Caring alone or with sibling(s)?

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Having read through some of the posts on the forum, I realise I have it easier than the majority of people on here. Dad is 86, lives nearby, doesn’t drive anymore, I don’t drive, so he is virtually housebound. He is doing well despite high blood pressure, type 2 diabetes, macular degeneration, Atrial Fibrillation/Tachycardia and osteoarthritis in knees/unsteady on his feet. Ordering/collecting Dad’s meds, shopping, admin and attending medical appointments with Dad are already more than enough due to my own health issues - Fibromyalgia and osteoarthritis in my spine, for which I go to hydrotherapy classes.

I have TRIED to fit in Dad’s gardening (paved last year to simplify things) and hoovering, cleaning bathrooms, dusting but never have the time/energy to do these extra tasks.

After 5 years of this I am exhausted, depressed and overwhelmed,

My sister never calls him and rarely visits, apart from helping to fetch him out of hospital after having his pacemaker fitted and for a selfie with Dad on Facebook at birthday/Christmas etc. Whilst visiting today to deliver her Father’s Day gift, my sister pointed out some of the minor things in dad’s home and garden that needed doing, in addition to things I haven’t gotten around to.

Later I received a text from my sister offering to come once a fortnight to do Dad’s cleaning. On one hand, this is exactly what I need, on the other hand, by accepting the offer of help, I could well be making life worse for myself by her being around more often to point out all the areas where I’m falling short in looking after dad. Am I being overly guilt-ridden despite doing my best? Do I accept my sister’s offer of help?

Having spoken to a couple of people in real life who are/were carers for an elderly parent I know it is fairly typical that everything gets left to one child but on the other hand, it can be ‘easier’ to do it alone as it prevents argument over how things are done.

Sorry this is so long, but any thoughts/discussion on this topic would be appreciated.

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Hi @Den54, you have done a great job and let your sister help and see how long it last. Ignore anything she says to bring you down, she might be trying to do something for you to have a big bust up but also muck up the will. Some do do this when they know someone might not have long left. It might be worth seeing what services are available to help you with the cleaning and gardening. Some local area groups on Facebook know people who can help if needed. I have someone who helps me out. None of family helps unless they are after something which I don’t ask for help that often. All the best

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@Michael_1910123 Thanks for your response. I will see how my sister fares as a cleaner but to be honest I can’t see dad wanting to pay a cleaner or gardener and I’m not working and can’t afford to pay for them. The reason he paid for the garden to be paved was so he wouldn’t have to pay a gardener! You may be right about my sister having an ulterior motive to get involved - my eldest niece, her hubby and 2 young kids are living with my sister whilst they save for a house deposit, so it’s probably to get the will changed to pass the house to them, rather than myself and my sister.

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Den, I had two brothers, always “too busy” to help, or even ring.
Make sure your dad is claiming all the benefits he is entitled to, Attendance Allowance at highest rate, and use that to employ a cleaner. Get a gardener in to flatten the borders and do whatever you currently do. If you don’t drive, dad should be paying for your bus fare or taxi, not you! Take a taxi to go out, maybe once a month, somewhere pleasant.
Does he have over £23,000 in savings? If so, he can pay you for doing things for him. If he goes into a nursing home his savings will disappear rapidly.
Do you have Power of Attorney?

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@bowlingbun Thanks for your reply. Comforting to know how common absent siblings are when it comes to an elderly parent’s care.

Unfortunately Dad will not accept any ‘government help’. Attendance Allowance was suggested by social services for mom when she broke her hip a few years before she died and dad was having none of it.

He can afford to pay outside agencies to help but doesn’t want to, he would rather have family (me) do it and treats me fairly regularly to show his appreciation. Tiredness/pain due to Fibro/arthritis is my biggest issue around getting things done for Dad though.

Sister’s hubby used to do dad’s garden but doesn’t anymore as according to sister he “doesn’t have time”.

