Is this normal?

[Unhappy15]

Hello to you all,
I haven't posted for some time but I would just like some advice from anyone who is in this situation.
My husband who is 85 has advanced mixed dementia, he seldom speaks, has to be fed and his mobility is now quite limited. He has been in care now for over four years.
I visit him every day and until recently he always smiled and I talked to him but the illness seems to have progressed to the point when I go in most days now there seems little sign of recognition, just a 'stone face.'
This has left me feeling alone and resentful, he is 12 years older than me and I have for the last ten years been tied to his various illnesses. I know he can't help it and he would in no way want to be in the situation he is in but neither do I.
I hate having to be responsible for everthing, the constant worry about the fees, so far I have spent £218000 on his care. I worry what will happen to me if I need care, there wont be anything left for me.
What makes all of this worse is that I just cannot remember life before dementia, I remember him at 45 when I met him and as he is now but the 38 years we were married have disappeared.
I really find this troubling, I have gone through all the stages of grief and despair and now it's just as though I'm living in void, I obviously can't go back but in the present situation going forward is not an option.
Is this numbness another stage of acceptance and letting go?
Kathy

 

[karaokePete]

I am not in this situation yet but have read many accounts similar to yours. I think it is normal.

I wish you the strength you need now and hope I too will be strong when it's my turn.

Please keep posting as you will get support here. Everyone will understand your situation.

 

[Unhappy15]

Thank you Pete your kind words mean a lot.
Without TP where do you go to get advice but I suppose it's only when you have experienced what this awful illness throws at both of you do you really understand what it's like.
I really resent the lack of help for us that are left dealing with it all, nobody and that includes family really want to know.
They all seem to think that when a person enter care that's the end of the problem but it isn't a whole new set problems and emotions are to be faced and it just seems never ending.
Thank you again Pete
Kathy

 

[Canadian Joanne]

I think the numbness is definitely part of what we carers go through. I remember feeling rather emotionless when visiting my mother during her last couple of years. It was a duty, a chore, something I had to do. In reality, in retrospect I think it was how I was protecting myself.

 

[Philbo]

Hi @Unhappy15

I can empathise with your situation. Mine has not been exactly the same as yours but I have gone through 6 years of various stages of despair and emptiness.

I was able to care for my wife these last 6 years until she needed nursing home care last September. She sadly passed away 7 weeks ago, aged just 69.

I remember, back at the start, reading an article where a wife described her sadness at ceasing to be a wife and becoming a carer.

That has always struck a chord with me and I tried desperately hard not to resent what life was dishing up to me. It wasn't her fault, bless her, but certainly not mine either.

I am now in another void, now that she has gone and and I only have myself to think about. I am surrounded by caring lovely friends and family yet feel so alone. I am determined though, to seize every opportunity to get on with what's left of my life (sodding covid-19 permitting).

I sincerely hope that you can find a way to look forward to rebuilding your own life, piece by piece. As you have said yourself, your dear husband would not have wanted you to be in this situation.

I wish you well.
Phil

 

[Shedrech]

hi @Unhappy15
I just want to pick up on one of your, wholly understandable, worries, the finances ... you are right to be concerned about your own situation, as none of us know what time may bring
your husband's care should be paid for from his funds only ie savings/assets in his name only, half any shared savings (not your home), his state pension, Attendance Allowance and half any private pension (the other half he can hand over to you, and any financial assessment should assume this happens) ... ie NONE of your income and savings
it may sound mercenary to suggest you keep your money totally separate, but it isn't because you need your money for your own present and future

I too think the numbness you describe is a means of self preservation ... we care for our loved one for so long that actually constantly and continually feeling the sadness, grief, anger, frustration and all the other emotions involved would just wear us out and we need to keep going ...
same for the lack of remembering life before ... it would seem comforting to have those lovely memories to the fore; actually it can be that this just adds to the sadness ... instead living in the now may mean we're not constantly comparing and maybe that's a coping/survival strategy
I do know that over the year since my dad's death, I have gradually put his life, and my mum's, into a more positive perspective, reclaiming life before dementia ... I have teary moments (rarely 'allowed' tears before; I can now without having to then quell them before I go visit) and lots of smiles thinking of how much they both gave me that I treasure

sorry, rambling, will stop

 

