Some advice please. My wife is only 65 but is now severely affected by Alzheimer's and we are looking seriously at a care home. But me and the kids (youngest early 20's) don't really know what we feel and I do worry about the youngest as he has lived with his mum's dementia since a young teenager. It is like my OH has left us, is gone to some degree but she is still walking around and looks like her old self, but she really does not know us anymore. What can we do, we feel like we are in limbo. There are no big events or things just an even and slow decline, but maybe going to the care home is a landmark. Someone suggested doing a 'Shiva' or some kind of wake where we might get together and look at pictures etc. Or is that morbid? To be frank I am having trouble remembering my wife when she was well, the AD has been going on so long and I want somehow to remember the lively, smart person she was. Any ideas or suggestions?
How do we grieve for my wife who is still here
- Thread starter Thursdayschild
- Start date
Hello:
I am so sorry for the situation you are in ... we all are in. You might want to look into "Ambiguous Loss" and "Anticipatory Grieving". They are both common responses. Ambiguous loss is when a person is still "present physically but absent emotionally.
Perhaps, a support group might be of some help if you are so inclined for you and for the children. I understand that feeling of being "In Limbo" so well. I, too, have worried that I will no longer remember who she once was ... but ... I believe we will. One way, if not too painful would be to get out some old pictures of better times to remind you of who she really IS underneath this awful disease. It is very very hard when they look the same/maybe sound the same,but are NOT the same. It is the illness. This is NOT her.
I am so sorry for the situation you are in ... we all are in. You might want to look into "Ambiguous Loss" and "Anticipatory Grieving". They are both common responses. Ambiguous loss is when a person is still "present physically but absent emotionally.
Perhaps, a support group might be of some help if you are so inclined for you and for the children. I understand that feeling of being "In Limbo" so well. I, too, have worried that I will no longer remember who she once was ... but ... I believe we will. One way, if not too painful would be to get out some old pictures of better times to remind you of who she really IS underneath this awful disease. It is very very hard when they look the same/maybe sound the same,but are NOT the same. It is the illness. This is NOT her.
My wife is 64 and got her diagnosis 5mths ago. We feel the grieving aspect too.
We bought a lovely scrapbook so that my wife's significant letters, certificates and photographs etc., could be assembled therein to construct her life story.
We bought a lovely scrapbook so that my wife's significant letters, certificates and photographs etc., could be assembled therein to construct her life story.
Me too...so many of us going through this. I have powered through so far...but yesterday I just cried all day. I hope the link the others gave you proves helpful. I understand your concern for your children...my two youngest lived with cancer from their early teens...until my husband died when they were 16 and 17. It absolutely sucks ...but here we are , and they are 25 and 26 ...and I know I am biased, but they are thoughtful, well rounded individuals. I'm not saying we didn't have our moments...it is a horrible thing for youngsters to go through, but with your love and support, they will do it. And, from a different point of view, THEY supported me. It is a horrible way to bring a family closer together, but that is what happened.
Hi Thursdayschild. I think, and found, that there are at least three stages of grieving. The first on diagnosis. You know what might have been.....but what won't be.
The second on going into a care home, if this occurs. There is no longer much hands on care, but care is gong on, you're just that little bit further away, but have a managerial role! And the third, of course, when death actually occurs.
Methods of dealing with these are as many as there are people affected.
Certainly after the third I plastered the house of pix of him in the good days. Over two years on there are still quite a few, one in particular...
While he was still around I had a special wall of photos with which he could relate. So, pix of weddings, ours and his children's. Pix of special events, such as birthday parties, special days out, even pix of food. Anything that you think might raise a spark! Plus pix of grandchildren growing up. Latterly, I labelled them, do he could look and (maybe) get the names right.
However, don't expect anyone with dementia to remember very much. They're more for you and family, especially in the late stages
The second on going into a care home, if this occurs. There is no longer much hands on care, but care is gong on, you're just that little bit further away, but have a managerial role! And the third, of course, when death actually occurs.
Methods of dealing with these are as many as there are people affected.
Certainly after the third I plastered the house of pix of him in the good days. Over two years on there are still quite a few, one in particular...
While he was still around I had a special wall of photos with which he could relate. So, pix of weddings, ours and his children's. Pix of special events, such as birthday parties, special days out, even pix of food. Anything that you think might raise a spark! Plus pix of grandchildren growing up. Latterly, I labelled them, do he could look and (maybe) get the names right.
