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Grieving before death - Carers UK Forum

Grieving before death

A place for those 18-35 to chat about all things caring.
I find myself grieving the suffering and feeling guilty because they haven't died and I guess I should feel lucky that they are still with us. My dad has been ill since I was a small child, I don't remember a time when he could walk though I have seen videos. Over the years he has gotten progressively worse to the point where he is now in constant agony and suffering without relief. The drs have essentially said there is nothing more they can do, they cant treat him but his illnesses aren't terminal so its not even like thats a close inevitability either. I feel like a horrendous person because I sometimes think he would be better off dead because he wouldnt be suffering but equally I dont want to lose my dad. We dont have the best/closest relationship which is a lot to do with his illnesses but we also just dont see eye to eye on a lot of things. I love my dad but watching him suffer like this feels so cruel and its breaking my heart a little more everyday.
Progressive illnesses are in many ways the worst to deal with as a carer. The person you love seems to diminish every day, physically, mentally, or both. And you go through a new level of grief at every stage.

It's not unusual to want the suffering to end: it's love. And it's the love that makes you feel guilty for thinking that way, and makes you want more time with them. It's perfectly natural and it's perfectly ok.

Your Dad might even be thinking along similar lines. Not that he's likely to admit it. I can't speak for your Dad, but I know that if I were in his position, I'd feel guilty as hell that you were stuck caring for me and not getting out there and having the life you would choose for yourself. And I'd want to have as much time with my daughter as I could manage. And some of that will probably be driving the differences in opinion on so many issues.

Do you have any help coming in from outside, like care workers, physios, anything?
Welcome to the forum, I'm very concerned for you, as it sounds like you have never been free to live your own life. How old are you and dad, what exactly is wrong with him?

Where is mum?
Are you an only child?
I don't know how to send individual replies to responses but thankyou both for responding.

I should say I am no longer my dads main carer - I am 30 now but left home at 16 and have my own place now. My dad has carers that go in 4 times a day because he is unable to do most things for himself and is on a huge amount of medication. I am essentially the next of kin/ emergency help like for example last week I had to stay over at his house in case he needed an ambulance as I was having difficulty breathing and the carers dont come on a night time.
My parents arent together and my mum has various health problems herself which means she is unable to care for him. I also care for her, but she lives in an assisted living place and doesn't need as much help. Its mainly just things like shopping and stuff like that.
My dad has so many health problems, many they cant diagnose but the main ones are ME, MS, Fibromyalgia, Addisons disease, a number of bowel and stomach issues, diabetes, arthritis, recurrent infections throughout his body that the meds dont touch now because he has been on them so long. There are loads more but i cant remember them all.
Mum has a heart condition - Atrial Fibrillation, high blood pressure, rheumatoid arthritis, depression.
I have an older brother but he lives in a different country and has his own issues to contend with so he isnt around to help.
I have a good support network in my church and with friends but they don't understand just how difficult it really is. Everyone always says I am a good daughter because I am always there for them and will drop anything if they need me because I love them so to tell them that I cant handle it emotionally would make it sound like I dont care about them when I do I just find it very hard.

You are totally right, obviously I don't want him to die but because I love him I dont want him to suffer either. I feel selfish saying this but sometimes it feels like I am not allowed to feel distraught about it because I am not the one who is suffering. Except I am suffering, i may not be in physical pain but emotionally I am suffering a lot. I am not trying to make it all about me but I honestly don't know how I am supposed to go through this constant grief without breaking. As you said, its a new layer with every new diagnosis, every wince of pain I see or every conversation we have.

I know I cant make him better, I cant make either of them better and the reality is that they are both going to continue to decline but watching that happen is absolute torture
Ok, well I'm glad there's some support there for you, even if it's limited.

Bowlingbun is right that you need a Carers Assessment to look at your needs, especially around regular breaks - perhaps to go to groups that offer carer support, or even groups that do nothing of the sort but support a hobby you struggle to find time for at home? Something that gives you the chance to just switch off for a while. And to make sure that social services understand that you need to set limits to protect your health.
Elizabeth_1906123456 wrote:
Mon Jan 17, 2022 11:17 am
I don't know how to send individual replies to responses but thankyou both for responding.
. . .
Hello, Elizabeth. I am so sorry to hear about your sad situation. Your conflicting feelings of wishing your dad would die, and be relieved from his suffering, against you wish to have him, are quite understandable.

The main idea of this forum is to share your feelings, difficulties, experiences, advice, etc. with others. However there is sometimes a good reason when you may wish to send an individual response. To do this, click top right, where it says "Private messages", then on the next screen click "New PM". You can send message to any member, and they can reply privately.
I have a good support network in my church and with friends but they don't understand just how difficult it really is. Everyone always says I am a good daughter because I am always there for them and will drop anything if they need me because I love them so to tell them that I cant handle it emotionally would make it sound like I dont care about them when I do I just find it very hard. . .
I wonder if you can be slightly more open about your feelings and problems with your support network? They could well have some comforting ideas.
Elizabeth_1906123456 wrote:
Sun Jan 16, 2022 11:03 pm
I find myself grieving the suffering and feeling guilty because they haven't died and I guess I should feel lucky that they are still with us. My dad has been ill since I was a small child, I don't remember a time when he could walk though I have seen videos. Over the years he has gotten progressively worse to the point where he is now in constant agony and suffering without relief. The drs have essentially said there is nothing more they can do, they cant treat him but his illnesses aren't terminal so its not even like thats a close inevitability either. I feel like a horrendous person because I sometimes think he would be better off dead because he wouldnt be suffering but equally I dont want to lose my dad
Thank you for sharing this, I know that it is scary to say out loud. Sharing experiences helps others know that they are not alone and helps you to fine people who are not alone.

I'm in a similar situation with my mum and mental illness, I feel like I am grieving for her when she's still here. I've been her carer since I was 7 and she's just become progressively worse. It can be super overwhelming and you do end up feeling guilty for just wanting their suffering to end. But as someone said above - that's because we love them!

If you ever want someone to talk to who understands please feel free to reach out and connect. No pressure!
My mum in law didn't have any health issues until she was about 75, when she sadly developed dementia. They lived in a small cottage but my husband and I and kids, plus sister in law and her husband and kids, were often all having happy family meals there, sharing all sorts of normal family things.

My own parents, both only children, lived in a bigger bungalow, lots of room for family gatherings, for me and my two brothers and respective partners and children, but we never EVER had a meal together there, my parents never ever entertained, at all. Mum always had health issues. I would have loved to have an aunt and uncle, cousins to play with etc.

I feel so sad that we don't have any happy memories of all of my side of the family together, laughing and joking at my parents house, no photos of happy Christmas parties. Parents with poor health affect everyone else too, like the ripples on a pool.

Sadly, I'm also acutely aware of the impact of my younger son, brain damaged at birth, has had on his elder brother. They are now 43 and 45. No happy laughing cousins for my grandson, so the ripples continue.

It helps sometimes to voice these feelings, but only others in a similar situation understand.