Fear of the future

[Unhappy15]

Hi Kathy,

I have been a carer off and on since 1980 - for disabled children I have fostered and my own step children. This latest set of circumstances happened all together - my dearly loved OH almost dying and needing emergency surgery - his dementia getting very much worse - and having to close my business down because of it all......... the social worker said she thought I had PTSD - and I would not disagree!!

Here is a funny for instance.......

OH lost his keys, which are ALWAYS fastened to belt loop on his trousers.

Turned the house upside down, turned the house upside down again, and again and drove me potty. Totally obsessed - phoned the shops he had been in, phoned Lyme Regis - the pub we had been in, turned the house upside down, again, again.

Got replacement keys organised for the snooker club and the bowls club and the house.......

He swore blind that the keys had been on his belt loop when we left home........and that he used them to lock the house and to open the house when we returned.

End of story.......

Phone call today, from someone who had found the keys, and they are back in to post to us now.......

This means he lost them outside, - but it also means that he never locked the house up when we went!

BUT he need never have kept turning the house upside down as they were never, ever here!!!!!

Hello Maryjoan,
We used to have key problems as well. One day my husband took the three sets of keys to the house out to the garage with him and of course he didn't have them when he knocked at on the door to come in. Well on a bitter cold day I had to go into the garage to find them, two sets were recovered quite quickly but it took another two hours to find the third set which had been put in an umberella at the back of the garage. Of course there was the blank look when asked why.
Best wishes
Kathy xx

 

[Unhappy15]

Oh so good to hear from you Kathy. I am so sorry your marriage was difficult like that. Yes, I totally understand and am with you. I cannot yet go a mile and a half from my home and I haven't been farther than that for four years. Answers my darling, answers. We have to live without answers now, but I doubt if we would have been able to get them even if our husbands had not got dementia. When you visit your husband, do you feel like his wife still or do you feel a bit like one of the staff team? I keep sane by the latter, talking to the other residents, feeding some of the others stuff like that. When i was a cadet nurse when I was 17, my first assignment was a psychiatric/geriatric hospital and looking back all the patients had dementia but it was called delayed shell-shock then as it was not that long after the war. I got to love this patient group although never imagined my OH would be one of them ... I cannot cope with the freedom either sweetheart, you are not alone. I am so glad you are talking to us.

Hello Geraldine, When I visit my husband it is so bitter/sweet, most of the time he is now like a nice child, no temper tantrums, no aggression and of course he does not speak, if only he had been like that the last 34 years it would have been a wonderful marriage(sarcasm). Do I feel like his wife? I really can't say because so much has happened in the three years he has been in care. Sometimes I really wonder I I was ever married to him, everything in the past seems to be getting blurred but I suppose that is what time does. I do take him into the lounge areas and stay for a time but I do find this difficult as I always feel that this might be me in a few years time, who knows.
Kathy xx

 

[kindred]

Hello Geraldine, When I visit my husband it is so bitter/sweet, most of the time he is now like a nice child, no temper tantrums, no aggression and of course he does not speak, if only he had been like that the last 34 years it would have been a wonderful marriage(sarcasm). Do I feel like his wife? I really can't say because so much has happened in the three years he has been in care. Sometimes I really wonder I I was ever married to him, everything in the past seems to be getting blurred but I suppose that is what time does. I do take him into the lounge areas and stay for a time but I do find this difficult as I always feel that this might be me in a few years time, who knows.
Kathy xx

So good to hear from you Kathy. That is such a sad and poignant description of him being like a nice child. I agree so much, I think time does blur it all. I find it almost impossible now to access how terrible it was looking after OH at home for last four years. Perhaps the blurring is a blessing. What do you think? Kathy love, why do you feel it might be you in a few years time? I think we are the same age, you and me, I'm 72. Geraldinexxx

 

[Unhappy15]

