Caring for my husband on my own

My husband is in his 40s he has rheumatoid arthritis all over , osteoarthritis and osteomyelitis in one foot that is chronic and cellulitis in the other foot that keeps coming back .
He’s in a wheelchair and I’m now finding it hard having to do everything and the gardens and driving house work and I now have basal thumb arthritis in both hands and wear splints so some things I can’t do anymore.
It’s been non stop hospital appointments for 3 years .
We don’t go anywhere he lies on the sofa all day I’m not sleeping well only a few hours a night .
I get no help but some people still expect me to do them favours they have no idea how hard it is and I’m burnt out and fed up

I know just what you’re going through because about 10 years ago I had to become my mother’s carer and i was only 20 years old. I hadn’t had much of a social life or a dating life by then and I knew that this was most likely going to prevent me from having one especially as my mum insisted that I do absolutely everything and never to leave her side. She wanted me with her ALL THE TIME. :dry: for if I left her side (as in the house) for longer than like 10 minutes or so, she reckoned she’d fall or have a heart attack or stroke or some other disaster would befall her.
Her fears did come true and she did have a heart attack one day when I went outside in the garden. she obviously survived by some miracle. she managed to call the doctors as she was having the heart attack. they wouldn’t have even found our house if it wasn’t for me being in the garden.
Then a few years later, after the heart attack, now a few years ago from today she went into the boiler room on her own even tho I said i would come and help her in there, and she got her foot caught on a slab of concrete that was sticking up and she lost her balance and fell on her hip and broke it. She had to go to hospital for about 3 weeks. After that I had no choice but to go out every week on my own to get the grocery shop because although we get online shops there are certain things they didn’t sell so I would have to go out to get those things, such as a certain dog food that was all our very picky dog would eat. Morrison’s own dog pates. Anyway, weirdly since she broke her hip, I now have more freedom than ever before because I’m going out on my own for the first time in my entire life! Before then only time I’d get to go out was with mum.
Like you, I get no help to care for her and I have to clean a whole mansion which is cluttered, all by myself!
She blames me for the house getting cluttered which is not true. I have tried to declutter it for years. It is her who keeps buying clothes, furniture and then grandad died so we had to take in his big stuff too. She also seems to collect boxes and packing. Because she wants me to declutter the house but also won’t let me get rid of stuff, I have just started getting rid of stuff behind her back (just boxes and junk). she also won’t let me get rid of the stuffed toys. I have gotten rid of most of my own clothes and toys. She also collects christmas decorations so now we have 3 full rooms of xmas stuff! including the boiler room which is why she went into that room. the garage was cleared out by cowbow roofers yet that was filled right back up again with guess what? more boxes and big garden equippment she kept buying that has never been used!
Anyway we have no friends or family to help me care for her or clean and tidy up the house and garden so I have to do it all by myself from 21 to 31 maybe even before that! I’ve had barely a social life and only dated 2 men. I fear I’m just going to end up a loner because all our neighbours hate us for no reason and our family has all abandoned us and I’ve never been able to make any new friends for some unknown reason. I used to think it was because i was a carer for my mum and just didn’t have to means to make friends but since being a little bit more independent I find i still can’t make friends.
To be honest, I am failing at doing all the things my mum expects of me and she expects me to do it all with no help. she won’t even get in a carer so I could just take a few days holiday! She doesn’t trust anybody else to care for her but me so I’m pretty stuck.
I’m seriously considering hiring someone to sneak in and do stuff to help me, under my supervision of course, whilst she has her day time nap which can last 2 to 3 hours.

Heya and welcome. Tell us if you have had a needs assessment done or not.

Hi thanks for your reply , sounds like you’ve really been through the mill with your mum being ill .
I’m sorry to hear your struggling to make friends too and you’ve been a carer from such a young age .
It’s so hard when your stuck in the house all the time or just too tired to even think about leaving the house .
My husband started getting ill age 36 but when he got very ill 3 years ago then we saw no one they disappeared as no one wants to hear it or deal with a family member who’s ill or friend . No one calls Iv asked for help off his family and get non whatsoever.

