Friends and even family disappear

SoAlone

Registered User
May 19, 2016
142
Devon
I will apologise up front, I am having a 'poor me' moment. Does anyone else find that once stabilised and receiving appropriate care, in my OH case a Nursing Home environment that friends and even some family have endless reason's for not visiting. I say reason's and not excuses because that is unkind. We have one set of friends that have dropped us both completely because they think I have 'put him in a home', but in some ways I would rather that than 'I don't like to see him like that' or 'I don't like those places' or 'he doesn't know me' or visiting doesn't fit with my work'. For those of them who might be remotely interested, I don't like seeing him like that., I don't enjoy the NH environment, occasionally he doesn't know me and I work. I go because I love him because I need to know and see he is safe and because he is a big part of my life and actually we do laugh sometimes because, having no filter he is very cheeky and sometimes the alternative would be to cry and that really doesn't help.
Ran't over. Love TP as somewhere to get great advice and sometimes, like today, to say all the things I am to polite (well most of the time) to say to the people who need to hear it
Thank you for listening guys.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,391
Kent
It is a lonely life @SoAlone but because I haven`t been involved with friends or family in the same position I didn`t expect anything from them for myself.

I have had friends visit my husband in his care home but it`s very much like hospital visiting, conversation is difficult and people can feel at a loss.

Then I wasn`t really in the mood to socialise outside visiting hours because my interests in `normal` living was almost non existent.

It`s a bit of a catch 22 situation.

Can you involve yourself in any groups when you are not visiting? I did join U3A and went to yoga. They helped a bit but were temporary periods of respite.

Saying this, it`s OK to feel sorry for yourself. I`m sure we all do at some time or other.
 

marionq

Registered User
Apr 24, 2013
6,013
Scotland
@SoAlone I think your friends are very unkind. They will have seen or perhaps avoided seeing how hard it is to be a carer of someone with dementia and possibly other health issues. I am heartbroken too to see my husband in a nursing home after a hip break has greatly reduced him but the matter is really out of my hands and I'm sure yours too.

I have had nothing but sympathy and concern from friends and family. Yesterday our local surgery called me to say his hospital report required him to be given Vit D. The receptionist told me I had looked after him amazingly over the last seven years. I was so choked I couldn't even speak to her to thank her.

Standing well back and criticising seems so harsh that I wonder if your friends are afraid for themselves. With that attitude will anyone be around for them in their hour of need?
 

Bunpoots

Volunteer Host
Apr 1, 2016
3,811
Nottinghamshire
You could be describing my brother and sister @SoAlone. They made every one of those excuses when our mum and dad were I'll. Frankly I was shocked at their behaviour. I'd always thought ours was a strong, supportive family but when the chips were down that turned out not to be the case. Mum had held the family together and when she started to fail my siblings ran for the hills! I'll never forgive them so I know how you feel.

I think the same as @marionq - with that example set will their children be around when they need them?
 

Lady M

Registered User
Sep 15, 2018
292
Essex
I can empathise! Following another period in hospital my OH has a ‘temporary ‘ placement in a care home as respite! I had to fight all the way and without a supportive family the authorities would have worn me down BUT had I been widowed friends would, I believe, have rallied and been sympathetic. Now all I get is well, you can now go out And about....you’re not tided down anymore......get on with your life ...! My life was with him........I am heartbroken........not feeling guilty because he is there but despairing that I am not with him!
I am not lonely but alone! How does he feel!
Heart broken and Unhappy..that’s how he is......his face says what I am sure he is feeling.........
BUT I shall have a big smile when I visit...assure him all is well and we still can share ......
I have a wonderful and supportive family...who took the matter from me and insisted on respite with a view to permanent! Face a day at a time and remain strong, my sons tell me....when I am anything but that.......
Like I say if I had been widowed I am sure friends and neighbours would act differently!!!!!!
 

northumbrian_k

Registered User
Mar 2, 2017
927
Newcastle
The 'friends' who have been so judgmental and have dropped you were not friends at all really. When you most needed support they turned away. It is too often the case. If he had an acute physical illness would they have objected that you had 'put him in hospital'? Nobody wants to see another person go into care but sometimes (quite often) that is the only reasonable option.

