I can't do this, it's been 11 years

Carers' health and wellbeing
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Caring for mum with advanced MS that whole time. The last year my dad has gotten ill - bad COPD (but continuing to smoke). He refuses to see any doctors or follow up. I suspect he has some form of cognitive issue or other problems. His mobility and speech have deteriorated badly, his sleep is bad - he goes to bed at 6pm and is up at 2am. The past week he has also gotten up at 8pm thinking it was the morning and at 11:30pm. Swallowing issues too and won’t eat, he looks skeletal. Managed to get blood/urine tests done last summer when it all started quite suddenly but all turned up normal aside from slight anaemia. Gets confused over complicated things and no memory loss or trouble with finances but something is still ‘off’. He used to be very sharp but has become ‘slow’.

I used to have carers come in to do personal care for my mum, stopped when covid began and don’t feel comfortable having them back as they switch so much now in terms of different people coming in. They don’t offer anything except doing personal care anyway and personal care is the thing that is the least stress, she is bed bound and completely dependent and cannot feed, dress or even move herself. Cannot talk but can communicate but with limited understanding. She is not on any medication and is overall ‘healthy’ and content.

Me and my dad used to share caring for my mum, he slowly became unable to do much and since last summer i have been looking after them both entirely in terms of cooking, cleaning, medication for my dad etc. My brother comes in the morning to make my dad tea and toast, but no other help apart from that and he wouldn’t do more.

If my dad continues to get worse i know i will not be able to do it and look after him. I turn 37 in two weeks time and have nothing to show for it. I live with them, i haven’t been able to work since 2015, friends all dropped away, i go weeks without talking to anyone other than my dad who i am not able to talk with much any more due to his suspected aphasia. We used to watch poirot and documentaries together and now he will just watch the same show while listening to the radio on his tablet constantly. I miss my dad and how he was. It was easier when we were both in the same boat, now he is slowly joining my mum.

Since 2020 i have left the house a total of 5 times for dentist appointments, something that has left me badly in debt as even though i’d be entitled to free dental care i cannot get it as there are no NHS dentists available forcing me to go private. My own health worries are pushed down. I have bad agoraphobia and anxiety. I regularly break down in tears. I get frustrated over everything. I don’t see a way out. All the while having to watch both of my parents disappear in front of my eyes with no way to stop or slow it.

I am studying at the open university but it will be a few years before i complete my degree. I apply for remote work but get no-where. I am only here because i have no other options. I need to leave but have no chance of having a home or place to live without a job and i cannot get one while i am caring like this and needing to be around every 2 hours.

I’m in Northern Ireland and services here are basically non-existent. How do i stop caring and have a life? Is it even possible or am i stuck here until one or both of them pass away.

When i talk to people they just say to get the carers back [minimal help with more stress], get respite care [my dad would never agree to go anywhere, my mum being gone would likely make him worse and i’ve seen the deterioration from ‘respite’ that can happen with my aunts who also had MS]…

I just want a life, i’ve never been on holiday, not been to a hairdressers or to a restaurant since i was a child, no relationships, no travel, no driving license, nothing..

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Hi there, I think you need to discuss your worries with your GP first. You obviously need some respite. Address one problem at the time, so you don’t get overwhelmed. Make a list of your problems and prioritise what needs solved firstly. If you can’t do that on your own, seek help to do that. I understand your problem and feel for you. It must be awful. I wish you all the best! Xxx

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In order to give you the best advice, it would help if you could give us a bit more information about their situation.If your parents have over £46,000 between them, they are entitled to either free or subsidised help.
Are they claiming all the benefits they are entitled to?
Are you claiming all you are entitled to?
I didn’t have a holiday for years, but now my situation has changed and I have serious health issues, I say my holiday is “non negotiable”. For 2 weeks every year I can just be the real me, away from problems and paperwork and phone calls.
Do they own or rent their home?

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No they don’t have over 46k between them. Yes they are claiming dla and their pensions. I get carers allowance and UC. Rented home.