[White Rose]

Hello to you all,
I haven't posted for some time but I would just like some advice from anyone who is in this situation.
My husband who is 85 has advanced mixed dementia, he seldom speaks, has to be fed and his mobility is now quite limited. He has been in care now for over four years.
I visit him every day and until recently he always smiled and I talked to him but the illness seems to have progressed to the point when I go in most days now there seems little sign of recognition, just a 'stone face.'
This has left me feeling alone and resentful, he is 12 years older than me and I have for the last ten years been tied to his various illnesses. I know he can't help it and he would in no way want to be in the situation he is in but neither do I.
I hate having to be responsible for everthing, the constant worry about the fees, so far I have spent £218000 on his care. I worry what will happen to me if I need care, there wont be anything left for me.
What makes all of this worse is that I just cannot remember life before dementia, I remember him at 45 when I met him and as he is now but the 38 years we were married have disappeared.
I really find this troubling, I have gone through all the stages of grief and despair and now it's just as though I'm living in void, I obviously can't go back but in the present situation going forward is not an option.
Is this numbness another stage of acceptance and letting go?
Kathy

I would say what you've been going through is normal Kathy, I too have been through a huge range of emotions in the 4 + years since my partner was diagnosed with Alzheimer's. I do try consciously to remember life before dementia, looking at photos helps, though sometimes I wonder was that really us! The numbness you describe is what I call resignation, that's how I am now - I think we can't keep going on that roller coaster of emotions so we end up with acceptance that this is how it is and nothing is going to change for the better, it's heartbreaking. Re your finances, perhaps you need to get some advice, there's probably something on the Alzheimer's website or you could see a financial adviser, you do need to make sure there is money left for you.

 

[HilsK]

Thank you for posting Kathy. It is good to hear you voice your emotions as they are ones I feel too although my husband is still living at our home. His conditioned has deteriorated over the last couple of months as has his mobility. I too have been his Carer since 2008 when he had an associated stroke and am much younger than he is. I often feel so resentful of all the time and energy I expend on being his Carer. and of course that makes me feel guilty ...

That numbness you mention .. I thought was just 'me' .. and I thought it may be a way of avoiding anger .. And I do feel so angry .. but who at ? Have you spoken to Age UK about the financial side? I found them very well informed and very helpful.

Wishing you well

 

[Schindler88]

Hello Kathy
It is not often that I read someone’s experience that is almost the same as my own but I think we are twins in this. My husband is 75, 10 years older than me and I have been coping , on my own, with the mountain of responsibility that has come my way, since diagnosis in 2015. He used to do everything, and I have to say, I was very comfortable sailing through life playing a rather ‘traditional’ role in our life together. But this all changed, slowly and over time I had to hike up a very steep learning curve, and I am still not at the top. My husband, like yours, is now in a care home, unable to speak and mobility being seriously affected at this stage. I too have to figure out how to come up with the hefty care home fees, visiting every day although recently banned because of virus protection. In spite of the sadness in all this, my thoughts and memories of our life together are snapshots of truly happy times and the wonderful togetherness that we had for the same 38 years. I think this will come back for you in time. At the start of all this, my social worker advised keeping his money separate from mine so there is clarity when claiming any benefits he may be entitled to. Thoughts to you in your own journey through this sad time.

 

[Clarice cliff]

Don't feel bad about being angry. My husband is 89,I am twenty years younger and his third wife. He has always
been a person who wanted his independence and has been quite selfish in getting it. He was a great walker and often had days on his own doing this.
I had cancer treatment last year and had to rely on my sister for help. I now suffer from some side effects of chemo and have days when I feel exhausted yet I have to carry on and care for him. I do everything yet am told I do nothing and am followed about ,especially in the garden being told not to do this or that.
So of course I feel angry. Sometimes I shout,especially when I'm kept awake at night and I feel exhausted. I'm human! I feel suffocated ,resentful and wonder if I will ever be able to do what I went to do again. Then I feel sad and guilty for feeling like this.
I'm sure every carer has felt like this at some point unless they're a saint.
Read the book The Selfish Pig's Guide to Caring by Hugh Marriott it will make you feel better.
Stay strong there Are a lot of us out here who feel just the same.

