I feel guilty

[Janebee]

Hello. This is the first time I've posted on here although have read many comments. My husband is 56 and was diagnosed with early AD (PCA) about 4 months ago. He has had to give up driving and hasn't worked since March. He has struggled to hold down a job for the last 3 years after making silly mistakes and forgetting how to do basic things he's done for the last 30 years. The GP put it down to depression about a year ago but I thought it was more than that and pushed for a brain scan which is how we eventually got the diagnosis.

My guilt comes from the fact that I read all these comments from loving wives and husbands talking about their partners .... however my relationship with my husband has been almost non-existent for many years but lack of finances to allow me to change the situation has meant we've stayed together and now just really live in the same house.

Does anybody else out there wonder how they're going to cope with a partner who they don't love and who has this disease? I try very hard not to be frustrated with him but sometimes I can't help myself and then feel awful afterwards.
I'd really like to hear from somebody who feels they're in the same boat.

 

[Lindy50]

Hello Janebee and welcome to TP

I can't answer you directly, as I care for my mum. However, like you, I do sometimes read posts by spouses ( and other relatives) and I really wonder how they do what they do.

I am sure you are not alone in your feelings and I hope someone else will be along soon to share their experiences.

I just wanted to welcome you and send you a big (((hug)))

Lindy xx

 

[Lawson58]

Hi Janebee,

Like you, I also read all the posts written by people who manage to still maintain their loving relationships and have the utmost admiration for them.

And also like you, the only relationship I have with my OH is as his carer. For years before we got his diagnosis, he was in total denial that there was a problem and I had to battle with all his growing memory problems, the confusion, behavioral issues etc but the worst was the paranoia. Everything was my fault and it was me that had the problems, I was always criticizing him and so it went on and on, finally destroying everything that had been special between us.

Like you, we have remained together for financial reasons and that decision was made prior to getting his diagnosis. Believe me, I fully understand your frustrations and I suspect that you also experience anger and resentment at having to give up some happy years because of dementia. My guess is that you at times also suffer some level of depression, wondering how long you will have to devote to caring for a man you no longer have feelings for.

The really hard bit for you is that you are still quite young. You often see posts on TP commenting that it is pretty near impossible to care for someone properly unless you love them but that is not true and it so important that you don't sell yourself short when you see things like that. There are advantages to caring for someone when you are not so emotionally involved and it will be up to you to find what they are in your particular situation.

I find that I feel more like his nanny than his wife and that being 'one step removed' allows me to communicate with him in such a a way that he remains calm most of the time which reduces my own stress levels. I don't involve him in any of the major decisions about running the household unless I have a good idea of what he would say and if it something that suits me. That sounds a bit ruthless I suppose but he had opted out of any responsibilities long before his diagnosis so he doesn't really want to know anyway.

People will tell you you that you need to take time for yourself, that you need to look after yourself etc. All good advice but sometimes difficult to do in the reality of your situation. I have reduced my social activities a lot but have one volunteer group that I cherish and would be very reluctant to lose. Sometimes it is as little as 2-3 hours in a week, but I always come home feeling a whole better than when I went.


The first thing you need to do is to ditch the guilt. You don't owe your husband anything but have accepted your responsibilities and have made a huge commitment to him. The best piece of advice ever given to me was never to promise something you can't deliver and I am referring here to saying that you will never put him into care. That one promise is responsible for so much heartache and grief, evident on many of the posts on TP.


Keep on posting here. Things will get better at times and other times will be bad but you will cope.

I wish you strength in the days to come.

 

[Essie]

Hi Janebee, welcome to TP. Lawson has given you a better and more comprehensive answer than anybody else could I think, direct experience is always the best so I'll just comment in a different way.

You don't have to be your husband's carer. There is no law that says you do and none of us should expect that of anyone else - we each have this one life and we should never be made to feel that we have to follow a particular path to the exclusion of our own choices and wishes.