If old friends and family have proved to be hollow it is best to expect nothing from them. But that doesn't mean that you can't find new friends who - without the baggage of the past - are far less likely to stand in completely misplaced judgment.
 

Marnie63

Registered User
Dec 26, 2015
1,628
Hampshire
The wonderful book I found when I was caring for mum (Loving Someone Who Has Dementia by Pauline Boss) talks about the 'psychological family'. It's so important to have some support through such a difficult experience and she says if family are unable to provide this empathy and support, for whatever reason, the 'family' can be friends, neighbours, groups and even on line forums! I'd love to quote from the book, but had better not. This lady has a brilliant insight into life as a carer of someone with dementia. The whole book is about 'finding hope while coping with stress and grief' (as a carer). I really recommend it, it helped me through some dark times.

My dear old mum was a wonderful person. We used to have frequent visiting relatives from abroad. Mum helped them so much financially over the years. I never really felt that close to them and always felt they were only interested in us for what they could get out of us. Since mum died, just over a year ago, I have heard nothing from her brother, and my cousin from that family has never even phoned or contacted me to say one word of sympathy after mum's death. They are a horrible bunch of human beings in my view. But I can't change that. They are not my fault. I've moved on. I have no contact with them now. I realise I can't make them be the people I want them to be and I focus on those who have been my 'family' through the difficult times.

Such a shame though, to take so much, and drop us after mum's death. There's family for you!
 
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Sirena

Registered User
Feb 27, 2018
2,064
My mother is in a care home, and most of her friends and relatives dropped her before she even got there. There was only one friend who kept in touch, her own husband had dementia so she understood the illness, and she was also a kind and lovely person.

We only have one other close-ish relative, my mother's cousin. She visited once in 18 months but her main interest seems to be the funeral - she's asked me three times to be sure to let her know when the funeral is. I think she's expecting money in the Will (she's going to be disappointed). Based on her behaviour, I'm glad we don't have any more relatives.
 

SoAlone

Registered User
May 19, 2016
142
Devon
Thank you so much everyone. As always TP reminds me I am not alone. From all the lovely honest replies, I have realised that I must not allow their excuses to allow me to excuse their behaviour. Accept them for what they are expect nothing and move on. To echo Lady M I to have been told to get out and about and build my life now I am not tied to being there 24/7 for OH. Honestly, I do somethings that were not possible before, but I don't want another life free from him, I love him still, even when he tells me my face has more cracks than the pavement (an honest take on wrinkles I think) and he is till a big part of my life and I don't want it any other way. I don't complain about fitting in 4 visits a week even though working 5 days but I am still told I should cut back and do other things. May be one day I will be ready, but not now. Thanks again . Love to everyone and strength to us all to continue the battle with this horrid disease
 

jenniferjean

Registered User
Apr 2, 2016
663
Basingstoke, Hampshire
Accept them for what they are expect nothing and move on.
That's what I'm trying to do. My husband is still at home with me, but earlier this year we moved to a small ground floor flat. Friends and family now tell me how much more settled we are now and how things 'must' be much easier for me. I feel like saying "you come and try it", but I just smile and agree. What's the point in doing anything else!
 

Dutchman

Registered User
May 26, 2017
501
Devon
I will apologise up front, I am having a 'poor me' moment. Does anyone else find that once stabilised and receiving appropriate care, in my OH case a Nursing Home environment that friends and even some family have endless reason's for not visiting. I say reason's and not excuses because that is unkind. We have one set of friends that have dropped us both completely because they think I have 'put him in a home', but in some ways I would rather that than 'I don't like to see him like that' or 'I don't like those places' or 'he doesn't know me' or visiting doesn't fit with my work'. For those of them who might be remotely interested, I don't like seeing him like that., I don't enjoy the NH environment, occasionally he doesn't know me and I work. I go because I love him because I need to know and see he is safe and because he is a big part of my life and actually we do laugh sometimes because, having no filter he is very cheeky and sometimes the alternative would be to cry and that really doesn't help.
Ran't over. Love TP as somewhere to get great advice and sometimes, like today, to say all the things I am to polite (well most of the time) to say to the people who need to hear it
Thank you for listening guys.
I felt my family had gone off the boil so to speak after the first few weeks of the care home. No follow up phone calls to me to see if I’m ok. Just presumed I was getting on with it. Well I’m not!!
 

