Finding it hard to cope with my nan's condition

[Keiramurphy]

Hello everyone

I Haven't been on here for a while, my lovely Nanna has CBD for 4 years now, and i was just looking at all the old pictures and couldn't believe how much she has changed.

She can't walk, talk, move or even smile anymore,she lives in a home and has the best of care, she also started to choke not long ago, and i really hope it was just a one off as i dont think i can handle that if it's apart of this condition.

I went to see her today and i was by myself ( usually my grandad is always there), and i was telling her about recent events, my new career, i booked my wedding etc, and the way she was staring at me just broke my heart its like she knows what i'm saying but feels like she doesn't want to know.

I've never told her how much her condition breaks my heart, as i dont want to see her upset, but i feel as if she thinks its not bothering me as i act so hard faced then as soon as i leave, i break down and cry. I dont talk to my mum about it either, as i know how much it kills her inside, so i dont want to make it worse.

I've been to counseling about this and she made me understand im going through the griefing process even though shes still here, my nanna i once known is gone.

Just needed to express my thought somewhere. i hope everyone is well. xxx

[enjoysalud]

I am so sorry that this horrible neurological condition has stolen your Nanna. PSP took my son at the age of 55. I wish that you could talk to your mom. My prayers are with you.

[Keiramurphy in reply to enjoysalud]

Thats sad to read such a horrible condition.

Thank you.

[salem16 in reply to Keiramurphy]

My thoughts and prayers are with you. My husband has passed, so sad. If I can be of benefit to you, or anyone I am here for you.

[ssdw1958]

Well it’s a good thing to say it to someone we’re a good crowd to say it to. I am sorry that you have to see your grandmother like that you should ask the counselor what they say about talking to your mother about your grandmother you never know your mother might want to talk to you about her mom. You should look into that it might help her and you.

[doglington]

It is heartbreaking. Yes, you are grieving for the loss of the nan you knew.

I'm sure your nan knows and loves seeing you but the " stare " is part of PSP.

It would perhaps be good for you and your mum to share your feelings. You can help her as an adult as well as a daughter to ease her burden. My children are a huge comfort to me.

Keep in touch. We all know how painful it is.

Big hug from Jean xx

[salem16 in reply to doglington]

Big hug and prayers to you. I felt with my husband he could still hear and understand when I talked to him. He tried so hard to be there for grandson Cadan. My other daughter who lives in Alberta we video cam often he seemed more at ease when we did this.

[Yvonneandgeorge]

Jean has said what I would of said, good to talk xxxx

[Bargiepat]

Such a haunting image of what CBD can do.........

One day she will be free , she will be in a better place.

All love to you and your family. XXX

[Julieandrog]

Hi

Its hard for you grandkids, but this is where the memories help. Focus on that lovely left hand picture, just keep doing what you are doing.

My daughter and i don't talk much about her dads illness, we both end up sobbing, she knows how lucky she was to have her dad at her wedding three years ago, no comfort to you but your nan would want you not to be sad.

Juliex

[Marie_14]

Oh I wish I could give you a big hug Keira. My advice for what it's worth is to talk to your Mum about this. Her heart must be breaking just as yours is. You need each other more than ever and will in the future too.

Your Nanna knows what you are saying but she can't express how she is feeling. So tell her all your news Make sure you tell her you love her too and hug her. She will really appreciate that, and you will always remember that you let her know how much she was loved. Be brave my friend.

Congratulations on your good news. When are you getting married?

Love and hugs to you.

Marie x

[Duffers]

Keira. Keep telling you nanna all your news. She may not or can not acknowledge anything but she will want to hear her dearest granddaughters stories and plans. Hold her hand while you're telling her. My ger likes that.

Good luck with your new career and your wedding plans.

Marie

[Keiramurphy]

Thank you very much for your comments. It's nice to speak to people who understand the conditon, as friends and partner don't quite get it. She has been rushed into hospital today as she's very poorly and my mum doesn't think she has long left. 💔

Very weird feeling as I feel like I've been greifing her for years so I'm really confused with how I'm meant to feel if that makes any sense.

Thank you again. I'm getting married in a lovely hotel in Oswestry Wrexham, not until 2019 though xxx

[Spiralsparkle in reply to Keiramurphy]

So sorry to hear your beloved Nanna has been taken into hospital. I hope they look after her very well and she is comfortable as can be.

My Mum has CBD and it is so hard to watch them decline. Have you been able to talk with your Mum at all?

Are you local to oswestry? We are in Shropshire also.

Take care x

[Keiramurphy in reply to Spiralsparkle]

Hello

I'm sorry to hear that. It's so horrible isn't it. How is she?

My nans on oxygen and a drip at the moment but taking it one day at a time

Yes I'm from Wrexham! Have you got much support? It's hard when no one has heard of this condition Xxx

[Spiralsparkle in reply to Keiramurphy]

We are in Telford so not a million miles away.

Not much support tbh but at moment just about coping. Last year with the diagnosis told mid to late stages, she sort of straddles both typical lists. She is doing well all things considered, has developed epilepsy now.

All you can do is take it day by day, hour by hour as you really don't know what will happen at any time with these conditions. Hope your Nan is comfortable.

Xxx

[Keiramurphy in reply to Spiralsparkle]

It's heartbreaking seeing them decline and can't do anything about it.

Doctor told the family my Nanna has 7-14 days to live, felt like someone stabbed me in the heart even though I've been expecting it, at least she won't be suffering anymore.

Take care and look after yourself. Xxxx

[Spiralsparkle in reply to Keiramurphy]

So sorry to hear this news. Even if expecting it still doesn't make it easier to get to head around.

Much love to you and your family during this time.

Xxx

[doglington in reply to Keiramurphy]

Hold her hand and tell her you love her.

You have done well.

love, Jean x

[doglington in reply to Keiramurphy]

You don't have to follow any pattern. You feel what you feel. Thats it. We all are grieving the person as they were whilst managing how they are. Its torture at times for us all.

Big hug from Jean xx

[Keiramurphy]

Thank you. The home will not give her antibiotics for her chest and has upped her morphine, and told us to expect 7-14 days to live.

I don't understand why they won't give her anything, they've stopped giving her many of her medications aswell. I know she's going to pass, but surly they can stop the chest infection from getting worse.

My Grandad is currently clearing all her clothes out, it's so heartbreaking on what to do/say

X

[doglington in reply to Keiramurphy]

You need to let them go if its time. They only need to give anything to ease them. I stopped giving Chris anti-biotics when I realised that "getting better" would only prolong the passing.

Your grandad is dealing with it in his own way.

Thinking of you, love, Jean x