I wish it would be over

[florence43]

Dear Rachel,

I lost my dear mum 6 months ago, and want to reassure you that what you feel is ok. I felt like that for such a long time, and I felt guilty admitting it, but here people will understand. The torment and distress that comes with watching someone stripped of their personality and love of life...well, as Nanak says, you wouldn't leave an animal suffering like that...

I remember the darkest days, and I compare them to what you are experiencing now. I asked "how long...?" and I wished it was over. The future seemed grim. But there is a quiet time to come, and that is when you get to think and when you get to "be" with your mum. My husband described it as the eye of the storm. There is chaos and disruption on either side, but in the eye of the storm there is peace.

My mum went through many stages, and when I think back to them now I question how on earth I functioned. It was awful. But then one of her stages was the one where she needed 24 hour nursing care and was bed-bound. That was the eye of the storm. I would spend every visit sitting by her bedside, talking, holding her hand, painting her nails, brushing her hair... I would sing along with the radio, and talk as if she could respond. But she couldn't. She was calm, and I was compassionate. You can afford that when your mum is so poorly and vulnerable. It's a time to say everything you want to, and be sure they can hear it. I would cry more then, but the tears were for her, and less so for me. The darkest days...I think the tears were for me as much as her.

It all goes in stages, and this is probably the worst. But the calm does come.

The other side of the storm is the loss. That's a whole new stage, but one we experience alone, as the suffering has finished for our loved-one. The realisation only hits home once they've gone... When you're living it, there's no time to take stock, so that bit comes much later.

Dementia has a lot to answer for, and my heart goes out to you and so many others still struggling to take on this monster. My mum has been released, so now I can miss her properly as a daughter without a mum. Just a mum, not a dementia sufferer.

Sending much love and understanding, xxx

 

[lady g]

Reading all the above posts has made me realise that im not the only one who dares to think the unthinkable. Its the most horrible wicked disease ever and to have our beloved relatives and parents suffer it is despicable. same as you say animals are not allowed to suffer so why should humans. Life is so unfair.

 

[rachelse]

Thank you

Thank you to everyone who has replied to this post. Your words of comfort and support have really helped. Thank you for sharing your experiences.Love and strength to you all to deal with what lies ahead or what has passed xxxxx

 

[strawberrywhip]

Remember the good times

Hi Rachel,
Its so hard, MIL has at last been released from this dreadful disease, and although we were sad it is a blessing because at last we ccould celebrate her life, and finally started talking about the lovely person we all knew. We had forgotten her during the pain and trauma of the past 5 years, the worry, the rows then the awful business of getting her into a home when we couldnt cope at home.
It was almost too painful to remind ourselves of who we had lost while she was still alive..but we felt we could properly celebrate her life at her funeral.
Like your relative she just faded away, and was skeletal when she died, however it was a blessed relief.
We agreed we didnt want any emergency admissons to hospital just a quiet dignified end, which I am glad to say she had..just died in her sleep.
Thinking of you xxx

 

[mimi jarvis]

Dear Rachel,
when I read your post, I could have been reading about my own mother. Their ages are the same and the behaviour pattern is the same.

It is torture to watch our loved ones trapped in this private hell. My own mother is so unhappy, she won't sit still....is always crying, desperate to 'go home' and like you, I just wish it would end. No one deserves to live this way.

I console myself only by knowing that it can't go on forever and by doing what I can to soothe her.

Look after yourself too, because it's easy to let stress eat away at other areas of your life.

My thoughts are with you. x

 

[babypie]

My Dear mom

I had similar thoughts to you before Mom died,It was so pitiful to see her and I know she would not want to be alive. In her last weeks her head had dropped and she was admitted to hospital,she had stopped speaking a few weeks before that. I saw her everyday and 2 days before she died she grabbed my hand and said " this is awful, I want to be dead" I asked her to repeat it and she did.It was the last time she ever spoke. It gave me so much comfort because I was actually wishing her to die, with all the guilt and mixed up feelings that comes with that thought.

Best wishes and love to you

 

[Boudeca2007]

We all feel like this at some point during care for our loved ones. And yes I would agree that if your Mum was your ' old ' Mum she would be saying look after my grandchildren first . At least I know my late Mum would have said that if she could. She could not speak and had been in EMI Nursing Homes since 2004. We grieved every day for her ' old ' self and it broke our hearts every time we visited her. Dont beat yourself up - you have done everything possible for your Mum.

I have told my own children and my sibling that if I ' go ' like Mum to leave me alone and don't visit me. Life is for living and we only have 1 life and that life has to be concentrated on our own and the next generation. I feel like the last 10 years or so I have lived in a nightmare and yes I do feel guilty that I wasn't there all the time for my children and I still feel guilt about not being there enough for my Mum. We can't be in 2 places at one time though can we ?

Mum's only surviving sibling did not visit her because it ' upset ' her to see Mum like she was - she didn't even come to her Funeral. But at least I have a sister who equally shared the task of doing stuff for our Mum. It must be very difficult if you are on your own.

 

[AdrianW]

I haven't posed here for ages, but this really struck a chord with me. Dad has been in a care home since 2009, and to be honest should have been there for a couple of years before that. His quality of life is zero, his mobility is zero, he knows nobody, he cannot string together more than the odd random muddled word or two............you get the picture. All he does is eat when food is spooned into him. He is constantly getting UTI's and pressure sores and the whole family just want his suffering and indignity to end.

The only emotions he display are fear and anger. He cannot even begin to work out where he is or what's happening, and mixing with other people - including family - just make him angry and upset. I guess his brain is attempting to work out who people are and what they want. As a consequence, he rarely leaves his room. He is slightly "better" when he is alone as he just seems to doze most of the time.

No complaints with the CH, they do what they can and keep us informed. You could put Dad into a top of the range luxury establishment with 24 hour 1:1 care - it would make no difference to him.

I know beyond all doubt he would not want to go on like this. His father had AD and he made his feelings very clear at the time that the latter stages are worse than a death sentence.

What sort of wicked and cruel society are we to put people through this? You would never do the same to an animal.

Here's hoping it won't go on too much longer. I feel no guilt in saying that, and while I'm sure there will be some sadness, the family have already done their greiving.

Adrian