Another Newbie here!

New to Carers Connect
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Hi everyone. I’m Adrienne. I look after my dad, who is 88 years young. I try to enable him to live as independently as possible, but since the pandemic he has definitely aged. He has multiple issues - COPD, Asthma, Angina, continence, Macular Degeneration and cataracts, and he is extremely good at falling over. He had a heart attack in 2019, and has stents. He is also pre-diabetic and has an enlarged prostate and pancreas.

Whilst he is receiving treatment for most things, and they appear to be well-managed most of the time he can’t do things like drive, or cook. He likes to think he can do things like the washing up, go up ladders and walk long distances, but realistically? Not so much. He can dress and keep himself clean, and he gets seriously enviable sleep.

So I live with him and make sure that when he does come a cropper I can take him to hospital. I also take him to his various appointments at various different healthcare settings.

I have been with him since 2014, when I was injured out of my job (it wasn’t during work hours). Just nerve damage in my wrists, but my sector was landscape conservation which needs people to operate machines like chainsaws, and they just couldn’t insure me. So I came home to work out what I wanted to do next. I must admit, this wasn’t it. But in the absence of any better ideas, here I am. I work part time as an office cleaner as the hours tend to fit around likely appointments, and I have a hobby making and selling items in felt. Although with the increasing number of appointments he has I am having to reconsider, as I am less able to find the time to actually make any felt (it’s a slow process).

I struggle with feeling guilty that I am not doing a good job. I struggle with time management, and I struggle with no longer being a full-time worker with financial independence - dad pays the bills (which means that normal financials are not a problem at least). I struggle with not knowing how long I will be a carer. I struggle with not knowing what I will do when I am no longer a carer, or where I’ll live, or if I’ll have any money, or be able to do things like have a social life (I don’t really at the moment). All this struggling leaves me with less ability to actually do what I am here to do, and I feel guilty that I am not doing a good job. I’m getting myself in a right old twist with going round in circles, and am now hypertensive.

Dad is a star at putting up with me. He does however think I’m an idiot who can’t hold down a job (he doesn’t really understand that insurance is a significant issue for employers, and that nerve damage is enough to end a career. But to be fair, I have had a lot of different employers and was made redundant a lot in the past).

Anyway, I have to get dinner ready and go to work now, so I’ll just say hello!

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Welcome to the forum.

Posts like yours make me so sad.

Dad has utterly eroded your self confidence, maybe for his own ends.
Parents should want to help their children, not take away their own lives.

Is he claiming Attendance Allowance?
If not, he should be, with the amount you are doing for him, and then you could claim Carers Allowance.

Answers to the following will help us help you more. they are not as random as they look.

Does he own or rent his home?
Have over £23,000 in savings?
Do you have Power of Attorney?
Any other close family?
Has he made a will?

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Hi Bowlingbun, Thanks for your reply. He owns his own home, and I own a house, which is rented while I look after dad, although I am having to sell it as I can no longer afford to keep it in good condition. We are getting attendance allowance - we share it equally. We have both powers of attorney. This isn’t about money, I need to reasonably frugal, but can afford a few nice things - magazines, the odd lunch out, that sort of thing.

I have a brother, he helps out from time to time, but currently there is covid in his household. His family is complicated and very needy, and have had to take in one adult autistic child of his wife’s as his father is hospitalised with covid at the moment. My brother and father don’t really get on very well, he was much closer to mum.

While you are correct, Dad did spend his entire life being undermined by women himself. Both his mother, and his wife (my mum) were controlling and never credited him with much. I suspect that he is dyslexic (I am, and I understand there to be a genetic element). So the long and the short is that he never learned how to be supportive of women, because he himself was never supported properly by women. In his old age though it is definitely getting worse. I think he just believes that I am doing what a woman should.

I would say that the fact I have been here for nearly 8 years now, and not working full time has had a huge impact, as I don’t go out to work every day, I don’t engage with colleagues every day, and I don’t get the mental stimulation that working with other people brings. I do actually enjoy cleaning - there’s instant gratification, and the site where I do interact with staff does give me a boost as they tell me that they really appreciate me coming, and involve me with birthdays etc. But that’s only once a week, and not what I went to university to end up doing.

I am worse when it’s holiday time - this weekend has been a bit of a nightmare. But the way I get myself tied up in knots is what is really bothering me. I know that this situation won’t be forever. I have resolved to never care for anyone else ever again, but I do feel there is the chance to make this a better situation if I can get my head out of thie destructive loop. For instance, Dad and I get on well when we go on trips. Yes he can be a back seat driver, but I can be that too. Things are much better when we leave the house.

