I think you’ve done an incredibly selfless thing and you should be incredibly proud of yourself. It was clear to everyone that reads your posts that you did not want your wife to go to a care home and that you did everything you possibly could to keep her at home. In the end your decision was based on what you believed was best for your wife so she could get the best possible care and the round the clock attention she now needs. It is clear you are a devoted husband and your pain is palpable. My heart goes out to you, stay strong x
Anxiety and fretting
- Thread starter Dutchman
- Start date
I think you’ve done an incredibly selfless thing and you should be incredibly proud of yourself. It was clear to everyone that reads your posts that you did not want your wife to go to a care home and that you did everything you possibly could to keep her at home. In the end your decision was based on what you believed was best for your wife so she could get the best possible care and the round the clock attention she now needs. It is clear you are a devoted husband and your pain is palpable. My heart goes out to you, stay strong x
I am only six weeks ahead of you in the care home move. I have been through all of the emotions that you describe but am coming to an acceptance that I did not fail, rather that I was, somewhat selfishly, trying to prove that I could successfully meet all my OH's needs single handed. Now he has settled into his life in a Care Home, wonderfully looked after by a whole team of professionals who have endless patience. This is easy for them when they work their shifts, go home, have days off, holidays and sick leave but impossible for one person, however loving, to maintain 24/7 for any length of time.
I am finding it very strange, living alone after 53 years of marriage but whenever I feel lonely or bereft, I can go and see OH, hold his hand, give him a cuddle, take his favourite biscuits and fruit from our garden, etc. It is a bit like when we were courting - I dress up and do my hair before visits and he is always freshly dressed and clean, though I am told that he is still needing 3 or 4 changes a day due to toilet accidents. He does not interact much with the other residents but seems to be very friendly with all the staff. I often have to search for him as he wanders about from unit to unit, apparently looking for me as he believes that I stay there too, just in another room. He is much calmer and relaxed than he was latterly at home, when he, like your wife, was always wanting to go 'home' to see his parents (both dead for over 20 years). He has not mentioned them at all over the past 6 weeks.
I hope this change proves to be as good for you and your OH as it has been for us. I have truly become again 'Wife nor Carer' Do not berate yourself as having failed- as I say, no one, no matter how loving, caring and determined can single handedly, successfully care for and keep safe and clean a person with advanced Dementia. It is a mentally and physically impossible task.
Thank you everyone for your support. I’m told it will get better and I’ve got to believe and hold on to that otherwise what’s the point of anything. At the moment I’m a mess and afraid to go near any of her clothes. I’m not washing any of it because the smell of her is company, yes, even the bad smells. Is that weird?
I know she’s not grieving like me. I know she’s getting the best treatment and I know it’s all going to take time but it’s frightening how awful all this can make you feel and I can quite understand how you cannot take it anymore and just want it to stop.
I know she’s not grieving like me. I know she’s getting the best treatment and I know it’s all going to take time but it’s frightening how awful all this can make you feel and I can quite understand how you cannot take it anymore and just want it to stop.
It is indeeed an evil and hateful condition @Dutchman. Your love for your wife shines out and I can only imagine how you must feel. As @Grannie G says your wife is still with you even though you are apart. I hope time will help you gather your strength and you are able to have happy visits with her.
Youve both got to adjust. It is a cliche to say that it will take time, but it is true.
Your head knows that you have done the right thing, but your heart hasnt yet caught up.
((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))
Your head knows that you have done the right thing, but your heart hasnt yet caught up.
((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))
Yes that’s true that I can see her. Please forgive me if I seem all over the place. It’s 4 in the morning and I can’t sleep. I just go round and round thinking that she ended up in a home because I was weak, selfish, self centred and didn’t have the strength to care for her at home. But it was so hard at the end when she just wanted to escape and go to her parents home.
But there were little things that were ordinary like when she said sorry for hitting me.She felt remorse. I was angry at that happening and I should have been more understanding.
I just feel that because of my weakness I now deserve all this agony of upset. I love her so much I just wish I hated her instead. I’ve phoned Samaritans countless times and the Dementia helpline. God I’m a mess.
I’m sure there are others out there that would have coped with all this much better than me and are doing a much better job.
You know I’m so unhappy right now that I’d have her back in a flash just to have her physical presence on the sofa next to me. Now there’s the extent of my grief.
I’ve been told not to say sorry so I won’t but at least I’ll ask your understanding and compassion for this man who, when it came to it, didn’t protect his wife from care home system.
Thank you
But there were little things that were ordinary like when she said sorry for hitting me.She felt remorse. I was angry at that happening and I should have been more understanding.
I just feel that because of my weakness I now deserve all this agony of upset. I love her so much I just wish I hated her instead. I’ve phoned Samaritans countless times and the Dementia helpline. God I’m a mess.
