My Nan has dementia and she lives with us

[Becky_watson]

Hi, I’ve never done anything like this before so if I get something wrong please let me know and I’ll try not to do it again,

As the title suggests my Nan (mum’s mum) lives with us and she has for nearly 8 years now I think, she was diagnosed with vascular dementia and Alzheimer’s after we knew she had dementia because we knew she was scared of it so we chose to get her diagnosed when she didn’t know what it meant and wouldn’t be scared of it, I can’t remember how long it’s been, my mum is her main carer at home but I help out whenever and however I can even if it’s just taking over from mum when she’s getting upset.
we have about 14 hours (I think) of respite a week from a company called crossroads who I would really recommend, that have been amazing with Nan and they are the loveliest people I know, they come and sit with her and play games or do some aqua-painting or colouring or really anything Nan wants for 2-3 hours a day and my whole family is immensely grateful to them and we know that 14 hours a week (non on weekends) is more than most people may get and we’re very thankful to have that time, which is why I feel so guilty for getting upset or stressed or annoyed even because my Nan can’t understand us and we can’t understand her, her dementia is advanced to the point she doesn’t make any sense to us when she talks and we don’t know what it is she’s saying and I feel guilty for not understanding her or for feeling these negative emotions even though I know it’s not her fault or her choice but it’s her disease that’s causing these symptoms of hers.
Last week my mum had a breakdown because of the stress that she was under and luckily we have an amazing admiral nurse that she phoned and who managed to help her, she’s currently taking a few days respite away from it all at home to visit my sister at uni so it’s just me and dad at home caring for Nan, she can’t understand dad and only really listens to me but he’s trying aswell.
I want to try and avoid this situation in the future but I’m 19 and unemployed because i spend every day at home to help mum and she doesn’t want me to postpone my life because of this but I don’t mind as long as my mum is okay and my Nan is okay.

I don’t really know what im wanting from this but my family was recommended this website for help and I felt the need to share and I guess see if anyone has similar experiences or any kind of tips that might help my family because I love them all and I don’t want us to fall apart over this, I also want you all to know that this isn’t a cry for help or anything like that but just advice would be nice or knowing that we’re not alone in this would be great.

I know this is a long read and im sorry for ranting but I just needed to get this off my chest, if anyone has any advice or tips they would be greatly appreciated.

 

[Purple rain 50]

Hi, I’ve never done anything like this before so if I get something wrong please let me know and I’ll try not to do it again,

As the title suggests my Nan (mum’s mum) lives with us and she has for nearly 8 years now I think, she was diagnosed with vascular dementia and Alzheimer’s after we knew she had dementia because we knew she was scared of it so we chose to get her diagnosed when she didn’t know what it meant and wouldn’t be scared of it, I can’t remember how long it’s been, my mum is her main carer at home but I help out whenever and however I can even if it’s just taking over from mum when she’s getting upset.
we have about 14 hours (I think) of respite a week from a company called crossroads who I would really recommend, that have been amazing with Nan and they are the loveliest people I know, they come and sit with her and play games or do some aqua-painting or colouring or really anything Nan wants for 2-3 hours a day and my whole family is immensely grateful to them and we know that 14 hours a week (non on weekends) is more than most people may get and we’re very thankful to have that time, which is why I feel so guilty for getting upset or stressed or annoyed even because my Nan can’t understand us and we can’t understand her, her dementia is advanced to the point she doesn’t make any sense to us when she talks and we don’t know what it is she’s saying and I feel guilty for not understanding her or for feeling these negative emotions even though I know it’s not her fault or her choice but it’s her disease that’s causing these symptoms of hers.
Last week my mum had a breakdown because of the stress that she was under and luckily we have an amazing admiral nurse that she phoned and who managed to help her, she’s currently taking a few days respite away from it all at home to visit my sister at uni so it’s just me and dad at home caring for Nan, she can’t understand dad and only really listens to me but he’s trying aswell.
I want to try and avoid this situation in the future but I’m 19 and unemployed because i spend every day at home to help mum and she doesn’t want me to postpone my life because of this but I don’t mind as long as my mum is okay and my Nan is okay.

