I am 24 years old, looking after my great grandmother (call her P) at home, along with her daughter, who’s my grandmother. P is 95 and has Parkinson’s/dementia. We all live in the same house, all sleep in the same room now too, as P has been bed bound for just over a year and needs constant 24/7 care. She is coming to her end of life stages now, a stage that seems to be going on forever with no end to it.
I had to quit university and now I am unemployed due to taking care of her. I have no social life, P doesn’t go to any respite so it’s constantly my grandma and I taking care of her. During the pandemic, it’s been really tough having to do everything ourselves, other family members were unable to come in and take over, because we were scared of P catching anything.
My grandma is really devoted to giving her mum the best possible time at home, making her feel comfortable. She tries to feed her at least 6-8 times a day, as P doesn’t eat enough.
I am really starting to lose my marbles. I can’t find the motivation to do anything, I’m really starting to resent them both, P and my grandma, for putting my life on hold, but also really do feel it’s my responsibility to look after her, as P brought me up from a young child. I really don’t know how to feel anymore, I’m just exhausted. Anyone feel the same way?
"I think it’s much harder because I’m dealing with my grandma as well as GGM in this situation and they’re both very backwards people, in the sense of ‘when you grow old, no one but family help out to look after you’. My grandma going on 71 this year, very much stands by that, that she could look after her mum singlehandedly if I wasn’t here, but I can’t let that happen."
Are you going to drop everything -- job, your own family perhaps, friends, to move in with your grandmother to take care of you because she's "backwards"?
Never in a million years would I have expected my daughters to care for my mom. I hate that you quit school. Please go back as soon as you possibly can.
I can’t imagine being a caregiver in my 20’s. I was in my 40’s when I started caring for my mom. She moved in with us in 2005. My brother and his wife cared for mom during the last fourteen months of her life. He has struggled with his own health issues. Mom died at the end of April.
I hope you will be able to to get some rest soon and find time for yourself.
I feel for all of you. I will keep you in my thoughts and prayers.
I’m so sorry for your loss! It’s such a hard concept to get your head around when you’ve looked after someone for so long. That’s the part that’s really thrown me and it’s taking some real getting used to!
We do have a hospice system over here yes, we also have palliative care, which the GP has confirmed both my grandma and I have been doing for a good few months now. We’re caring for her at her final stage now.
Thank you so much, that really means a lot! You take care!
It is not your responsibility to look after your grandmother or P, your greatgrandmother.
Not because you don't want to, or because you don't feel close to them and love them; but because you can't make a decent job of it. You don't have the training or the resources to do it properly. You, or rather they, need more, better help.
Next thing: uni. Were you away at uni and living separately from your family? When did you give up your course? But the actual point is that your education and career are in fact a separate issue from your older family members' care, and you shouldn't entwine the two. If you're experiencing a loss of motivation and direction you need support and guidance for yourself, and it shouldn't be too hard to find.
I don't want to pry into exactly where you live, but it sounds as if the family needs to jump up and down a bit and get the support you're entitled to. Covid has done dreadful things to primary care and community health services - and *it hasn't gone away!* - but all the same: if you have one very elderly lady approaching end of life, and another not much less elderly lady as her primary carer, it's essential to get support. Who's involved? GP, District Nurses, Community Team, Adult Social Care?
I know it’s not my responsibility, and I guess my gold heart landed me in this position. I’ve always lived with my grandparents and P too. I feel like the care system over here aren’t really bothered about whether you’re trained or not, they just see that P is getting properly looked after.
I deferred my uni course once the pandemic hit because everything was kind of put on hold at the very beginning. But then June 2021 (when I was due to start doing online lessons) P fell and fractured her hip, so I had to give up uni for the time being, to help with P as she was bed bound from that point onwards.
I think it’s much harder because I’m dealing with my grandma aswell as GGM in this situation and they’re both very backwards people, in the sense of ‘when you grow old, no one but family help out to look after you’. My grandma going on 71 this year, very much stands by that, that she could look after her mum singlehandedly if I wasn’t here, but I can’t let that happen.
