My name is Helen and I am a Mum of 3, 1 still dependant (7 years old), married and we have my MIL living with us.
She is 76 with advanced multiple sclerosis. She is able to still brush her teeth (of a fashion) and toilet herself once Ive helped her get on the toilet. She can still feed herself but its a very slow process with some sort of choking at most meals. She has sustained kidney injury due to 2 bouts of urosepsis at the begining of the year so she has more utis than I can keep track of. She also had breast cancer operated on in October with most lymphnodes affected and removed so she has a poor immune system now.
My husband works away a couple to a few days a week and we live in a remote area of Wales so things can get quite stressful at times, especially when my husband is away and I have to call ambulances and keep my son thinking its all exciting to see the paramedics when its really very serious.
We are new to the area (2 years) so we are hours away from old friends and any family.
3 days after she came to live with us I had emergency surgery on a tumour that we did NOT know abt! 2 years on and Ive had 10 operations to try and fix the complications with no luck yet so Ive told my surgeon that whilst Im caring for MIL I wont agree to any more surgeries, he has agreed.
Im doing ok but I cant shake the tiredness.
Social services are very good and have arranged a carer to come and shower and dress her each morning and pop her into bed at night.
Also evry few months (sometimes longer, sometimes shorter) she goes to respite for a week. (My husband sees this as an opportunity to do LOTS of things we cant do when she is here…Ive tried to explain I just want to REST but he is a big strapping bloke of 6’7" and I dont think he knows what tired feels like?!)
I tried to do all her care myself for the first 4 months but with all my surgeries it was impossible!
I know I am very lucky as we have the room for her here but I NEVER imagined it was going to be so hard. I feel bad for even saying that but Im so tired…
Ive no experience with caring for severely disabled people and I didnt realise how consuming it is. Even at midnight I will wake up realising I havent done something ready for the morning or I didnt phone a health care provider that I was supposed to or I havent phoned for results of urine or blood tests etc
I have no ability to ‘put it out of my mind’ as my husband so often advises me…
Anyhow, what Im asking for here is advice, coping strategies, how to encourage a stubbornly(dangerously) independant person to let me assist more to prevent falls (which happen because she ‘thinks’ she is still capable) and to prevent illnesses due to not listening to advice.
I love her dearly but she isnt my Mum and her 2 sons havent got a clue because 1 of them doesnt see her hardly at all and my husband doesnt do any personal care (dignity and all that).
Also…I just dont KNOW anyone that cares for an elderly severely disabled non-relative so just some reassurance would be appreciated <3
Thanks in advance x

Hello Helen, I’m also new.
Bless you, you are exhausted. Thank goodness that you have a little bit of help.
I don’t have any long term experience of caring for an elderly relative. You need to explain to your OH just how exhausted you are, you have your own health problems and need time and space to rest. Maybe, next time mil goes into respite, take time for you. If you don’t, you will make yourself ill.
Someone else, who has more experience than me, will be able to offer more advice.
I didn’t want to read and run. Xxx

