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Who has stolen my husband?

kindred

Registered User
Apr 8, 2018
2,414
Hi there. Thanks for your reply. Just a moan today to just really speak to someone else. Friday I had an appointment at the hospital, planned to leave 1 hour before my appointment but no, my wife wants to leave 3 hours before and no amount of reasoning stops her just sitting in the car waiting to go. We therefore get there 3 hours before I’m seen and the appointment was late.grrrrr! Today we go to a shop some way away for a treat for her but almost as soon as she’s there wants to go home. Now looking at the tv asleep. I’m finding that I’m getting angry more often and I’ve never been like this. I just explode sometimes with the sheer frustration of it all and I’m worried that I’ll remain an angry guy without any resources for patience. Dementia has really brought my horrible side out and it worries me. I’d like to think that not everyone out there is a natural kind and sympathetic person that shows up my failings
Dutchman, my kindness and my sympathy was frequently tested and failed. Getting somewhere three hours early because your wife insists on this is awful, I do know. I'm not an angry person but oh boy, did it take me to some dark places. At one time, the only thing I had to myself was a little church group on Friday afternoon. When I came back, invariably, my OH had broken something, ruined something or put the pillow down the loo and pulled the chain. You cannot imagine. It felt like a punishment for having something for myself and boy was I angry, then despairing. All sympathy to you, please, your what you call failings are the responses of a normal, hugely tested human being. with warmest, Kindredxx
 

Sad Staffs

Registered User
Jun 26, 2018
677
Hi there. Thanks for your reply. Just a moan today to just really speak to someone else. Friday I had an appointment at the hospital, planned to leave 1 hour before my appointment but no, my wife wants to leave 3 hours before and no amount of reasoning stops her just sitting in the car waiting to go. We therefore get there 3 hours before I’m seen and the appointment was late.grrrrr! Today we go to a shop some way away for a treat for her but almost as soon as she’s there wants to go home. Now looking at the tv asleep. I’m finding that I’m getting angry more often and I’ve never been like this. I just explode sometimes with the sheer frustration of it all and I’m worried that I’ll remain an angry guy without any resources for patience. Dementia has really brought my horrible side out and it worries me. I’d like to think that not everyone out there is a natural kind and sympathetic person that shows up my failings
Hi @Dutchman
Never feel guilty about having a moan. We all need someone we can really tell how we feel. You are NOT failing. We are all entitled to vent our feelings. We are spending our time, our life, looking after someone we can’t reason with. It’s so hard.
Years ago we would have talked things through, discussed things, compromised. These things that make a happy couple of many years have slowly disappeared. So slowly, that initially you don’t notice that things are changing. Then we are suddenly on our own, but not alone, but it feels that we are alone. My husband is there, but so much of him isn’t there anymore. And, I want back the part of him that has gone, and what I have left I could happily dispose of.
Yes, I know I’m rambling, and I apologise.
I’m here.... it’s good to chat. Take care and I look forward to speaking again soon.
B xx
 

sylvarda

New member
Hi S, thank you for your post. We are in the same boat aren’t we? And isn’t it tough. I’m sorry you are finding it particularly difficult at the moment. It’s like a roller coaster, but we can’t ever get off. I know what you mean about your husband doing just something that he used to, without being asked, reminded, pushed even. I’m doing all the tasks that used to be shared. And it’s the feeling of being unloved and uncared for that I find so hard.
Not sure what I would do without you to talk to. Yes, I could talk to professionals, but it isn’t the same. Then I have a few friends and very little family, but I will not ask for help as they have their own lives. In any case, they see him when he is all sweetness and light... they think he is fine. They don’t see him screaming and shouting when he bears no resemblance to the man I love. Take care... and, please keep in touch with me...
love B xx
 

sylvarda

New member
I too agree with the sentiment of this thread.

My wife and I met in an academic setting when we were in our late 40's. In our late 50's our discussions when we walked revolved around the teachings of the great philosophers down the ages. Now in our early 60's I have many poignant moments when I observe the look of puzzlement on her face as she tries to figure out how to use something as simple as a kitchen timer.

At times I find it hard to cope/deal with the decline. The thing that helps me is that my wife is still the same lovely person most of the time. Her abilities, rather than her personality, seem to be taking the main hit.
 

sylvarda

New member
KaraokePete, I too met my husband in an academic setting. We were both university teachers, writers, researchers, and consultants. Now my husband can't read his watch, loses his emails, can't read maps any more, gets lost, etc. It sounds as though your wife might be further along the road than my husband is but we are going the same way. I am glad I have found this TP forum as I sometimes just wish I could share stories about D but I don't want to bore my friends with them. D does not have Alzheimers but Parkinson's dementia. But there are many similarities. Thanks for posting here...
 

karaokePete

Registered User
Jul 23, 2017
5,455
N Ireland
Welcome to the forum @sylvarda, I hope you find this to be a friendly and supportive place.

