Lonely

christmas

Registered User
Apr 27, 2014
206
Leicestershire
Hi everyone Peter is ok in the home but I am not ,I miss him so much ,all I think about is how I want to have big hugs with him and talk to him , I thought I was coping with it all but all I do is cry when I am alone ,I see him every day but it's not the same and never will be he just sits there he can't talk and sleeps all the time ,everyone keeps telling me to have a holiday but I can't ,I promised him I would look after him and he would not go in a home so I have to be with him , has any one felt like there heart is broken he was my life I have a pain in my heart every day I miss him so much sorry I have to tell someone how I feel I have to be happy when the children are here so they don't get upset , holding it all in don't help but people don't really want know how you really feel Christmas xxx
 

Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
Hello, I am so sorry that no one saw this post yesterday. My husband has been in a home for just over two weeks and I don’t think I am coping well at all. I cannot settle to anything when I am at home, so I go to visit him, but it is not how I imagine it will be. I think we will sit and chat, but the husband ‘in my head’ is not the one in the home.
It is absolutely horrible, but what you are experiencing is perfectly understandable and normal. As far as anything can be normal in our lives. In your case, it sounds as if there is an enormous amount of guilt too, and I feel that as well. I feel almost physically sick when I come across one of his possessions and think, he will never use that again, and it’s my fault. So I am talking to myself, as much as to you. Our husbands have had to move, because of dementia, not because of some failing on our part.
There comes a time when a team of professionals can provide better care than one person, however loving that person is. When we made our marriage vows, we promised to care, in sickness and in health. And it is an enormous act of love to seek the very best care we can for our husbands and to acknowledge that we cannot provide it. We have put their interests before our own, in that we are going through terrible pain, in order that they might have good care.
And do other people understand? For the most part, the answer is no. Until someone has gone through this, they have no idea. Most people still think that dementia is a sweet little old lady forgetting things. Many of our former friends, will not even visit my husband.
I have lost a husband to cancer, five years after diagnosis and I looked after him until the last three weeks of his life, when he went into a hospice, because they could provide better care than I could. I am finding this experience harder.
The beauty of Talking Point is that someone has been here before us, and does know how it feels, so the support is here.
You can always share with us how you are feeling. There is no need to be brave here.
 

imsoblue

Registered User
Feb 19, 2018
353
Well said @Amethyst59. @christmas there are many of us wearing your shoes. They are quite painful. Pinch at the toes and rub blisters. Even worse they cause pain in the back, not even on the feet anymore. Just know you are not alone. That has helped me tremendously. I wish I could hug you in person, but please accept this virtual one. (((((hug))))
 

Unhappy15

Registered User
Feb 7, 2015
130
Hello Christmas,
I have just read your post and can identify with all you have said. My husband has been in care for three years but I still remember the first few months so clearly. I had a deep pain in my chest
that would not let me breathe properly and tears that would not stop. I felt that everything was my fault, his illness, the fact that he had been sectioned and that he was not in his home with his possessions. Christmas what you are suffering is grief, shock and loss.
We carers suffer the shock of dementia, watching the person we love disappear and replaced by a stranger who we do not know but still have to care for.
We grieve for the person we have lost and the life we have lost because we know nothing will ever be the same again.
Three years on for me and it has eased a little, I visit Joe everyday but I am no nearer to sorting my life out. I have people saying "join something, do something" but if the will is not there then what is the point?
Only the people who have cared for PWD understand what it is like, we have a living tie that holds to a life we no longer have.
Christmas, I hope you feel better soon and keep posting because here you are among friends who understand every word and feeling you are going through, stay strong and look after yourself.
Kathy xxx
 

Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
‘A living tie that holds us to a life we no longer have’. My goodness, what a perfect description @Unhappy15. And I’m guessing that is why, three years on, you have ‘joined nothing’. I cannot see, and do not want a life for myself, while my husband is living.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,337
Kent
Being the spouse of a person with dementia I think is one of the biggest tests anyone can live through. Not only do we have to come to terms with the illness , we lose the togetherness, the sharing and the partnership we treasured for so many years.

