A difficult time!!

[Sunseeker1977]

I am not a regular poster, but from time to time I feel so overwhelmed that I have to tell someone ... I try not to burden my family with how I feel... as they have their own issues.
I have been caring full time for my wife since 2012 and have had many ups and downs on the journey... Recently I find myself resenting her and I really don't like myself for the way I feel... endless unco-operative trips to the toilet ... washing machine in continuous use from incontinence... spending hours feeding someone who doesn't want to be fed ... trying to get her to drink through clenched teeth... not to mention the medication routine!! Add to this broken sleep every night and the picture becomes clear! I have lost all motivation for most of my hobbies and interests ... I just don't know how to break this chain! I have morning carers that get her dressed, I get sitters 8 hours a week and I get regular respite ... it used to help but now it just papers over the cracks!! We have been together over 50 years and have been married 46 ... We had a great marriage and I love her so much ... So why am I feeling so down?? I lament what we had and what we could have had... I am jealous of happy retired couples... I cant even feel enthusiastic when our grandchildren visit!!...Nothing seems to matter now and I feel that I am just drifting into oblivion!! As I write this she is sat beside me with her head between her knees, I try to sit her up but 2 minutes later she is back with head between her knees!! I sit her up again.. and on and on! I feel awful and disloyal writing this but I have to share with someone! I think it might be time for some counselling!!

 

[SeaSwallow]

You are not being disloyal @Sunseeker1977 we all need to share how we feel from time to time. From reading your post I am wondering if it might be time to consider full time residential care for your wife, that way she would have a team of people looking after her rather than a tired husband. You would still be her carer but just in a different way, looking after her interests in the home.
I also think from what you have written that it might be useful for you to speak to your doctor about how you feel at present, a short course of anti depressants might help you feel a little more positive.

 

[Jaded'n'faded]

We had a great marriage and I love her so much ... So why am I feeling so down?? I lament what we had and what we could have had... I am jealous of happy retired couples...

Anticipatory grief. You are mourning the loss of all your hopes for a long and happy old age and of your great marriage. You've realised that these things are now all gone even though your wife is still here. But as you know, no one survives dementia and there is every reason to be sad about the way things have turned out.

You may have family and some help in looking after your wife but is that enough? What about you? I think you need a proper break, even a permanent one now, as @SeaSwallow has suggested. Give it some thought. Care homes are there for a reason and you sound very tired and depressed.

 

[sapphire turner]

Sending love to all the carers having a hard time, it is such a crazy sad position to be in. Thank goodness there is always someone to listen here. Might be worth trying the GP again for yourself they can sometimes spark a new idea.

 

[Bay Tree]

I'm so, so sorry to hear how you are feeling - you sound depressed and whatever happens, a trip to your GP to discuss your own health is essential. No matter how much you love her, it isn't possible for you to change things with your wife at home - dementia has put that out of your control. You do have control over your own actions and your own life and I would agree with the others that it could be the time that you seriously consider full time care in a home. The respite and other support isn't helping you anymore so I'm not sure there is another way forward. You have obviously given so much of yourself to your wife over the years and maybe you need now to claim your life back. I understand a little bit of how you feel in that I look at my husband and I don't seem to know him anymore and all hopes and dreams of a happy fulfilling retirement have now gone and no matter what I do, I can never bring that back. You can bring back some happiness to your life and I hope you can follow the advice given to you here by others. Guilt, despair, exhaustion and happy memories of the past keep so many carers in their role, despite the terrible effects it has on them. Think about making the change so that you might enjoy time with your wife in a home, enjoy your grandchildren's visits and regain your enthusiasm for your interests.

