Hello, I am new to the forum after reading other people’s issues for a while I felt like people may feel the same way as me and maybe have some advice. I’ve been caring for my 71 year old father for the past almost 3 years, he suffered a bad stroke and already had Parkinson’s disease which had a knock on effect when he had the stroke and I landed the role of carer. I am 24 years old, so at the time I was had just turned 21 years old and as a normal 21 years old I enjoyed my freedom and had just met my now still partner and we were on the way to get our own life started and just enjoy being young, when my dad got unwell. We live with my Dad so I work 50 hours a week and when I’m not at work I’m his carer, he has carers in the day who do his meal times but I don’t have any other help and no family who can take the reins for a bit. I am finding it really hard too not loose my patience with him more than ever I say horrible stuff sometimes and then instantly regret it , when I was younger he used to drink a lot and I just wish he would have looked after himself more and we wouldn’t be in this position it sounds awful but I just want my own life back and just to be a normal 24 year old with my partner and our life ahead of us plan to have a baby you know the sort of normal things, but it is so hard I almost live in constant stress trying to look after him and be my own person I dread and fear him getting worse which of course in the end he will , if I’m finding it hard now when he’s sane how will I cope in the long run. Does anyone have any tips on how not to loose patience with their family they care for? I feel like I do everyday and then I feel awful on my dad but I am just stuck in a rut, I feel like I don’t know when this will end will it be too late before the years slip away from me, my dad would NEVER go into a home it is his absolute worst night mare -so the guilt lives in me to carry on caring even though It feels worse everyday and quite frankly I just want some sort of freedom back. Sorry if that sounds dramatic, I just wondered if others felt the same, I do see a counsellor and at times it does help but I haven’t even met anyone in the same boat as me all my friends are free and living their lives if I didn’t have my lovely partner (who how on earth he puts up with half the stuff he does I’ll never know !!) I would have lost my mind a long time ago and I just find it hard to say how I feel to others because I fear they will judge me and think how awful is she. Thanks in advance for reading - any advice or anyone who’s in the same boat would be appreciated X
Welcome to the forum.
I’ll start by saying you CANNOT be forced to care.
However you need to find the options open to you.
A lot depends on dad’s financial position.
Does he own or rent his house?
Does he have over £23,000 in savings? Yes/no
Is he claiming Attendance Allowance?
When did you and your partner last have a holiday?
Once we know a bit more info we can help you.
Hi & welcome Nadine
You are quite right to feel how you do. You must stop feeling guilty you haven’t anything to feel guilty about. You went to live with your father to offer help and support. Which you are giving him.
However, because you feel how you do. It’s important to find a way forward. For all of your futures easy said than done I know. There will have to be a family meeting. Where you are need to air you feelings and future needs. You have a right to an independent life. You father has had is independence and you are allowed yours.
If Father does want a care home he could look at independently living scheme. Where he has is own place but carers can still provide the necessary care.
Are you able to financially make plans to leave. Or are you in what your think is a catch 22.
Hey, thanks for your replies.
Bowling bun- he used to own our home but he transferred it to me a few years ago to prevent issues in the future (inheritance tax) so he lives with me, he does not have savings of the sort you mention I’m very aware of the scheme with the 23k re care homes and who pays. I’m quite familiar with the social services and their systems sadly I know may to much! Yes he claims attendance allowance but we use this to pay for his carers. Re a holiday we haven’t been on one since my dad got unwell. We plan this year to go away but obviously covid! Thanks for your questions. It mostly bares weight on my mind that is still his home, so a care home would be out of the question & I can’t sell the house it would feel too cruel to just walk away it’s so hard. I mainly just wondered if people have been through similar and had any tips for the emotional stress.
Hello sunny disposition - thanks for your kind words it’s so hard not to feel guilty, re plans to leave the home see above I have a mortgage on our house so it would be very complicated. Sadly I have no other family so a meeting would be hard- I’ve told dad how I feel but he wants to live and die here basically so really I have no choice. Hope that helps , as I say I don’t mean to moan or sound like a drama queen but I just wanted some advice on my emotional state basically. X
Sorry I forgot to add he isn’t really fit to live alone he can’t do anything for himself so along with the house chores I’m in charge of all his appointments, medications , personal care , care call bookings anything really - he can’t even go to the loo alone really luckily after many months he finally sleeps through the night which took a while so I thank my lucky stars I get enough sleep because there has been awful phases when I didn’t and that made everything 1000 times worse! X
You need to get more support for you.
You need to consider some form of future respite - I know that currently difficult just now. But regular days nights week away would help you to see the bigger picture. And you could gain physical and emotional strength.
Thank you sunny disposition x
Have you ever heard of NHS Continuing Healthcare? It’s for very sick people, all the care someone needs FREE of charge. It’s a postcode lottery I’m afraid, start by looking at the assessment checklist.
Thank you very much
Hiya nadine! My names Sammy, I’m 24 and live with my 88 year old dad and really felt what you were saying here and wanted to say if you wanted someone to talk to I’d love to be friends I’m wanting to look for people in similar situations of a similar age to be there for eachother! X
Nadine, how many carer hours a day does dad have?
When did he last have a Need’s Assessment?
When did you last have a Carers Assessment?
When did dad last has an NHS Continuing Healthcare Assessment?
Do you have written copies?
Are they accurate?