My lovely husband of nearly 60 years died in June having suffered with dementia for six years. I was lucky that he remained calm and very kind.
I was worried that I was still so tearful after six months, but having read other comments about this, feel reassured that I’m quite normal.
I am finding it really difficult to remember him as he was before he had dementia and I’m grieving over those lost years too.
I wonder if anyone else is in this position.
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I’m so sorry for the loss of your husband, @Dingwall. If you do a search by tapping the magnifying glass, you can read posts from people who have lost loved ones to dementia. I know that @Lonelygirl1 sadly lost her husband to vascular dementia. @Pat91 also shares their experiences on this thread. Perhaps you can connect with them.
Keep reaching out - you are not alone.
Thank you very much Seaneen,
That is helpful.
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I lost my husband to dementia 2 years ago and I still am totally bereft… But I do remember him when he was well and had dignity and wasn’t confused. Like your husband he was calm and kind and accepting of his situation. Unfortunately I found it emotionally very difficult and was always in tears and we were very isolated as we were in and out of lockdown. ii is a dreadful illness and hard to watch as our loved ones become so different. You are in my thoughts. I was married for 54 years and just can’t get over the loss of him. I wish i could but i think about him all day and miss him so terribly. I find it hard to go to any place where I have been with him…even the shops because it hurts so much.
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Hello,
I really identify what you say about shops. Often I want to sit down in the middle of the shop and cry!
When I was shopping I would often buy a little treat to share but no longer. How can something so small provoke such strong emotion. I wish you well.
I lost my husband of 44 years to a rare young onset dementia 11 months ago. I was his sole cater too for 8 years in our case. He never lost his kind, gentle and accepting nature thankfully. I think I was grieving the loss due to his dementia a before he died and I thought I was prepared for his death but I absolutely wasn’t as it has turned out. Still tears every day. I am grateful that he will never have to go through the same grief though, I love him that much. I share you loss, sending hugs x
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Hello Drg,
I had been to a short bereavement group but because no one else had had the experience of caring of someone with dementia, I found I didn’t feel as if I benefitted.
However, a little WhatsApp group consisting of four of us who had met at a dementia support group just over two years ago, has been of enormous support.
The husbands of the others are all still alive but I think because we all knew each other’s husbands so well, that has made a huge difference.
So it would seem that it’s the bond created by going through the dementia stages together, that is stronger than sharing the experience of actual bereavement.
I find it so difficult to remember my lovely husband as he was.
Early onset dementia is so very cruel as it robs you of even more normal time together.
Did you go to any support groups with your husband?
I wish you well.
Hi Dingwall No we didn’t have any support really. My husband became really poorly in his last year with frequent sepsis infections and difficult to control convulsions. He was in and out of hospital so many times but I was there every day to make sure he was getting fluids and feeding him. I feel so guilty however that he was bed bound and in a nursing home for the last 8 months and that he wasn’t able to die at home. I think that is making the grief worse even though I was there every day to feed him and help with his personal care. It’s an awful disease and you have to have lived with it to really comprehend what it does to the sufferer and the carer.
My partner who was only 35 took his own life one month ago today, because he thought he had Huntington’s Disease like his dad, he could live with the corea (involuntary movement) and he could live with the behavioural changes, but he was so scared of the dementia, there is quite simply nothing as inhumane, especially as he had already watched it destroy his father. I will admit I am finding it extremely difficult to find any good in this fucking world anymore.
I just wish he had taken the test to see if he carried the faulty gene, and if he had and he was sure that was what he wanted, I would have helped him die, but he didn’t give me that option, and I am furious with him.
Hello Jonny,
I can’t begin to imagine how grim this for you. Although I can understand your anger.
I think that there are support groups for those like you who a trying to cope after suicide and I might help to share how you feel with other people in the same situation.
One month is such a short time and much too soon to be able to see anything good in life.
I hope you find comfort in friends.
Hello Drg
Please don’t feel guilty. You had clearly done so much for your husband when he was at home and in hospital.
I imagine he possibly didn’t realise where he was when he was in the home and you were able to just be with him.
The day my husband went into the nursing home was really almost worse than when he died. I didn’t really feel guilty but utterly heartbroken.
Hi Dingwall Thank you for your kind words. I hadn’t thought about whether Graeme knew where he was until you mentioned it and hope you are right. The staff in the nursing home loved him because he always had a smile for them when he was well enough. I suppose he was only in nursing care for 8 months out of 8 years of care. How long was your husband in nursing care? Was he aware?
Hello Drg,
My husband was only in the home for two months.
Similarly like your husband, mine was also really loved by the staff in the home.
We are lucky to have that.
He sort of knew it wasn’t home but actually when he was still at home, he didn’t always know it was his home.
I remember one day in the home, I had taken him to the lounge and when we went back to his room, he said home sweet home. I was so relieved and grateful.
If your Graeme was able to smile at times, I would think that shows he was not distressed.
I can imagine the relief for you at hearing his words. My husband had Primary Progressive Aphasia a rare dementia which resulted in an inability to make understandable speech after the first few years which made it hard to make out what he was thinking. It started just before he was 60. He became anxious if I wasn’t in sight. We do mourn the loss those years due to the dementia as well as the final loss don’t we?
Hello Drg,
What a particularly cruel form of dementia your husband suffered from.
And of course you were suffering too.
Do you find it difficult to remember Graeme as he was before dementia?
I find it really difficult and although photos help a bit, they don’t really capture him fully.
I don’t know where you live but I hope the sun is shining. 
Good morning Dingwall I’m in North England so still waiting for the sun to make an appearance.! Yes, I do really struggle to remember Graeme before the dementia. My mind seems to cling onto his last year when he was so poorly and ignores the 40 years when he was well or still in the early dementia stages. I have to look at old photos to remember. I wish I had more of the few video clips I have of him speaking normally but we don’t think to record things ahead of bad times do we. Maybe time will allow me to remember him when being well and not suffering. As you say we were suffering with them and still are but at least they are no longer and will never have to endure this grief in which we are left trying to find peace somehow.
Hello Drg,
Do you get very tired saying “I’m fine” all the time?
You are right about our husbands not having to endure the grief we have.
Eric used to say he hoped he would die before me as I would cope on my own.
I’m sure he was right but……… 
Hi Dingwall That rings a bell. Graeme was always saying “ I want to go before you” when he was well but of course you don’t take it seriously. Maybe he did think I would cope better but I’m not at all sure now. Absolutely I get tired of saying I’m ok all the time when inside I’m saying I don’t know if I’m going to survive this. I feel like I’m having to make them feel better. The only one I’m really frank with is my sister who used to drop everything and drive up every time Graeme was admitted to hospital with sepsis and all the other emergencies we had in his last year. Thinking of you, take care.
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Hello Drg,
You had a really horrible time up to Graeme’s death. Do you find the memories of those times are fading at all?
I hated the feeling in the first months after Eric died, that I was leaving him behind. It was unbearable.
Someone said it was good as it meant I was moving on but it felt anything but good.
That feeling is slightly less now.
Your sister sounds very kind and understanding. Lovely.
Hi Dingwall The memories of Graeme’s last year are still hard to shift from my mind however hard I try, I suppose because they were so traumatic. I don’t think by that stage he knew how ill he was or possibly where he was and I could still get a smile from him on his better days although he would fall asleep as soon as I fed him. He slept a lot which was good in a way but made me feel he was drifting away from me. In the last 3 years it was much more like looking after my child rather than my husband but the love was still there for both of us - just different. I also know he would have looked after me just the same if the roles were reversed.