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I'm a terrible person

User
Posted 24 Jul 2019 at 07:02

Hi all,

 

I feel in need of a rant.

Right now I feel like the worst person in the world for feeling full of resentment in my roll as a carer.

Since my 88 year old father's metastatic prostate cancer diagnosis 6 years ago,  

I took on the task of organising all of his medication, regular blood tests, scans, x-ray's, doctor's appointments, oncology appointments and hospice visits,

I accompanied and drove him to every appointment, researched and arranged extra treatments, as well as regular shopping, ironing, and housework, along with looking after my mother now aged 93.

As an only child, divorced and not working everything fell to me, my own kids conveniently live far enough away to be no help whatsoever.

I should also add that my father has extensive bone metastasis, and 9 weeks ago he suffered extensive lower back pain, that was diagnosed as several small spinal fractures 

He was admitted to hospital for a period of four weeks.

I visited every day, and we were eventually informed that there was no further treatment available, and palliative care was now the only option available.

My father then received CHC fast track funding which was duly awarded.

This is when the problems really began.

As my parents live in a tiny one bedroom house, there was no room for the required hospital bed and equipment.

Therefore it was either discharge to a nursing home or to me, so I took on the care and accommodation of both my mother and my father.

I have lived on my own in my own space, and done things my own way for the last 15 years.

My home and my personal effects have been disrupted, furniture has had to be dismantled and stored, and I have a hospital bed in my lounge.

I am a carer 24/7 and I can't get away from it except to go grocery shopping.

I hear the same repeated conversations and questions all day every day until I could scream.

My mother is no use to man nor beast, she is either crying for what's going to happen when my father dies, or she sits on the sofa, staring at him all day long, like the grim reaper, the only thing missing is the cloak and scythe.

I was given the impression when I took this on that my father only had a matter of weeks to live, however he seems to be stable and I don't think he's going anywhere  soon.

Had I known then what I know now, I honestly don't think I would have taken it on.

I'm impatient, snappy and full of resentment, I'm 63 and I feel like I've been surrounded by death and dying for the last 6 years, and my own life is ebbing away.

I literally have no friends and no one to talk to.

I have always had a terrible relationship with my mother for all of my life, so that's not helping either.

Even if someone came and sat with them whilst I had a break, my mother doesn't like strangers, and a 3-4 hour break once a week, is not going to make me feel any different.

I feel I couldn't possibly say I can't do this anymore and put my father in a home, having said I'd take it on, I feel honour bound to see it through.

If I had some idea how long this would go on for, there would be light at the end of the tunnel, but it's an unknown quantity.

And yes, when my father dies, my mother will return to her own home, and I have already made it clear that I will visit 2-3 times a week, and no more than that, as I need to have a life of my own.

I don't know what I expect any of my fellow carers to say to me really, as I say I feel awful and guilty for feeling the way I feel, but for once in my life I'm being honest, instead of saying what's expected of me, I'm saying exactly how I feel.

Thanks for letting me rant x

 

User
Posted 05 Aug 2019 at 14:48

I can totally relate to your post and everything you are feeling I felt it to, we were told In Jan this year that my Dad only had weeks and as a small family and the only child living near by I moved in with him so he could pass at home. I soon realized that this journey would be a lot longer and a whole lot harder and found myself having to do things as his daughter I found very difficult. It was 24/7 and after a while I knew for my own well-being I needed help as it looked like weeks were now months and It honestly felt like I could have been doing this forever as my dads health wen't up and down. I felt every emotion going, anger, guilt, resentment, loneliness, waves of sadness and it was one saying from an amazing woman from St Lukes that helped me. She said "There will be a time where you have to stop being his carer and become his daughter, Let others help you and just be there for him and hold his hand". She found a lovely Nursing home near my house and I packed his belongings and took him in, I remember walking out and leaving him that first day and I couldn't stop crying I was an emotional wreck through guilt and relief that I could finally breathe. The guilt I felt was enormous I had failed in my duty to care for him but looking back now it was the best decision I have ever made for both of us. The staff are amazing and I visit him everyday, all his care and medical needs are no taken care of and I can sit hold his hand and talk about childhood memories and the fun things we used to do. We are now coming to the end of my dads journey and I will be saying goodbye to him any day now, it has been a difficult couple of weeks with my dads confusion,agitation, loss of mobility etc. he often needs two to three people moving him around and I know I would never have managed on my own. What I wanted to say is always be kind to yourself this journey is horrific don't ever feel guilty for doing whats right for you. I know that my dad had the best care right up until the end and our time spent together was filled with childhood memories and not ones where I'm stressed, angry. I just wanted to write to you as someone who can totally relate to your story but is coming out on the other side. Take care of yourself it won't be like this forever. x

User
Posted 24 Jul 2019 at 10:09

Another thing, go along to you GP and get them to register you as a carer. That will get you access to some further help services and also talk with your GP about your feelings. They may refer you for additional help. It's in their interests to keep you well.

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User
Posted 24 Jul 2019 at 09:40

Hi,

Thanks for the reply, I am in touch with the hospice and have been for some time.

My poor relationship is with my mother, not my father.

 

And so it continues.