I’m sure there are others out there that would have coped with all this much better than me and are doing a much better job.
You know I’m so unhappy right now that I’d have her back in a flash just to have her physical presence on the sofa next to me. Now there’s the extent of my grief.
I’ve been told not to say sorry so I won’t but at least I’ll ask your understanding and compassion for this man who, when it came to it, didn’t protect his wife from care home system.
Thank you
Dementia has destroyed your wife's life, DON'T let it destroy yours too.
Wishing you strength and remember, you will still be caring for your wife just in a different way.
Of course there is understanding and compassion for you @Dutchman, as there has been understanding and compassion for everyone who has had to make the most painful decision for residential care.
There are some people with dementia whose needs cannot be met by a single person no matter how much they are loved. It was like this for me and for so many other on the forum.
It is not a question of failure, it is the management of challenging behaviour which is so often the deciding factor.
There are some people with dementia whose needs cannot be met by a single person no matter how much they are loved. It was like this for me and for so many other on the forum.
It is not a question of failure, it is the management of challenging behaviour which is so often the deciding factor.
@Dutchman my heart goes out to you for this struggle you are facing
I'm afraid many of us are products of an earlier society which seems to have instilled in us the belief that going into a care home is the most terrible thing and either a sign of great uncaring on our part or a huge failure.
I certainly remember from my younger days hearing such opinions widely espoused - and it settles there at the back of the mind, ready to spring up in later years, should the situation arrive.
However, those of us who have gone on to endure these awful times ourselves know only too well that it is the most awful, gut-wrenching decision to have to make when the time does arrive. How ridiculous that we were ever led to believe that such decisions were taken lightly by those faced with them!
Of course, I had personally hoped that I would be able to see my husband through this disease at home. The relentless march of the disease does not always allow for such hopes though.
I held things together for years but the day I was told that my husband's needs were too great to continue to be met at home was the day my heart broke. It was the last thing I wanted to hear but I knew it was true. I surprised myself at the depth and length of sobbing that came out of me as the feelings of guilt , loss and complete failure mixed in with relief.
The thought of my husband being somewhere else, being away from me and our family home, seemed really too much to bear.
I, and others, can assure you that it is not lack of caring, nor is it a failure or weakness. It takes immense resolve, incredible strength and deep love to sacrifice what we want for what our loved ones need.
As it was, my husband died shortly before he was due to be moved to a nursing home - but I had been dreading that scenario coming to pass. Yes, I would have coped, because that is what we do - but I have no doubt that I would have struggled, just like you are now.
I took my strength from all the wonderful people on this forum who had gone down that same path of accepting that their loved one needed extra help on top of what they could give them. I know from their tormented posts at those times that not one of them was uncaring, not one of them weak and not one of them a failure. Therefore, nor was I and nor are you.
The feeling of separation is huge, I know. I struggled for the last few months of my husband's life while he was cared for (by wonderful people) at a specialist dementia unit pending transfer to a nursing facility.
It was an awful time yet also a beautiful time because I finally got my husband back and could focus on his emotional well-being and general happiness while others supported him/us by taking care of his other needs.
It will take time, but gradually you will forge a way through this unwelcome but necessary change - and achieve a day to day life which allows you both to enjoy happier, less stressful times.
It is good that you are in touch with the helplines and this forum. Talking helps us pick through the jumbled mess weighing us down and gradually we start to see a way through.
Keep posting, we are all here for you.
I'm afraid many of us are products of an earlier society which seems to have instilled in us the belief that going into a care home is the most terrible thing and either a sign of great uncaring on our part or a huge failure.
I certainly remember from my younger days hearing such opinions widely espoused - and it settles there at the back of the mind, ready to spring up in later years, should the situation arrive.
However, those of us who have gone on to endure these awful times ourselves know only too well that it is the most awful, gut-wrenching decision to have to make when the time does arrive. How ridiculous that we were ever led to believe that such decisions were taken lightly by those faced with them!
Of course, I had personally hoped that I would be able to see my husband through this disease at home. The relentless march of the disease does not always allow for such hopes though.
I held things together for years but the day I was told that my husband's needs were too great to continue to be met at home was the day my heart broke. It was the last thing I wanted to hear but I knew it was true. I surprised myself at the depth and length of sobbing that came out of me as the feelings of guilt , loss and complete failure mixed in with relief.
The thought of my husband being somewhere else, being away from me and our family home, seemed really too much to bear.
I, and others, can assure you that it is not lack of caring, nor is it a failure or weakness. It takes immense resolve, incredible strength and deep love to sacrifice what we want for what our loved ones need.
As it was, my husband died shortly before he was due to be moved to a nursing home - but I had been dreading that scenario coming to pass. Yes, I would have coped, because that is what we do - but I have no doubt that I would have struggled, just like you are now.
