Dementia’s journey

[Dutchman]

You are being way too hard on yourself. We all know how traumatic it is looking after PWD is. Please feel reassured that most probably you did the best that you were able to always. Don't doubt yourself. Xx

Thank you. You’re right of course but in a strange way judging myself this way helps to make some sense of it all, as if my behaviour became a cause.

I know it’s wrong but I just want to have some form of resolution, something to blame that makes sense of the dementia and effects.,

Dementia is the one condition that does this to people. Your nearest friend, love one, companion for years becomes a stranger and you are a stranger to them. And, of course, it just gets worse until your world is turned upside down.

 

[Chizz]

I'm sorry @Dutchman but I can't agree with you.
You said that you want "something to blame that makes sense of dementia and effects"
Apart from possibly inherited genes in the DNA, and the way life was lived, the personal body chemistry of a PWD, there is nothing to blame and so, in my humble view trying to blame something or trying to find something to blame makes no sense and thus can't be a resolution.
You'll have to find some other form of acceptance of the position in your mind, if you wish to reach some peace.
I'm sorry if my views upset you. No upset intended.

 

[kindred]

Dutchman, I dont Know if you remember me, but I’ve been around for ages and always read your posts.
I often feel guilty too and read old cards that Keith sent me, anything to prove he loved me and I was a kind person. This situation does this to us. We didn’t cause this, we really didn’t. We went through hell and most of the time did the best we could.
With love, kindredxx

 

[Dutchman]

I'm sorry @Dutchman but I can't agree with you.
You said that you want "something to blame that makes sense of dementia and effects"
Apart from possibly inherited genes in the DNA, and the way life was lived, the personal body chemistry of a PWD, there is nothing to blame and so, in my humble view trying to blame something or trying to find something to blame makes no sense and thus can't be a resolution.
You'll have to find some other form of acceptance of the position in your mind, if you wish to reach some peace.
I'm sorry if my views upset you. No upset intended.

No, Fully understood and appreciated. I’m trying hard to understand that I’m too judgmental about myself but it’s probably part of my nature.

On your own there is little opportunity to sit with someone who understands and can help. Our Forum is so valuable as the alternative

PX

 

[Dutchman]

Dutchman, I dont Know if you remember me, but I’ve been around for ages and always read your posts.
I often feel guilty too and read old cards that Keith sent me, anything to prove he loved me and I was a kind person. This situation does this to us. We didn’t cause this, we really didn’t. We went through hell and most of the time did the best we could.
With love, kindredxx

Hello kindred. Like you I often read old cards, look at past diaries, try to pin down any moments of love and affection. Dementia changed Bridget from a loving and affectionate person into a stranger who was irritated and harsh with me all the time. The comfort I take is in her care home she was at last content and, as far as I could tell, happy.

We did our best. PX

 

[Banjomansmate]

I think I did the best I could to look after The Banjoman during his time with dementia, while still keeping myself going. OK, maybe I could have done some things better but I knew I would need to continue my life after he was gone, so I set some limits on what I would commit to as I had my own family and animals to think of too.
Now I deliberately try to forget that time and do my best to remember the good times before dementia wheedled its way into our lives. I think of the music he introduced me to and the things we did together. I have no interest in singing or playing with anybody else because we did it together but I can still remember the shows we did or supporting him in the music he played. I think of the fun times and keep them in the front of my memory, after all he made me happy and I’m sure I did the same for him.
Your Bridget made you happy for many years until dementia raised its ugly head, why let it continue winning by dwelling on the pain it brought to your life? Let Bridget’s memory bring you joy, just as she did when she was fit and well. If living in the past makes you smile then spend time back there in your mind and stop torturing yourself by only thinking of the things you could or should have done!

 

[Dutchman]

I think I did the best I could to look after The Banjoman during his time with dementia, while still keeping myself going. OK, maybe I could have done some things better but I knew I would need to continue my life after he was gone, so I set some limits on what I would commit to as I had my own family and animals to think of too.
Now I deliberately try to forget that time and do my best to remember the good times before dementia wheedled its way into our lives. I think of the music he introduced me to and the things we did together. I have no interest in singing or playing with anybody else because we did it together but I can still remember the shows we did or supporting him in the music he played. I think of the fun times and keep them in the front of my memory, after all he made me happy and I’m sure I did the same for him.
Your Bridget made you happy for many years until dementia raised its ugly head, why let it continue winning by dwelling on the pain it brought to your life? Let Bridget’s memory bring you joy, just as she did when she was fit and well. If living in the past makes you smile then spend time back there in your mind and stop torturing yourself by only thinking of the things you could or should have done!

Thank you for your well considered reply. I appreciate all the good advice I receive and know that deep down I did my best in the circumstances.

Ive said this many times but it’s worth repeating that dementia is like no other condition. It was cruel and relentless to both Bridget and myself. It destroyed a good relationship and left me a stranger to her.

With the best will in the world I couldn’t help her in the end and she had to be professionally looked after. That moment she left the house I knew she’d never return and a wife of 30 years was totally cared for by someone else. Fortunately the home was brilliant and for four years ( and during Covid time) she found peace. I know now that was the only gift I could give her , but it was so very hard.

Thanks again. PX

 

[Knitandpurl]

Sending you hugs. We never stop missing our Soul Mates, and the other major Loves of our lives (parents, friends, even pets). We just have to slowly get used to the Empty Space they leave behind. But the people we love don’t want us to be miserable, so please try to stop feeling guilty when something/anything makes you smile, instead know that Bridget would be happy for you, and instead try and find at least 3 things in every day that have been good, however small .

