It is love But you can only do so much Our GP insisted my OH should go nin a care home for me to have respite and if she settled in I should consider permanent residential I am very old >80 and the GP was considering my health. It has been hard seeing her there and trusting other people to look after her. I can visit her whenever I wish
Why do we do it?
- Thread starter Littlebear
- Start date
This thread has been so helpful for me! This is the first time I have actually replied to anything on this forum although I have read lots.
But I was beginning to feel guilty about the resentment and anger I feel towards my OH - and I seemed to read a lot about the love that others had and I certainly don't feel. Well only very occasionally. We have been married over 60 years, and somebody once said to me that as you get older you are the way you have always been, only more so! So things in my husband that used to be seen as mild eccentricities now become real problems. He has always alternated hypochondria ( who else has ever been to their GP with a small blister on their foot?) and an obsession with being fit - and looking down on people who are less than perfect. So we keep going from one extreme to another, he either thinks he is dying or he is going on long walks, cutting the lawn, looking down on people who have a cold or flu. He has been diagnosed with a degree of heart failure recently which he hasn't been told about as it was felt it would alarm him unduly. But he spends a lot of time trying to read health encyclopedias and also all the bits of paper that come with his various medications - unfortunately possible side effects then make him stop him taking medications that might help.
I realise that worrying so much about ones health and finding it hard to accept one isn't fit and well must be very depressing, and it is becoming almost an obsession with him. But I do find it hard to be sorry for him and just find it irritating. Like others on this thread we have stayed together for practical reasons rather than love. And I am having to face up to this now. I should add we have 4 children, who all help as much as they can, but are limited by distance, full time work, etc. They too would absolutely agree with what I have said about their father. I shouldn't moan and things could be a lot worse, I know.
But hearing about others struggling with similar feelings about being the carer, makes me realise I am not alone in finding it hard. So thank you everybody!
But I was beginning to feel guilty about the resentment and anger I feel towards my OH - and I seemed to read a lot about the love that others had and I certainly don't feel. Well only very occasionally. We have been married over 60 years, and somebody once said to me that as you get older you are the way you have always been, only more so! So things in my husband that used to be seen as mild eccentricities now become real problems. He has always alternated hypochondria ( who else has ever been to their GP with a small blister on their foot?) and an obsession with being fit - and looking down on people who are less than perfect. So we keep going from one extreme to another, he either thinks he is dying or he is going on long walks, cutting the lawn, looking down on people who have a cold or flu. He has been diagnosed with a degree of heart failure recently which he hasn't been told about as it was felt it would alarm him unduly. But he spends a lot of time trying to read health encyclopedias and also all the bits of paper that come with his various medications - unfortunately possible side effects then make him stop him taking medications that might help.
I realise that worrying so much about ones health and finding it hard to accept one isn't fit and well must be very depressing, and it is becoming almost an obsession with him. But I do find it hard to be sorry for him and just find it irritating. Like others on this thread we have stayed together for practical reasons rather than love. And I am having to face up to this now. I should add we have 4 children, who all help as much as they can, but are limited by distance, full time work, etc. They too would absolutely agree with what I have said about their father. I shouldn't moan and things could be a lot worse, I know.
But hearing about others struggling with similar feelings about being the carer, makes me realise I am not alone in finding it hard. So thank you everybody!
This rang bells with me because these traits describe my husband too. We have been married 54 years, he has been a workaholic and physically very active all his life, and is generally a kind and thoughtful man but one of his most unattractive traits has been to point out people who are not perfect physical specimens in the street or on television. He is not very tolerant of others weaknesses which now is very ironic. We all have our little idiosyncrasies and with this disease they are magnified. We can be honest on the forums which is such a relief when we struggle with our feelings. I am by no means perfect but I have not lost my ability to function and now have to do it for us both. I find this a huge responsibility when difficult decisions have to be made. My children are very supportive and so far we have agreed about my decisions. I am glad you have found this thread so helpful and that you were able to post something which resonates for others.
Oh dear how that rings bells. Mum (MIL) is in Care, and early in her diagnosis we talked about the future and decided that we would not give up our home, work and friends (a long way from hers) to care for her there, and would be prepared to dedicate her savings to her care rather than try and take over ourselves. In the end, she had an accident which meant she could not stay at her home without extensive rebuilding and full time care, so now she is in a specialist home and we are faced with managing her money, which is making me as anxious and depressed as I was when she first began to go seriously downhill and we did not know what to do. We generally have a good relationship with her, but it's based on distance. She is a dominating character and now that she has Alzheimers, she is often aggressive and sometimes even violent towards those around her. We saw the beginning of this even while she was still "at home". She hasn't hit out at either of us, but she treats us and anyone else around as "on call", shouts if she doesn't get a swift response, calls people names and will push people if they get in her way ... I won't go on. We know this is the illness, and that she now can't control her emotions.
