Doing it Any other Way?

[Charizomai]

I know people say one should not have any regrets or be torn by choices made in trauma and heart ache. My question is simply this (if you can bear to share your experience): If you could do anything differently in the final stages of your loved one's dementia, what would it be? I do not want to regret that I could have done something differently if I knew better... Does that make any sense? I hope this request does not sound insensitive... or selfish...

My mom is now entering the final stage of vascular dementia and is losing her ability to talk. I wondered today if there is anything I could learn from those who already lost someone to this cruel disease? In a small way your life experience may benefit my mom thousands of miles away - possible or just grasping for straws? Any practical hints would be so welcome...

 

[PostTenebrasLux]

Hello Charizomai,

What a brave and natural question
From a practical aspect, I have heard several say they wish they had better order of their administrative affairs, such as power of attorney and living will in place, issued right at the beginning of their illness (cancer, not only AD).
Record laughter - one day it is too late to hear a person's voice and the most inspiring sound is that of laughter. Do try to record (your mobile might even have a voice recorder feature on it) your mother's voice, even though it may be currently indecipherable sounds. You will recognise them later.
Keep a few hairs (from a hairbrush or "pulled" out of the scalp - they must be intact to preserve DNA: this of course if you and your family are prepared (such as permission given at the beginning before the illness takes hold) - this might help for the future medical research or genetic screening. The root must be intact otherwise it is useless for this purpose.
Sit and hold hands for a long time, so as to fully "absorb" the bond between two beings. Make time to take time.
Hope this helps a little.
Best wishes,
Martina

 

[Winnie Kjaer]

Hello Charizomai,

Sit and hold hands for a long time, so as to fully "absorb" the bond between two beings. Make time to take time.

This is my advise without doubt.

How I wish I had done it more. I knew so little about dementia and the fears and was so torn as to whom to turn to first because I was caring for two very disabled both physically and mentally at the same time. My mother used to come second to my husband most of the time apart from at the very very end. So as I said I wish I had given her more time and could have understood her better.

Learn as much as you can about dementia and just give her all the love and time you can possibly master.

 

[lin1]

spend as much time as you can with mum
sing to her,play her favorite music, talk about good times
say how much you love her. give mum a soft toy such as a teddy to cuddle, if mum likes it, stroke and cuddle her. and im betting you do all the above anyway.

your mum may find other ways of letting you know things,
so watch her and go by your instincts they are often right.

 

[Charizomai]

Thank you for your thoughtful replies. After going through a similar process with my dad in 2007, I have fortunately got the PoA sorted some time ago when my mom was still understanding well.

I wish I did record more of her laughter as suggested! These days I already miss it and it is rare and few in between. Her sense of humour is fading, but yes, we do hold hands whenever we can, and I sing silly songs from my childhood to make her smile.

She is slipping away from me...

 

[miss cool]

HI god bless you Charizomai, i think we all have regrets after i think its only humen. i will put my wormth around you and love.


love miss cool.xxxxxxxxx

 

[Skye]

spend as much time as you can with mum
sing to her,play her favorite music, talk about good times
say how much you love her. give mum a soft toy such as a teddy to cuddle, if mum likes it, stroke and cuddle her. and im betting you do all the above anyway.

Lin is spot on. Wrap your mum up in your love, hold her hand, give hand massages with beautiful lotion, maintain contact as much as possible.

And when the time comes, let her know you love her, and will miss her, but it's all right for her to go when she is ready.

Love is the key, and with love, you can't go wrong.

 

[danny]

Hi, you sound such a caring daughter and I`m sure you will know what to do instinctively when the time comes.

Hazel has mentioned a really important point,letting mum know that it is alright to move on,it really makes such a difference,I have put this link on for you which gives lots of practical advice.


I wish you and your mum a peaceful end to the journey.


http://www.scie.org.uk/publications/dementia/endoflife/last.asp

 

[lisabollen]

my grandma died in march, when she was alive and i was looking after her (she had vascular dementia) i made video's took loads of pictures and when she was in hospital before she died i held her hand lots hugged her brushed her hair and just chatted about anything. the day before she died she was really down, and crying and i layed my head besides hers and told her to imagine she was on a cruise ship (she used to go on quite a few) i made sea sounds and actually made her laugh. although times were very hard we still had plenty of laughs and great times which i can look back on now and they make me smile. as long as you have done what you think is right at the time, please dont have any regrets, we can only do our best, which it sounds to me like you are, keep strong xxxx

 

[Mameeskye]

Visit as much as you can. For me this was the key. To be with Mum, sometimes just sitting watching her as she slept, holding her hand, feeding her. Mum was never a huggy person as I was gowing up, but she would cuddle into me in the last months of her life.

Try to enjoy what is now, sometimes it is hard, but you sound as though you love her very much and will know what to do, for you as well as for your Mum.

((((hugs)))

Love

Mameeskye

 

[Lynne]

Err ...No

Hi, you sound such a caring daughter and I`m sure you will know what to do instinctively when the time comes.

No offence, Angela, but THIS caring daughter was so blotto (sleep-deprived & emotional exhaustion) that few things came easily or instinctively to me at that time

Charizomai, I agree with the majority, giving time & personal contact to your Mum (if she will accept it & be comforted by it) is the best you can do.

Best wishes

 

[Padraig]

Final stage

I never know what people meant by the 'Final Stages.' Do they mean by it, that a loved one can no longer speak or do anything for themselves? My wife was in that state for more than five years. I never though past the moment I was in. I called it the NOW and was thankful for each precious moment. That was why I called the final chapter of my book 'The Gift Of Time'. None of us know how much life time we are allotted. It's not something we can buy, but it is the most precious gift we can give. Now she is no longer, I'm not left thinking: if only I'd had more time. Special moments in time become lasting memories.
One thing we do know for sure is that we have the present moment. After that, our final time will come. After my recent major surgery I didn't think I was going to make it. Lately our daughter admitted that she also did not think I would survive.

 

[sully.]

Not the end yet by any means, but somehow, ( i dont know how)i would never have let hubby get sectioned!!!!!!!!!

 

[PeterG]

For me & Jen, I talked to our boys, we all agreed no intervention/resuscitation. Jen was just 62 when she died on Easter Sunday this year. We could have opted for peg feeding in the final days but Jen fought needles, could not stand or speak or eat & drink. I wanted to keep her for me but it was best not to continue.

In the last hours I lay next to her & whispered in her ear that we were all safe, we were all with her, that we were going on a picnic tomorrow with her beloved mum, sisters & brothers. I held her hand & my son held her feet. We talked to her for 15 minutes after her final breath, our nurse had told me the brain is the last thing to switch off, some minutes after her last breath.

You may not wish to contemplate these final moments, I was completely unprepared but found my way to support her, I hope so anyway.