I did not expect it to be this hard

[Kas445]

My husband died just over a month ago, in hospital. He had Parkinson’s for almost 15 years and was diagnosed with dementia 5 years ago. The last 15 months were the most difficult. He became incontinent at night and it was beginning to happen in the daytime too. He could sometimes be very difficult, almost aggressive and I was not as patient as I should have been. The change in his personality was heartbreaking. I had carers to help, but when I had to have a small operation the surgeon suggested I arrange a care home placement for respite, as I would be in plaster for a couple of weeks. It was not easy to find somewhere, but when we visited the home together, M seemed to accept it. I knew he wouldn’t like it, but assured him I would have him home again in 2 weeks. Unfortunately he fell while there, or something else happened, as when he came home he was complaining of pain. He was only home for 7 hours, when he fell a couple of times, and finally I could not get him up as the pain in his ribs was too bad. He went to hospital and it was discovered that he had broken ribs, followed by a chest infection. (I certainly complained to the Care home)

He had a final bout of aspiration pneumonia after 11 weeks in hospital. They were trying to get him moved to a community hospital, but he kept being medically unfit. There were only a few visits where he knew me and we could hug and talk with some semblance of normality. I knew where this was going and I thought I had prepared myself. I told myself this would be for the best, in so many ways.

Now he has gone and I miss him more than I would have believed possible. We were together for 57 years. I feel so guilty (for so many reasons). I feel that I should have cared more and told him that I loved him more. I now have all this freedom that I craved and it means nothing.

I know it is early days and I just have to keep putting one foot in front of the other, but I wondered if anyone else has had a similar experience. When will I stop going over and over everything and wishing I could change things.
Impossible question….!
Kas

 

[RosettaT]

Oh Kas I'm so sorry. I know you feel you could have done better but I'm sure you did everything possible and were a wonderful wife not only in the last few years but for 57 of them.
It's still early days lovely, and you are bound to be feeling raw and lost, even tho' you knew what was coming. Take one day at a time and grieve at your own pace.

Please keep posting if you need to get anything off your chest. Thinking of you.

sending (((((Hugs)))))

 

[Izzy]

How terribly sad @Kas445. So easy for me to say but you really have nothing to feel guilty about. As already said it’s very early days. Grief will take its own time. It’s good that you’ve shared here as you’ll always find understanding and support here.

 

[Grannie G]

Hello @Kas445

Aspiration pneumonia was my dread and it finally got the better of my husband too.

Please don't expect too much from yourself. Your husband will have left a big hole in your heart and a month is nothing in comparison with the loss you have experienced.

Many of us will know how you are feeling and all I can say is give yourself time and allow your grief.

This forum has a most supportive community and I hope you will feel the benefit.

 

[canary]

Hello @Kas445 , I am so sorry for your loss.
((((((((((((((((((((hugs)))))))))))))

When someone has dementia you feel you are losing them so that you think that all your grieving is done, but its not. When they pass away, even though you know it is for the best and it is a relief, you still have to go through the grieving process. People around think that you should "get over it" and "move on" in a matter of mere weeks, but it takes a lot longer than that. Be gentle with yourself and allow yourself space and time to grieve.

 

[kindred]

My husband died just over a month ago, in hospital. He had Parkinson’s for almost 15 years and was diagnosed with dementia 5 years ago. The last 15 months were the most difficult. He became incontinent at night and it was beginning to happen in the daytime too. He could sometimes be very difficult, almost aggressive and I was not as patient as I should have been. The change in his personality was heartbreaking. I had carers to help, but when I had to have a small operation the surgeon suggested I arrange a care home placement for respite, as I would be in plaster for a couple of weeks. It was not easy to find somewhere, but when we visited the home together, M seemed to accept it. I knew he wouldn’t like it, but assured him I would have him home again in 2 weeks. Unfortunately he fell while there, or something else happened, as when he came home he was complaining of pain. He was only home for 7 hours, when he fell a couple of times, and finally I could not get him up as the pain in his ribs was too bad. He went to hospital and it was discovered that he had broken ribs, followed by a chest infection. (I certainly complained to the Care home)

He had a final bout of aspiration pneumonia after 11 weeks in hospital. They were trying to get him moved to a community hospital, but he kept being medically unfit. There were only a few visits where he knew me and we could hug and talk with some semblance of normality. I knew where this was going and I thought I had prepared myself. I told myself this would be for the best, in so many ways.

Now he has gone and I miss him more than I would have believed possible. We were together for 57 years. I feel so guilty (for so many reasons). I feel that I should have cared more and told him that I loved him more. I now have all this freedom that I craved and it means nothing.

I know it is early days and I just have to keep putting one foot in front of the other, but I wondered if anyone else has had a similar experience. When will I stop going over and over everything and wishing I could change things.
Impossible question….!
Kas

Kas, my experience mirrors yours. I completely understand the e way you are feeling and the grief is awful. Keith died two years ago and I am still struggling, but it does get a bit easier in time. This forum is marvellous.

 

[Kas445]

Thank you to those of you who have responded and it does help to feel that I am not alone. Dementia and the associated diseases ruin lives in a way that purely physical illness does not.
Kas

 

[Old Flopsy]

Hi @Kas445 - I lost my OH in September, also married 56 years. I wasn't expecting it to happen so soon so it has been a shock, but also a relief to know he is no longer suffering, I too have all this freedom and I am doing very little with it- I think I have hibernated. May I suggest that you hope it is possible to connect with your husband and 'get down on your knees and pray'- I do this and pour out all my regrets, say the things I meant to say. weep buckets- but emerge from the trauma hoping I have connected with his soul. I wish you peace, and happiness in time.

 

[Jale]

Kas445, I have no wise words to offer - people before me have posted wise words. My mum and dad were married for 63 years before my Dad died (not dementia related) and sadly my Mum (vascular dementia) now says she won't wear her wedding ring because she has never been married. Treasure your memories, they will get you through the darker days

Sending hugs x

 

[marionq]

We were married 54 years when my husband died at the end of 2019 also after a fall. The last two years with this pandemic have been such a terrible time for everyone that I don’t think I’ve adjusted to the loss in the normal fashion. Like you I know there are things I could have done better but I also know that I really did do my best and any shortfall was pure exhaustion and frustration. We’re not perfect and now that you are on your own you need to find a way of coming to terms with a quite different life from the one you might have chosen. Best wishes.

 

[Kas445]

Several people have mentioned how memories of happier times can help. I hope that is true eventually, as those memories just now have me weeping afresh! I have emptied a drawer of ‘stuff’ Mike kept. It was his school badges (Head Boy/ House Captain) that had me in floods. I didn’t know him then, but I cannot remember him ever talking about that time.