We still need to work, and hope for some life of our own yet (we are in our 60s) but know we don't have many active years left. One thing I find very hard is that this makes me think about our own lives - maybe that is selfish, but I find it inescapable. What will happen if this happens to one of us? Or both of us? (We both now have seen dementia "in the family", although in his case Mum was 90 before it began to make itself seen; my family seem to decline in their 80s, so we are a lot better off than some poeple.) What we have learned is that no matter what you know, or how you try to plan, there is no "straight answer" to dementia, no real path to comfort for the sufferer, no let-up for the family who care, even if they are not hands-on. We talk to her every day, and keep in touch with her Home, her doctor and anyone else who is involved, but we know we are on a slow downhill course, and I doubt she will ever be at peace in her heart, becasue she is not a peaceful character. I wonder how I would be in her situation. Probably "not a peaceful character".
Our last surviving Aunt (now in her 80s) is now hovering between "returning home" or "into care", and we don't think she even has dementia ... but nobody is sure, and the Services have kept quiet about ways she could be helped till her army of nieces put pressure on ... they just want her to "go into a home", and this time last year she was travelling and planning a move ... the move (to retirement flats) seems to have taken so much out of her that she is now ill ... She did just what we always thought you should - made provision - and it has just made her situation worse. (I am talking about Aunty now, not Mum - Mum never saw any of this coming, nor did we, we think we are wiser now but it doesn't seem to help that much!)
Now I think I am starting to rant ... I am so grateful for people who are posting their stories. Thank you. Everyone.
We still need to work, and hope for some life of our own yet (we are in our 60s) but know we don't have many active years left. One thing I find very hard is that this makes me think about our own lives - maybe that is selfish, but I find it inescapable. What will happen if this happens to one of us? Or both of us? (We both now have seen dementia "in the family", although in his case Mum was 90 before it began to make itself seen; my family seem to decline in their 80s, so we are a lot better off than some poeple.) What we have learned is that no matter what you know, or how you try to plan, there is no "straight answer" to dementia, no real path to comfort for the sufferer, no let-up for the family who care, even if they are not hands-on. We talk to her every day, and keep in touch with her Home, her doctor and anyone else who is involved, but we know we are on a slow downhill course, and I doubt she will ever be at peace in her heart, becasue she is not a peaceful character. I wonder how I would be in her situation. Probably "not a peaceful character".
Our last surviving Aunt (now in her 80s) is now hovering between "returning home" or "into care", and we don't think she even has dementia ... but nobody is sure, and the Services have kept quiet about ways she could be helped till her army of nieces put pressure on ... they just want her to "go into a home", and this time last year she was travelling and planning a move ... the move (to retirement flats) seems to have taken so much out of her that she is now ill ... She did just what we always thought you should - made provision - and it has just made her situation worse. (I am talking about Aunty now, not Mum - Mum never saw any of this coming, nor did we, we think we are wiser now but it doesn't seem to help that much!)
Now I think I am starting to rant ... I am so grateful for people who are posting their stories. Thank you. Everyone.
My heart goes out to all of you in this terrible experience. I wish I had some words of wisdom that would help, but I don't, and I haven't been able to find any. However, this forum helps because it gives us a chance to express how we are feeling without distressing our demented partners or boring our friends with constant moaning.
I do it out of love but am beginning to realise that dementia destroys love, murdering it slowly and painfully, and leaving behind anger and resentment - the opposites of love. My sweet husband is now a burden. I hate myself for feeling this but don't seem to be able to change my attitude to a more affectionate one. If anyone has techniques or strategies to help cope, I would be so grateful to hear about them.
I do it out of love but am beginning to realise that dementia destroys love, murdering it slowly and painfully, and leaving behind anger and resentment - the opposites of love. My sweet husband is now a burden. I hate myself for feeling this but don't seem to be able to change my attitude to a more affectionate one. If anyone has techniques or strategies to help cope, I would be so grateful to hear about them.
I care for my MIL with Dementia/Alzheimers, not my spouse so I can’t directly relate to what you’re going through but here’s how I cope: I try to remind myself that in her mind she is a small child, not the woman who raised my husband. She mostly has the abilities and interests of a 2-3 year old. I speak to her like I do my grandkids, reward her cooperation and ignore her moods, put her down for a nap when she needs it, put cartoons on the telly and buy her little toys to amuse herself. I try to leave all my expectations at the door; the woman I knew and admired is mostly gone through no fault of her own. It is not easy but it is much better for me than being angry, sad and resentful.
