Anyone else with an elderly relative reaching end of life?

[Cheekypeach]

My granddad is in his mid 90s. He’s in hospital after a serious fall and very weak. He just seems to be fading out.

As well as being sad, I also feel quite angry for years we have been worrying about him and my granny. They’ve refused to go into a care home despite being very infirm and having regular falls, instead choosing to live in a retirement flat with minimal support. All help we have tried to arrange for them has been refused or dismissed after a couple of weeks. Every time they’ve had an accident we have dropped everything to rush to them, but it’s been exhausting, and to be honest this last couple of years I haven’t visited as much as I should (I live a few hours away and have a toddler). They’re quite hard work and I’ve just dreaded it. So now I also feel crushing guilt.

My dad (their son) buggered off abroad several years ago, so now it is down to us to sort out what happens to granny who is in hospital as well, but only because she cannot safely go home alone. It all feels like a mess that could’ve been avoided.

Is anyone else in a roughly similar position that wants to chat? Am I an awful person?

Sorry you are facing this. The only thing I would say is that don't judge them to harshly for refusing to leave their home. A familiar environment is VERY important to the elderly and especially those with dementia. It's entirely understandable they didn't want to leave and while it may not look rational to you, it's no bad thing to support their choices.

If you can manage it, I would see if you can get them both home using carers or a hospice to provide paliative care at home. No one wants to die in a hospital.

I was recently told by a senior consultant (dr) that he'd flown abroad to retrieve an elderly aunt from hospital so she could die at home. His advice to me was when the end is near, if you can keep them at home or get them at home with medical assistance for pain relief/support if it's necessary. It really stuck in my mind.

Don't feel guilty though because they are adult, not stupid and perfectly entitled to their own choices however much you may not like it. Plus they do have you as support - so you don't need to feel guilty.

Op - you are not an awful person. Frankly you sound amazing. We don’t give ourselves enough credit on here. Especially as your Dad has buggered off and left you with the responsibility. It’s very common that people resist and refuse help and try to maintain the appearance of independence at all costs, even if their actions are ultimately more damaging. IMO too much social services are too quick to pander to the rights of the individual to neglect themselves, probably because it saves money until a crisis arises. Make sure you get support too.

Unfortunately your situation is far from unusual. Been there both personally and through work. If they do not have capacity following a social services you can make decisions for them.

The mixture of emotions is so normal, I arrange funerals and the feeling of relief and guilt is so common.

If there is any specific about the mental capacity assessment you need to know I can try and help, it's been 4 years since I did it though (and got 100% funding from nhs continuing care)

@gogohm unfortunately unless OP has power of attorney for both finance and health and welfare she won’t be able to make decisions for her grandparents if they lack capacity to do this for themselves. The multidisciplinary team looking after them will have to make a decision that is deemed to be in ‘their best interest’

Thank you everyone. So kind to take the time to reply. My family is extremely difficult and high-drama, my grandparents have been quite instrumental in this over the years and when my daughter was born, I just didn’t have the mental space to listen to it all anymore. So I dropped down to visiting a few times a year, which I’m sure they noticed. It does make me feel so guilty but for 15+ years before that I saw them incredibly regularly, so I’m trying to see the overall picture and forgive myself. My granny definitely doesn’t have the mental acuity to make decisions for herself, but he did & decided everything for her. I don’t know what’s going to happen to her now.

I can fully understand why your DF buggered off if he had to drag you along for 15 years to witness his parents in action.
And props to you for cutting back visits and prioritising your newborn.
If anyone’s DGPs and DPs don’t put in any future proofing plans like POA, having bedroom and wash facilities on same floor then they can’t expect family to drop everything on multiple occasions.
I am sorry DGF is so ill but you sound like a really good granddaughter.

Going forward, if DGM has no capacity and no POA in place, then a family member has to apply to the courts for guardianship.
If your DF returns in the coming weeks sit down with him and tell him to get on with it

Thanks @Mum5net

Part of me wishes I had just summoned the resolve to keep visiting very regularly after having Dd and moving away, but after 15 odd years of family drama and the ‘adults’ in my family refusing to make sensible choices, I had nothing left and had to pull back for my mental health.
I’ve tried very hard with them over the years but they’ve refused to acknowledge their frailties. I have just found out they stopped paying the bill for their twice-weekly cater that I arranged, and are in significant debt to the agency.
My dad squeezed childcare out of them when they were younger, but the moment they because extremely frail he fucked off abroad, leaving his kids (who now have babies/toddlers) to support them.
It’s all a mess. I have resolved never to make my daughter feel the same level of responsibility toward me that I have to my relatives.