The stages of this road we travel are so fluid that I often feel it is hard to get any idea where we are along the journey. I often feel that comparing stages is, thus, a bit meaningless; even though I understand the natural desire to know 'where we are' with it all.

I believe that experiences shared are burdens shared and wisdom donated to the collective knowledge of this fine place. I hope you feel able to share your stories as we will all understand.
 

marionq

Registered User
Apr 24, 2013
6,077
Scotland
I wonder if this time issue is to do with old age as much as dementia. Recently I have been asking my SIL who does not yet have dementia to sit with my husband on Friday morning to let me go shopping. Every week I remind her to come at 10 am as I need time to get John up toileted, showered, shaved etc then bed stripped and remade if necessary.

She comes whenever it suits her from 8.30 am. I am up to my ears at that point and in any case main shops are not even open. Each time I tell her this but last Friday I simply showed her the door when she arrived at 8.50 am and told her to go home. Cutting my nose off to spite my face but this is all I ask of her and we are all under such pressure that thoughtlessness is too much to bear. It will be interesting to see if she turns up next week.
 

Sad Staffs

Registered User
Jun 26, 2018
677
KaraokePete, I too met my husband in an academic setting. We were both university teachers, writers, researchers, and consultants. Now my husband can't read his watch, loses his emails, can't read maps any more, gets lost, etc. It sounds as though your wife might be further along the road than my husband is but we are going the same way. I am glad I have found this TP forum as I sometimes just wish I could share stories about D but I don't want to bore my friends with them. D does not have Alzheimers but Parkinson's dementia. But there are many similarities. Thanks for posting here...
Hello @sylvarda
I hope you can get as much comfort and support from members on this forum as I have.
When my husband was first diagnosed I had no idea what to do, what to think, how to react.
I felt helpless and useless, but I especially felt as if I was grieving. I still am grieving and always will grieve for the man he was. I don’t understand where he has gone!
I miss him so much. He has been my life, we have been a totally devoted couple, doing everything together, at the expense of so many things.
Being so insular has meant that we have very few people we can now get support from.
But we cope. My fear is how I will cope when he doesn’t recognise those close to him, and especially when he doesn’t know who I am. I just can’t think about that, so never plan or think about the future. Only the never ending doctor, hospital, Sainsbury’s are in the diary.
You are always welcome here Sylvarda. Please take care of yourself and I look forward to talking to you again.
Love B xx
 

Sad Staffs

Registered User
Jun 26, 2018
677
Have I done the right thing?
I feel so lonely even though my husband is only ever a step in front, or a step behind me! I don’t get any space or peace, yet I’m still lonely and have felt for some time that the house, our home, needs more life in it.
We used to have a little cat, but she had cancer and we had to have her put to sleep. I so miss that little thing. But we had just retired and we were holidaying for weeks and months, so it seemed unfair to have another cat and then for us to leave it in a Cattery for long periods.
Now we don’t go anywhere other than doctor, hospital, shopping.
We can’t leave the house for more than 3 hours as my husband panics about his Incontinence.
So I am rehoming a little profoundly deaf cat. She is 8 to 12 months old. I know having a deaf cat will mean extra care and support, especially as she will need to be kept inside, she will be a house cat. At least she won’t bring the treasures my other cat did, mice, birds, and once a bat!
I’m excited, and nervous. But I’m looking forward so much to having this little girl to take our minds off our life as it is now, and what is to come.
I hope she will love my husband, but if she decides she loves him more than me, then..... I’ll just have to get another!
Love B xx
 

Sad Staffs

Registered User
Jun 26, 2018
677
I wonder if this time issue is to do with old age as much as dementia. Recently I have been asking my SIL who does not yet have dementia to sit with my husband on Friday morning to let me go shopping. Every week I remind her to come at 10 am as I need time to get John up toileted, showered, shaved etc then bed stripped and remade if necessary.