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Has anyone ever mentioned Continuing Healthcare to you?
From what you describe mum should be eligible, I’ve just checked.
Please find out as soon as possible if you will be able to stay living in your house when you parents have died. It’s vitally important there have been others in your situation in council or housing association property who were given notice to leave within 4 weeks of the second parent dying. Others have been given special treatment as long term carers.

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No, but my dad would never allow her to go into a care home as long as he is competent, which he is for now. If i could just care for my mum it wouldn’t be as big an issue, it’s him and his more complicated needs that is tripping me up.

Checked years ago and they are on a joint tenancy, the agency said i should be able to stay but who knows if that is even reliable anymore.

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In England Continuing Healthcare is available to provide free care at home, OR in residential care.
The more help dad accepts the long mum can stay home.
It’s all very well dad saying he’d never let mum go in a care home but that is saying you cannot have any life of your own, at all.
Not even a trip to the hairdresser? Honestly, I’d call that slavery/imprisonment.
It’s vital that you have some life of your own, you are missing out on so much.
Is the doctor aware of your situation?

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Hi @Jen_2105
Your situation sounds impossible to sustain, exhausting and very lonely.

My Auntie and Uncle struggled on at home with my cousin’s daily support until it became unsustainable. They then both moved into the same care /nursing home together at the same time. They had separate rooms and were in different parts of the home but met up at mealtimes etc or if one wanted to check on or see the other. My auntie was mobile but had dementia. My uncle had severe arthritis and his mobility was very poor. Just saying, it’s worth thinking about. A planned move is better than an emergency one.

Are you receiving support for your agoraphobia?

Are you enjoying your course with the OU? What are you studying?

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Sorry, but It wasn’t about me :wink:

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Thanks for the replies.

I broke down today in front of my nephew as I couldn’t hold it in anymore. He called my aunts and my brother and they all came over today to discuss it and how they could see I haven’t been coping for a while but they didn’t know how to help and I insisted I was fine for so long.

I’m going to call the social worker again tomorrow and write a letter for my dads doctor with the timeline of symptoms I have for him going back 3 years. Even if he doesn’t want to see a doctor or do any assessments, they’ll be pre-warned if/when something happens and have a history to work off. Also, my aunt is going to make me an appointment with the local advice people here regarding the housing situation and I’ll make an appointment with my own doctor.

I’ll likely not get this all done in one day, but I feel better having shared this even if I had to fight my mind saying that I don’t want to burden anyone else with it.

I’ve spent the last 5 years telling myself if I did everything I could do keep them safe I will. I have done everything in my power, none of us have ever gotten covid or even a cold in the last 5 years due to this over-vigilance. However, I am slowly accepting the fact that I cannot protect my dad from himself and age/illness.

I shared a little with him about what I am planning - mainly regarding the housing which he was on boat with but not so keen on the benefits thing for my mum. She was last assessed about 20 years ago before she was even diagnosed with MS… she is still getting low care rate. He has been terrified of even going near the benefits people in case they cut everything off. So for now I am treading lightly with what I let him in on. I also brought up doctors/eating etc with him but he again denied he wanted help. It’s like he has given up the will to even want to try and get better. The eating/dysphagia is something I have 10+ years experience of with my mum, but he doesn’t want the help, or even supplements or anything I know I can do to help. I’ve done all I can with him, I just need to let the doctor know and wait for the inevitable crisis.

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Dad has no right to stop mum getting the benefits which she is entitled to. If you became her DWP APPOINTEE (a relatively easy process) you could manage them for her.
Is mum able to communicate enough to talk to you about dad?

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He has no intention to stop it happening, it just makes him nervous because he is afraid they’ll start looking into him and cut off his benefits. They both get DLA and are both SIGNIFICANTLY more disabled than they were when it was awarded. My mum was awarded hers back in the early 00s after nursing left her back wrecked and she couldn’t get medical clearance to work again. She hasn’t been re-assessed since then.