 

[Unhappy15]

Hello everyone,
Thank you for the understanding replies, it helps to know that this feeling of being 'separate' from the situation is not as unfeeling and abnormal as I thought it was.
I do appreciate the financial advice Shedrech, but we have always had separate finances. This was a second marriage for both of us and after we moved in together it was made perfectly clear that I was not going to be given financial support in any way, so I have always worked. In fact although we moved into the house together he would never have it in joint ownership even though he paid the mortgage and I paid every other bill. Life has always been 'Joe's way or no way.'
However, he has always been very astute with his investments so care home fees are not pressing at the moment but I have to make sure that I monitor his investments to cover the fees. That of course adds to the anger, I feel that all the responsibility is mine and even if I outlive him there is probate to be gone through when he could have made life simpler but that would mean I would have to be treated as an equal.
Separation gives you time to think, perhaps too much time.
How is it that you can love someone but hate what they do. I do wonder, in retrospect, how I accepted it all.
The care home has been in lockdown now for three weeks, I phone but obviously am not allowed to visit and given the news that it may continue for another two months leaves me wondering what the outcome will be.
I am sorry for the long post but TP is the one place where I feel free to speak and not be judged.
Thank you all and stay safe in these difficult times.
Kathy

 

[White Rose]

That's the nice thing @Unhappy15, you can write what you like on here. I'm in the same boat as as you and some who've replied to your post, my partner is 20 years older than me! He was very secretive about his income and I had no idea how much he had and which companies it came from until I had to take over - it was a lot of work to sort it all out get addresses changed because we'd moved house, track all the bills, get rid of stuff that he was paying for and didn't need, such as his eBay account, etc. I still haven't registered the POA with all his pension providers, he has 4 pensions. Like you, we lived in his house and it was never put in joint names. I've always worked as well and had my own expenses so the last 4 years have been pretty stressful, especially with two house moves! He's still living at home, don't know if/when it will be time for him to go into a care home, some days it's fine and I can manage, some days I want to give up. But I'm glad to have my own separate expenses and when the time comes and he's in a care home he has enough funds to pay for it and I'll be able to revert to managing my own finances and my own life and there will be a whole lot less to do! Something to be grateful for because so many people are in a very much more difficult situation.
Re the probate - assuming you have a POA there are solicitors who will do all that for you if you have the money to pay for it. I organised it with the same company who did the POA, I didn't want any questions from his children so thought if it's all done by solicitors everything is open and I can't be accused of anything!!

 

[Chrystle]

Would just like to say that as a result of reading this thread I bought the Selfish Pig mentioned by Clarice Cliff above - thank you Clarice! - and thought it excellent, one of the best books on caring (author’s partner does not have dementia, but virtually every aspect of book very relevant) I have read. - and yes, it does leave you feeling better.

 

[Mustang66]

Hi @Unhappy15

I can empathise with your situation. Mine has not been exactly the same as yours but I have gone through 6 years of various stages of despair and emptiness.

I was able to care for my wife these last 6 years until she needed nursing home care last September. She sadly passed away 7 weeks ago, aged just 69.

I remember, back at the start, reading an article where a wife described her sadness at ceasing to be a wife and becoming a carer.

That has always struck a chord with me and I tried desperately hard not to resent what life was dishing up to me. It wasn't her fault, bless her, but certainly not mine either.

I am now in another void, now that she has gone and and I only have myself to think about. I am surrounded by caring lovely friends and family yet feel so alone. I am determined though, to seize every opportunity to get on with what's left of my life (sodding covid-19 permitting).

I sincerely hope that you can find a way to look forward to rebuilding your own life, piece by piece. As you have said yourself, your dear husband would not have wanted you to be in this situation.

I wish you well.
Phil

I can really relate to the words 'ceased to be a wife and become a carer', so many emotions that you have to deal with, accepting of how life would now be for the both of us was tough, for me it was acceptance that made me stronger, we are now four years in
It seems we constantly grieve, for the person we are losing & then when they leave us
Hopefully your friends & family will become a great help to you when you feel ready