Sounds like you’ve a very large house to take care of and it’s probably a good idea to get some outside help with chores if you can .
My husband doesn’t understand when I get tired or angry as I get too much put on me .
We’re only one person there’s only so much we can do or take on .
I’m the cleaner the driver the decorator shopper Gardner you name it I have to try do it all as it won’t get done .
I have 2 lawns at the front and one is shared and my neighbour was expecting me to mow it past 7 years I stopped doing the shared one the other week as I got so mad and my hands hurt she knows our situation.
Sometimes you just feel like no one leaves you alone or expects from you .
One of my family members doesn’t help us but expects me to babysit their kids when their stuck on top of what I already do , people never cease to shock me .
I hope you can get some de cluttered at your own pace but it sounds overwhelming for you and a lot to take on .

Hi thara,
I had an assessment done and they put some grab rails in for us us a bath board and a stair lift , my husband’s too proud to get any other help in .
The stair lift has been a great help as he couldn’t get up the stairs.

It is too easy to fall into the trap of trying to do everything that two people used to do!
Long term it doesn’t work, but causes anger resentment and declining health.
Everyone needs time off on a regular basis. Start by ensuring your carer can summon help in a genuine emergency, with a Lifeline pendant or similar. Then gradually go through the list of what you do. Some can be done by a dishwasher and tumble dryer. A domestic help can do cleaning. Online ordering for food and prescriptions. Ironing can be avoided by ditching woven clothes. Flatten all the borders in the garden. Get someone else to now the lawn.
Key to all of these are maximising income, Carers UK can do a benefits check.
If your career is reluctant to be alone, point out the ONLY place with 24/7 care is a care home!
I know none of this is easy. For years I was helping son with learning difficulties and housebound mum after I’d been badly injured in a car accident, waiting for 2 knee replacements.

Hi yes your right I’m so angry and full of resentment, I bought a dishwasher which helps I wouldn’t really want to flatten the boarders the reason being is gardening was my hobby and I have lots of roses and nice plants in .
Iv scaled my gardening back and I gave up my allotment 2 years ago due to my hands.
I’d love some time on my own in the house too which I crave for head space but never get .
He is reluctant to give up smoking to help his health and bones and infections.
I’m just so fed up of being put on to do everything.


A word for you “No”
That’s what you say when asked to babysit.
A phrase for you “We need help” tell that to the babysitter requester and the shared lawn person
Don’t let them use you, there is no such thing as a free lunch.
You could have a transaction, you babysit and they do x job for you. OK I will babysit for you if you mow my lawn first. No, I can’t babysit this time, my hands are really bad, I can’t manage to their needs. No, I won’t do it because you promised to mow my lawn and you didn’t.
Be your own best friend and start using these as a gift to yourself.

Does the shared lawn have to be a lawn? can it be a wild flower patch? or a short clover/whatever lawn that doesn’t need mowing?

Tending to your roses will be a welcome break in summer but not winter, establish your space and past time in another room for out of season, craft, family tree research or whatever.

Cellulitis is nasty and takes some shifting and comes back as fast it is rid of sometimes.

If it is over a year since your needs assessment get another one done, sounds like you need a review especially regarding your frustrations and your needs.

Nobody wants carers in, it is intrusive socially and dignity wise in intimate care. But they are trained in giving respect and dignity to the client, if not then they will be in a lot of trouble in the office.
He doesn’t want strangers? Easy, they won’t be strangers after a few care visits!

Kate, while you are giving the care he’s happy to have you do it.
If he were living alone then he’d have no choice but to have carers in or go into a home.

your lawn at the back, do you really need grass there?
Have a look at alternative lawns, short clover, camomile and other type alternative no mow lawns that can be walked on or a mix of them, lawns that don’t need mowing and will bring pleasure watching bees and pollinators on them. Preparation, you could have someone remove your lawn or you could get some black plastic sheeting and cover the lawn with that now to kill it off and sow in the spring. Tell the parents you babysit for that you will babysit but you need them to lay out and secure the lawn cover for you, we have a stack of spare bricks that I use for such things, you will need the covering to withstand the winds.
Some of these lawn seeds state that you can sow into the grass and it will grow and defeat the grass but I would be dubious about that. this all depends on the size of your lawn. I removed our front lawn this spring and have tall clover growing there for the bees and to reduce the mowing I have to do.