Dad does pay for taxis wherever we have to go together eg appointments and I have a disabled bus pass. A friend with a car is occasionally available to help me with dad’s main weekly shop.

I do try to have time for myself, the occasional concert, creative hobbies, lately too tired for those. The thing we need the most is usually the thing we neglect to do.

Ideally dad would live out his days in his own home. My friend’s dad is in a home, not much money left to pay his funeral now.

I have recently applied for Power of Attorney, it’s going through at the moment, I am the sole Attorney, sister is back up if anything happens to me.

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Hello Den - welcome to the forum.

Yes a lot of people end up as carers when their siblings have ‘slopy shoulders’ and don’t do anything to help. I was in that situation with my Dad for years. Unfortunately we ended up having a bust up when he was diagnosed with dementia and our relationship broke down. One of my brothers took great delight in telling me it was all my fault. He eventually got him into a Care Home (something I had said was necessary six months before it happened) because no one could cope with him!!! Family would not accept the dementia diagnosis and he made a new Will trying to cut me out completely. Eventually the persuaded him to change it so I got a small legacy (I didn’t care but older brother took great delight in making sure I knew he had fought for me!! yeah right.

Over the years I had run around after Dad and driven him everywhere and visited him in Sheltered Housing every two weeks - taking time off work to fit in with times he wanted me to visit - he would take me out for lunch and give me something towards fuel but that wasn’t the point. Two siblings live in USA and older brother lived in Cornwall - so everything was left to me. Visits form Cornwall we trumpeted “oh John visited me today- he is so kind to come all that way”… Never anything about ME driving 50 mile round trip each visit. (Oh and those Cornwall visits were fitted in when he was passing anyway - hmm) Bitter? You bet!

So it’s not uncommon for one of us to end up with all the burden. You do need to protect yourself though. Dad’s stubbornness about accepting help and the benefits to which he is entitled is disappointing but not unusual. How would you feel about applying for AA on his behalf once you have POA? That would also entitle you to claim Carers Allowance.

Its a terrible situation that so many people find themselves ‘sleep-walking into Caring’ and it happens all the time, but you are not alone. You’ve made contact with us on here and this is a great place for support and advice - not to mention a place to vent your frustrations! Some of us post on the “Roll Call” thread which is a chit-chat place where we keep in touch with ‘friends’ on here. Great place to confirm you are not alone and share your daily grind etc.

Why not have a little look and if/when you feel it appropriate say hello - you only need to share what you are comfortable with when/if you want to - https://forum.carersuk.org/t/roll-call-june-2024/125122/343

Congrats on posting and reaching out - many hands here ready to offer support.

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Welcome from me too Den.

TBH my husband did not want to claim Attendance Allowance despite being a high tax payer for a lot of his working life. This meant that although I was forced into caring for him, I could not claim Carers Allowance and therefore this would have prevented me from getting a full pension. We have a local ‘Support for Carers’ and I talked it through with them and they suggested I ‘sell’ it to husband by stressing that it was a way of getting something back from the Government after all those years of paying into the system. Thankfully he went for it. Do you have a Support for Carers’ locally? Well worth making contact. I cannot get out for long periods and I have a telephone befriender - often they have been carers themselves. You do sound quite isolated so maybe this might be worth looking into?

Old people can be incredibly mean. I am going through this with my mother too. We think she may have more savings than she is declaring which is a bit of a nightmare as she is claiming benefits. However, she lets her 76 year old neighbour who has had a hip replacement do her garden. She is nearly 85 same age as my husband. Old people can be mega stubborn and sometimes the only way foward is by ‘tough love’. YOU have a right to a life too. AA and Carers is not much but it could make a huge difference to your ‘quality of life’. You could say you are going to withdraw caring if he does not claim?

Could you consider the weekly shop online? I do this as I do not drive and cannot carry that much. It takes a while to get the hang of it but it is truly invaluable. Some slots cost very little and I think Tesco may have ‘free slots’.

