Final stages of CBD: Hi all My dad is in... - PSP Association

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Final stages of CBD

Stormtrooper4 profile image
13 Replies

Hi all

My dad is in the final stages of CBD and in fact the Palliative Care Consultant seems to think we have less than 3 months left with him.

I am really really struggling with this and can't bear the thought of not having my dad but this illness is the cruellest illness I have ever encountered. My dad is only 68 and my parents had so many plans for their retirement.

I can't sleep, i've lost my appetite, I feel emotional all the time, burst into tears at the drop of a hat. It's all just so overwhelming.

I feel like I am already starting the grieving process.

x

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Stormtrooper4
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13 Replies
bazooka111 profile image
bazooka111

I am sending you warm hugs of support. I know exactly what you are going through emotionally is very normal. Surround yourself with people — consider a grief counselor- hospice can provide. Self care is so very important, so be intentional with that - you will need your energy.

This disease is relentless, and your Dad is a warrior as he also navigates … keep talking to him, share these special moments to share the beautiful memories of the years gone by. Remind him of who he is to you …

I cared for my Mom for six years, and she passed in December — anticipatory grief is real, and I walked this journey as many of us have … eat, shower, take a walk, breathe deep, remind yourself that he loves you too and he knows you love him. Take care of you .. that is what he would want you to do. Self care my friend .

Hugs — xx Kim

Stormtrooper4 profile image
Stormtrooper4 in reply tobazooka111

Thank you Kim. That was really lovely x

AliBee1 profile image
AliBee1

Hi, I agree with everything that Kim has said and I understand how sad you and your Mum must be, because what they were planning will never happen. Just before my husband died I realised that he would no long be crippled by this horrible disease and so I wrote a poem. I would like to send it to you and a very good article I found on anticipatory grief, which has helped others. I will send you my email address by private chat. Big hug AliBee

bichonbear1 profile image
bichonbear1

Wishing you much strength, I am thinking of you. My mum is 69 with CBD and it’s the worst thing ever. I can identify with everything you have said. Take care of you x

Kelmisty profile image
Kelmisty

❤️ remember the good times and access any service offered as they do help. X

Troubleandstrife profile image
Troubleandstrife

This grief you feel is real and normal and necessary. I agree this disease is the cruel list. Letting go of my husband, excepting that he had to die to get away from the disease was the most excruciating yet also the most relieving thing I have ever done. We love them so much we cannot bear to see them suffer yet we cannot bear to imagine our lives without them. It’s so nice to see and hear everyone sharing here. It’s helpful for all of us and AliBee1 I would love to read your poem. I am guessing that many of us would like to read your if you would be willing to share. ❤️

Troubleandstrife profile image
Troubleandstrife in reply toTroubleandstrife

please excuse the typos, I was using voice to text

AliBee1 profile image
AliBee1 in reply toTroubleandstrife

I will share. I have shared it before but I know many of you will not have seen it.

Love AliBeexx

45purple profile image
45purple

Sending hugs to you and your mum. Get in touch with a grief counsellor if you can. Gather strength for the time you have left 💜

Hi Stormtrooper4!

There is still a stretch of hard moments and pain before the end.

The work, dedication and effort well done remains and will remain on you.

This September it will be 3 years since Maria passed away and the memory of her still gives me a chill because of the sufferings she suffered. But she comforts me that, with the mistakes I could make due to lack of knowledge and experience, despite this, I have the feeling that I did a decent job and the effort was not in vain because it alleviated the hard process that she suffered.

A big hug and courage in this final path as well as in the duel that will last a long time, perhaps always, there are gaps that cannot be replaced by anything or anyone.

Luis

daddyt profile image
daddyt

It's called anticipatory grief, and it's a real thing. You need to take care of yourself. Period. A big hug and prayers to you.

Tim

HARRADL profile image
HARRADL

I hear you. Felt like I've been grieving for at least three years, and now daily as your experience. Mom is in the final stage of psp, and this week absolutely no communication and not eating or drinking for a few days. She has been in a long term care centre for 3 wks today. Hoping that tomorrow is better for her. It's nothing less than gruesome. The best moments now are just ensuring some peace and comfort, while holding her hand or reading to her.

Dance1955 profile image
Dance1955

so sorry to have you here

your dad is so young try to make the most of the time create memories of course you are grieving for what you have already lost be strong for your dad and yourself take care of yourself do some nice things in between

I took care of my poor husband for 10 years it’s the worst disease I have ever known no professional person seems to be able to help just treat his symptoms he’ll love you and you’ll have no regrets

I lost my husband in December after a massive fight he was the strongest person I know

Hugs to you x

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