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Grieving for someone still here

Sofie_w

New member
Sep 22, 2020
5
My grandma has had dementia for nearly 5 years now and is going into end of life stage. We have been extremely close since the day I was born 23 years ago. Throughout lockdown I couldn’t see her for 5 months as she is in a care home and because she is hard of hearing I couldn’t even talk to her on FaceTime or on the phone. I have now been able to see her a few times over the past couple of months albeit at a distance but yesterday was her birthday (she was 93) and seeing her really hit me hard that the dementia has completely taken over both hers and our lives and I don’t think she remembers who I am anymore. I am finding this really hard to deal with as I feel I am grieving my most loved whilst they are still present and the thought of grieving them all over again once they are gone is heartbreaking. I have felt like this for at least 4 years now and I have always tried to deal with it myself but now realising I cannot.
 

SparkleyGem

New member
Sep 22, 2020
1
Hi sofie

I completely understand how you feel unfortunately, my father who is in his early 60s has had to go into dementia nursing care last month. I constantly feel like I’m grieving when my dad is still alive but yet fading away each day. The only way I know how to deal with it is to keep myself busy and to cry when I need to and to remember happy times. I am getting to visit the home tomorrow for the 1st and see my dad in the garden for half hour and I’m so nervous because I will want to hold him in my arms and I won’t be able to and I’m scared that I will break down. I am sat here now with tears rolling down my face because this cruel disease is completely heartbreaking for us all.
sending you a virtual hug
 

Hazara8

Registered User
Apr 6, 2015
536
My grandma has had dementia for nearly 5 years now and is going into end of life stage. We have been extremely close since the day I was born 23 years ago. Throughout lockdown I couldn’t see her for 5 months as she is in a care home and because she is hard of hearing I couldn’t even talk to her on FaceTime or on the phone. I have now been able to see her a few times over the past couple of months albeit at a distance but yesterday was her birthday (she was 93) and seeing her really hit me hard that the dementia has completely taken over both hers and our lives and I don’t think she remembers who I am anymore. I am finding this really hard to deal with as I feel I am grieving my most loved whilst they are still present and the thought of grieving them all over again once they are gone is heartbreaking. I have felt like this for at least 4 years now and I have always tried to deal with it myself but now realising I cannot.
Sofie, these are particularly difficult times and this current situation has exacerbated the difficulty in respect of visiting loved ones in residential care. It is a rather lovely thing, this relationship between someone so young and one who is both of a great age and living with dementia and you express that clearly in your words. The "secondary bereavement " which is the living one related to dementia, will be very familiar to those who contribute on here. It is challenging, l know, to see dementia as a given, as a new reality in someone we cherish and have known so well and the loss of all that was seemingly intact and normal is the loss we attribute to the sense of grieving which overtakes us even when the subject of that grieving is actually alive in fact. But the true nature of the love which communicates between a granddaughter and her grandmother cannot be touched by anything. The moments of laughter, the times prior to the onset of dementia cannot be changed. The compassion which evolves out of that love also is immune to the ravages of dementia. Yes, it seems extremely hard and harsh when someone important to you becomes like a comparative stranger psychologically. That is the dementia . But within than shell of dementia resides the real person. I think in your heart you will know that. And l also think that you will sustain the obvious quality and strength you show in actually contributing on here, which l can assure you helps others on their own quest for solace in this extraordinary world of dementia and its impact on our hearts and minds.
 

nae sporran

Volunteer Host
Oct 29, 2014
7,110
Bristol
Hi sofie

I completely understand how you feel unfortunately, my father who is in his early 60s has had to go into dementia nursing care last month. I constantly feel like I’m grieving when my dad is still alive but yet fading away each day. The only way I know how to deal with it is to keep myself busy and to cry when I need to and to remember happy times. I am getting to visit the home tomorrow for the 1st and see my dad in the garden for half hour and I’m so nervous because I will want to hold him in my arms and I won’t be able to and I’m scared that I will break down. I am sat here now with tears rolling down my face because this cruel disease is completely heartbreaking for us all.
sending you a virtual hug
Welcome to the forums @SparkleyGem. We can all empathise with you when you say it is heart breaking. Can I send you a virtual hug to help you on your visit tomorrow.
 

lemonbalm

Registered User
May 21, 2018
689
Hello @Sofie_w and @SparkleyGem . It is extremely hard to deal with these emotions. We all understand here, where so many hearts are breaking bit by bit. I hope that you can find some comfort and support from the forum.
 