So good to hear from you Kathy. That is such a sad and poignant description of him being like a nice child. I agree so much, I think time does blur it all. I find it almost impossible now to access how terrible it was looking after OH at home for last four years. Perhaps the blurring is a blessing. What do you think? Kathy love, why do you feel it might be you in a few years time? I think we are the same age, you and me, I'm 72. Geraldinexxx

Hello Geraldine, we are the same age I am 72 in June we are like fine wine getting better as we age. I find that I can hardly remember being married at times, the last six years since the dementia started seems to have blotted everything else out. I suppose I get scared when I see varying degrees of dementia when I visit the home and I just pray it won't happen to me, I find it all depressing.
Take care
Kathy xxx

 

[kindred]

Hello Geraldine, we are the same age I am 72 in June we are like fine wine getting better as we age. I find that I can hardly remember being married at times, the last six years since the dementia started seems to have blotted everything else out. I suppose I get scared when I see varying degrees of dementia when I visit the home and I just pray it won't happen to me, I find it all depressing.
Take care
Kathy xxx

Yes, I do understand. My OH is in a nursing home for late and end stage dementia and it can be very disorientating. With you all the way there. Yes,. this is strange isn't it, the dementia blotting out our past lives, I have definitely experienced this. I believe that madness is so compelling, so all engulfing that it fills the mind of us normal folk like nothing else does. We try to make sense, we try to help, we try we try we try and it does our heads in when nothing succeeds. You bet we are getting better as we age, Kathy. We are good women. So good to hear from you. Geraldinexxx

 

[maryjoan]

Yes, I do understand. My OH is in a nursing home for late and end stage dementia and it can be very disorientating. With you all the way there. Yes,. this is strange isn't it, the dementia blotting out our past lives, I have definitely experienced this. I believe that madness is so compelling, so all engulfing that it fills the mind of us normal folk like nothing else does. We try to make sense, we try to help, we try we try we try and it does our heads in when nothing succeeds. You bet we are getting better as we age, Kathy. We are good women. So good to hear from you. Geraldinexxx

Geraldine and Kathy,

I think I am not the only one then.......

I look a this 'nice child' sat in his armchair nearly all day long, and I think it is only a handful of year since we had a full on relationship - but he clearly does not feel any of that now. I sadly remember the last time we were, frankly, intimate, and he said " Ugh, messy!" - I felt so insulted, but now I know it was the child in his eyes - and I wonder 'what happened?'

If only he would hold my hand sometimes it would make me feel better.

As it is I feel like a benevolent housekeeper - I did not see that coming.........

 

[Unhappy15]

Geraldine and Kathy,

I think I am not the only one then.......

I look a this 'nice child' sat in his armchair nearly all day long, and I think it is only a handful of year since we had a full on relationship - but he clearly does not feel any of that now. I sadly remember the last time we were, frankly, intimate, and he said " Ugh, messy!" - I felt so insulted, but now I know it was the child in his eyes - and I wonder 'what happened?'

If only he would hold my hand sometimes it would make me feel better.

As it is I feel like a benevolent housekeeper - I did not see that coming.........

Hello Maryjoan,
My husband is very affectionate now more than he was at home. He holds my hand and kisses me but the down side is that he does that to everyone. There is a lady at the home who I call wife no3. When their 'romance' started it stunned me, you really don't expect to walk in and find your husband cuddled up to another woman. However, I just accept it now and when I go to the home in the mornings I always tell her that I just going to tidy him up and I'll bring him back, which I do.
They always embrace and then sit holding hands and looking at each other. The only upside to this story that one day when the three of us were in the lounge a visitor asked me if they were my mum and dad, it caused a lot of amusement when I told them that it was my husband and his girl friend.
What wonderful lives we lead.
Kathy xxx

 

[kindred]

Geraldine and Kathy,

I think I am not the only one then.......

I look a this 'nice child' sat in his armchair nearly all day long, and I think it is only a handful of year since we had a full on relationship - but he clearly does not feel any of that now. I sadly remember the last time we were, frankly, intimate, and he said " Ugh, messy!" - I felt so insulted, but now I know it was the child in his eyes - and I wonder 'what happened?'

