What do disabled or chronically ill people do if they have no family support?

[Wouldloveaglassofred]

This is really on my mind today, I have a lot of chronic health problems but fortunately a very supportive partner. I struggled so much on my own before we met with the more upsetting hospital appointments and scary episodes losing consciousness in shared houses etc, and my health has deteriorated more since those times. I thank my lucky stars to have someone who loves me, a cuddle doesn't fix everything sure but it goes a long way to making the bad days better.

If you have no partner and no other family who can or will help support you, what happens? There are so many people who don't qualify for disability benefits despite having very serious health problems. What are they supposed to do if they can't cope?

I was a pa for a lady who was in dire straits lost both her parents had no other family as was adopted. She had severe learning disabilities and ended up being reported by her neighbours for living in filth with her cats, she was then assessed for help and awarded 3 whole hours a week support. 2 years later she lost that funding because she was seen as managing (she was not I did many many unpaid hours including on the phone to benifits/drs etc) I then couldn't go and support her as I myself had another child (significant needs) I found out not long ago that within 3 years she died alone aged 56 in squalor. Its disgusting.

This is me. I put on a brave face on the school run, not that I speak to anyone anyway or that they'd even care.

I'm broken, in pain, exhausted, burned out and not coping (as well as trying to navigate the trials and tribulations of being ND), but all you can do is struggle through each day, and repeat.

On the plus side, my kids are so smart and achieving utterly incredible things in life, so I keep telling myself I must be doing something right, even if life is chaos and the house is a disaster!

I am sorry things are so hard for so many. I don't know what the answer is. I've had such a draining couple of days but lucky enough to just be able to rest at home, and prepare for another round of medical appointments coming up, and just do what I can. Everyone should have support.

Suffer.

Carers, friends. Neighbours.

As a PP said the real kicker is not always with obvious things like problems with vision or mobility. It is with cognitive difficulties.

Perhaps your memory is shot, giving you an at-best-patchy idea of what the medics told you, when the appointments are, what meds to take, whether you have in fact taken them... what bills you have paid! What loans you have taken out and when they are due!!!

Perhaps your energy levels are miniscule - imagine trying to get through a multi page application form for something when you can only deal with a page a day - and then in 2 days you can't remember what p1 was about.

Look up "confabulation" when the brain fills in holes in perception and memory all by itself without telling you it's doing it!!!

The body is all one thing, so even if your "nominal" problem is below the neck, the knock on fatigue can mean your brain is stretched as thin as when you have flu.

The problems are soluble but you don't have the mental capacity to even ask someone else to fix them for you.

Even with much better funding for support, it's never going to be a completely soluble problem, because you either end up depriving people of their agency despite them being legally considered to have capacity, or you get the joys of "just because their decisions are bad doesn't mean they can't make them", a well known legal adage. Because people are flawed.

I’m so sorry. I was a social worker and left the profession because our service managers no longer approved care packages, told us to cut regardless of need, and even if there was funding there were no carers. I can’t offer anything useful, but please know that we did care and so desperately wanted to help, we would go home and worry and cry about you all every night, but were told to lie to you and damage your already fragile support systems even more every time we came out. I’m so, so sorry.

This is what I worry about for my disabled DC in years to come. While not wishing to burden my other DC, I am hoping they grow up to be a decent enough person to check in on their sibling every now and then when they are both adults.

If I could guarantee my disabled DC would be able to achieve some sense of independence to be able to live by themselves, that would be so wonderful.

I get no practical help. Luckily I have a good pension and PIP, so I have to buy in help. Very expensive and long term may have to sell up and go in sheltered accommodation. Adult D C working full time and would not want to depend on them in any case . They have their own lives

I came across this post whilst I was googling “being chronically ill and disabled with no help!” I am quite sick tbh. I have a rare complicated condition that causes a whole array of issues all over my body, inside and out. I use a wheelchair I have a feeding tube in my stomach and I have to use catheters when I empty my bladder to name a few pain and horrendous symptoms are daily and constant and life ifs very difficult at times. And……

I have family but no support!
I have a partner but no support!
I have 6 children 21,19,18,18,16 and 11 all living at home and I am still doing everything for them!!