She comes whenever it suits her from 8.30 am. I am up to my ears at that point and in any case main shops are not even open. Each time I tell her this but last Friday I simply showed her the door when she arrived at 8.50 am and told her to go home. Cutting my nose off to spite my face but this is all I ask of her and we are all under such pressure that thoughtlessness is too much to bear. It will be interesting to see if she turns up next week.
I’m so impressed that you had the b...s to do that. Well done @marionq ... I need to take a leaf out of your book.
Take care, B xx
 

marionq

Registered User
Apr 24, 2013
6,077
Scotland
@Sad Staffs i hope your little cat will make you happy. Animals can fill a little gap when life is so dull. My granddaughter asked on Saturday why there was a Robin in my watering can. I had left one lying on its side and the wee bird has built a nest from moss and feathers in it. I was so surprised and now of course I must not move the watering can in case eggs are inside. I feel as if we have a houseguest! I love these wee birds.
 

Sad Staffs

Registered User
Jun 26, 2018
677
@Sad Staffs i hope your little cat will make you happy. Animals can fill a little gap when life is so dull. My granddaughter asked on Saturday why there was a Robin in my watering can. I had left one lying on its side and the wee bird has built a nest from moss and feathers in it. I was so surprised and now of course I must not move the watering can in case eggs are inside. I feel as if we have a houseguest! I love these wee birds.
How wonderful is that.... you must have a quiet and serene garden. I too love Robins. I love the cheek and audacity of them.
Please let me know if you hear babies.... and I hope the watering can is cat proof.
Take care, love B xx
 

Dutchman

Registered User
May 26, 2017
617
Devon
Hi @Dutchman
Never feel guilty about having a moan. We all need someone we can really tell how we feel. You are NOT failing. We are all entitled to vent our feelings. We are spending our time, our life, looking after someone we can’t reason with. It’s so hard.
Years ago we would have talked things through, discussed things, compromised. These things that make a happy couple of many years have slowly disappeared. So slowly, that initially you don’t notice that things are changing. Then we are suddenly on our own, but not alone, but it feels that we are alone. My husband is there, but so much of him isn’t there anymore. And, I want back the part of him that has gone, and what I have left I could happily dispose of.
Yes, I know I’m rambling, and I apologise.
I’m here.... it’s good to chat. Take care and I look forward to speaking again soon.
B xx
I’m getting to the stage where I just wish I was on my own. I’m torn between this thought and the emotions that arrive when my wife tries to show love to me but spoils it by being extremely awkward and unreasonable and I get very annoyed. It’s just lurching from one thing to another. I try to imagine what it would be like on my own, I can cope , after all I’ve done most things for the past 4 years with little support. Then again my wife been there for 29 years and for 25 of them we were a normal couple. Dementia has crept up and stolen my lovey wife. Oh the guilt of feeling this way. But the release from it all would be heavenly.
 

marionq

Registered User
Apr 24, 2013
6,077
Scotland
I’m getting to the stage where I just wish I was on my own. I’m torn between this thought and the emotions that arrive when my wife tries to show love to me but spoils it by being extremely awkward and unreasonable and I get very annoyed. It’s just lurching from one thing to another. I try to imagine what it would be like on my own, I can cope , after all I’ve done most things for the past 4 years with little support. Then again my wife been there for 29 years and for 25 of them we were a normal couple. Dementia has crept up and stolen my lovey wife. Oh the guilt of feeling this way. But the release from it all would be heavenly.
I think your feelings will be understood by many on here.
 

Guzelle

Registered User
Aug 27, 2016
420
Sheffield
To be able to go out when we want. Go on holiday when we want. Visit friends and family when we want. Sit and watch TV without interruptions. Nobody wandering around the house looking for things that don’t exist and being shouted at for not knowing what they are looking for! Mopping up the wee on the bathroom floor several times a day. And worse!
 

Sad Staffs

Registered User
Jun 26, 2018
677
I’m getting to the stage where I just wish I was on my own. I’m torn between this thought and the emotions that arrive when my wife tries to show love to me but spoils it by being extremely awkward and unreasonable and I get very annoyed. It’s just lurching from one thing to another. I try to imagine what it would be like on my own, I can cope , after all I’ve done most things for the past 4 years with little support. Then again my wife been there for 29 years and for 25 of them we were a normal couple. Dementia has crept up and stolen my lovey wife. Oh the guilt of feeling this way. But the release from it all would be heavenly.
So many will understand how you feel @Dutchman
Trouble is, it’s such a lonely existence.
We are a couple, but not a couple.
It’s so hard having to do everything yourself, when you have shared your life together until this awful disease took them.
I remember when my Mom was diagnosed with cancer and it felt like something so very alien was eating her slowly. Now, so many cancers can be treated, but there is no treatment for dementia.
I now think of it as something slowly consuming my husband. It’s as if it’s eating all the happy, loving, caring, considerate parts of him, leaving me with the unpleasant bits. What makes it even worse is that he hosts so well, and family and friends never see what I see.
I can understand why you feel life would be better on your own, it would be a relief.
I am not in that position yet, but I know it will come, and I lie in bed wondering how I will cope.
Who has stolen my husband? I don’t know.... but life can be so cruel.
B xx
 