SoAlone

Registered User
May 19, 2016
142
Devon
That's what I'm trying to do. My husband is still at home with me, but earlier this year we moved to a small ground floor flat. Friends and family now tell me how much more settled we are now and how things 'must' be much easier for me. I feel like saying "you come and try it", but I just smile and agree. What's the point in doing anything else!
It is funny how everyone thinks they know you are coping,whether they really do or fear that if they are admit you are not they wouldn't know what to do or say. When my OH was at home I had many 'If you need to talk or anything I can do' but these were always for me. What I actually needed was someone to spend quality time with him, even if all I did with the time was walk the dog, food shop or sleep. People do not want the responsibility, so by telling you that you are coping well absolves them of that. It is not badly meant just a touch of self preservation. That said, we partners of PWD are among the strongest there are, because we have to be. My favourite phrase to myself is 'hang on in there kiddo' and I do try
 

SoAlone

Registered User
May 19, 2016
142
Devon
I felt my family had gone off the boil so to speak after the first few weeks of the care home. No follow up phone calls to me to see if I’m ok. Just presumed I was getting on with it. Well I’m not!!
There seems to be a presumption that once PWD is in a Nursing Home environment that you are free to 'get on with life'. That as we all on here know is not the case. We still have much formal stuff to deal with, still responsible for making sure that they are safe and well cared for there. In addition we have our own emotions to deal with. To be painfully honest the first couple of weeks that OH was in Assessment centre, was a relief and consisting of much sleeping and recovery from the exhaustion but soon after that this 'moving on' thing doesn't happen quickly. I am now over 18 months in and I still miss OH like hell and am still cross that the future we had planned has been taken from us. But people really don't want to hear that. When I mute the idea that I want him home, I am immediately told I wouldn't cope, which actually means they wouldn't cope with the support that would mean I might need from them. I do know in our case it isn't viable and after the fight to get him the right care placement and yes even the right funding, not sure I could do it all again if things didn't go well. But I can dream
 

marionq

Registered User
Apr 24, 2013
6,013
Scotland
There seems to be a presumption that once PWD is in a Nursing Home environment that you are free to 'get on with life'. That as we all on here know is not the case. We still have much formal stuff to deal with, still responsible for making sure that they are safe and well cared for there. In addition we have our own emotions to deal with. To be painfully honest the first couple of weeks that OH was in Assessment centre, was a relief and consisting of much sleeping and recovery from the exhaustion but soon after that this 'moving on' thing doesn't happen quickly. I am now over 18 months in and I still miss OH like hell and am still cross that the future we had planned has been taken from us. But people really don't want to hear that. When I mute the idea that I want him home, I am immediately told I wouldn't cope, which actually means they wouldn't cope with the support that would mean I might need from them. I do know in our case it isn't viable and after the fight to get him the right care placement and yes even the right funding, not sure I could do it all again if things didn't go well. But I can dream
@SoAlone i had exactly that said to me last night by a friend who hopes I will be able to spend more time with her. In fact I have spent this week since John went into the nursing home making sure everything is right for him and sorting out the affairs of his handicapped sister. I now know 100% that she too has dementia. I am trying to keep a lid on it until the staff in her sheltered housing recognise it too and will then insist she goes into residential care. I cannot go down that road again. In the meantime she loses, hides or throws away all the money she gets for her day to day expenses. Now where did I put my blood pressure pills?
 

White Rose

Registered User
Nov 4, 2018
355
I can empathise! Following another period in hospital my OH has a ‘temporary ‘ placement in a care home as respite! I had to fight all the way and without a supportive family the authorities would have worn me down BUT had I been widowed friends would, I believe, have rallied and been sympathetic. Now all I get is well, you can now go out And about....you’re not tided down anymore......get on with your life ...! My life was with him........I am heartbroken........not feeling guilty because he is there but despairing that I am not with him!
I am not lonely but alone! How does he feel!
Heart broken and Unhappy..that’s how he is......his face says what I am sure he is feeling.........
BUT I shall have a big smile when I visit...assure him all is well and we still can share ......
I have a wonderful and supportive family...who took the matter from me and insisted on respite with a view to permanent! Face a day at a time and remain strong, my sons tell me....when I am anything but that.......
Like I say if I had been widowed I am sure friends and neighbours would act differently!!!!!!
So very sad, we don't want to see them in a care home, we want so much to look after them but in the end I guess, for our own health and sanity, we have to accept it's just too much. As someone else has said, if only people would help more - I so wish my partner's children would just come and take him out occasionally, or even just come and see him more than once in 6 months. We aren't at that stage of him needing to be in a care home yet and I'll continue looking after him at home for as long as possible. A couple of his children have said categorically they won't see their father go into a care home, so then I'm not sure what will happen. Ah well, one day at a time.
 