They love me, I know that, they tell me a lot, are very loving and sweet, but none of them seem to care how much they put on me and yet see me crying in pain etc

Xmas has just been me slaving over everyone. I have not slept well at all for last few weeks going days at a time with no sleep and no time to nap.

I have insomnia due to pain and other symptoms cause by the rare condition i suffer with.

I am exhausted. I

am feeling really low, alone, and super upset right now, but I have no one to turn too!

I have begged time and time again for more help, I have been hysterically crying begging them all to do more, it changes for a few days, and then goes back to normal!

I have hurt myself, made myself more ill, and even causes myself permanent injuries due to overdoing it and doing too much for everyone.

I even ended up with a very bad 2nd degree burn on my hand and wrist………..Sorry I’ve never told anyone this and I always act like I’m fine in front of everyone, always happy, and smiling on the outside!

I also pretend to the world that my carer partner and my kids are amazing and help me so much. (did that with my first husband too)

Even from my hospital bed a few months ago, when they kept me in for like 5 long days, I was sorting everything for everyone. Asking me where things were, how to do things, if I could do things for them online, texting shopping lists (with photos to make it easier), sorting out what they ate for lunch l, and for dinner etc

When I do say anything they go funny with me, and make me feel bad. Of course that just adds to the mountain of guilt I already carry as a mum, with extra because I am a “disabled” mum.

Mentally I can’t cope anymore, I have felt for years I’m at braking point but now I really am. I need to shock them into realising they should be doing more and should wana help me when I am so sick, but I don’t know what to do, or how to do it.

Sorry for moaning so much, Thanks for reading, I so needed this vent. Take care all hope you had a great Christmas and wishing you all a fabulous new year x

I live alone, have some friends locally but not close enough for practical support, no partner or kids, no family locally nearest 350 miles. I just get on with things as best I can, get shopping delivered, use a lot of prepared veg eg the microwave steam bags etc, sandwiches, easy stuff I can manage. PIP would help but I haven’t applied as it just sounds too daunting and like they’d turn me down anyway.

I am very alone also. Disabled chronically ill mum of six. If you ever want a chat you can send me a message always here if you need to vent, ask advice or anything at all xxx

It’s def something I’ve thought about as i have a chronic illness which is classed as a disability although thankfully most of the time I’m ok. I may also be tested for epilepsy soon (have an upcoming neuro appointment).
i have dh, 2 DCs at uni but no other family really so it does worry me. Thankfully I am financially ok but it’s more on a practical basis such as when I have a flare etc, Dh is very helpful.
I do have good friends too but they have their own families etc.
I feel bad for those with utterly chronic conditions who are on their own. I don’t know what the answer is, I wouldn’t want DCs to bear the burden for me - certainly not in their 20s (they have seen me ill but know it passes so they’re ok with it but haven’t dealt with it practically).

It has dawned on me if single and living alone then you are at risk of longer stay in hospital for example. If my parents wouldn’t have me then I’m expected to stay in but as my parents have said they will take care then I get out a few hours later this time as day patient.

My brother who has more spine cord damage through an accident years ago and an older partner who has stayed throughout, I have just presumed as the only sister (younger then his o/h) I would step in, in the events I outlive his partner and our parents.

My friends sister is very disabled ( bed bound ) with no family around. She has a package of care with carers going in four times a day to hoist her onto the toilet. my friend helps with paperwork, forms , finances etc. She does online shopping, carers cook simple meals.

All this. You get to a level of exhaustion where if one more person suggests there's something you could/should do for support you want to curl up in a corner and sob because just the thought of one more call or one more email or explaining to one more person is too much. And it doesn't go away, you can rest for months achieving nothing and it's still there, just as bad. I've been in pain every moment for over 2 decades now. If someone hasn't been through that they can't possibly understand.

@Iamkait - please make your own thread as you sound like you need a lot of help and support with the guilt part by itself.

Even from my hospital bed a few months ago, when they kept me in for like 5 long days, I was sorting everything for everyone. Asking me where things were, how to do things, if I could do things for them online, texting shopping lists (with photos to make it easier), sorting out what they ate for lunch l, and for dinner etc
Just say "no, not at this moment". And keep repeating it. They wouldn't have come to harm if you had said no, and I think that should be your boundary - would it harm them physically if you said no.

