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Newbie - Carers UK Forum


Tell us a bit about yourself here.

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 :

https://www.carersuk.org/forum/support- ... read-35998

( Also contains the poor caree's alternative ... in terms of health ... NHS Nursing Funded Care . )
Helen_19071234567 wrote:
Fri Jul 19, 2019 11:46 am
Im doing ok but I cant shake the tiredness.
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.
bowlingbun wrote:
Fri Jul 19, 2019 7:05 pm
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.
Chris From The Gulag wrote:
Fri Jul 19, 2019 1:37 pm
MMMmmm ... should CHC / NHS Continuing Healthcare enter the equation , main thread :

https://www.carersuk.org/forum/support- ... read-35998

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

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 😊 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.