User
Posted 24 Jul 2019 at 09:41
I think your rant is quite fair. Your entire life has been squashed by all this so that you have no life at all. But you will get it back I promise. I’m determined to be as minimal a burden as possible to my wife and young kids when the time comes. Take care of yourself x

If life gives you lemons , then make lemonade

User
Posted 24 Jul 2019 at 09:49

Thanks for the reply Chris x

User
Posted 24 Jul 2019 at 10:05

First, put out of your mind that you are a terrible person - you are doing a fantastic job. The job is hard, all carers go through what you are feeling at some point.

Please contact Macmillan, probably via your father's hospital. They have support networks for carers, and can get you engaged, and in many areas can provide help.

The emotions when you go through something like this are enormous, and when your father does die, you will probably feel guilty for the thoughts you had, but they're all entirely natural and nothing to be ashamed of - he is extremely lucky to have you.

User
Posted 24 Jul 2019 at 10:09

Another thing, go along to you GP and get them to register you as a carer. That will get you access to some further help services and also talk with your GP about your feelings. They may refer you for additional help. It's in their interests to keep you well.

User
Posted 24 Jul 2019 at 14:14

I really feel for you, it must feel like a trap. Do you have any space to yourself where you can do some hobbies or a garden where you can escape? You may be able to get some help from a voluntary organisation where someone could sit with your parents or is there a daycare centre where they could go to give you a breather on your own? 

Maybe they could both go for respite care for a week or two to let you  have a holiday?

I know it is hard but sometimes you have to let others take responsibility while you recover.

Wishing you well

 

User
Posted 24 Jul 2019 at 18:28
You are certainly not the worst person in the world. Until you have been a carer yourself you don't know what it involves do you ?. Hang on in there and things will get better in time. Very best Gary.

User
Posted 24 Jul 2019 at 21:20
My understanding of CHC funding is that it is money to provide what you need to care for him, including respite and / or care assistance. Don't feel guilty about spending it on whatever is needed to help you cope. If the CHC funding isn't enough, you could also apply to the local authority for a carers' assessment under the social care act. The hospice or Macmillan usually have someone whose specialism is helping families happily for the right benefits and support services.

Seems harsh but I don't think it matters whether your mum likes other carers coming in ... if you break, she will have no choice.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jul 2019 at 08:20
If your mum is adding to the burden why not send her home now?

Have you asked your kids for help? Have you told them how desperate you are ? You might be surprised you may also need to learn to let go of some of the responsibility, you can't do it all forever.

User
Posted 25 Jul 2019 at 22:00

hi 

hopefully you are feeling better and following up these suggestions. 

Would you share your post and thoughts with your father?

your mother ?

What are your father's wishes ?

Can you move into their home  ?I'm not being facetious. 

 You need rest , space and distance .  Impartial advice and active support.  It is available.  as others have posted.   Vol. orgs , local carer groups.  People will help.

 

all the best.   

User
Posted 05 Aug 2019 at 14:48

I can totally relate to your post and everything you are feeling I felt it to, we were told In Jan this year that my Dad only had weeks and as a small family and the only child living near by I moved in with him so he could pass at home. I soon realized that this journey would be a lot longer and a whole lot harder and found myself having to do things as his daughter I found very difficult. It was 24/7 and after a while I knew for my own well-being I needed help as it looked like weeks were now months and It honestly felt like I could have been doing this forever as my dads health wen't up and down. I felt every emotion going, anger, guilt, resentment, loneliness, waves of sadness and it was one saying from an amazing woman from St Lukes that helped me. She said "There will be a time where you have to stop being his carer and become his daughter, Let others help you and just be there for him and hold his hand". She found a lovely Nursing home near my house and I packed his belongings and took him in, I remember walking out and leaving him that first day and I couldn't stop crying I was an emotional wreck through guilt and relief that I could finally breathe. The guilt I felt was enormous I had failed in my duty to care for him but looking back now it was the best decision I have ever made for both of us. The staff are amazing and I visit him everyday, all his care and medical needs are no taken care of and I can sit hold his hand and talk about childhood memories and the fun things we used to do. We are now coming to the end of my dads journey and I will be saying goodbye to him any day now, it has been a difficult couple of weeks with my dads confusion,agitation, loss of mobility etc. he often needs two to three people moving him around and I know I would never have managed on my own. What I wanted to say is always be kind to yourself this journey is horrific don't ever feel guilty for doing whats right for you. I know that my dad had the best care right up until the end and our time spent together was filled with childhood memories and not ones where I'm stressed, angry. I just wanted to write to you as someone who can totally relate to your story but is coming out on the other side. Take care of yourself it won't be like this forever. x

User
Posted 06 Aug 2019 at 14:42

Women are often the salt of the earth.  You did your duty up to his time in hospital after that it was beyond duty.  Your mother is 93 and getting her back home could be a task. It needs a double plan to get your father care and your mother sorted.  A nursing home for both together could be beyond expectation but I'd be working on it while thinking how mother will cope alone for the first time at some stage.  Do neighbours help where your mother lives. My father went blind and lived alone for 15years with me going once a week or on call, neighbours and home helps. My dad was never good at domestics and lived mainly on chocolate and whisky but lasted to nearly 90.  I wouldn't feel bad about it you will still have enough to do and have it in the back of your mind most of the time and that's bad enough.

 
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