Feeling guilty

[Fozz]

Hi everyone,

I feel bad because I haven't contributed very much in the way of replies on the site lately. My Dad died a week ago , have already put a post on about what happened, and got some replies which really helped. He lived with me for 3 months while my stepmum was ill, and I am really glad I had that time with him. But since he died all I can think about is all the things I did wrong when he was with me . I didn't realise how bad he was until then , because he was always good at ' covering up'. Now i know that I wasted so much time trying to make him understand things, and was so concerned with telling him the truth, and I know I must have upset him, Also I did get so exasperated some times and shouted at him a couple of times, but I always apologised and gave him a hug afterwards. I just wish I'd told him whatever made him happy at the time, and forgot about being honest. At that time I didn.t know about this site, it would have helped so much.
I suppose it's part of the grief, but all I can think at the moment is that I want that time again to do things differently. I would just be grateful to hear from anyone who has gone through the same feelings, and how they coped.

best wishes to all of you,


fozz

 

[Brucie]

Your experiences are ahead of mine, so I can't comment on my experience in the same situation, but a lot of what you say about guilt applies equally when a person moves from their home to a care home, so I know exactly what you mean. I've been there.

In the best of all possible worlds, no-one would get dementia, or any other disease. In the best of all worlds, if they did, then we would do everything perfectly to look after their needs. In the best of all possible worlds, we would get one of those tearjerking Hollywood endings where, somehow, everything somehow works out, without regrets.

But we're in the real world, and all we can do is our best. For most of us, we have to make things up as we go along, because the appropriate level of advice isn't there on tap. Hopefully, this forum will help people who follow us down this path!

Please don't think about the things that went wrong - for sure your Dad won't have, at least not for more than a moment.

We have all shouted at least a bit. Think positively: you were trying to help and cared enough to get mad when what you could do wasn't enough, or right - often it isn't for us.

No matter how badly, or how well things went, I'm sure we would all like to do it again, with the knowledge that we have gained.

...or would we?

Since we all know how things will turn out ultimately, perhaps we should just say "well, I couldn't have done better at the time, and now the person is free from the dementia I can start to remember all the good times again, before the dementia set in"

Give yourself some space, and once the natural grieving is less, don't keep blaming yourself for not being perfect. It's the human condition - none of us is perfect. There are those who try and those who don't or can't. You did. That's important.

 

[Norman]

Fozz
don't regret feeling guilty you did your best.
After 7 years of caring for my wife, every day I still lurch from feeling to feeling.
All the cassical ones anger,remorse,frustration and feelings of hopeless desperation.
I lose patience with her and become angry and then become full of remorse for the way in which I have spoken to her.
I look at her and I am filled with feelings of deep pity coupled with deep regrets,I still love her deeply after 57 years of marriage and 7 years when I don't really know her as the girl I married.
Fozz don't worry about regrets I have many and I sure I will have many more in what future we have left.
Day to day
Best wishes
Norman

 

[Rosie]

Feeling guilty.

I can remember when my mother had not been diagnosed with AD and our GP said it was "mini-strokes" my mum was having , I used to go to my parent's house and because my mother's speech was becoming affected the GP recommended "speech therapy" , I used to go with my mum to the local hospital sit in the room when she was having this "therapy" and looking at the card's that the therapist was showing her and feel angry and frustrated that my mother was struggling.Little did we know as a family this was the sign's the illness was taking hold. If I could only turn back time I feel so guilty that I feel I could have been more understanding, but we didn't know what lay ahead but I'd give anything to change those times.

 

[Fozz]

Thanks for your replies,they do put things in perspective. I guess every one feels guilty about some things in their life, and most people do do their best with the knowledge thet have at the time. Dementia is so difficult I think because you get so little feedback from the person you are caring for. If someone is physically ill, they can still tell you what you can do to help them. With dementia it is as if a third person is there trying to sabotage your efforts, and with whom you can't communicate at all!

Rosie, try to remember that you were going by what the doctors said was wrong with your Mum, so it's their fault if the wrong treatment was being used. You were doing your utmost to help her, but had been given the wrong advice, you have nothing to feel guilty about.

 

[Rosie]

Feeling Guilty.

Hi Fozz,
Thank you for your word's. I feel at time's because I'm a trained nurse I should have had more answer's regarding my mother's illness, but I trained as a general nurse and had no Mental Health training at all. So my knowledge is limited, but I feel "the family " still look's to me sometime's for answer's and I don't know them. But thank's again, hope thing's are ok with you, after your sad loss, Take care Rosie.

 

[Jenny M]

I persuaded my Mum to leave the home that she had lived in for 40 years to move near to me and my family in North London. That was at the end of 2002, when apart from continually losing things, and forgetting words (as I do myself!) we had no idea that Mum had anything other than normal age related problems. Ten months later, she went into hospital for a routine op, and she never went home again. She went into residential care in November 2003, and she died on April 1 this year. My head is still spinning with the speed at which it all happened. And I keep thinking - what if? What if I hadn't moved her away from her familiar surroundings? What if she had stayed near her friends? There is no doubt that she was on a rapid downward spiral from the moment she arrived in the new house. Would it all have happened anyway? I guess I'll never really know. Various people who know more about these things than I do have assured me that the move would not have made any real difference, although the unfamiliar surroundings and people would have exposed the existing problems. I was also irritated by my Mum's habit of continually forgetting and losing things. Now I think that I was so blinkered for not seeing the many obvious signs, and for not being more understanding and kind. At other times I am more positive - but guilt is all part and parcel of grief, so I am told.

 

[Bugsy]

Please don't feel guilty.

I know that we've known about Dad's dementia for around a year now. Moving him may have accelerated it, who knows, but I do know that I would not have been able to have given him the care and support to Mum if they had still been living in their marital home for the last 60 years!

Mum who doesn't suffer from dementia is so happy in her new place, sees many more people than she could ever have imagined.

Dad does of course miss being able to pop over the road to his old friends or around the corner but when I look back on his behaviour prior to a year ago he has been suffering with forgetfulness and confusion for at lest a year prior but he had covered it up so well. It is only because I am seeing him so regularly that I know realise how great the difficulties were when he was living further a field. His old friends tell me how he would go out with them to have dinner and they’d not get to the intended place, or times when Dad would disappear for hours and not tell Mum that he wasn’t coming back for dinner because he’d not realise the time.