Struggling to come to terms with Grandad's diagnosis

[AmyRxx]

We've known there has been something wrong for a long time now, he finally agreed to have the memory tests done and he's been diagnosed with vascular dementia and alzheimer's. I'm glad we know what is wrong, but he refuses any help and won't accept the diagnosis. I'm struggling because it confirms he isn't ever coming back.
I know this isn't about me and I shouldn't make it about me, it should be about him, I need to carry on with my life as normal but in a way I feel like he has already gone which hurts me the most.
He had a big operation a week or so ago, and visiting him in hospital is really difficult. I try and be strong but I just want to burst in to tears, I try and be as up beat and positive as I can with him, as I find that always seems to help his mood, he's confused but if I go along with his stories and requests, even if he repeats himself over and over again, he seems happier. He knew who I was today but he couldn't remember my name but that's ok. I think him being somewhere unfamiliar has made things very much worse, and I'm hoping as soon as he can return home, he may settle down and be a little better. I can't even imagine how my grandma must be feeling, I just want to support them both.
I don't even know what I'm hoping to get out of this post, I just felt I needed to vent somewhere. Tonight has been a bad night, I've been upset on and off for hours and barely slept a wink. I'm worried for the future.
Thank you for listening. I hope you are all ok.

 

[Morg]

We've known there has been something wrong for a long time now, he finally agreed to have the memory tests done and he's been diagnosed with vascular dementia and alzheimer's. I'm glad we know what is wrong, but he refuses any help and won't accept the diagnosis. I'm struggling because it confirms he isn't ever coming back.
I know this isn't about me and I shouldn't make it about me, it should be about him, I need to carry on with my life as normal but in a way I feel like he has already gone which hurts me the most.
He had a big operation a week or so ago, and visiting him in hospital is really difficult. I try and be strong but I just want to burst in to tears, I try and be as up beat and positive as I can with him, as I find that always seems to help his mood, he's confused but if I go along with his stories and requests, even if he repeats himself over and over again, he seems happier. He knew who I was today but he couldn't remember my name but that's ok. I think him being somewhere unfamiliar has made things very much worse, and I'm hoping as soon as he can return home, he may settle down and be a little better. I can't even imagine how my grandma must be feeling, I just want to support them both.
I don't even know what I'm hoping to get out of this post, I just felt I needed to vent somewhere. Tonight has been a bad night, I've been upset on and off for hours and barely slept a wink. I'm worried for the future.
Thank you for listening. I hope you are all ok.

Hi AmyR, I thinking writing things down helps I hope you too feel better in the morning. These diseases are so horrid, until you are in the thick of it, you don’t realise the upset.

 

[Izzy]

Welcome to the forum @AmyRxx. I'm so so sorry to hear about your grandad but I'm glad you've found DTP. I'm sure it will help you to share your thoughts and concerns here. There's always someone here to listen.

I wondered if you and your grandma would find this link useful -

https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

 

[DesperateofDevon]

We've known there has been something wrong for a long time now, he finally agreed to have the memory tests done and he's been diagnosed with vascular dementia and alzheimer's. I'm glad we know what is wrong, but he refuses any help and won't accept the diagnosis. I'm struggling because it confirms he isn't ever coming back.
I know this isn't about me and I shouldn't make it about me, it should be about him, I need to carry on with my life as normal but in a way I feel like he has already gone which hurts me the most.
He had a big operation a week or so ago, and visiting him in hospital is really difficult. I try and be strong but I just want to burst in to tears, I try and be as up beat and positive as I can with him, as I find that always seems to help his mood, he's confused but if I go along with his stories and requests, even if he repeats himself over and over again, he seems happier. He knew who I was today but he couldn't remember my name but that's ok. I think him being somewhere unfamiliar has made things very much worse, and I'm hoping as soon as he can return home, he may settle down and be a little better. I can't even imagine how my grandma must be feeling, I just want to support them both.
I don't even know what I'm hoping to get out of this post, I just felt I needed to vent somewhere. Tonight has been a bad night, I've been upset on and off for hours and barely slept a wink. I'm worried for the future.
Thank you for listening. I hope you are all ok.

oh dear, the anaesthetic could have made his symptoms more acerbated. my Dad couldn’t have surgery because of these issues.

