanted to give you a bit of support. My poor dad also suffers from Lewy bodies. He has been in care now for two years. What a rocky road. This awful awful illness has totally taken his dignity. At first he was so hurtful to us saying we had stitched him up and he wanted nothing to do with us. It was was an awful situation. His behaviour is challenging to say the least. Anything that would be your worst nightmare he has done. He is now in a challenging behaviour unit we still have struggles, ups and downs. However I would add I visit at least three times a week and he is well cared for by a team who understand his illness. I know exactly how you feel and the hurt and guilt but you also need to look after your immediate family and mum. It is heart wrenching I know but this illness holds no prisoners, your poor mum, your sister and yourself will be worn out. My Dad is well cared for and he knows we love him. He recently told me he only now realises how much I do for him! This means so much as he cannot normally string a sentence together. Good luck and very best wishes. I know exactly how you feel. X

 

[1mindy]

"To sum up, I am worried that my mother has just simply had enough and doesn't want to have dad back home. I realise that his needs are great at this stage, but I also feel that home is the best place for him."......

I read this and thought.... Your mum may well have had enough and not want your dad back home I fought to keep my husband at home, kept him from being sectioned twice, social workers and mental health workers were telling me it was too much for me to deal with....he went for respite 3+ weeks ago, and can't come home as he was becoming violent , I still say respite but he is not coming home. I did what I could , I am now well rested, all say I look so much better, I miss him for the man he once was and the life we once had and the future we planned, but I don't want him home . He doesn't want to come home he says, he doesn't want to be with me , he says he is happy, I have no idea if this is true but it is for the best . What you " feel " I'm afraid to say does not count, it is what your mum wants , and maybe she just wants the rest of her life and deserves your support in what ever decision is made.
Both my children who are 24 and 26 support me in what ever decision I make as they say they have lost their dad and don't want to loose me too. How grateful I am for their support can never be measured but I am glad they love us both enough to give us the best they can , their support.

 

[Northern75]

Thank you - I think quite a bit of that is going to be needed. We find ourselves in a similar situation now - the social worker who visits us is continually surprised by the speed of dad's decline, and his condition is deteriorating faster than we are able to keep up. How did your dad settle in the nursing home after being there a little while?

It's so very hard on all of you, but I think you have to listen to the advice from professionals at this time. My dad was assessed for nursing care following a horrific festive period where he was trying to climb out of windows at home ( he had 24 hr carers at the time- not their fault, just the illness progressing). Dad actually suggested going into care home, which made life soo much easier for everyone.. However, I was told by social worker that if dad hadn't agreed, bottom line, he would've had to go in anyway for his safety.
You'll still be there for him, and your mums health is precious too. But, it's difficult for your family, and your dad, obviously. I wish you strength for the days ahead. X


Sent from my iPhone using Talking Point

 

[Northern75]

Thanks Ange, and you're right - dad being sectioned would be horrific. The hallucinations are awful - dad is convinced that there are things in his bed (usually fish guts, although dead rats have made frequent appearances). He has no concept of time anymore, and tells us he's been locked in his bedroom for 24 hours. It is awful to watch someone who has always been so intelligent and smart and funny reduced to this shadow of himself. It is so sad to hear that it has taken your dad so long to recover. Having spent so much time in hospitals recently, and having done so much for dad's personal care, I have the utmost respect for nurses and for carers - it is difficult and often thankless and it can be incredibly lonely, even when there is other family involved. Hope you're all bearing up - this is just a nightmare x

I feel for you and your family, it is not easy, what I would say though is that with Lewy bodies dementia it is as you know very unpredictable and unfortunately with hallucinations they can become violent, this happened with my Mum, your Mum has probably decided at the right time for permanent care, it is very possible that if she left it there may come a time when the decision would be taken out of her hands and would possibly involve him being sectioned and that really would be a worse situation to be in. Try to look at it this way, you are doing the best thing to keep your Dad safe and instead of being the ones doing all the personal care, you will be able hopefully to have quality time with your Dad, it doesn't mean you have given up on him, he will need you to be his voice and you will make sure he is well looked after and you will not hopefully lose your Mum to carer breakdown, it has taken my Dad nearly 3 years to recover from caring for my Mum. Take care xx