My dad has no issue with me becoming appointee, i already have access to bank accounts and stuff for both of them but that has been the case for 20 years as neither were computer literate.

No she isn’t able to communicate or understand really. She can really only respond yes/no or shake or nod her head and wouldn’t understand any of it at this point.

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Under these circumstances dad has absolutely nothing to worry about.
Mum is clearly very disabled now. It seems doubly unfair when mum was a nurse helping others.
I would suggest asking your GP for an NHS Continuing Healthcare Assessment. Then you could have a lot more support at home, free of charge, arranged in a way that suited the family most. You need to be able to go out, or sleep at home, knowing they are both safe.

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Yeah that’s what i keep telling him, but their reputation precedes them and scares older people into this state of not rocking the boat. So far i am just going to an advisor to see where i stand with all of it and what i need to get before proceeding with anything official.

My mum had 5 sisters, 2 of them were also nurses who also got primary progressive MS and have since passed away. I always wonder if there is a connection there.

I will be making a list tomorrow of everything i need to ask everyone, tonight i feel a bit better with the unending anxious knots finally lifting a bit. I’m still upset and saddened by whats happening with my dad but right now i am just choosing to enjoy talking to him in whatever way i can.

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Nothing prepares you for this stage of life. Our parents all lived near us, in the New Forest where we grew up. Our sons were lucky having them around until they were adults, but we always knew it wasn’t going to last. In 1999, My lovely mum in law, we never ever argued, developed dementia. My dad developed prostate cancer, father in law had heart failure and bowel cancer, mum had 28 different issues, I had kidney cancer and then my husband died in his sleep. Three months after he died, I was disabled in a car accident and a bit later brother was diagnosed with pancreatic cancer whilst in Uruguay, then mum went into hospital, then residential care.I had two homes to empty in two years. One full of dismantled motorbikes, in the house, the other rammed full of Ercol furniture. Everyone has their own breaking point. I was too ill, to tired, caring for too long without a break. Mum died in 2015, 15 terrible years that I can never have back, and now I’m suffering with arthritis so much I can only drive short distances. The best thing was discovering a friendly solo travellers only hotel in Crete. I slept most of the first week!

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@lannie , thanks for pointing that out, I have edited my post.

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Hi Jen, youre very welcome to the forum. I’m so glad you’ve joined as its sounds like ypure really struggling and have so much responsibility. Your situation is quite similar to mine. I’m also in NI and you’re right, there’s not much support. The local MS group hasn’t run in years, as the man who lead it stepped down due to his health. And they didn’t replace him with anyone.

Im at work now, but will come back to you later :slightly_smiling_face:

Have you had a carers assessment done by your GP surgery? The nurse there did mine and she signed me up for a carers support group run by the Nothern Trust. They meet for coffee in a garden centre near Bushmills, there was a walk in Antrim castle garden. They might have a zoom book club. I was only able to go to one coffee morning as I now work full time so can’t go.

I feel very isolated as a carer. The only others I know of caring for a parent, are in their 60s.

I’m a similar age to you. And my life has been on hold for years too. Its an extremely difficult situation to get out of.

Hopefully you’ll get sorted with carers, although sometimes it seems to take a crisis for anything to change.

All the best and take good care of yourself :hot_beverage: :shortcake:

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Im sorry i cant respond individually, i dont have the energy rn. But i am studying for degree in Computing and IT.

Brief update.

Apparently, no one has any idea what a carers assessment is. Doctor didn’t know, district nurses didn’t know and when I called mums social worker they gave me a number to call in order to self-refer. He didn’t bother to tell me that it had been so long since he saw my mum that her case is now closed, had to work that out on the frustrating call. I called that number and got someone who didn’t know what they were doing and apparently put it in as a referral for direct payments and did it under ‘urban’ rather than ‘rural’. I only found out this evening and with it being the bank holiday weekend I guess I am screwed…

I sent an email to the head of the western trust carers support service, detailing the experience of trying to get what they call a carers assessment/carers needs assessment/carers conversation or whatever bloody name its going by. That was on Tuesday, nothing received in response.