Rosebush

Registered User
Apr 2, 2018
1,478
I felt my family had gone off the boil so to speak after the first few weeks of the care home. No follow up phone calls to me to see if I’m ok. Just presumed I was getting on with it. Well I’m not!!
My husband has been in his care home since February, although he has not been at home since November. At first my children visited their dad, but over the last few months the visits have stopped as they think it's a waste of time because he doesn't know who they are! he doesn't know who I am but I still visit. Also I rarely see them although my daughter and eldest son live only 5 minutes walk away. My youngest son lives about 15 miles away and he makes more effort than the other 2. My eldest son does phone to see if I am alright, but it would be nice to spend more time with him, as for my daughter she never visits or phones, still trying to work out what I've done wrong! I don't know what I would do without my dog. Why does everybody assume we are ok?
 

SoAlone

Registered User
May 19, 2016
142
Devon
So very sad, we don't want to see them in a care home, we want so much to look after them but in the end I guess, for our own health and sanity, we have to accept it's just too much. As someone else has said, if only people would help more - I so wish my partner's children would just come and take him out occasionally, or even just come and see him more than once in 6 months. We aren't at that stage of him needing to be in a care home yet and I'll continue looking after him at home for as long as possible. A couple of his children have said categorically they won't see their father go into a care home, so then I'm not sure what will happen. Ah well, one day at a time.
This is a tough one. When OH was deteriorating quickly, I had endless, and I am sure heartfelt offers from my grandson that he and his partner would help with his care rather than see him go in a home. Being a realist I knew in my heart that it wouldn't work, with all 3 of us and his Mum with full time jobs and Social Services offering 2 15 minute visits 5 days a week only. Even during those darkest of days, I had to ask them for help when during episodes of being agitated for 48 hour stretches meant I couldn't cope with keeping him from disappearing out the door every time i needed the loo. Be very honest with yourself, I reached what was titled 'Carer Breakdown' before we got help not a place I would want anyone to go. I didn't have POA for Health & Welfare so the decision on OH care was then taken out of my hands by Best Interest Team, so in the end they might not have a choice in the matter. What I am trying to say in a very long winded way, don't push yourself to far, and beware of knee-jerk reactions promising endless support, because in some cases, maybe not yours, it just can't be done
 

White Rose

Registered User
Nov 4, 2018
355
This is a tough one. When OH was deteriorating quickly, I had endless, and I am sure heartfelt offers from my grandson that he and his partner would help with his care rather than see him go in a home. Being a realist I knew in my heart that it wouldn't work, with all 3 of us and his Mum with full time jobs and Social Services offering 2 15 minute visits 5 days a week only. Even during those darkest of days, I had to ask them for help when during episodes of being agitated for 48 hour stretches meant I couldn't cope with keeping him from disappearing out the door every time i needed the loo. Be very honest with yourself, I reached what was titled 'Carer Breakdown' before we got help not a place I would want anyone to go. I didn't have POA for Health & Welfare so the decision on OH care was then taken out of my hands by Best Interest Team, so in the end they might not have a choice in the matter. What I am trying to say in a very long winded way, don't push yourself to far, and beware of knee-jerk reactions promising endless support, because in some cases, maybe not yours, it just can't be done
Thank you, I do appreciate your advice. I have a friend who's husband had dementia, he has since died but she was at carer breakdown before eventually getting him into a home, no one should have to be deal with what she did by herself. I dread the conversation with my partner's children when the time comes that I can't cope because they've been so unhelpful and downright obstructive. But one day at a time and at the moment I can cope by continuing to work part time and having carers come in, some down days of course and a tremendous amount of stress!