Hi Helen,
First of all, if that’s your real name, you might want to invent a ‘nickname’ so there is no possibility of you being identified. Most members here do that.
Secondly, please be reassured that you are a star and have been doing a wonderful job looking after everyone. Even more outstanding, considering your own health problems. I, for one, most certainly couldn’t do it.
Thirdly, close your eyes and imagine what your ideal situation would be if it could be achieved. (Barring magic wands to instantly return you and MIL to full health.)
It could be:-
More help coming in you take the weight off you a bit. Does MIL get AA? Could some of that be spent on a cleaner, if there’s such a thing in your remote area. Have you got a dishwasher, tumble dryer etc? Has the Occupational Therapist been recently and do you have all the equipment needed to help you cope?
More regular respite for MIL so that you have more breaks? Are the Assessments from SS up to date. If MIL is already getting some care then presumably she has had a Needs Assessment but have you had a Carer’s assessment recently?
MIL not in the house at all but looked after elsewhere. MIL is only going to get worse. Inevitable. It sounds as if she already needs a team of carers 24/7 not just one overwhelmed person. Have you and hubby considered permanent residence for her in a Home? Does she like where she goes for respite? On the grounds that it is likely that she will have to be in a Home sooner or later because her needs will soon become impossible for you to cope with, could you arrange this before you collapse completely and there is a huge crisis? You should never be in the situation where you are delaying your own urgent health needs to continue desperately trying to cope. Your little lad needs his Mum. No-one could replace you for him but you could be replaced by a team in a Home for MIL.
As for hubby not ‘getting it’. In your situation, next time he was home for a stretch, I’d take to my bed for a couple of days, ‘exhausted’, (quite true), stick my earphones in, play soothing music and just sleep, but you mightn’t be as sneaky as me!
There will be others along with empathetic words and helpful tips.

MMMmmm … should CHC / NHS Continuing Healthcare enter the equation , main thread :

( Also contains the poor caree’s alternative … in terms of health … NHS Nursing Funded Care . )

Tiredness appears to be a very common feature of caring for the elderly, so it’s no surprise to hear that you’re tired.

I feel tired most of the time, but for me, it’s not something that a nap or a good kip will sort out, it’s more a lack of energy/drive.

Have you had a basic health check yourself (apart from what’s been connected to your known problems)? Something as common as low Iron levels in your blood can make you feel tired.

Practically, get Power of Attorneys for both finances and health and welfare set up now, if you haven’t already

It is time for MIL to move out, into residential care.


Thank you for your opinon, straight to the point!
I made her a promise that I intend to keep.
I just need a safe space (on this forum) to find support, advice and survival tips from those who know what its like to do this kind of life.


I think they did that when she got discharged from hospital last time.
The unique nature of where we live (760’up a valley) is that it took 16 months to find a proper care company that COULD take us on (before that we had 1 woman doing both shifts and we were terrified of her becoming ill or getting an injury etc).
So its not that we didnt have the need, its just that there are few people on the ground to fulfil our contract.
Ss has managed to negotiate me 4 hours of a sitting service per week, split over 2 days so that we can do things like go shopping, hospital appts or just going and having a coffee with my husband or a friend.
I feel so lucky to have this as its a new service we never imagined we could have! Previous to this 1 of us had to stay in and the other(s) went out. At least now we can go out as a family for a 2 hour slot knowing she is ok :blush: x

Worth exploring as both CHC / NHS Continuing Healthcare are FREE.

In addition , if specialist nursing home care … or even care at home ( Pointon ) … is required , it would be provided.

Hi Tiasmum,

Thanks so much! :blush:

Hoping you are ok too(?) X

Thank you so much for your help :slight_smile:
We will definitely look into this!

Your welcome.

Not the easiest of reads … just shout if you need help.

I DO know what it’s like.

I’ve had ten carees in total. My son was brain damaged at birth in 1979, he can’t read, write, or do any maths. In addition I supported my mum for over 30 years, by the time she died she had 28 different things wrong with her. The last year was spent in a nursing home, the hospital said that even if she had live in care, she was too ill to live at home.

My husband DIED when he was 58, I found him dead in bed, having had a massive heart attack. This is the reality of trying to do too much for too long. His mum had dementia and his dad had heart failure. At one time our son and all four parents were all entitled to highest DLA care!

The day after I was discharged from hospital with a massive scar right across my stomach, Mum summoned me to her house 6 miles away as the carers had mucked up her door lock and I was the only one with a spare key! The doctors even tried to bully me into caring for mum, who had taken to her bed. It turned out that she had broken her leg a week earlier.

On the verge of a nervous breakdown, newly widowed, newly disable, in constant pain, I was given some counselling sessions, which changed my life. I was encouraged to set priorities, son came before mum, he couldn’t speak up for himself, mum could. I should feel proud of what I did, not constantly guilty about what I didn’t. Most important of all, was being given “permission” to put my health needs first.