I am afraid that I struggle to understand how you could have over the last few years effectively left them to it when it was apparent that they needed you the most after having been so close. So I'm not surprised that you feel guilt, I would too. And please don't think that I'm guilt tripping you, I'm not. I know how hard caring for relatives is, as I have and remain doing so as well as working and being a lone parent.

I have been in the same situation you're in with your grandfather to have countless miraculous recoveries, so atm, I'd try to focus that this too could be the case for you. 🤞

Practically, if he dies, you need to support your grandmother to come to terms with this and make choices about how she wishes to live moving forward, at Home with carers, residential care or with a relative. Would you be able to house and care for her with you? Could or would another relative? It would be preferable if she was able to make her own choices.

Remember that if she goes into residential care, the likelihood is that on top of Losing your grandfather, you'd be losing her in quick succession too. It may not be too late to get POA for her though, it takes approximately 8 weeks.

My grandad died in hospital earlier this week.

One the one hand, I am happy for him that he didn't get to the stage where he would require the level of care in his home that would have been upsetting for him. He would have needed daily care with washing and dressing etc. had he been able to come home. My Grandma was very worried about him dealing with this loss of dignity.

OTOH, he and my grandma were unable to see eachother for the last 3 weeks of his life 'because Covid'. Neither of them had it, and both had dutifully got all three jabs. I'm quite frankly livid that the hospital felt this was acceptable for a man on a DNR who we knew didn't have long left.

@ChoiceMummy

I am afraid that I struggle to understand how you could have over the last few years effectively left them to it when it was apparent that they needed you the most after having been so close. So I'm not surprised that you feel guilt, I would too. And please don't think that I'm guilt tripping you, I'm not. I know how hard caring for relatives is, as I have and remain doing so as well as working and being a lone parent.

I have been in the same situation you're in with your grandfather to have countless miraculous recoveries, so atm, I'd try to focus that this too could be the case for you. 🤞

Practically, if he dies, you need to support your grandmother to come to terms with this and make choices about how she wishes to live moving forward, at Home with carers, residential care or with a relative. Would you be able to house and care for her with you? Could or would another relative? It would be preferable if she was able to make her own choices.

Remember that if she goes into residential care, the likelihood is that on top of Losing your grandfather, you'd be losing her in quick succession too. It may not be too late to get POA for her though, it takes approximately 8 weeks.

There are lots of reasons. Firstly covid, they didn’t want visitors from February 2020 until they were vaccinated. I then moved house and live 3 hours away, I have a 2 year old and am working full time as well as studying for a professional degree. Unfortunately something has to give, and after many years of supporting them & going very much out of my way to visit regularly, I just couldn’t keep up with it any more.

Housing and caring for my granny here is absolutely not achievable. She’s mid 90s, very frail and has significant memory and mood issues. I live in a Victorian house with 2 flights of stairs, I have a toddler, I work full time & study on top, and my bathroom isn’t at all suitable. Plus we have no free bedroom.

Unfortunately she doesn’t have the luxury of making her own choices - she did for many years, but didn’t put any sensible plans in place, and now her needs have reached a critical point where very few settings bar a care home could keep up with them.

I have to be honest & say I hope you didn’t grasp their age and level of need from my OP, because your suggestions are very much pie in the sky.

Can I just add at no point have they been on their own, or abandoned. All along I have been doing their admin, arranging carers and cleaners, phoning them, sending cards. It’s just my physical visits dropped from every couple of months to a few times a year. They have my aunty (their daughter) who lives close ish, and visits regularly, as do my two sisters who live in the local area.

They've been happy to have everyone running round after them all this time? Refusing carers but ok with busy family picking up the slack. I'd be angry too. It's not ok to insist on staying in familiar surroundings at the expense of others. The guilt should be theirs. Utterly selfish.
I saw this as a district nurse for many years. Elderly people refusing to pay for help, staying in unsuitable living conditions, falling about all over the place, in and out of A& E like a revolving door. Refusal to spend money very often at the heart of it.
I would think very differently of parents or GP putting you in this avoidable situation. Absolutely no reason to be guilty.
And POA currently takes several months. I applied in the summer and am still waiting.

I have been in this situation a few times, so I can empathise, it’s so difficult. You can only do your best, your DC needs to come first.