I took my strength from all the wonderful people on this forum who had gone down that same path of accepting that their loved one needed extra help on top of what they could give them. I know from their tormented posts at those times that not one of them was uncaring, not one of them weak and not one of them a failure. Therefore, nor was I and nor are you.
The feeling of separation is huge, I know. I struggled for the last few months of my husband's life while he was cared for (by wonderful people) at a specialist dementia unit pending transfer to a nursing facility.
It was an awful time yet also a beautiful time because I finally got my husband back and could focus on his emotional well-being and general happiness while others supported him/us by taking care of his other needs.
It will take time, but gradually you will forge a way through this unwelcome but necessary change - and achieve a day to day life which allows you both to enjoy happier, less stressful times.
It is good that you are in touch with the helplines and this forum. Talking helps us pick through the jumbled mess weighing us down and gradually we start to see a way through.
Keep posting, we are all here for you.
Of course you are not weak or selfish, @Dutchman - this is the guilt monster whispering in your ear.
We all want to look after our loved ones till the end, but it often simply isnt possible. Your wife now needs a whole team of people caring for her, constantly, round the clock. It is just not physically possible for one person to do all that - however loving and willing they are. Violence and constantly wanting to go out are often the deal breakers and I honestly think that you have done so well, going on as long as you have - lesser mortals (probably me) would have caved in long ago!
We all want to look after our loved ones till the end, but it often simply isnt possible. Your wife now needs a whole team of people caring for her, constantly, round the clock. It is just not physically possible for one person to do all that - however loving and willing they are. Violence and constantly wanting to go out are often the deal breakers and I honestly think that you have done so well, going on as long as you have - lesser mortals (probably me) would have caved in long ago!
Hi hi everyone. Thank you for all your posts. They are a great comfort to me at this terrible time.
I spoke to an Admiral nurse tonight. She was replying to an earlier email I’d sent. She said ...there’s a film you might like to see staring Julie Christie about this mans wife who goes into a care home. You may find it helpful to see that you’re not alone she says. Husband reluctantly agrees that his wife needs to go but she insists. She has dementia and bit by bit forgets him as her husband and forms an attachment to a resident much to husbands dismay.
I mean if I haven’t got enough to worry about. That would just about kill me if my wife did that. I think I would kill her first and blow the consequences.
Oh Dutchman that last sentence made me chuckle.....from your posts your love for your wife shines like a beacon, but you do have to think of yourself as well!! I think we all struggle with "when is the right time for a care home" I know I'm struggling at the moment for mom, she has brilliant days but the **** days out number the good, it's a do or don't I situation....love and hugs across the airwaves to you xx
I`m shocked at this from an Admiral nurse.
I shouldn`t be because the first visit we had from an Admiral nurse I ended up showing her the door.
During our introductory phone call I told her what a private person my husband was and how much he resented outside intrusion. The minute she entered our house, she took off her coat, threw it over a chair and asked if we had our finances in order.
My husband hit the roof and told her it was none of her business.
I told her I thought she should leave.
I have to say this Admiral Nurse did learn and when I came into contact with her at a later date she was much better informed. I ended up volunteering to help her at a COGS [Cognitive Support] group which she ran.
It really does show however well trained some people are, if they haven`t had personal experience of dementia they really don`t understand how it affects us.
Trouble is I don’t feel like I’m coping at all. This morning I genuinely thought I was going to have heart attack with the grief I was feeling walking round our empty house balling my eyes out and screaming that I didn’t know what to do and who to turn to. In the end I phoned the Samaritans but ended up speaking to this lovely woman at Silver line. Although my son and family have visited me all I think about is my wife and how lonely I am. I’m not great company.
I’m just so worn out physically and mentally with it all and despair going to bed knowing at 4 in the morning it’ll all start again.
The new thoughts are that at odd moments when when my wife showed some need for closeness I pushed her away because she was extremely smelly having spent days and days in the same clothes. Or she was constantly anxious and pushed my patience over its limit.
I wondered if I’d been less been more understanding, compassionate, less selfish then we could have had more time together pushing the time back when she went into the home. My daughter thinks not saying that her mum was lost anyway and no amount of extra affection from me would have made a difference. It was inevitable. But the thought remains and grabs my heart and twists my guts. I going to the doctors tomorrow to get some help. Maybe also see a psychologist if advised.
I just want the feelings to get better and I’m desperate.
I agree with your daughter.
We try and keep hold of the person who is disappearing in front of us and we think that IF ONLY Id done this or IF ONLY I could have sorted that - then I wouldnt have lost them. Lies, all lies. There isnt anything you can do. We are trying to hold on to the ghost of the person they were. There was nothing you could do to stop her from no longer recognising you and nothing you could do to prevent her from wanting to go out.
I think that going to see the doctor is a very good idea. You are suffering from grief.
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