Sofie_w

New member
Sep 22, 2020
5
@SparkleyGem thank you for your really kind message, it's actually really helpful but also sad to see that other people are going through the same thing. I am really sorry you have to go through this with your dad still being so young. The first time i got to see my granny after 5 months in lockdown was emotional for me. I wasn't feeling upset beforehand and actually felt really excited to see her. As soon as I saw her in the flesh though I just broke down and cried in front of her and the carer for the whole duration of me being there and then cried for the rest of the day. Luckily I don't think my granny saw me crying as we still had to be at a distance and she is in such a state of confusion I am not sure she even realised who I was. It is so sad because I come away thinking what either of us are getting out of seeing each other if she doesn't know who I am and if I leave feeling more broken each time but I have to remember how special these little moments are to the both of us even if she doesn't seem to understand anymore. Sending you a virtual hug back.
 

Sofie_w

New member
Sep 22, 2020
5
@lemonbalm thank you for your message. I have never thought about speaking to others about this as I assumed I could handle this myself but i've recently felt really alone with this (besides having my mum and dad) and felt like it was time to accept that speaking to others may be really beneficial and since joining this morning I am happy I have.
 

Sofie_w

New member
Sep 22, 2020
5
@Hazara8 thank you for this beautiful message. I feel like I need to hear these things to keep going so thank you so much for that.
 

Hazara8

Registered User
Apr 6, 2015
536
@Hazara8 thank you for this beautiful message. I feel like I need to hear these things to keep going so thank you so much for that.
You are more than welcome. The beauty of this forum is that the people contributing are not theorizing nor speculating for the most part. They are, or have been living directly with the consequences of dementia in a loved one. Thus there is an understanding which needs no outside qualification, nor disconnected platitudes. Sometimes that understanding evades even family members, albeit unwittingly.
Your words add to this 'community' in a very meaningful way.

With warm wishes.
 

Pepp3r

Registered User
May 22, 2020
53
Hi @Sofie_w I agree the people on here are amazing !
There were times my lovely mum forgot I was her daughter and thought I was her best friend, we would carry on regardless and then out of the blue mum would say 'you are a lovely person ' to me. I think your grandma would still see the special person you are even In times of confusion . Carry on being you, warm wishes to you and your grandma.
 

Tattooed Mark

Registered User
Sep 19, 2020
24
My grandma has had dementia for nearly 5 years now and is going into end of life stage. We have been extremely close since the day I was born 23 years ago. Throughout lockdown I couldn’t see her for 5 months as she is in a care home and because she is hard of hearing I couldn’t even talk to her on FaceTime or on the phone. I have now been able to see her a few times over the past couple of months albeit at a distance but yesterday was her birthday (she was 93) and seeing her really hit me hard that the dementia has completely taken over both hers and our lives and I don’t think she remembers who I am anymore. I am finding this really hard to deal with as I feel I am grieving my most loved whilst they are still present and the thought of grieving them all over again once they are gone is heartbreaking. I have felt like this for at least 4 years now and I have always tried to deal with it myself but now realising I cannot.
HI Sofie,my heart goes out to you reading this.To be close to a loved one all your life and having to watch them deteriorate is heartbreaking.I was with mum every day being her carer,but when she went into hospital this year,albeit for only two weeks,the restrictions meant she couldn't see me a lot and like your grandma,they get used to seeing us everyday in their dementia,so to not see her this long must be really hard for you and grandma,too,the separation just quickens the memory loss I think for her.I understand,we are are grieving for them even when they are still here,because we know the final stages and outcome are ever waiting.You are so strong and I think you have realised you need some help.I did,too,I knew a certain point would come one day when I knew I would need to ask.Grandma is a tremendous age,my mum nearly got to 92.They are a good,tough and honest generation.Deep down,she loves you for being there when you can.Mum at the end thought I was just her best friend,not her son,but I knew in her mind,somewhere,she remembered.Look after yourself
 

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