You don't say if there is other family, children, siblings etc. that you could talk to about this but please don't feel that there is one path and one path only through this. You do have choices.

 

[marionq]

I think too you need to be aware that a lot of carers who once loved their partners dearly do not love the person with dementia they now live with. What motivates individuals to do such a good job of caring is diverse depending on a multitude of things not least the family dynamics.

This is your life too and it is asking a lot to be the carer of someone you do not love and have had a poor relationship with for a long time. Do not feel guilty.

 

[Janebee]

Thank you to everybody who's replied to my post. I do have my 2 children still at home, late teen and early 20s, who are his step-children and to be honest both find him quite frustrating and not just because of his illness. I worry that living with him will push them away before they really want to leave home, although I have an incredibly close relationship with both of them. They both tell me to think about myself first. We still have 10 years left on our mortgage, and I work full time. I love my job and love being at work, and already know that there is no way I can give that up to be his full-time or even part-time carer. I do wonder how long it will be before he can't be left at home during the day on his own - he does silly things but at the moment he doesn't seem to be a danger to himself.
As well as my kids I have a handful of good friends and one in particular who is my rock. I see her regularly and can tell her anything and she won't be judgemental.
I really don't know what I'd do without her.
Anyway enough rambling for now, thanks for listening/reading .......

 

[dadneedsanswers]

Hi Jane

I have just read your post and thought it could have been written by my own mum! Although we're a few months behind you on the diagnosis front.

I've read the responses from others on this thread which are fantastic and I'm going to show these to my mum. I wanted to let you know that from a daughter's perspective, seeing their mum deal with a relationship that has become incredibly difficult, you absolutely mustn't feel any guilt. People have described this situation as worse for the primary carer (often husband or wife) on the basis that the patient is 'blissfully unaware'.

As the daughter (and the only child) I worry most about my mum. It is so important that you look after yourself and also put yourself first as much as you can - and feel entitled to do this rather than guilty!

I live and work almost 200 miles away and my dad's mother died 2 months ago after being diagnosed just 6 weeks earlier with cancer (my mum even wrote the eulogy for the funeral as my dad could not put pen to paper). She was the last surviving grandparent and although she was very elderly, I felt better knowing that she was around to offer support to both my mum and dad. My dad has a brother who lives locally but he is a 'typical man' and very hands off in terms of wanting to understand or help whatsoever. I don't expect this will change. In a nutshell - my mum feels that there is no one else to look after my dad and so she has no choice but to stay. Financially it would also be very difficult. My dad lost his job at the end of last year and at the same time we found it he'd been having an affair. We now think this might be part of his illness/behavioural changes but of course doesn't change the fact my mum is distraught and had things been different she may well have reconsidered their relationship.

Ultimately I most resent dementia for taking away my mum's youth and life plans. I am sad for my dad but he doesn't have the emotional capacity (or so it seems) to appreciate what's happening.

I am certain that you (and my mum ) are not alone in this. It is just more difficult for people to admit it publically (hence why I am writing this instead of my mum!).

PS have you considered day care for your husband? We don't have access to this as my dad hasn't been officially diagnosed however a nurse mentioned to us that there are classes and groups for patients to stimulate their mind etc during the day. Might be a good idea whilst you are at work especially if it gets to the stage where it's unsafe to leave him.

Sorry I have rambled so much! It's difficult to be succinct when there's so much going on and so much unknown...

All the best
S

Hello. This is the first time I've posted on here although have read many comments. My husband is 56 and was diagnosed with early AD (PCA) about 4 months ago. He has had to give up driving and hasn't worked since March. He has struggled to hold down a job for the last 3 years after making silly mistakes and forgetting how to do basic things he's done for the last 30 years. The GP put it down to depression about a year ago but I thought it was more than that and pushed for a brain scan which is how we eventually got the diagnosis.