What good are you to anyone if you are ill? If you don’t put your own health first, no one else will. MIL is totally self centred, she NEEDS more help than you can safely give. My mum’s nursing home was lovely, I could come and go whenever I wanted. Residential doesn’t mean abandoning someone. MS is a progressive disease, at some stage there will be no alternative to nursing care.

Don’t be a martyr, put your own needs first. It’s a bit like the safety announcement on a flight. Put your own oxygen mask on before helping anyone else.

First of all I am very sorry to hear of your losses and the trials you have endured.

In my original post I was asking for support, advice and ways to cope.

Is this not a forum where carers can tell about their current situation?..did I really come across as a martyr? Im ashamed of myself if I did!

So what have I learned from reaching out on here when Im at my lowest possible point? That this is NOT a safe space to express my difficulties :confused:
Im very disappointed I didnt expect this at all :open_mouth:

Im signing out permanently so there wont be any point in replying to this

Im very thankful to those of you who have given me valueable advice, I will check into things as much as I can to do what is right by MIL x

Hi Helen
I hope you don’t sign off, or at least come back again in the future.

Your reaction suggests you are much more stressed than your first post reads and we are concerned about you.

Although caring for a loved one is noble and selfless, it is also very very hard and exhausting. Sadly most caring situations only deteriorate due to the nature of the illness or condition, and because of age. It is very very rare indeed that one sole person can take on such a burden, and for years and years.
You already have some support from Social services. What other support were you hoping for from us?

As a carers forum we do try to make sure all carers look after their own physical and mental well being as they need to be extra strong to cope for a long haul. If the carer breaks it seriously affects the caree, so we try to prevent or minimise that possibility.

Even if you don’t answer I do hope you do much more reading of the threads in here. You will see that tiredness is rife,a nd can be alleviated only by either doing less or conversely getting others to do more. Doing less may mean lowering standards or skipping non vital tasks. Getting others to do more may mean trying to increase paid Care or delegating some things to other family members. For example hubby may not be best at MILs personal care but are there other tasks he could take off you? Even geographically remote family can make phone calls or manage finances for example.

Please do stay with us

Hello,Helen,welcome aboard

Hello,Helen,you’re welcome

I’m sorry if my message caused any upset, you appear to have misunderstood what I was trying to say.

I was not saying you WERE a martyr, but that you should AVOID being a martyr, quite different.

Everyone has their limitations, physical and mental. It’s important that you don’t ignore your own needs when caring for someone else. There needs to be a BALANCE.
It’s difficult being a long term carer, even more difficult when we have our own health problems.
It’s not just our carees getting older, we too are getting older. What we used to be able to do easily, becomes more difficult with age. I used to be able to run a mile without getting out of breath. Now, even if you offered me a million pounds, I couldn’t run at all, in or out of breath!!
If you have made a promise to MIL that you will care for her, then there is lots that you can do to make life as easy as possible. When I was disabled, I had to look at every single thing and work out
a) What I could give up doing totally - by taking out all the garden borders which I could no longer kneel down to, I avoided any need for anyone to weed them ever again.
Ironing can be avoided altogether by wearing things like polo shirts that never need ironing.
b) what someone else could do - my sons mow the lawns now, but a gardener could do it.
c) What something else could do - a dishwasher and tumble dryer are essential.
d) What is cluttering up the house. My house seemed full of stuff that someone else had owned, great granny’s china cabinet and coronation mugs.

Once you’ve started, it gets easier and easier to concentrate on what MUST be done, and ditch what is part of a past life, not the life you live now.
Meals can be made easier with a pressure cooker or slow cooker, shpping is easier if you do it online.
Do you have an accessible bathroom?

Some of these ideas may be a waste of time, hopefully some may help.