Don’t think I’ve dealt with this properly. Now it’s a problem.

[Lancshiker]

My died from aspiration pneumonia as a complication of Alzheimer’s five years ago on 17th August. Our family is not a close one and open speaking about feelings is not encouraged so I just got on with it: the diagnosis, dealing with the other parent who was being difficult due to a poor pre existing marital relationship, the decisions about care, the palliative care when the time came and the funeral and whatever came after. I got news of the diagnosis via e mail from my mother which was typical but devastating. I knew something wasn’t right but never thought of dementia at the time (bizarre given you become a total expert once you know).

So I’m thinking five years coming up and I’d like to do something special. I go every month to put flowers on at the cemetery because it looks nice and my dad was a very neat and tidy person and it’s important to me to do that even though it’s a very small thing and is more for me than him I guess if I’m being realistic. So I made a donation to Alzheimer’s research and left a picture and a map of where he grew up which was a really nice thing you can do when you leave a donation as well as hopefully helping important research. I also took a family notice ad out in the local paper. (I’m a bit worried about that because of family dynamics but just wanted to do it for Dad without complications). But whilst I was doing it (at work in my lunch hour) I got completely in a state and ended up as a mush in the toilets for about an hour.

Ever since Dad died, I can’t stop thinking about (a) why didn’t I talk to him about his condition before it was too late (b) why do I feel so guilty even though I did the best I could to get Dad the right care (and we did because he was eating loads right up until he died and he never ate if he was unhappy - a rubbish yardstick but I do honestly think he was content), (c) why can’t I stop thinking about death, how pointless life is and am I going to get dementia and (d) why am I making this all about me - see (c).

Don’t get me wrong I’m lucky enough to have good friends and a loving husband but I can’t seem to deal with this and get to the happy memory stage. I just feel sad, guilty and full of regret.

It’s a long waffly story because I haven’t really articulated this before and even if no one replies I think it’s helped just to get it out.

 

[nae sporran]

Sorry you are still struggling with grief @Lancshiker. It is so hard to come to terms with caring, and loss. Like you I was brought up never to talk about feelings, so was reluctant to open up on these forums or to a counsellor. I hope getting it all out has helped, but I did find CBT very helpful in dealing with the stress of caring and it might help you with your grief. Sorry if that is not something appropriate.
When you wrote that your dad was happy because he never lost his appetite that did strike a cord. My OH was ill over the winter and the reason I knew she was badly ill was that she stopped eating. These are the funny little things that we do notice, so I'm sure your dad was content despite his condition and you did everything you could for him.

 

[Beate]

You seem to be suffering from depression. I could tell you that you have nothing to feel guilty about and that talking about his condition would most likely have been totally fruitless, but I'm not sure you will believe me. You need professional help so please see your GP. He should be be able to refer you to a counsellor that specialises in grief. Taking care of our mental health is just as important as our physical health. You wouldn't leave a broken leg untreated for years so please don't delay. All the best.

 

[canary]

I too think that it would help a lot if you saw someone who could help you through your grief - maybe a bereavement counsellor.

I am sure you have nothing to be guilty about about and trying to talk to someone with dementia about their condition usually gets you nowhere as most people with dementia are not aware of their own problems.Feeling guilty is part of the grieving process, though.

 

[Canadian Joanne]

I am certain that all of us who have lost a loved one have those moments when we think we could have done more, said more, anything more. The truth is that we did the best we could at the time which is all that can be expected of us.

I also think counselling could be helpful. It's not right for you to be suffering for so long.

 

[Lancshiker]

Thanks so much everyone for your help. Made me quite emotional . I didn’t expect to get a reply so this is so great. I did see a counsellor a couple of years ago but didn’t really feel it helped. It’s good to know though that others have felt the same. Makes me feel a bit more normal. Thank you so much for being so generous especially when you have gone through so much yourselves. I’m sorry for all your losses too. It’s so hard but nice to know there is support out there. All the best everyone.

 

[Pete1]

Hi, I totally understand your feelings of guilt about the concerns you have for your future. Both my parents died with dementia (which is more prevalent as we live longer), and it is perfectly normal to have those concerns, but those thoughts do not in any way diminish your love for your Dad. All I can say is that you have to enjoy your life now as none of us know what the future holds and why waste the present worrying about something that may or may not happen......at least that's what my sister and I say!!

I don't think there will be any person that has experienced someone close living and/or dying with Dementia that has not felt guilt, as it really is an impossible task, and we all look back and think we may have done things differently - but we always do things with love and the best of intentions. I don't think our loved ones would want us to be unhappy and burdened with guilt. I know you mentioned that you had counselling, but perhaps revisiting it may help now time as moved on.

Take care of yourself

Pete

 

[Kikki21]

I agree with the rest of the forum members about maybe trying grief counselling as a specific as it has been a long time with you saying you still feel like this. Counsellors are not all the same. I hope you find some peace x