I am an only child so am not really able to comment with regard to lack of sibling help. However, from reading posts over the years it often appears that one child takes on most of the caring work. I am glad you have POA going through.

Well done for reaching out, no judgement here and a lot of empathy. We cannot promise to have all the answers but we can often point you in the right direction and give a safe place to vent.

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@Chris_22081 See reply below. This one didn’t appear to have posted, so I retried, then ended up with two.

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@Chris_22081 Thanks for your reply, glad I joined the forum. Seems there is a lot of support and useful information here.

Yes, it’s amazing isn’t it that the people who do so little always criticize when someone who actually does something gets it ‘wrong’ in their eyes. My Dad is the same - he is eternally proud of my sister despite that she is never around for him like I am, yet when she does the slightest thing she is the golden child. Hmmm.

I will look into AA and Carer’s Allowance once I have POA and check if it affects my current benefit.

Thanks for posting the link to the roll call thread, I will go and take a look. Thanks again for your advice and support.

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Hello @selinakylie, thanks for replying.

My GP surgery sent me a contact phone number for a local carer’s group when they sent the link for this forum. I was reluctant but I will give them a ring.

Mean and selfish - yes my Dad can definitely be that way at times. It is very frustrating as they seem to have their own set way of wanting to do things or thinking about things.

I am going to look into AA and Carer’s Allowance. I will use the threat of withdrawing care if he doesn’t want to claim!

I did do Dad’s shopping online a couple of years ago when I had an ankle injury, but that went back to in real life shopping because ‘only likes Lidl’ at that time, plus his Tesco account wouldn’t allow a log in without sending a security code to his mobile, which Dad had thrown in the bin (sigh!) plus I got locked out of his email when my associated mobile number was ‘spoofed’ (stolen). I do order my own shopping on Ocado, I will have to set one up for Dad now he has a new email. Technology is great but everything is so interlinked now eg mobiles linked to your bank card it becomes problematic sometimes when dealing with someone else’s money.

Thanks for your support.

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Hi again.

You may already be aware but CarersUK has an advice line and also email address where you can ask more detailed questions and they will be able to research the answer. It may be worth checking out with them and they will also double check with you what benefits you and Dad are entitled to - and ensure nothing clashes for you.

This is a link to the Advice page with contact details.

https://www.carersuk.org/help-and-advice/helpline-and-other-support/

You are right- there is shedloads of support form others on here and we all know what it’s like to be a Carer so can empathise.

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I really don’t like my mobile phone at all. Only have it in case I break down on a long journey. Also handy when I’m in Greece, but I really don’t want it going off when I’m driving.
Long ago I had a head on smash and my life changed forever. It wasn’t my fault, boy racer on my side of the road hit my Range Rover head on, shortened it by 2 feet and wrote it off.
I tell everyone to use my landline which has an answerphone, not the mobile.
This idea of a one time code etc. drives me nuts, first I have to find the phone, then usually charge it up again!

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@Chris_22081 Thanks for the link. I already made a note of the number. That will be really useful with the benefits check. Fantastic! Thanks again.

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@bowlingbun I am with you on that, my mobile is a necessary evil of modern life, could quite happily smash it with a hammer sometimes with security codes and passwords for everything. Need it though in case Dad needs to contact me while I’m out and about.

So sorry to hear about your accident. How is life for you now? Life is very strange how things turn out, but we (hopefully) make the best of each day and try to carry on.

I still have a landline, so does my Dad. Much easier for him as it has large buttons.

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The accident was in 2006, 2 years after I’d had major surgery for kidney cancer, 3 months to the day after my husband died. By chance, I was driving his Range Rover, which was shortened by 2 feet and written off. The police told me that saved my life, if I’d been in my Escort I would have been killed. I couldn’t walk for 5 years, just hobble with a stick, but after 3 knee operations I can walk OK now, on level ground. At 18 I was leading mountain walks in Switzerland at the Guides International Chalet, so not being able to walk on rough ground is very frustrating. As a result of the accident I’m absolutely riddled with arthritis now, driving is painful. I managed to go to East Devon last week but my shoulders, elbows, wrists and fingers have all been telling me off for this. Usually awake at 4am rubbing in Voltarol, Deep Heat or both. My eldest son says that at least I’m here, so I try to remember that. I find the phone difficult to hold and even worse to use the tiny keys, much happier with a proper keyboard (I can touch type) and a 22" screen!