Why do we do it....
A caveat here as I have never been a full time carer....
I tried to help my parents, in what was already a pretty toxic relationship even before my mother had a dementia diagnosis, because they cared for me when I was a child and spent way too much time with me in hospital, something none of us could have predicted. Things come full circle and you find yourself caring for them. I suspect like many people, we didn't so much make decisions as dementia crept up on us....
And for the love we have as a family.
A caveat here as I have never been a full time carer....
I tried to help my parents, in what was already a pretty toxic relationship even before my mother had a dementia diagnosis, because they cared for me when I was a child and spent way too much time with me in hospital, something none of us could have predicted. Things come full circle and you find yourself caring for them. I suspect like many people, we didn't so much make decisions as dementia crept up on us....
And for the love we have as a family.
This is my dilemma too and it’s heartbreaking. I have no words of wisdom either except to battle on, and battle is the word at times. I guess one has to take the small gifts, for example I took him to a local NT garden and he exclaimed at the clouds and the trees and seemed to relax there, which I was able to do also. I did take the precaution of taking him in a wheelchair down the long tarmac drive and then he used the chair as a support to do a bit of walking to see the flower garden where we sat in the sunshine and admired them. All memory gone now but I took some photos and they will jog it. I seem to have lost heart recently but now I have read the posts I have to say let’s take heart and go on.
@Reggie4412 @Green Granny @Bakersgirl @Grahamstown
(sigh) I feel that my husband is becoming a burden to me too and I am beginning to resent having to live this life. Just saying that makes me feel so guilty... But 3 years ago I was looking forward to retiring, and now the future looks so bleak. But I suppose that like you, I'll just battle on.
(sigh) I feel that my husband is becoming a burden to me too and I am beginning to resent having to live this life. Just saying that makes me feel so guilty... But 3 years ago I was looking forward to retiring, and now the future looks so bleak. But I suppose that like you, I'll just battle on.
I do it for love because he is my life, and after a 10 week stay in hospital where he changed wards 6 times and there was glaring lack of dementia understanding, it has only hardened my resolve.
I know I am lucky, tho' he is now basically bed bound, and needs to be fed and hoisted he is still his kind sweet self. He always greets me with a smile and a kiss, even if I have to wake him, tho' sometimes I suspect it's it out of appreciation rather recognising I am his wife. I am his second carer along with the care company because I want to be, it can be hard and I get tired but I'll do all I can to keep him out of hospital in the future, out of the 6 wards he was in only 1 had any understanding of his needs.
I refuse to think of my life as poorer for this journey, granted it isn't what we had planned, it is just different. I took the decision early on after the diagnosis that I would play the hand fate dealt us the best way I can. I try to remember every day that there are people worse off than we are.
I know I am lucky, tho' he is now basically bed bound, and needs to be fed and hoisted he is still his kind sweet self. He always greets me with a smile and a kiss, even if I have to wake him, tho' sometimes I suspect it's it out of appreciation rather recognising I am his wife. I am his second carer along with the care company because I want to be, it can be hard and I get tired but I'll do all I can to keep him out of hospital in the future, out of the 6 wards he was in only 1 had any understanding of his needs.
I refuse to think of my life as poorer for this journey, granted it isn't what we had planned, it is just different. I took the decision early on after the diagnosis that I would play the hand fate dealt us the best way I can. I try to remember every day that there are people worse off than we are.
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If you had to visit the care homes where the dementia patients are looked after you would know why you do what you do. Only someone who loves their partner can give the care, patience and compassion needed to give your partner the type of care you would wish for yourself. Stay strong xx
Hi All!
It has to be love... what else can drive someone to put up with so much!?
That person you love, and in many cases seems to be your life, loves you too! It may be hard to believe that sometimes when all you get in pain and heartache thrown at you... but they would never want that hurt for you, would they?
I never want to end up in a care home... I want familiarity.. what I know... as I become more and more alone and lost in the thing... that is what I cling on to. The thought of being in a place that is alien, with people I don't know and condemned to the rest of my life controlled by strangers... sounds like hell to me!
But... I do not want my family to go through the hurt that I hear about all the time... the **** that is often what caring is. So when I am in my own space, lost from you and unable to make sense of all that is happening and even worse not able to tell you I love you... then I just want to go.... but that will not happen, will it... we don't treat animals the way the system treats us when we are at the final stage... so I have asked them to put me in a home... see me as gone, leave me in peace and get on with there life...