Your DGM and DGF have made their own decisions. Let them reap what they have sewn. Give the hospital your DF’s name and number abroad as next of kin and stay out of the picture.
You live 3 hrs away and don’t have power of attorney for your DGM who has no capacity.
The social workers in her local authority will have to get involved. Honestly, if you have tried and tried and tried then please feel no guilt. Feel anger and frustration for a little while but try then to compartmentalise feelings and then let your DGM face the consequences of she and her husband refusing the help offered.

Yes, they have made choices, but very few people, proportionately, choose to go into residential care if they can avoid it. Especially, when a couple.

Op, it sounds as though you chose to move as well as your other life choices, knowing that you'd be physically leaving your vulnerable grandparents. So now you need to own those choices and that you were 'caring from afar'.

@ChoiceMummy

Yes, they have made choices, but very few people, proportionately, choose to go into residential care if they can avoid it. Especially, when a couple.

Op, it sounds as though you chose to move as well as your other life choices, knowing that you'd be physically leaving your vulnerable grandparents. So now you need to own those choices and that you were 'caring from afar'.

I’m 29. Did you live out your days in the same town as your parents and grandparents, until they all passed away?

@ChoiceMummy

Yes, they have made choices, but very few people, proportionately, choose to go into residential care if they can avoid it. Especially, when a couple.

Op, it sounds as though you chose to move as well as your other life choices, knowing that you'd be physically leaving your vulnerable grandparents. So now you need to own those choices and that you were 'caring from afar'.

I think this is typical MN hot air, ‘I would’ve done this…’ yeah but you didn’t have to, did you? If your child said they were going away for uni at 18, would you say ‘STOP, you can’t leave your grandparents’? I don’t think you would…

You're not awful, it is really tiring. My dear grandpa died 3 years ago aged 93 and the last few months were exhausting for my mum having to drop everything whenever there was an emergency - he had cancer but was mentally fine and otherwise OK to be at home, but obviously there were lots of worries. But my parents couldn't go away anywhere for months and it was a strain on my mum's poor health (and he wasn't even her father) Its understandable to be angry and wrung out.

My stepgrandma (GP's second wife after my GM died when I was young) is now in a very bad way and my dad is kind of having to tell my mum not to take too much on - SG has her own children who can take that on). But SG is now getting confused at home and not knowing where she is, but is also, like most people, not wanting to go to a home as well. Sadly with the dementia progressing, and also her eyesight going, it's really not safe for her to be living alone now, so we're just hoping her DD will be able to convince her. :(

I'm sorry about your grandad. I think you've done what you could and it sounds like they have other family around. Its hard when what seems obvious to 'us' isnt accepted by the grandparents/parents.

Whats happened now is basically a crisis point, the full extent of helplessness has been masked and only exposed once your grandad was admitted to hospital, so without a power of attorney what happens to your grandparents largely depends on their social worker, what savings they have and whether they can get a care package in place.. Your family should be VERY (VERY!) clear what they are willing to do (and not d) your grandparents if they do end up back at home. Home visits by carers are likely to infrequent with a lot of onus on family to do the care. In some areas theres a sort of half way house for a few weeks -a short stay nursing home where they can be assessed for their needs and what care is required.

Don't beat yourself up. They had choices, they might not have been necessarily 'good' choices but you couldn't force them to accept outside help. You live a great distance away and have a family of your own, plus all the other things you've got going on. No one should expect you to drop everything and go and be a carer, or even up your visits at the potential detriment to your mental and physical health and your relationships with your immediate family

OP i dont think you have anything to feel guilty about. This isnt your parents we are talking about, this isnt your responsibility.
Your grandparents made their own decisions and lived the lives they wanted to.
I think you should take a step back and concentrate on your own family, your DGM has her own daughter around to make arrangements for her on going care - and of course your dad if he returns to the UK.

At 29 and with 90yo grandparents, it was hardly like you'd need to be waiting decades was it?
And yes, I did move away for uni at 18, 11 years your junior. Then returned and have cared for 3 family members until death and now 4th
That's what love and family is about imo.

@ChoiceMummy

At 29 and with 90yo grandparents, it was hardly like you'd need to be waiting decades was it? And yes, I did move away for uni at 18, 11 years your junior. Then returned and have cared for 3 family members until death and now 4th That's what love and family is about imo.

How selfish of you. What if they’d needed you during that 3 years? Think of other people, Choicemummy.

Please don’t feel guilty. Pop over to the cockroach cafe on this board and read the stories there.
No judgement or guilt allowed.
You have done your best , and they made choices.

Thanks @thesandwich I posted there a little earlier