If only he would hold my hand sometimes it would make me feel better.

As it is I feel like a benevolent housekeeper - I did not see that coming.........

Oh my darling, thank you. Telling us this eases that loneliness in us. I have to hold my OH hand and sometimes he will press mine in response. Yes, I do understand about the benevolent housekeeper. I wasn't quite so benevolent sometimes, I'm afraid ... Thank you.

 

[kindred]

Hello Maryjoan,
My husband is very affectionate now more than he was at home. He holds my hand and kisses me but the down side is that he does that to everyone. There is a lady at the home who I call wife no3. When their 'romance' started it stunned me, you really don't expect to walk in and find your husband cuddled up to another woman. However, I just accept it now and when I go to the home in the mornings I always tell her that I just going to tidy him up and I'll bring him back, which I do.
They always embrace and then sit holding hands and looking at each other. The only upside to this story that one day when the three of us were in the lounge a visitor asked me if they were my mum and dad, it caused a lot of amusement when I told them that it was my husband and his girl friend.
What wonderful lives we lead.
Kathy xxx

Kathy, Maryjoan, oh my dears. How on earth do our minds cope with all this?? So good to hear from you.

 

[PalSal]

Hello Maryjoan,
My husband is very affectionate now more than he was at home. He holds my hand and kisses me but the down side is that he does that to everyone. There is a lady at the home who I call wife no3. When their 'romance' started it stunned me, you really don't expect to walk in and find your husband cuddled up to another woman. However, I just accept it now and when I go to the home in the mornings I always tell her that I just going to tidy him up and I'll bring him back, which I do.
They always embrace and then sit holding hands and looking at each other. The only upside to this story that one day when the three of us were in the lounge a visitor asked me if they were my mum and dad, it caused a lot of amusement when I told them that it was my husband and his girl friend.
What wonderful lives we lead.
Kathy xxx

Wow Kathy. That is similar to that movie Away from Her with Julie Christy. You are wonderful to accept this. I would be in someways very sad and in other ways relieved. But what your post has done for me, is to remind me to be physically affectionate to OH. I am so busy being the caregiver doing all the jobs and life functions I rarely offer him affection. (and as I have said before I am not always as kind as I should be) I get my cuddles and physical affection from our little grandbabies, that satifies my needs for now. But I should try harder to be kind and loving to him. Thanks for this post.

 

[maryjoan]

Wow Kathy. That is similar to that movie Away from Her with Julie Christy. You are wonderful to accept this. I would be in someways very sad and in other ways relieved. But what your post has done for me, is to remind me to be physically affectionate to OH. I am so busy being the caregiver doing all the jobs and life functions I rarely offer him affection. (and as I have said before I am not always as kind as I should be) I get my cuddles and physical affection from our little grandbabies, that satifies my needs for now. But I should try harder to be kind and loving to him. Thanks for this post.

I suppose somewhere, we can include our OH's with the love we give our grand children. 'Granddad' loves my little grandchildren so much - and listens to their chatter avidly, and joins in for a while, gets tired and goes to sit in his chair.....

My heart fills with love for everyone when Little Jack toddles in, marches straight up to OH, waves wildly and shouts 'Hello, Grandad!' It's like 'Hey, Grandad, I am here and I want to talk to you!' bless his little soul - he isn't even two and a half.
Funny, he calls OH 'Grandad' but completely off his own bat calls me just by my christian name - it's quite hilarious. Don't we just love them all for the joy they bring...?

 

[marionq]

Kathy, I'm 74 and my husband is 85 so the age differences are similar. At the moment he is in respite but usually he's at home with me and goes to daycare. The main difference is that he was not controlling and I am very independent normally.

Two things strike me. Your daughter is probably right that you have to get out there and meet people and join things but the advice you've been given about considering anti depressants or counsellors may be necessary to give you the courage to do that. The other important change is to wean yourself away from a husband who no longer needs you to be there every day. Try every second or third day to start with.