Talk to the nursing staff, as family your concerns are valid. Carers are needed to be in place for when your Grandad comes home. He has 24/7 nursing staff now - it can’t be expected for your Gran to do that?

crying is good!

venting is good

Dementia is a daily bereavement process it is normal to grieve bereavement. ((((((((((Hugs))))))))))))

 

[AmyRxx]

Thank you so much for all your lovely replies. Although what we are going through is horrible, it is so nice to know we are not alone.
My grandad is supposed to be coming home tomorrow, he keeps trying to discharge himself from the hospital, my nan is really struggling. I want to help but I don't know how.
Age UK are coming out to their house to assess where rails etc can be put to make his life a little easier, but I don't feel he's ready to come home. I don't understand how the hospital are expecting her to be able to cope looking after him especially with his current mental state. He is really depressed (as would I be, after spending over a week in hospital!) and being very difficult. I understand why the nurses are so desperate for him to go home. He is hard to look after but they also aren't helping, they have been giving him numbers etc to call for support for when he goes home, he has been calling them and arranging things, but to old addresses and then when asked what was discussed, he can't remember. The nurses know his situation so why are they putting him in a position to confuse himself even more. I don't really know what our options are from here. I hate to see my nan so upset.

 

[DesperateofDevon]

I’m afraid your nan has to be a little more pro active & vocal. Social services should be aware of how she feels. Easier before your Grandad comes home. But you can contact the adult social services access team & make them aware of your concerns.

also try the district nurse ...

 

[Louise7]

Unfortunately if your granddad has been deemed fit for discharge the hospital will just want him out as they need the bed, and from personal experience staff are often not very dementia aware.

Are your parents or other family members helping your Nan with all this? As DesperateofDevon has said, social services need to be contacted so that they can conduct a care needs assessment for your granddad and a carers assessment for your Nan. The dementia helpline will also be able to point you in the right direction for help so worth giving them a call:

National Dementia Helpline

0300 222 11 22

Our helpline advisers are here for you.

Helpline opening hours:

Monday to Wednesday

9am – 8pm

Thursday and Friday

9am – 5pm

Saturday and Sunday

10am – 4pm

 

[Bunpoots]

Hi @AmyRxx

See if you can speak to the hospital social worker and make sure that your grandparents have a suitable care package set up at home before your grandad is discharged. I know from my experience last year with my dad that hospital discharge teams are keen to get people out even when they are obviously not fit and just expect people to get on with it.

I’m afraid @DesperateofDevon is right - your nan will have to be prepared to insist that she can’t cope without help.

NHS PALs service may be able to help too. There should be a PALs officer at the hospital but I’m not sure if they work weekends.

 

[Avis]

We've known there has been something wrong for a long time now, he finally agreed to have the memory tests done and he's been diagnosed with vascular dementia and alzheimer's. I'm glad we know what is wrong, but he refuses any help and won't accept the diagnosis. I'm struggling because it confirms he isn't ever coming back.
I know this isn't about me and I shouldn't make it about me, it should be about him, I need to carry on with my life as normal but in a way I feel like he has already gone which hurts me the most.
He had a big operation a week or so ago, and visiting him in hospital is really difficult. I try and be strong but I just want to burst in to tears, I try and be as up beat and positive as I can with him, as I find that always seems to help his mood, he's confused but if I go along with his stories and requests, even if he repeats himself over and over again, he seems happier. He knew who I was today but he couldn't remember my name but that's ok. I think him being somewhere unfamiliar has made things very much worse, and I'm hoping as soon as he can return home, he may settle down and be a little better. I can't even imagine how my grandma must be feeling, I just want to support them both.
I don't even know what I'm hoping to get out of this post, I just felt I needed to vent somewhere. Tonight has been a bad night, I've been upset on and off for hours and barely slept a wink. I'm worried for the future.
Thank you for listening. I hope you are all ok.