I don’t really know what im wanting from this but my family was recommended this website for help and I felt the need to share and I guess see if anyone has similar experiences or any kind of tips that might help my family because I love them all and I don’t want us to fall apart over this, I also want you all to know that this isn’t a cry for help or anything like that but just advice would be nice or knowing that we’re not alone in this would be great.

I know this is a long read and im sorry for ranting but I just needed to get this off my chest, if anyone has any advice or tips they would be greatly appreciated.

I really feel for you!
I’m not in the same situation as you but I know how hard it is watching people you care about decline & also to see how hard it is for your mum.

You’re right about crossroads - I’ve been in touch with them & they were lovely but my mum is very resistant to having “strangers “ in to help at the moment (although we’re getting to the point this will be necessary)

Have you talked with your family about your Nan needing full time care elsewhere. It’s something I’m starting to think about & there are lots of useful posts on here.

Im sure you’ll find lots of support from this forum & don’t worry about long posts - sometimes it just helps to write it down (sometimes I bore myself talking about it to people who aren’t in the same situation 🤪)

 

[northumbrian_k]

Hi @Becky_watson and welcome to our supportive and friendly community. Thank you for having the courage to share your story with us. I hope that doing so has helped you a little. Please do come back here at any time, whether you have questions, have something to share, wish to join in other conversations or need to let off steam.

 

[Bod]

Fear not, your situation is far from unique.
It’s clear that mum needs more help, local Social Services can assess mums and nans needs, advising how to get the best help available.
The stumbling block is often Carers not being allowed to work, by the current carer not feeling the need to have “strangers” in the house, or the PWD being the same!

Bod

 

[Grannie G]

Hello @Becky_watson

There is never any need to apologise for posting. This is what the forum is for, so carers can say what they wouldn`t want to say to the family, in case they cause more upset.

You have spent half your life caring for your Nan. She is lucky to have such a wonderful family to look after her, even though she is really unlucky to need that care in the first place.

It sounds as if she is becoming more difficult to manage now and it would be helpful to the whole family if a period of respite care could be organised so you can all have a break.

Why not suggest this with your Admiral Nurse or with the manager of Crossroads.

 

[forgetmenever]

Oh @Becky_watson your parents must be so proud.
Your situation is very similar to ours. My mum lives with us, she has Alzheimers and Vascular Dementia. I am my mums main carer, but I couldn't do it without my 20 year old daughter. My husband and sons don't get involved in the care at all, but my daughter...she's just amazing.
Dementia is so cruel, to everyone involved. Sending you and your mum lots of love and support, from a fellow mum and daughter team ❤️ xx

 

[Becky_watson]

hi, I thought I’d just do a quick update I guess and say thank you to all of you that have offered advice and for your lovely comments, I feels really nice to know that our situation isn’t unique or anything like that.

Because of what happened a few days ago, our admiral nurse called social services to see if there was anything they could do to help and see if she could organise an emergency respite placement at a care home for my Nan and at first we thought that it was a great idea and we were really appreciative of the offer however when we really thought about it we realised that yes it would be great while she was there, but when she got home she would most likely be worse and more confused and we would be back in the same situation as we were before.

The last time she had a change to her routine was about 2 months or so ago when my mum had a hip replacement and so she was in hospital for a couple of days and the two carers that come and get nan dressed in the morning and into her pyjamas at night went on holiday, we think it was because of this change that nan got a lot worse very quickly and we had to stop the evening carer from coming because she was starting to get very stressed and slightly aggressive so now I do the nights, but because of this experience we didn’t take the place my at the care home even if it was just for a few days because we don’t want that happening again, however social services have managed to find a day centre close to us that might be able to take her for a few hours and we’re hoping we’ll hear back about that soon.

Again thank you for all of your support and kind words, I really do appreciate it .