Ange

 

[Northern75]

It sounds as though you're having such a tough time, and that you definitely need some respite. You've already been doing so much, and by the sounds of it with no time off. It seems that stress can affect people in all manner of ways, and coming down with shingles has got to be a sign that you're overdoing it? Respite doesn't mean that your mum won't come back home - it just means that you and your dad can have the break you need in order to get yourselves back on track and get a clear head before considering the future. Dad has Lewy Body Dementia, but the repetition and the agitation that you mention your mother suffers with sound very familiar. Dad gets bored, but refuses to participate in anything. He has obsessions with the temperature (I think people think I'm exaggerating when I say that I can spend eight hours opening and closing windows, taking his jumper on and off, changing t-shirts, putting the fire on and off, opening and closing doors - it is relentless. And I mean within seconds - dad will complain of being boiling, but within ten seconds of opening the window he says he's freezing. Then he's hot again, and so it continues...)

You mention your sister, and there seems to be some tension there. I don't mean this in a rude way, but even if it is you needing the respite and asking for it, so what? When you're caring for someone day in and day out it is a full time job, on top of work and looking after your family. I understood that mum, as well as my sister and I, needed a break - I just wish I'd been a bit more prepared for the thought that he might not be coming home again. Having said that, how does anyone prepare for any of this? My sister hit the nail on the head tonight when she said, 'one minute I think there's no way he can't come back home, then in the next I realise it's an impossible situation. Then I'm back again. I don't know what to think'. That's what I meant in my original post by not knowing whether there'll ever be a right answer. I hope the decision becomes easier for you and your family.

Such a hard stage... I am in complete knots about it, to the point I came down with shingles with all the stress this past week.
I am the main carer for Mum 75 with Alzheimers.. also Dad 78 with cognitive impairment.
In recent months Mum has deteriorated, also developed incontinence, has had 2 UTI's, trips to after hrs emergency doctor and hospital etc
I have been caring for Mum, for last 5 yrs, and the last 3 yrs with Alz. I am also caring for Dad, caring for Mum if you know what I mean, as he has a hard time understanding.
Mum and Dad live in their own house behind ours.

Dad doesn't tell me half of whats going on, and tells my sister even less.
Mum keeps him awake at night, and is usually up from 4am off and on backwards and forwards to bed. Mum is also getting to the agitated/nasty stage with him and myself usually because she cannot understand something. Starting to see things and hear things but they don't cause distress... yet. Mum wants to be out every day, as there is little to occupy her time at home. I have organised 3x weekly outings through Alzheimers Society. Come the weekend she wants me to take her out, several times a day, because she forgets that shes been out, but I also have my own family to consider. One weekend I had to take Mum to the supermarket 3 times. She gets quite agitated when nothing to occupy her, and I feel shes not far off the wandering stage.
Dad has had one night apart from Mum in 3 years, and my last break was 7 mnths ago.

I mentioned the word Respite to my sister and it resulted in unpleasant phone conversation.
Despite this we have had Needs Assesors in, and Memory Team coming in to determine what level of Respite care Mum would need... if we did use Respite.
My sister seems to think it is all me wanting Respite, but Dad has developed high BP since, and when I see the look on Dads face at times, and hes falling asleep in his arm chair at 9am as hes dead tired, and I'm getting a knock on the door at 7am to come over and sort Mum out as she won't listen go him) then its time to start thinking Respite with view to long term care.
Ideally I would love to keep Mum at home for as long as possible, but her safety is questionable, and Dad is less than capable of caring for Mum other than just the practical level.