It's not important

[Jenn]

Because Mum died of dementia and was very poorly a long while before she died, some people around me are downplaying it all, in the sense of you lost her ages ago so her actual death isn't very important now. Someone else said what are you going to do with all that free time you've got? And I can understand looking from the outside why they might say that, it's true I did lose her ages ago but it doesn't make it any easier now. I just feel so awful - especially in the evenings. It's so very very sad. I keep picturing her poor emaciated body. I'm just so sad.
Sorry for being self absorbed, its quite good to have a forum like this to talk about it.

 

[Izzy]

Sorry for being self absorbed, its quite good to have a forum like this to talk about it

You are not self absorbed at all. I can totally understand how you feel. I'm glad you find coming here to share helpful. I do too.

 

[Grannie G]

I do wish people wouldn`t presume they know how we should feel. You are being very polite Jenn to tolerate these comments.

Of course you feel sad. Of course you are remembering how your mother`s body suffered as well as her mind.

I don`t understand the way some people think we lose our people with dementia before they die. We know who they are so how can they be lost to us.

 

[Spamar]

Hi Jenn, find some photos of her in her well days and put them up, so you remember her 'well'. It helped me, anyway.
I had some photos of OH that showed horrible bruising and cuts from when he fell in a care home. I'm very glad - now - that I lost that camera and hadn't downloaded the photos. I have also noticed that before then, in photos taken in the last 2-3 years of his life, he has this 'staring into space and enduring this' look, which was not him at all. I'd rather see the earlier ones where he is relaxed and happy. That's how I want to remember him.

 

[pippop1]

The people that are saying those things don't understand at all.

Just say to them, but she was my mother, you only have one mother and now I don't have her anymore. It wasn't her fault that she was ill.

Those people have no idea how you feel. These are your own feelings and there is no "correct" way to feel after a death in any circumstances.

 

[Beate]

You might have lost some aspects of her a long time ago, but you didn't lose her completely until she died. I wish people would not try to second-guess our emotions. If someone ever suggested to me that surely it is better to be free of that disease now, I would consider punching them. So be sad - it's normal. Try not to let the insensitive people get to you. You didn't quit a job - you lost a loved one, and the free time is of no use while you are grieving. You know that when I gave up my job some people congratulated me to my early retirement? I was becoming a full-time carer not booking a round the world cruise!

 

[Jenn]

Thanks for your kind comments everyone, its helps to know other people feel the same way as me. I suppose its just something you've got to work through and if you're crying you're crying for a good reason. And to be fair some friends have been brilliant. I don't think people mean to be thoughtless, you always assume there is an element of relief after a long illness, when actually there isn't any relief at all.
And the home gave me a photo of Mum from about 6 months ago blankly staring into space, but I've destroyed it. As you say its better to remember the old days.
When my Dad died I felt I had to support Mum, who was having such a tough time and that helped me really, but this time round I've got no-one to help, just grieving for my own loss

 

[PollyP]

I remember (to my shame) making the same mistake in the past - assuming that the grief of an acquaintance who had lost her mother would be less because her mother had dementia. But you live and learn, and a brief conversation showed me the sadness my acquaintance was feeling, and hopefully helped to make me a more compassionate person.

And now I'm in the same boat, having just lost my own mother, who also had Alzheimers for the last few years of her life. I'm fortunate in that I've had very sympathetic reactions from people I know.

I agree with the need to remember our loved ones as they were for most of their lives. I'm hoping that as time goes by things I'll naturally see my mother's life in better perspective. Writing about her for the funeral, and sorting out happy photos, was a good start to this process.

Wishing you all the best - a lot of people do understand.

 

[LadyA]

You might certainly have grieved for your mum while she endured her illness. I remember people saying the same kind of things to me about my husband. But you are right - it's not at all the same. We do grieve as they decline, but somehow, it's different. It doesn't really prepare us for the loss, I found.

Like others have said, I too prefer photos of William when he was well - although my favourite pic is the last one taken of us in the nursing home, a couple of months before he died. He was very thin, but still, there was a spark of "him", his personality was still there. But I didn't take any photos of him after his final illness.

So, yes, this is a time to grieve your mum - the person who was there for your entire life. And to remember that person. And don't let anyone try and rush you through this. Your mum deserves to be grieved. I think the modern world is in such a rush with everything - instant gratification, faster transport, newest technology, - everything moving forward in such a hurry - that it doesn't like those things that will not be hurried, and grief will not be hurried.

 

[LizK]

I too have had so much advice from people who know nothing about Alzheimer's. Even my husband's childhood friend who emigrated 50 years ago seems to think he's more knowledgeable than me after 10 years of caring for my husband.

My husband may be slowly slipping away from me, but we still have an emotional connection and I still love him, perhaps more than when he didn't need me. I shall be devastated when he dies despite not being the man he was.

Liz

 

[Red66]

Jenn, your post has touched a nerve with me. People have said the same thing, you lost your Dad a while ago now, as if to say I should have dealt with it by now. Whatever. You try dealing with traumatic events every single day, you try watching someone you love shrivel to a skeleton. You try deal with it, with someone who doesn't even know who you are. It's heartbreaking. You try watching your loved one right before your eyes suffer. Foolish people for saying that.

Then, still their death comes as a shock, even though we full well expect it to the day sometimes. Sorry, getting me angry! People have no right to say how you/we deal with our emotions, we can't sort our own emotions out let's face it!! Try and stay strong. It's the evening that gets me too, I can't get the images out my head either, my Dad died in August. I don't think I have dealt with it, not sure how too. It's got easier I suppose, blocking it out and getting on with the kids helps!! Keep on keeping on as they say. Red xx

 

[Jenn]

I do hope Red, you find some comfort soon, its very hard. I think its partly that whilst they have the dementia you're dealing with the day to day issues and you put the sadness to one side, but once they have gone you're facing up to it all properly at last and its very painful.
And you're right, emotions do their own thing and you can't stop them, and they're not rational and sparked by the most trivial of things. I'm not so bad tonight as I'm writing this, but last night I was awful. I've found talking to friends is helping and if you show them how upset you are they can understand better how you feel (that works quite well with husbands too.) I think people are beginning to appreciate now its not a `isn't it a relief it's all over' type scenario, but I did need to spell out that I wasn't coping so well.
And the irony is I got a card today from Mum's best friend at school. Beautifully written in a firm hand saying how sorry she is, and it seems so unfair (but good for her) that she is sharp and active and plays badminton, and my Mum was in the state she was in.