However, don't expect anyone with dementia to remember very much. They're more for you and family, especially in the late stages
Thanks for the helpful replies. I have been compiling scrapbooks and put some in my OH's room in the care home - my wife does not look at them but I kind of wanted the staff to see pictures of her when she was well and a professional person and mother.
I cried for a week after my wife went into the home, and two months on I am still pretty sad. My wife settled very quickly, maybe the advice I had to place her before she was too affected by AD so that she could adapt was good. She was mid 6th stage the Consultant said.
Although I now have a new guilt problem: my wife is really quite happy in the home, her cognition has improved and so have her spirits! I think the care and routine have really helped. She is now really nice with me and pleased to see me - the nastiness I used to get at home seems to have gone. Apart from pretty bad ongoing struggles over bathing, she is a model resident. So now I am thinking why did I place her there in the first place? She is easy peasy now. She knows me most days (can't get my name or my relationship, with her but knows I am someone special). we have good visits and I come away thinking why not just take her home again - I could manage her as she is now. OMG what have I done. Or am I deluding myself? Anyone else had this sort of experience?
I cried for a week after my wife went into the home, and two months on I am still pretty sad. My wife settled very quickly, maybe the advice I had to place her before she was too affected by AD so that she could adapt was good. She was mid 6th stage the Consultant said.
Although I now have a new guilt problem: my wife is really quite happy in the home, her cognition has improved and so have her spirits! I think the care and routine have really helped. She is now really nice with me and pleased to see me - the nastiness I used to get at home seems to have gone. Apart from pretty bad ongoing struggles over bathing, she is a model resident. So now I am thinking why did I place her there in the first place? She is easy peasy now. She knows me most days (can't get my name or my relationship, with her but knows I am someone special). we have good visits and I come away thinking why not just take her home again - I could manage her as she is now. OMG what have I done. Or am I deluding myself? Anyone else had this sort of experience?
You could, of course, but I wonder if you should. Her improvement seems connected to the care home and the life she is leading there. Would she be the same person at home?
You placed her in the care home so she could become this content person. Now she is happy there, don't take her out again! It's precisely the care and routine of the care home she needs so you made the right decision putting her there - don't undo all he good work now by taking her out again!
I think you should just be happy that the situation has improved, and long may it continue before an inevitable decline will set in.
My mother was much happier in the care home than she was at home, but if she got ill there, the vagueness and/or nastiness could set in again until she was well again.
If you took your wife home, she'd probably decline - it would put you all under stress - and when the situation got worse you might not be able to find such a good home again.
You must think of your wife. If she has got used to the place, why distress her by moving her again? Leave her to be happy and rejoice in your visits there.
You say 'what have I done'? It sounds as if the answer is 'the best I could in the circumstances.' And now 'what can you do?' - 'The best in the circumstances' - which means nurturing her new found happiness in what is now her new home.
I know it's hard, but you are a good person who loves your wife and you should go easy on yourself. xx
My mum improved in her care home too - I think it is quite common.
I think that the improvement that you have seen shows that your wife now needs a whole team of people in order to look after her - not just one exhausted carer. You placed your wife there so that she could adapt to the place, and she has - please dont disrupt it. If you took her back home she would simply revert back to the way she used to be.
Mum tried to make me promise that I would never "put her in a home", but I promised to do the very best for her. In moving her to her care home I felt that I had kept that promise - mums care home was indeed the best thing for her and, by the sound of it, you have done the same for your wife.
I think that the improvement that you have seen shows that your wife now needs a whole team of people in order to look after her - not just one exhausted carer. You placed your wife there so that she could adapt to the place, and she has - please dont disrupt it. If you took her back home she would simply revert back to the way she used to be.
Mum tried to make me promise that I would never "put her in a home", but I promised to do the very best for her. In moving her to her care home I felt that I had kept that promise - mums care home was indeed the best thing for her and, by the sound of it, you have done the same for your wife.
I truly believe what you have done is shown the most love and care for your wife. You wanted her to get the best care and bring some peace to her from this torturous illness and your children to enjoy their Mum.
From your post your intentions have worked out perfectly your wife is contented. Your love for your wife comes across so strongly and will never waiver.
I think at home our loved PWD pick up on anxieties no matter how calm we believe we portray ourselves. My opinion only.
I so hope when the time comes I will be able to give my darling Mum the peace you have given your wife. X