Carers are the sufferers... and I'm just the person with a problem that means as far as anyone knows... I know nothing of the world around me, or of those ones I love.
Carer's do a great job, but it is far more... and I can tell you what I think now and speak only from my own viewpoint, while I can!
It has to be love... what else can drive someone to put up with so much!?
That person you love, and in many cases seems to be your life, loves you too! It may be hard to believe that sometimes when all you get in pain and heartache thrown at you... but they would never want that hurt for you, would they?
I never want to end up in a care home... I want familiarity.. what I know... as I become more and more alone and lost in the thing... that is what I cling on to. The thought of being in a place that is alien, with people I don't know and condemned to the rest of my life controlled by strangers... sounds like hell to me!
But... I do not want my family to go through the hurt that I hear about all the time... the **** that is often what caring is. So when I am in my own space, lost from you and unable to make sense of all that is happening and even worse not able to tell you I love you... then I just want to go.... but that will not happen, will it... we don't treat animals the way the system treats us when we are at the final stage... so I have asked them to put me in a home... see me as gone, leave me in peace and get on with there life...
Carers are the sufferers... and I'm just the person with a problem that means as far as anyone knows... I know nothing of the world around me, or of those ones I love.
Carer's do a great job, but it is far more... and I can tell you what I think now and speak only from my own viewpoint, while I can!
Hi I’m new to this my Dad has dementia both Alzheimer’s and vascular,, this is breaking my heart I have cared for him since he came to live with me in 2015 he was diagnosed in July 2018 ,, Things became so difficult at home that we my dad has now moved into a care home,, the home is lovely and all the staff are amazing but he’s so unhappy and wants to come home.. What can I do it breaks my heart to leave him and now they say I’m the trigger so maybe better that I stay away for a bit because he gets so upset,,
Please help me I miss him so much
Xxxxx
Please help me I miss him so much
Xxxxx
Little Bear. You have said what I think every day. My life has come to a halt and I resent it. Friends get on with their life not understanding why I can't go to see a West End show like I used to, can't go on holiday with them . . .
It was never a love match between my husband and me. Now I am stuck looking after someone I don't even know any more. My health is suffering and if I could walk away I would. I just don't know how.
It was never a love match between my husband and me. Now I am stuck looking after someone I don't even know any more. My health is suffering and if I could walk away I would. I just don't know how.
I did it for love and would do it all over again in a heartbeat. Sometimes it was really tough to care for my husband and there were times when I said ‘l can’t do this any more’ but now he is gone I would do anything to have him back. I know he is now at peace but he has left a huge void in my life that cannot be filled. It is five months since he died and it feels like yesterday. I don’t feel liberated as I thought I would but just a huge sense of loss, heartbreak and longing but most of all I feel for him as he was only just 56 when he died. He still had so much of his life to live but Alzheimer’s chose him to work it wicked way and it so sad.
I do it for love of my Dad and remember all the things he did for me. While he was not of the generation to change my nappy, he was so supportive and encouraging. We didn't have much money, so I was not 'spoilt' with things, but he would do anything for me - and now I'm glad to do anything for him. It is a bit like having another unexpected child late in life, with the same ties and torments. I'm also very luck - although he cannot speak much, what he says is very real.
I also think of the Tracy Ulman sketch where she is lying on her death bed saying "I wished I'd played more computer games / watched more soap operas etc.". I don't want to look back and wish I had been there. I guess I'm hoping too that I'll have enough health and energy afterwards to get back to the things I enjoyed before.
Thanks for your honest and sincere post, which makes me feel less lonely.
I have been reading about so many caring and compassionate people who act out of love and , though exhausted and drained, are heartbroken and shattered about their OHs.
I am shattered and heartbroken too, but much more about myself and the life I am wasting than about my husband's illness.
Hi Margherita,
Long time since we have been on same thread. Like you I am struggling too. OH's mobility is so poor it stops us going out and about. I always have to consider how far he is able to walk. I see shows and exhibitions advertised and it makes me even more resentful. Only free time is a few hours during two days when he is at the day centre and much of that time is rushing around shopping and errands. Tried respite and was not impressed but might have to try somewhere else this summer just to recharge batteries.
Hi @rhubarbtree,
respite is as necessary as the air we breathe. Hope you can have some days on your own . What I miss most is my freedom. OH is reasonably fit, but his poor memory and reasoning as well as his "clinginess" drive me mad.