We used to be keen gardeners, with a half acre garden, a jungle when we moved in. By the end of every summer the freezer was full and I had 400 Kilner jars in the garage, with plums and apples from our trees. I had lots of borders, hanging baskets, it was a really pretty garden. Then in quick succession I had cancer, my husband died, and I was disabled in a car accident that nearly killed me. Gradually, my son persuaded me to flatten the garden, take out the trees, all our lovely shrubs, everything. It was the best thing we ever did. Now I have a patio with pots, but most importantly of all I can sit there and relax, rather than get up in 5 minutes because something needs doing. All impossible with severe arthritis and 2 knee replacements. You can’t do EVERYTHING.

Thanks breezy I was actually thinking about losing the lawns out the front for wild flowers that self seed Orlando done easier plants to pop in that take care of themselves pretty much .
I think the babysitting has to stop too as much as I adore the kids they are young and it’s too much I do need to toughen up and start saying no to people.

Hi bowlingbun,
I’m so sorry to hear what you’ve been through thats a lot to happen for anybody.
I’m currently getting some raised beds gone from the back garden to make life easier and create less work and more space , it’s difficult trying to cut back on things as I see so many jobs chores inside and out that drives me crazy if I don’t try and do them it sets my anxiety off and then I have panic attacks.

I nearly had a breakdown, counselling helped me see that it was OK not to be the perfect daughter helping her disabled mum. In fact, mum could do quite a lot of organising for herself, it was just easier for her if I did it!
You MUST put your own needs first, after all, everyone else seems to be good at putting themselves first and treating you like a “willing slave”. Think how lovely it would be to have a complete day off work. Start by planning one afternoon one day a week, maybe Wednesday. Time for something just for you, a hair cut, a walk, swim or ??? You will feel so much better afterwards, and whatever anyone else thinks, your own health is really important too!

Thanks bowlingbun ,
Yes I should really set some time out I just get so tired but if I cut back on things maybe I’ll have enough energy to do something for myself.
I’m very agitated lately and my husband just says ( do you think I want to be like this ) but other people have put on me too thinking it’s fine to do so saying they need a babysitter as they work not understanding it’s wrong to ask .
I enjoy walks if I go to a National trust or something just haven’t had chance to go

It is looking after yourself and putting your needs first and standing up for yourself.
Boundaries for your capabilities with your reduced abilities.
Being your own best friend and cheerleader.
Be prepared for them to be shocked and stand your ground, don’t cave in, their babysitter emergency is not your problem, it is theirs.
My uncle and aunt had to say no because the odd babysitting for their sons became full time child minding and they had to be told they are your children and your responsibility.

Be careful about the shared lawn, they might worry about bugs and things or being able to walk on it.
Be honest and straight with them, you are struggling to do the mowing now and suggest the lawn is either re-wilded or an alternative lawn that can be walked on. Being in a village with cattle and arable farming around, we have to be careful about rewilding and what we plant.

Pardon my bluntness here, I am thinking of your wellbeing and you watching your own back.
Saying No gives control back to you. Empowering you with your boundaries.
Selective hearing to any of their reactions against this, any pleading etc, don’t listen and don’t cave in, this is your life and you are taking charge of it now. Have the courage of your convictions.

It is very wrong of them to ask with the expectation and the excuse that they’re at work and you are home. It is ok to ask as a one-off on the off chance but never ok to take for granted or to expect.
It is ok - and your right, to say no, it is your life, your time, your decisions.

Their children, their responsibility.
Your life, your choices.
Get strict, look out for yourself and watch your back.
Get control, be in control.

Some food for thought below and reasons for you to say no to them.

You are not a paid childminder.
you are not insured.
You have reduced capacity in your hands
Can you guarantee their safety or to be able to manage them in an emergency with your hands?

Have a look at the charges for childminders and pre school places, mind boggling, if they are not paying you get indignant and say it stops now.

You don’t need to answer these here, just to yourself
What are you paid?
What professional training certification have you got?
Are you authorised/whatever by the council/social workers/whoever?
If you are not insured and heaven forbid they have cause to sue you, how could you afford it?

You really should not be having them while they are at work, that is not babysitting, it is childminding I reckon.

There are accredited child care courses run by community colleges. Take a look.

Why would someone want to do an accredited course when they want to stop babysitting?

My reply was supporting reasons for not doing it with all elements considered.