 

[Andy54]

I am not a regular poster, but from time to time I feel so overwhelmed that I have to tell someone ... I try not to burden my family with how I feel... as they have their own issues.
I have been caring full time for my wife since 2012 and have had many ups and downs on the journey... Recently I find myself resenting her and I really don't like myself for the way I feel... endless unco-operative trips to the toilet ... washing machine in continuous use from incontinence... spending hours feeding someone who doesn't want to be fed ... trying to get her to drink through clenched teeth... not to mention the medication routine!! Add to this broken sleep every night and the picture becomes clear! I have lost all motivation for most of my hobbies and interests ... I just don't know how to break this chain! I have morning carers that get her dressed, I get sitters 8 hours a week and I get regular respite ... it used to help but now it just papers over the cracks!! We have been together over 50 years and have been married 46 ... We had a great marriage and I love her so much ... So why am I feeling so down?? I lament what we had and what we could have had... I am jealous of happy retired couples... I cant even feel enthusiastic when our grandchildren visit!!...Nothing seems to matter now and I feel that I am just drifting into oblivion!! As I write this she is sat beside me with her head between her knees, I try to sit her up but 2 minutes later she is back with head between her knees!! I sit her up again.. and on and on! I feel awful and disloyal writing this but I have to share with someone! I think it might be time for some counselling!!

What you have described is exactly the situation I was in just over 2 years ago. There comes a time when you have to accept that you simply can't provide the level of care that is required 24 hours a day, 365 days a year. I reluctantly came to the decision that I couldn't carry on and that the time had come for a care home. Not an easy decision to make and not easy to arrange at the time, took a while to find suitable placement (not helped by covid restrictions at the time). It took a while for Deb to settle into the home, and for me to, at least partly, come to terms with the decision. Now 2 years later I usually see her for a couple of hours every other day, she is much calmer, is well cared for and seems reasonably content. Although Deb no longer has any verbal communication and doesn't really know who I am or our relationship, she is quite happy to sit with me holding her hand and talking to her, a far cry from the last few months at home. For me - well I can now get an undisturbed nights sleep, I'm much less stressed though I do still worry about her and lament all that we have lost. I do often still find it hard to motivate myself to do things (still feels pointless without her) but I'm getting there slowly.

 

[Blissy]

I do so feel for you. I agree with what the others have said in that it is probably time to look at residential care. Easy to say but when you are so tired it feels like another mountain to climb. I hope you find the strength to put things in motion so that you can reclaim your life and when you visit your wife it is because you want to see her and can treasure the moments with her.

 

[Sunseeker1977]

Thank you all for your replies... I agree with most of what you are saying... I would give the same advice if I read my post!! I am good at giving advice but not as good at taking it!! I know I am probably not providing the quality of care that she might receive in full time care.. but I cant let her go!! How do you justify letting someone who is your life go into care? I feel as though it will take an illness on my part to reluctantly make it happen.... just how can I break this chain without feeling the loss... the guilt... and the emptiness that would no doubt follow? I am sure some of you faced this dilemma and found a way forward... I cant visualise what it might look like!!

 

[Sunseeker1977]

Well... my wife was in respite and was admitted to hospital with aspirated pneumonia ... she has had antibiotic treatment and has recovered .. the salt team says she should now have a puree diet!! Today the hospital told me that she is 'medically optimised' ... but we have to wait for a discharge assessment! .. apparently this can take from 2 days to over a week!! The whole episode is so impersonal ... and so very very distressing!!

 

[canary]

Hello @Sunseeker1977
Im sorry to hear about your wife, it does sound as though her dementia has progressed, but Im glad she has had a SALT assessment. Hospitals always want to assess their care needs before discharge
xx

 

[Grannie G]

I`m so sorry @Sunseeker1977

You have done so well caring at home for 11 years. I`m full of admiration for you.

I`m sorry you find the hospital diagnosis and communication impersonal. It sounds as of they are following the best procedure to help your wife. They need to be impersonal. If not they would break within a week. It doesn`t mean they don`t care.

My husband didn`t recover from aspiration pneumonia.

The distress you feel is for your dearly loved wife and many of us can identify with this having been through similar experiences. It`s as tough as anything can be.