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Hi Den

Just wanted to say you MUST take up your sister’s offer to houseclean.

I also care for an elderly parent alone and my natural response to any offer of help is always “I’m OK thanks” - I have a routine and as long as there are no curveballs, things run smoothly.
If you are similar, this might be exactly why your sister doesn’t offer to do more, so don’t be too hard on her. Unfortunately, life does throw curveballs so, despite my natural response to reject help, I will ask siblings to give me a few days cover so I get some respite. And I would definitely be telling sister “You don’t need my permission, Dad would love you to come clean”.

As others have mentioned, if your father is eligible for Attendance Allowance, which is not means-tested, this money can be used for additional jobs you don’t have time for and will also open the door for you to receive Carers Allowance. So do have a chat to get to the source of his reluctance to claim so you can reassure him. (And have the completed form ready for him to sign when he acquiesces).

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That is terrible! At least you were fortunate to be driving a vehicle that saved your life. I can’t imagine how frustrating it must be to go from being a walk leader to barely able to walk. We always think we can do ‘normal’ stuff but then suffer terribly afterwards, I am just the same. Is it Rheumatoid Arthritis you have? An acqaintance of mine has it and finds it difficult to hold money or anything small, her fingers and toes are badly misshapen now.

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Yes, I will do that. It’s so easy to say ‘I’m okay thanks’ and just struggle on because you think you can do everything! That is great advice, I think my sister probably does feel that I am a ‘gatekeeper’ and she has to go through me to do stuff for Dad.

I will be having a chat with Dad and explaining about Attendance Allowance, I think there is some pride and stubbornness there - maybe it’s the idea that he has done everything financially for himself in life without help from the government.

Thanks for your advice.

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I have osteo arthritis, so frustrating. My head still thinks I’m Action Woman, it remembers me slim, fit riding a powerful motorbike in Australia wearing green hot pants, midriff top and a crash helmet. Reality is being unable even able to kneel down! However it means I know what it is like to be the caree as well as the carer. Today, for example, I’ve been tidying my remaining lorry spares as two people want to buy some. As I’m not as fit as I used to be, and major scarring from kidney removal, it probably took at least 4 times as long, but not only that, at the end I was exhausted.

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Den, I had just read your post and was about to reply when I received a call from my local carer support (more on this below) for my annual assessment - diarised but forgotten! Anyway, the lovely woman who looks after me was emphasising the need to tell family when you need their help and I told her how evocative your term “Gatekeeper” is. We must allow ourselves to open the gate at times, or better still, keep it ajar all of the time. (Easier said than done, which is why I think giving it a title, as you have, is so important).

My Mum is 93 and if it weren’t for her dementia, I am not sure she would claim attendance allowance for herself. Older than the NHS, she was also a young woman before a benefits system that we might recognise today was introduced, finally putting an end to
the workhouses that had been ‘abolished’ two decades earlier. My dad was the same. Worse even. For their generation, there was shame attached to not being able to provide for your family that still prohibits them from using the support system they have paid for. As a claim for Attendance Allowance will open up support for you in caring for your Dad (reworded to allow for his pride), perhaps it is this which should be emphasised.

With regards the local carer support, although I don’t take advantage of retail discounts and free cinema tickets available to carers (Discounts for Carers - how to find Carer offers & grants | Alina Homecare), my council does provide vouchers that pay for sitting services from a professional homecare service provider for five hours a week, along with a dedicated carer development worker, who checks up on me periodically and has the ‘big chat’ once a year. Who knows what help your council and local community has available to you once your father also learns to open the gate.

Good luck.

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