We have had district nurses, memory clinic team, SALT, social care team, physio within the past year come to assess P’s needs. One by one they have discharged her and said there’s not much more they can do. The GP is now involved who basically told us to prepare for the worst soon. So In a sense, I kind of feel like this is the last stretch of GGM’s condition. I think that’s the part that threw me the most, being told that she’s going to pass.
How to apply for free care
https://www.continuing-healthcare.co.uk/?gclid=CjwKCAjwz_WGBhA1EiwAUAxIcXUQ8Z5qAkesjpjS_kGV27QRsuh-aJy-jzPdprxkg--uApaVacjeKBoCZpQQAvD_BwE
How to claim attendance allowance
https://www.nidirect.gov.uk/articles/attendance-allowance
How to claim Carer's allowance
https://www.gov.uk/carers-allowance-unit
I hope this helps.
It’s so hard isn’t it, and I’m so sorry you find yourself in a similar situation! I do really feel for you. Is there no other help from the state that you receive, carers etc?
I know they will too, I can already feel it now I’m stepping out the house a little bit more. Life feels like it’s heading in the right direction. It’s just that feeling of having to come home and face the situation head first everytime all over again that is difficult.
I can totally relate to your situation. You should definitely be getting help from social services, both financial and care.
Do your GGM and GM get attendance allowance and do you get Carer’s Allowance?
The first step is to get in touch with social services and get them to assess your situation and provide some support with care.
if your GGM is nearing end of life you need professional help. You should not have to deal with all this at your age. You must be exhausted.
Whereabouts in the UK are you?
Social services are involved, but that’s more so for end of life care now. It’s a really tough one because P (my GGM) has been blind for over 20 years now, so that and dementia doesn’t really play well together. We tried carers once before and it had a really really negative effect on everything, just because she didn’t recognise other people’s voices!
I do get carers allowance but that’s buttons to be honest, not that I complain, but it’s hard because it’s not enough to live on, especially with this being my full time ‘job’ at the moment.
I’ll maybe speak with my grandma and see about getting carers in again. I’m from the North West of the UK.
not easy, but my experience is this/-just try and get through the next minute, say, if I can get through this minute, breathe, find something good to do for yourself, like read, you tube video, walk, shower, facial, gratitude list. Small pleasures, snuck into daily life
I hope you have better days with your dad, and hope that it becomes a little easier for you to manage. Thank you!
I could definitely do with some resources, thanks so much!
Where is your mom or dad in all this, and why are they allowing this to happen? You are being used and abused, and it looks like only you can say enough is enough!!! I'm sure you love them both, BUT their care is not your responsibility. If great grandmothers care is getting to be just to much for your grandmother to handle, then she should be placed in a nursing facility, where she will receive the 24/7 care she needs, and you and grandmother can get on with living and enjoying your lives.
And if great grandmother is near death, you should be getting hospice involved, as they will send aides to bathe her a couple times a week, and a nurse will come and check on her as well.
I hope you will have the courage to stand up and tell your family that enough is enough, as you are only young once, and it's so unfair what is being expected of you. Now get out there and have some fun!
The sad thing is, my grandma has never told anyone about what she goes through in daily life, and if it wasn’t for me living here, I wouldn’t know myself. She’s always been a very strong and independent woman, and I worry for her mostly, as she’s reaching 70 now. I know that my GGM is being looked after to the best possible standard, but there’s no one watching over my grandma. It’s a really hard one. I guess I put myself in this position. I just feel really stuck and lost. My head just wishes I could put an end to all of this, whilst my heart tells me to put my feelings aside and look after the both of them.
I will mention to my grandma about getting carers in, maybe that is the way forward.
I think what you and grandma are trying to do is unsustainable. Admirable, but likely to cause you both great harm.
Have you got ANY help coming in? Is GGM eligible for hospice? Have you spoken to the local Area Agency on Aging?
Well during the pandemic we haven’t really had much help from professionals as no one would risk coming out to see my GGM. I will mention to my grandma about looking into carers maybe, because this really is taking a toll on me. It’s a really tough decision, because on the other hand I feel a real responsibility for them both.