 

[Dutchman]

Hello @Andy54. Im writing to you as there are hardly any men posting on the forum and it would be good to find out how you are these days.

I continue to struggle with grief as you know and find I miss terribly the visits to Bridget’s care home which was my main routine in the week. The cancer treatment as well has kept me away but they say I’m very welcome to come in any time. I’d like that.

Please in the touch. P

 

[Dutchman]

I’ve read that it is common to know that the person has gone and simultaneously harbour the belief that they will walk through the door again. Although I know that Bridget has died I often feel that if I drive over to her care home I’ll see her once again sitting in the sun lounge.

Our brain has to accept that in normal times our loved ones will return from going somewhere otherwise it would be unbearable if we thought they'd never come back. I suppose after 30 odd years of always returning, accepting that she’s just not in the world anymore and won’t return is difficult to imagine.
PX

 

[maisiecat]

Hi @Dutchman , I think for those of us who have or who have had our loved ones in care homes that the care home provides us with support and a framework to our week.
When I visit my husband there are friendly smiles and greetings,little chats and stories of what he has been doing. I don't go on a Sunday as i don't drive and public transport is negligible. On Sunday my daughter phones me at 8pm and that is usually the first person I have spoken to all day.
Our journey is hard and painful and full of grief but we mustn't let it take us away from who our person was and what we happiness we experienced together.

 

[Dutchman]

Hi @Dutchman , I think for those of us who have or who have had our loved ones in care homes that the care home provides us with support and a framework to our week.
When I visit my husband there are friendly smiles and greetings,little chats and stories of what he has been doing. I don't go on a Sunday as i don't drive and public transport is negligible. On Sunday my daughter phones me at 8pm and that is usually the first person I have spoken to all day.
Our journey is hard and painful and full of grief but we mustn't let it take us away from who our person was and what we happiness we experienced together.

Thank you for your reply. You’re absolutely right that my visits to her home provided a much needed framework to my week. Even not knowing me as Peter she and I had a easy relationship going.

I’m trying to remember the good times but bad times stick like Velcro because they are the most vivid memories.

 

[Dutchman]

Hi everyone. I have regrets as you’ve all read in my posts and , I guess, we all have in different ways.

I wonder why sometimes why I didn’t spend more time with Bridget at her bedside after she died. They phoned to let me know, I went to the hospital room on my own, with no support from family or hospital staff, and there she is not breathing after 30 odd years of marriage.

Death isn’t like the movies. She looked awful. I spent maybe 10 minutes there and i wish now I’d spent longer just talking, holding her, because once i left i was never to see her body again.

Just one more regret. I suppose what I’m saying is try to do stuff at the time so that the room for regrets gets less.

 

[DeeCee7]

We all have regrets @Dutchman, but we simply cannot live our lives based on “what ifs” and “if onlys”. Seeing your wife like that must have been a very sad experience, and with no support. But you were there, and bore solitary witness for ten minutes, which must have seemed an eternity at the time. I am sure your Bridget would say to you, that it’s time now to give yourself a bit of the love and care you gave her.

 

[Dutchman]

We all have regrets @Dutchman, but we simply cannot live our lives based on “what ifs” and “if onlys”. Seeing your wife like that must have been a very sad experience, and with no support. But you were there, and bore solitary witness for ten minutes, which must have seemed an eternity at the time. I am sure your Bridget would say to you, that it’s time now to give yourself a bit of the love and care you gave her.

Thank you❤️

 

[maisiecat]

Hi @Dutchman , I wish i could give you a hug for all your pain. I am seeing a counsellor and although its not for everyone its definitely helped me get "my ducks in a row". There may be a bereavment group in your area. I think it can help when we realise that these feelings are common.

 

[Melles Belles]

Life is full of regrets @Dutchman . You spent so many hours with Bridget at the care home when she was alive. That’s what counts, even if she wasn’t always sure that you were her DH but she knew you were someone special to her. The hours while she was alive are the important ones.
Sorry you’re still struggling so much with your grief but pleased that your treatment is finished.

 

[Dutchman]

Thank you for your kind reply @Melles Belles. I’ve just visited the care home and spoken to some of the residents and staff. The staff really miss Bridget and I needed a bit of courage to go in for the first since the funeral.

I’m thinking of going in once a week to keep in touch as I think it will do me good. Also, many there have few or no visits. Anyway, we’ll see.

 

[jennifer1967]

Thank you for your kind reply. I’ve just visited the care home and spoken to some of the residents and staff. The staff really miss Bridget and I needed a bit of courage to go in for the first since the funeral.

I’m thinking of going in once a week to keep in touch as I think it will do me good. Also, many there have few or no visits. Anyway, we’ll see.

may give you some routine as well feeling good by volunteering

 

[HardToLetGo]

Just to let you all know I’ve just walked away from the hospital after finishing my last chemotherapy session. Of course I’m relieved but careful not to get too comfortable with it as I’ve still got a PET scan to do to determine if it really has all gone.

Anyway, I’m remaining positive. Bridget would have understood my cancer journey and the ups and downs and in normal times would have cared for me completely. I spared her that. That’s what I miss, seeing her, having someone who loves you who cares for you no matter what.

I’ve done it on my own mostly so pat on the back for me👏

Well done, it takes alot to cope with the treatment, it's great when it ends but the worry lingers I found, be well and gentle on yourself.