Not only are you likely to have a longer stay in hospital, but lack of family support may mean you wait longer for surgery.

I was waiting for a knee replacement when my DP died. A few months later, I got a date for admission to a private hospital, as they were using it to try and prevent breaches of the waiting time target. At my pre-op assessment, I was asked if I had someone at home who'd be able to support me during my recovery. Thankfully, my lovely SIL had already invited me to stay with them while I recovered, but I was told that if I'd had no-one to help post-op, I'd have had to wait for an NHS bed, as they can't risk people bed-blocking in costly private hospitals.

I worried about this a lot last year. DH had brutal radiotherapy & couldn't eat or drink. I fed him by tube every 2 hours, made sure he wasn't dehydrated, sorted out his multiple medications. He would have died if he hadn't had me, because even carers coming in 4 times a day wouldn't have been enough. It occurred to me that when he is no longer around, if something similar happened to me I wouldn't have the same kind of support. My children are wonderful but not local & have their own lives. I have lots of friends, but no-one other than a partner could provide the level of support that was needed & I was able to give.
The thought of attending distressing hospital appointments on my own is also horrible.
I'm so glad I've been here for DH but also slightly cross that he won't be able to do the same for me if I need it one day. I thought we would grow old together.

I have a number of chronic health conditions and no family support whatsoever. I don't have children. Things I have done:

-Stayed in abusive relationships (single and safe now)
-Tried to kill myself (several times over the years)
-Tried to be stoic

The latter is where I'm currently at and have been for a few years now. It's very difficult. Nobody really knows how much I'm struggling since I realised through past experience that whether they know or not, the outcome is the same.

Last year I had a serious health scare and underwent urgent investigations for MS. I did a lot of reflecting while awaiting the results. How would I manage this on my own? What if I could never walk properly again? How would I get around? If I had a partner, would he stay with me? Who would be there if I had a fall? Who would notice I was missing if I died?

Fortunately it turned out not to be MS, but I do sometimes feel quite anxious at the prospect of facing something like cancer alone. My back up plan has always been suicide, although historically I haven't been especially good at it (!).

On typing this out, how bloody depressing. /reverts to stoicism.

For one you make different choices

A family friend lost her husband & has no kids.

Now shes getting older, she's moving from their lovely rural house to a much smaller ground floor flat in a block in town, with a warden & emergency cords, its very near shops, a doctors surgery with a pharmacy, and a community hall where there's a knit and natter group she's joining. There's a mobile hairdresser who already visits a lot of people in the building. She's getting a cleaner. There's a bus stop near the block which has a service stopping at the hospital 30 mins away.

Downsizing is freeing up some money which she's put aside in the expectation that at some point its likely she'll have to pay for carers.

Most of the people I know with long term serious health issues get PIP. I know a couple who don't, both have mental health issues rather than physical.

Who tf voted that you were being unreasonable OP?!

YANBU.

DH had brutal radiotherapy & couldn't eat or drink. I fed him by tube every 2 hours, made sure he wasn't dehydrated, sorted out his multiple medications. He would have died if he hadn't had me, because even carers coming in 4 times a day wouldn't have been enough.

A patient in this condition going home alone simply wouldn't be discharged from a clinical setting in the first place. This is why people refer to "bed blockers". These are people who's needs are primarily care based, who could be cared for by family, but have no one at home to do this. They are kept in hospital, often for weeks or months.

You live in a care home, if you have assets they get spent first . If you can afford it you pay a live in carer .

If you have nothing you have no choice and will be put in anywhere that is free. If you have money you at least get to choose .

All those with disabled DC. Please don't keep your head in the sand and come up with a way they will survive without you. Talk to citizens advice bureau and brainstorm ideas. It is absolutely not OK to just leave them and expect others to pick up the pieces when you have known their whole lives that you would not live forever

I'm not sure anyone would have known. He went to the hospital every day for 6 weeks & straight home. He was seen every week or two weeks in the out patient clinic. He wasn't admitted even when I took him in because I thought he was going to starve to death as the liquid food was coming straight back up. He would have just faded away at home. Actually, he would have taken his own life, but that's another story.