I don't know where you live but I am great believer in looking up the "What's On" for the local area. I can't often use it when I'm looking after John but when he was still mobile we went on Health Walks, Alzheimers groups, local shows, lunch time theatre groups........ In short anything and everything to get out into the community. The result is that even when he isnt with me people stop me to ask how he is and how I am. Now in Glasgow we talk a lot to complete strangers but I reckon that in most places folk like a chat.

As regards taking ill when you are home alone then a community alert/alarm may comfort you. I pay around £30 a month for that service and have only used it once. TBH I keep it for the reasons you mention rather than for John. He wouldn't have a clue what to if I were ill.

This post is now long enough but you keep posting and letting us know how you face this challenge. You can do it.

 

[Unhappy15]

Wow Kathy. That is similar to that movie Away from Her with Julie Christy. You are wonderful to accept this. I would be in someways very sad and in other ways relieved. But what your post has done for me, is to remind me to be physically affectionate to OH. I am so busy being the caregiver doing all the jobs and life functions I rarely offer him affection. (and as I have said before I am not always as kind as I should be) I get my cuddles and physical affection from our little grandbabies, that satifies my needs for now. But I should try harder to be kind and loving to him. Thanks for this post.

Hello PalSal, thank you for your kind words. It sounds as though your husband is still at home,believe me if I was still caring for my OH I wouldn't be so understanding. What I am glad about is that when I leave the home he has someone to sit with and hold hands. I was not at all happy at first but then I have accepted that this man is not the man I married and at this stage I would rather he had some comfort than just sitting on his own, perhaps that helps me when the guilt monster comes calling.
Kathy xx

 

[Unhappy15]

Kathy, I'm 74 and my husband is 85 so the age differences are similar. At the moment he is in respite but usually he's at home with me and goes to daycare. The main difference is that he was not controlling and I am very independent normally.

Two things strike me. Your daughter is probably right that you have to get out there and meet people and join things but the advice you've been given about considering anti depressants or counsellors may be necessary to give you the courage to do that. The other important change is to wean yourself away from a husband who no longer needs you to be there every day. Try every second or third day to start with.

I don't know where you live but I am great believer in looking up the "What's On" for the local area. I can't often use it when I'm looking after John but when he was still mobile we went on Health Walks, Alzheimers groups, local shows, lunch time theatre groups........ In short anything and everything to get out into the community. The result is that even when he isnt with me people stop me to ask how he is and how I am. Now in Glasgow we talk a lot to complete strangers but I reckon that in most places folk like a chat.

As regards taking ill when you are home alone then a community alert/alarm may comfort you. I pay around £30 a month for that service and have only used it once. TBH I keep it for the reasons you mention rather than for John. He wouldn't have a clue what to if I were ill.

This post is now long enough but you keep posting and letting us know how you face this challenge. You can do it.

 

[Unhappy15]

Hello Marionq,
Many thanks for the encouragement, I know I have to change otherwise I dread to think what will happen to me, its just getting yourself in the right frame of mind. Regarding visits to the home, I know I must start taking time away, even I question myself, it's my obsession rather than his need but 39 years of conditioning is a hard habit to break - he always had to be put first.
Kathy xxx

 

[kindred]

Hello Marionq,
Many thanks for the encouragement, I know I have to change otherwise I dread to think what will happen to me, its just getting yourself in the right frame of mind. Regarding visits to the home, I know I must start taking time away, even I question myself, it's my obsession rather than his need but 39 years of conditioning is a hard habit to break - he always had to be put first.
Kathy xxx

Understood, Kathy. Listen, sometimes, like today, I don't spend quite so long there,I am there for about hour and a half rather than two or three. Is something like that possible? And you do know I understand. I find it almost impossible to put myself first, I so understand, but it is about our mental welfare really. Lovely to read your post, thank you. I am just off to my little church group, five elderly ladies and the vicar. Who makes the tea! Geraldinexxxand that group is the height of my fun in the week ...