Wrote a letter to my dads doctor. They called and arranged a nurse to come out yesterday for blood tests. Called back an hour later saying that reading the letter they decided that a fuller work-up will be needed as they are looking at possible dementia… someone is coming out to the house tomorrow to issue a memory test. I’ve been in terror mode thinking about it, I can barely think. Tonight he asked me was I thinking about leaving, then said he didn’t want me to leave. My heart is breaking into pieces.

Went to see my own GP today - prescribed me buspirone to be taken ‘as needed’, however looking it up it appears it is little more than a placebo when taken like that and I haven’t felt any effects at all. Whatever. They basically just dictated what I said, gave me the prescription and sent me to see the social worker in the other office. I’m not sure what the social worker will be doing, it’s kind of a blur but the main takeaway was the first step I need to take is trying to finish my assignment for the open university due on 1st may… My world is burning around me, but sure, ok, I’ll get on that.

She did make an appointment with some mental health guy at the surgery for the 29th. Maybe he can do something.

It wasn’t an exaggeration when i said the services here suck…

On the plus side my family has been supportive, my brother took Monday and Tuesday off work to help with trying to contact people and put up a new bookcase for me. I just redecorated my bedroom and can’t even enjoy it, the shelves are still empty.

I’m so scared for tomorrow with my dad.

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Update - doctor came out but couldn’t do memory test, my dad was napping when she came and because he is hard of hearing and it was a long test she decided it wouldn’t really be as accurate as possible. She is going to refer to memory clinic anyway.

Also referring him to social workers to get an occupational therapist and poss. carers in for him.

Sending him for another chest x-ray to test for any changes since the last one.

His blood pressure was really high, she took it twice and I didn’t see it exactly but it was over 200. Going to prescribe him some blood pressure meds.

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Hi Jen, thought I’d pop on to see if there was any updates. What you’re going through sounds so tough. Glad your family have been giving you some support.

I live in the northern trust. This might be of some use to you ,although you’ve probably already visited that site

It was the nurse in my GP surgery who got me the carer’s assessment. Don’t think it would be something District nurses would arrange. So keep trying with your GP surgery.

I was finding that caring was really affecting my mental health. I was struggling with resenting how my life had turned out, then hating myself for feeling that way. I felt I was a bad daughter and a failure as a human being. I had started to hurt myself. So I knew I had to reach out for help as how I felt was getting worse. The GP suggested antidepressants, but I told him I wanted to speak to a counsellor. This was arranged, and it helped a lot. Might be worth thinking about, no harm in trying it to see if it helps.

I spoke to a mental health worker at my GP surgery too, that was before I spoke to the counsellor. The mental health worker was helpful and he could see I was struggling. I understand what you mean about it being a blur. You’re under so much stress.

Mum had a social worker. And like you’ve said, she too ended up with her case closed. I’d started a new job and was struggling with Mum. I’d been up really late with her, then couldn’t sleep that night with worry. The next day at work, I couldn’t cope, so had to explain to my manager. She said, ‘We all have our troubles outside of work, but you can’t bring your problems into work’. She also told me to get a social worker. In a blur, I rang the GP. They gave me a number. But it turned out to be for the wrong type of social worker. I eventually got through to the right one, but was told Mum was no longer with them as her case was closed.

Not long after, Mum fell and ended up in hospital. They got her set up with a Social Worker again. They got Mum some carers too. Mum made me cancel some of the Carers. I knew it was a bad idea, but she kept on at me so much, that I gave in. Then she had another bad fall and ended up having a longer stay in hospital. They told her she wouldn’t be allowed home without a full care package. And they moved her into a care home for rehabilitation whilst awaiting the care package. I had no say in it.

From what i know about direct payments it’s more where the Trust would provide funding for you to employ a carer. I had looked into it before, but decided it seemed more hassle than it was worth.

Hope all goes well with the appointments. Does the uni know about everything you’re going through? They might be able to give you some support or if you need an extension on your assignments.