It is horrible for both your nan and yourself to watch the decline of someone you both obviously love. I think you or nan should contact social services and arrange some carers to come in a give your nan a hand with him. He is trying to retain as much control as he can and it must be very upsetting for him to when he can't remember things. My husband has good days where he seems fine for a while and then he is gone again. I have him sitting next to me and yet he is not here. I miss him. Your nan must miss the man that was too. Just listening to her and helping with the daily chores will be a huge support. Best wishes.

 

[AmyRxx]

Thank you for all the informative replies. We got the diagnosis from the memory clinic, my grandad refused the CT scan, but after that they've pretty much left us in the dark about everything, offered us no support or information on where to turn for help. I will definitely contact the social services on Monday, the hospital said today he can't go home until rails etc have been fitted.
Mum told me today she doesn't want me to visit anymore for the moment as he is in such a bad state of mind, but I want to. I want to spend as much time with him as I possibly can whatever state of mind he is in. He's my grandfather and has done so much for me ☹☹

 

[canary]

they've pretty much left us in the dark about everything, offered us no support or information on where to turn for help.

Im afraid this is pretty much par for the course. Fortunately you have found this forum, where the experience and advice is second to none.

I will definitely contact the social services on Monday,

You will find the hospital SW will respond quicker. As he is recovering from an op he should be eligible for "reablement" - this is a period of up to six weeks with carers coming in to help him with washing/dressing and generally getting him back on his feet. It is arranged by the hospital and is free of charge. Dont let your nan get fobbed off with no help.

 

[DesperateofDevon]

Im afraid this is pretty much par for the course. Fortunately you have found this forum, where the experience and advice is second to none.


You will find the hospital SW will respond quicker. As he is recovering from an op he should be eligible for "reablement" - this is a period of up to six weeks with carers coming in to help him with washing/dressing and generally getting him back on his feet. It is arranged by the hospital and is free of charge. Dont let your nan get fobbed off with no help.

there should be a needs assessment meeting at the hospital to discuss what help etc is required. This might have already happened. Ask the lead nurse on your Grandads case what the outcome was / if this has happened/ tell them if the issues & ask for a carers assessment!

 

[PeteMid]

The nurses know his situation so why are they putting him in a position to confuse himself even more. I don't really know what our options are from here. I hate to see my nan so upset.

.

Does the hospital have an Admiral Nurse?

Find out more about them here: https://www.dementiauk.org/get-supp...RmHBVutqRp0MCs3uCVYXp49sPrcfA01MaAoajEALw_wcB

 

[Pete1]

Hi @AmyRxx, I've only just noticed your post - sorry to hear about your Grandad, I hope you have managed to get some support for your Nan, it does seem such a lot to deal with, on top of your concerns for your Grandad's condition. You mentioned that Grandad didn't know your name always, one thing I did start doing is introduce myself e.g. Hi Grandad, its only me Amy your granddaughter, I know this does sound a bit daft but it seemed to work (apart from the ocassional 'I know who you are' and took the anxiety over the loved one not really knowing at all times (my Mum sometimes thought I was her husband). All the best, keep posting.

 

[Lea8]

Hi @AmyRxx just came along your post and just wanted you to know you’re not alone. My grandad has this too. He was first diagnosed back in 2012 and it’s only been the past year or so he’s become so much worse. He’s now in the later stages and I’ve honestly never felt such a rollercoaster of emotions. I go and help my nan and grandad as there is no other family close by, and it breaks me every time I leave. My grandad doesn’t know us by name anymore he calls me “the girl”, but one thing dementia can’t take away is love.xx