It`s not surprising no one wants to `get on with their lives` while their partners are still living, even if they are in residential care. There is no room for pleasure if it can't be shared.

Of course you miss having your husband at home with you @christmas but he is there for a reason. You made a promise you could not keep not knowing in any way how the illness would develop.

Even if you are getting nothing back from him, sit with him, hold his hand, let him feel you are there. Gradually I hope there will come a time when you will not feel you need to be with him all the time and will be able to enjoy some better times with your children
 

christmas

Registered User
Apr 27, 2014
206
Leicestershire
Thank you its good to get my feelings out to someone who really understands , l just don't know what to do with myself I don't want to go out when I am not with Peter ,the children tell me I have to have a life but without there dad I haven't got one hugs to you all and thank you once again I am going to have a talk to my self and pull my self out of this Peter would tell me of if he could xxxxxchristmas
 

Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
I’ve just been to my counsellor...it’s a good start to the week. Would it be something you would consider @christmas ? She is trying to get us to work towards a life for me, in between visits. There are more things at WI I will be able to sign up for, and I’m hoping we will have a puppy soon, so that will be walking taken care of. A dog will be a reason to jump out of bed in the mornings, and a reason to walk, even on nasty days.
I can remember a day in my past life, when I walked my dog in fields...and it began to sleet. The wind whipped it into beautiful patterns...and the joy of getting home and getting warm and dry...I still remember it as one of the most exhilarating walks I had with my lovely Barley. And other people say, oh a dog. You have to walk in all weathers!
This might not be the answer for you, but is there anything that the thought of gives your heart a little lift? Reading? Dancing? Music? And might WI be for you?
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,337
Kent
I did return to reading when my husband went into residential care @christmas. I was unable to read while he was at home with me and poorly because he needed so much attention.

I joined the FB Book Club for recommendations , bought myself a Kindle and now always have a few books in hand.

I was an avid reader when I was younger but it tailed off due to work, family demands and failing eyesight. The kindle has been a godsend for me and fills many a solitary hour.

I also took it with me to the care home so when my husband was sleeping I could sit by his side quietly and read.

Did you have any hobbies or pastimes which you could take up again and which would be compatible with care home visits?
 

AliceA

Registered User
May 27, 2016
2,622
Hi everyone Peter is ok in the home but I am not ,I miss him so much ,all I think about is how I want to have big hugs with him and talk to him , I thought I was coping with it all but all I do is cry when I am alone ,I see him every day but it's not the same and never will be he just sits there he can't talk and sleeps all the time ,everyone keeps telling me to have a holiday but I can't ,I promised him I would look after him and he would not go in a home so I have to be with him , has any one felt like there heart is broken he was my life I have a pain in my heart every day I miss him so much sorry I have to tell someone how I feel I have to be happy when the children are here so they don't get upset , holding it all in don't help but people don't really want know how you really feel Christmas xxx
I am so sad for you, I would feel the same. People often cannot cope with others pain. Often when I start to say something I am told, not to worry, do not think like that, they mean well but it really does not help. Thinking of you. X
 

Jean1234

Registered User
Mar 19, 2015
259
Hi Christmas and Amathist
I am in the same place as you two . My OH went into a home just three weeks ago. I too spend my time in tears when i am back home alone. And not only then. I’m sure people in the street wonder what is going on when I walk by or drive by with tears streaming down my face. I can’t stop the tears no matter how hard I try. You’d think I would’ve dried up by now. I visit him most days but am beginning to wonder if it is upsetting him more my being there. He constantly asks me if we are going home now. Doesn’t mention it when I am not there. I spent my time trying to fit in things that needed doing round careing for him but now I have all the time free I just can’t seen to be bothered . I used to have lots of hobbies but I can’t seem to see the point anymore. I know it’s grief and I’m sure it will get easier but each visit turns up something new, like today, he just wondered off not realising I was there which hurt so badly even though I know it shouldnt.