This year has been the worst. We’ve had a lot on, and dad has been to hospital far more than before. A bad one was that we had new carpets in the bedrooms in February. I was helping with moving furniture and boxes of stuff, but my nerve damage was aggravated so I had asked him to wait until the weekend when I had time to help him sort out books that weren’t coming back, so we didn’t need to carry them in. He didn’t want to wait, tried carrying more than he could cope with, fell backwards down the outside steps, and badly damaged his shoulder. I had to ask neighbours to help me get him up and into the car to get hims to A&E (he hadn’t hit his head, and was able to get himself up using a stepladder for support, once we got him into a better position). He’s still having physio, which is in a town 10 miles away (we live in a village where we have to drive elsehwere for most things).

I worry that the neighbours think I’m not looking after him properly, and I worry about the day I might find his body. I worry whenever he has a nap, or a lie in. I’m constantly hypervigilant. I was making a scarf last week, and went so light-headed that I actually ended up on my knees. I really just need to break out of this thought set, because even if my brother were around more, I would still be the one living with him and probably ending up finding him one morning. And I’m guessing he’s going to get a lot worse before that does happen. The fact that I can’t cope with it at this stage is probably doing far more damage to my self esteem than anything dad could say or do.

I’m naturally quite a positive person. I’m also naturally reasonably extrovert. Being at dad’s, away from my friends (all busy people, and not all in the same place), not going out to work, not being able to do something daft like dance around the house naked to music, knowing that dad wil never go away on holiday again so if I want some time away I have to save up and book somewhere to go (and not being able to visit friends in Sweden like I used to - they were like a second family to me), is all taking its toll. I am convinced that if I can find a way to accept that this is just one part of my life, stop myself from ruminating, manage the hypervigilance, and get more connection with other people this could be a positive experience - I would like it to be positive. I think it would be good for both of us.

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Hello

I care for my much older husband with co morbidities so can relate to a lot of your post. No easy answers but do you have a local carers group? If you cannot get out they may well be able to provide a telephone befriender, often an ex carer themselves. This can give a safe place to ‘vent’ and maybe get support? There are sometimes face to face groups.

My husband is mega controlling and it is hard for me to get out. But I am doing my best as my sanity is at risk, if I do not have adult company. So I Chair a Book Club - husband insists on coming with me. I am also an Admin of a local Facebook Female Friendship group and have managed to get to the coffee meetings. I do feel you are MUCH too young to live the way you do and you really do need to make friends of a similar age. If you like reading, look for a local Book Club. Walking? There are walking groups. I appreciate you do not feel able to leave your father for long periods, but you cannot care for someone long term, and 8 years is a very long time, unless you care for yourself. I slept walked into caring in 2013 and believe me if I had known how things would have progressed and how long my husband would go on for, my decision may have been very different.

The bottom line is you do not HAVE to care for your father. I personally would be wary of selling your house as that is at least somewhere you could go back to? Could you have a think about re training?

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Please, please don’t sell the house.

If dad moves into residential care, as you are a relative and living there, then the value of the house won’t be taken into consideration. You must stay there!!

I would ask you to think again about the money situation.
Every day you care for dad and he avoids residential care, you are saving dad lots of money.
In my area, the average care agency charges £10-£20 an hour.
Residential is around £1,000 a week, often more.
So you are preserving your brothers inheritance by caring for dad!
If he has over £23,000 he can pay you for the care you provide, and this should enable you to keep your house.

I know too many carers have used their own savings to enable them to care, only to end up with nothing.

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Dear Adrienne_2204

Firstly, a huge warm welcome to the Carers UK forum, you/'ve certainly come to the right place to connect with other carers who are experiencing similar circumstances, I see many have responded already. Many carers are struggling for all sorts of reasons, and finding it difficult to keep all the plates spinning.

As well as our forum we have other options for you to connect with carers. Weekly we hold a Care for a Cuppa: https://www.carersuk.org/help-and-advic … ne-meetups
This social is a great way to have a little break if you are able to and spend some quality time talking to people who understand what you are going through right now.

We also hold various weekly Share and Learn: https://www.carersuk.org/help-and-advic … e-sessions - sessions to date have ranged from creative writing activities to beginners Latin dance sessions. Please have a look at the link and see if one grabs your attention, we would love to see you there.

And of course we have our helpline should you need advice or support - Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org)

all the best
Ingrid