Grahamstown

Registered User
Jan 12, 2018
1,671
80
East of England
So many will understand how you feel @Dutchman
Trouble is, it’s such a lonely existence.
We are a couple, but not a couple.
It’s so hard having to do everything yourself, when you have shared your life together until this awful disease took them.
I remember when my Mom was diagnosed with cancer and it felt like something so very alien was eating her slowly. Now, so many cancers can be treated, but there is no treatment for dementia.
I now think of it as something slowly consuming my husband. It’s as if it’s eating all the happy, loving, caring, considerate parts of him, leaving me with the unpleasant bits. What makes it even worse is that he hosts so well, and family and friends never see what I see.
I can understand why you feel life would be better on your own, it would be a relief.
I am not in that position yet, but I know it will come, and I lie in bed wondering how I will cope.
Who has stolen my husband? I don’t know.... but life can be so cruel.
B xx
I am feeling very much the same as you, broken-hearted at the loss of my companion of so many years, wanting to do things like we always did happily and now he can barely understand how handicapped he is. It’s so frustrating that he thinks and says he can do whatever he wants, help me as much as he did, but is as weak as a kitten and a shadow of the man he was. Like you and @Dutchman I am torn between wanting to be with him and wanting to be without him to do things that I am capable of doing and he is not. There is nothing to be done about it but carrying on.
 

Sad Staffs

Registered User
Jun 26, 2018
677
I am feeling very much the same as you, broken-hearted at the loss of my companion of so many years, wanting to do things like we always did happily and now he can barely understand how handicapped he is. It’s so frustrating that he thinks and says he can do whatever he wants, help me as much as he did, but is as weak as a kitten and a shadow of the man he was. Like you and @Dutchman I am torn between wanting to be with him and wanting to be without him to do things that I am capable of doing and he is not. There is nothing to be done about it but carrying on.
Oh my goodness @Grahamstown it’s so tough isn’t it? My husband tries to help me, but it’s always an afterthought, and there is so much he isn’t able to do mentally or physically. He has lost so much weight, is so frail, and his mobility and balance very poor.
We had a decorator call to quote for work yesterday. My husband has always decorated inside and outside our home, but not for a long time. He needed to be in charge, this was his. He had been fretting since I arranged the appointment. It was so painful to watch. He struggled. I know the decorator was confused. But I felt I had to let him have this.
There are many times that I just want to walk away, have space... what is that? It’s a luxury we don’t have anymore. But I can’t see my life without him. I don’t want to live without him. One day I know things will change, I don’t know how, why or when, but I do dread that day.
Take care, love B xx
 

Grahamstown

Registered User
Jan 12, 2018
1,671
80
East of England
He has lost so much weight, is so frail, and his mobility and balance very poor.
Oh my dear, my husband is the same and has lost about 20lbs in the past year and a half. His trousers hang on him as he tries to tighten his belt with difficulty and today I thought that I should buy him a new pair. He is frail and I am stronger than him now, and he shuffles along. Today he said that his head feels funny inside, very telling. I try to keep him strong and upright when walking but I struggle. I find it very difficult to see him struggling to do tasks. Today out at lunch he had trouble cutting a piece of grilled aubergine salad and I helped him. As for your final words, I couldn’t agree more, can’t live with him and can’t live without him.
 

Sad Staffs

Registered User
Jun 26, 2018
677
Oh my dear, my husband is the same and has lost about 20lbs in the past year and a half. His trousers hang on him as he tries to tighten his belt with difficulty and today I thought that I should buy him a new pair. He is frail and I am stronger than him now, and he shuffles along. Today he said that his head feels funny inside, very telling. I try to keep him strong and upright when walking but I struggle. I find it very difficult to see him struggling to do tasks. Today out at lunch he had trouble cutting a piece of grilled aubergine salad and I helped him. As for your final words, I couldn’t agree more, can’t live with him and can’t live without him.
Thank you.... I take comfort from your words as I know I’m not alone.
Please take care of yourself. Your biggest fear is probably the same as mine... what would happen if something happens to you and me?
With love B xx