Hi there. I’m also in Devon.
We went to the doctors today and while my wife was sitting there I spoke of the dementia journey of just over 3 years. She said that you could have been the perfect husband/carer, where we are now would have happened anyway. Don’t beat yourself up with feelings of guilt.
Ok, that’s very rational and straightforward. But when I’m at home now looking at all the stuff that makes the home, and it’s my home not our home, and she’ll never come back, it just destroys having a sensible outlook on all of this. What am I supposed to do with everything at home? It’s all meaningless.
What killed me today is as soon as I went in to the care home she said ‘where do you go’ , what am I supposed to say to that? It’s heartbreaking and it just piles guilt upon guilt.
Ok, hello neighbour which lovely part of Devon are you in?
Why are you feeling guilty? No please bear with me I’m not being facetious. What specifically do you feel guilty about?
The reason I ask is each feeling & reason of guilt has to be analysed... this sounds clinical & cold; but to understand the complex emotions you are experiencing the feelings of guilt need to be assessed properly.
Me & others telling you that these emotions are a common experience among those who have had to make the choices you have had to make obviously isn’t going to help you move forward.
You actually need to make an appointment with your own GP & ask for some mild anti depressants to help you through this emotive time. Your wife seems to have a better handle on the whole situation, that moment of clarity should be of great comfort to you. Not a reason to feel more guilt. Many on this forum would have loved to have had that moment, it should be treasured & of comfort.
In your post you focus on your feelings, that’s understandable ( they are with you 24/7) but you haven’t said how all this is effecting your daughter, or grandchildren.
All of this must be a terrible strain on her as well, she to will have conflicting emotions. Plus you said that she was having her own struggles, yet you haven’t said about the support you have given her; but you have said that you don’t feel that your family understand what you are going through.
As a Mum & wife, I’m also a daughter of two parents who have dementia. Believe me it’s soul destroying, but as a mother I am still wanted by my adult children to be part of their lives; & have a maternal drive still to be a mother to them. Your wife still has that strong maternal need, & you as the father now needs to step up into that roll to some degree.
Your wife asks where do you go? It’s a simple question but complex in it’s possible meaning, have you asked if if there is anything she would like you to get for her. Item of shopping? Face cream, make up, hand cream. These are things my Mum still asks for & loves the pick me up they bring. It might not be the question that you interpret, your own emotions are excluding any other possibility other than your first thought.
Please don’t think I’m being abrupt or not understanding the grief you feel at this moment in time, but you have a family, grandchildren, a lovely home which was created with love by yourself & your wife, yet you only see the negative. How would your wife have responded to this before her dementia ?
Cross, insulted & desperately wanting you to see the positives in life & what you achieved together. You married for better or worse, you’ve had the better & now sadly the worst has arrived. Bluntly - are you going to write off an obviously loving marriage & life time achievements because of dementia?
Your daughter is struggling, I expect her husband/ partner/ friends are doing their best to help your daughter come to terms with everything; but where are you for her?
Please let me put this in context.
I’m adopted & my biological mother who I’d known & loved for 20 years became more unwell & passed away last year. Her husband wouldn’t see what was infront of him & when my biological Mum passed last year he didn’t deal with things well shall we say. Everything was done his way, no consideration for others emotions or feelings. His own children struggle with having a relationship with him. I did everything I could to support him, but at no point did he acknowledge my grief or emotions. His behaviour hasn’t changed infact it’s become more exaggerated., at no point does he consider his children or myself. Yes we are adults - but that was still my Mum the person who gave birth to me, loved me enough to carry me through pregnancy even though she knew she would have to give me up, the person who always loved me & wanted & hoped that one day I would find her; & I did so to lose the person who made the ultimate sacrifice for my benefit tears at your soul.
I cannot for the love of me understand his rejection of not only his own children but myself., the only child who was adored by the woman he called his soulmate. No matter how much I’ve supported, cooked, cleaned, tidied, phoned, texted, messaged he has not reciprocated or attempted to. He says his life is over without his soul mate my biological Mum, but he has moved on; & now lives in another lady’s home with her. He previously talked about how was he meant to go on without my mum, what was the point, circling around & around spiralling in his grief, not appreciating others pain & loss, only his own.
Now I don’t expect a return phone call to my messages, or him to think about anyone else other than himself. He’s not going to suddenly realise that being married means that you pick up the pieces of life your partner has dropped & continue where your loved one can no longer.
Please don’t be like my biological mums husband. I can see it’s an easy path to fall into; but it’s your daughter, your grandchildren, a tangible part of your love of your wife.
If my husband ever put my children on my through this experience I would be furious with him! Seriously I am writing a living will I feel that strongly about it. I have lived through my adoptive mothers parents dementia it tore her apart & she didn’t deal with it well. To then have to go through dementia in both adoptive parents & see the effect on my own children I have made hard decisions for my own future care & my husbands.
As I said before , in previous posts- you are a Dad, a grandfather etc, many do not have that precious gift in their life.
Stop looking at what you have lost only, look at also what you have & you will begin to see that’s the point of your lovely home, items in your home, it’s impregnated in the very paint & paper in a family home. It always will be a family home that is it’s history a history that you & your wife created. You cannot now rewrite that history, just find a path forward. That’s what you should be doing & what any loving person would want for their loved one.
Apologies, if you feel this is insensitive.
I hope somewhere in these words something might strike a note with you, & help you find your path forward.