My guilt comes from the fact that I read all these comments from loving wives and husbands talking about their partners .... however my relationship with my husband has been almost non-existent for many years but lack of finances to allow me to change the situation has meant we've stayed together and now just really live in the same house.

Does anybody else out there wonder how they're going to cope with a partner who they don't love and who has this disease? I try very hard not to be frustrated with him but sometimes I can't help myself and then feel awful afterwards.
I'd really like to hear from somebody who feels they're in the same boat.

 

[Janebee]

Hi S

Thanks for your message, I'm sorry to hear that you've been having to deal with some sad issues yourself recently. You don't say how old your parents are but I guess they must be a similar age to me (I'm 52) and my husband if you think my post sounded like it could have been written by your mum!

My OH isn't at the stage where a day centre is appropriate really, he can go out and about on his own perfectly happily either on his bike or by catching a bus. He walks the dogs every day and can still do a lot quite capably.

Ideally I'd like him to find a group where he can go and meet others in a similar position but that's easier said than done. Support for people in their 50s with EOA seems to be non-existent, and I don't think it would be good for him to go somewhere with people 20 to 30 years older and whose symptoms are considerably more severe, it would probably put him off ever going anywhere for support again.

I totally agree with your comment about dementia taking away your mum's youth and life plans, I feel like that too. Early 50s is no age to be having to 'care' for your OH particularly when the relationship is non-existent anyway. It's like a punishment for something bad you've done in a previous life!

Anyway thanks again for your comments, it's good to know there are others out there in the same situation.

Keep your chin up and I hope you get the diagnosis sorted out soon.
Jane

Hi Jane

I have just read your post and thought it could have been written by my own mum! Although we're a few months behind you on the diagnosis front.

I've read the responses from others on this thread which are fantastic and I'm going to show these to my mum. I wanted to let you know that from a daughter's perspective, seeing their mum deal with a relationship that has become incredibly difficult, you absolutely mustn't feel any guilt. People have described this situation as worse for the primary carer (often husband or wife) on the basis that the patient is 'blissfully unaware'.

As the daughter (and the only child) I worry most about my mum. It is so important that you look after yourself and also put yourself first as much as you can - and feel entitled to do this rather than guilty!

I live and work almost 200 miles away and my dad's mother died 2 months ago after being diagnosed just 6 weeks earlier with cancer (my mum even wrote the eulogy for the funeral as my dad could not put pen to paper). She was the last surviving grandparent and although she was very elderly, I felt better knowing that she was around to offer support to both my mum and dad. My dad has a brother who lives locally but he is a 'typical man' and very hands off in terms of wanting to understand or help whatsoever. I don't expect this will change. In a nutshell - my mum feels that there is no one else to look after my dad and so she has no choice but to stay. Financially it would also be very difficult. My dad lost his job at the end of last year and at the same time we found it he'd been having an affair. We now think this might be part of his illness/behavioural changes but of course doesn't change the fact my mum is distraught and had things been different she may well have reconsidered their relationship.

Ultimately I most resent dementia for taking away my mum's youth and life plans. I am sad for my dad but he doesn't have the emotional capacity (or so it seems) to appreciate what's happening.

I am certain that you (and my mum ) are not alone in this. It is just more difficult for people to admit it publically (hence why I am writing this instead of my mum!).

PS have you considered day care for your husband? We don't have access to this as my dad hasn't been officially diagnosed however a nurse mentioned to us that there are classes and groups for patients to stimulate their mind etc during the day. Might be a good idea whilst you are at work especially if it gets to the stage where it's unsafe to leave him.

Sorry I have rambled so much! It's difficult to be succinct when there's so much going on and so much unknown...

All the best
S

 

[kathleenr]

thank you

thank you for this post. I feel the same; husband is happy but I am not his wife any more I am carer to a bad tempered irrational person who sees it all as my fault. I am very reluctant to give up work as that's where I get my affirmation and hugs!
I feel less guilty and bad tempered after reading this. Thank you