Hello everyone, I’ve just joined and sort of new to caring although I am actually a care assistant in a nursing home for my work as well. I cared for my mum for a year before she passed away in Feb this year, and now my husband has been diagnosed with Multiple Sclerosis, so I am his carer I guess, although that idea is taking some getting used to!
He doesn’t need me to do much physically for him at the moment, it’s more like applying for benefits, all the form filling and phone calls, and emotional support he needs from me. We are currently in the process of applying for PIP, just been denied with 0 points so going to mandatory reconsideration next.
I just wanted to say hello. I’m finding this new way of being quite hard - we have to get used to his diagnosis and the adaptations he needs, he’s had to give up work etc - there have been a lot of changes this year.
Hi Deb! Welcome aboard. Do pop into the Members Area and have a look there too!
I care for my wife who has a spinal cord injury. Before the “accident” (when a disc that was pressing on the spinal cord burst and cut into the cord), the effect of the disc pressing on the cord almost exactly mimicked the onset of MS, and for a while the doctors considered that possibility. That was a stressful time.
It’s easy to fall into the trap of one person doing the work of two.
Try to streamline the house as much as possible, reduce the work as much as possible.
I flattened all the garden borders after I was widowed and disabled, made me very sad wrecking the garden we had lovingly made together. However, it drastically reduced the workload, a quick mow and it’s done.
Do you have a dishwasher, tumble dryer? Walk in shower?
Be kind to yourself too.
So sorry to hear this, it must rather a hard knock to take.
I have no experience of MS and nothing to add to what has been said.
It will be rather an adjustment in many ways for you both, emotionally, psychologically and physically.
Please do not be proud about help.
As the MS progresses ensure you get reviews for benefits and equipment eg hospital bed, a grant to provide a wet room shower, a shower wheelchair, ramps into the house etc.
As Bowlingbun said, get the garden manageable, I did that last year, had a lot of massive shrubs removed and they will be replaced with roses for mother on birthday and xmas because she loves them, they are more colourful than green shrubs and they have pollen.
If friends are offering help get them recruited for any niggly DIY jobs that haven’t got done and if you have a garden, get them removing things that require a lot of work eg shrubs, buddleia, hedges etc.
Don’t be proud or polite, get them helping when they offer because people are fickle and once the initial compassion wears off they revert back to their own lives and forget about their offers of help.
Simplify as much as you can - throw the iron and ironing board away!
I forgot to mention earlier that I put all my plants on Freecycle, asking everyone to bring a spade and bucket for whatever they dug up as I was disabled and couldn’t help. Camellias, Azaleas, Lilac trees and baby lilacs, bluebells, everything went somewhere new. In the process I made new friends and caught up with some old ones, people I hadn’t seen in years!
The only plant that defeated everyone was the palm tree. One couple were sure they could manage it, but it was an epic fail. In the end son winched it out with his tractor. Then we tried to burn it, even with a white hot bonfire it just would not burn. Finally a friend with a digger put it on the back of son’s Land Rover, and he took it to another friend who had a large hole he was trying to fill!!
That Spring I went to Crete on holiday, looked out of my room the first morning, and there was a bonfire that someone had lit to burn their palm tree, with a similar lack of success!!!
Thank you, this is great info and stuff I hadn’t thought of really, still getting used to the diagnosis. I was planning on getting the bathroom sorted out though, we don’t even have a shower, only a bath at the moment, so I’m going to get a shower put in. I couldn’t be without the tumble dryer, that was a present to myself a few years ago. No space for a dishwasher though.
Thank you. This is great advice as I’m really bad for not letting people help - I have friends who offer all the time but I don’t let them, so I really have to change that! I don’t know why I always feel like I have to do everything myself, but I’ll work on that, definitely. I will start thinking of ways to simplify the house and garden as well, thank you
Just be careful not to do it all at once!
I’m always making lists, because they help me clarify things.
Try to think about what can be avoided altogether.
What needs to be done but not necessarily by you (housework, gardening)
Shopping online saves so much time.
Then think about what you need to be in control of. Family finances.
If your garden needs sorting, think about asking friends to help, they do the hard work, you offer tea, coffee, BBQ?
Yes, it is time to learn to accept help for many reasons, you need to get into the habit of receiving help and them the habit to give help, you can only refuse so many times before offers dry up.
The help is also a form of bonding with your new situation and the progression of it, giving those who stand by you and help some involvement and chance to show they care.
Hello there I am replying to you and also bowlingbun and breezey
Nice to meet you and see a new post on the forum! I am always checking for new posts and noseying through the old ones as I’ve not been on this site for years! The different stories are interesting to me and how people cope with their new found carer’s position especially when they are not professional carers.
I too was thrust into it when my mum enlisted me to become her carer seen as how I already lived with her when she became disabled.
I want to address some of the replies on here especially bowlingbun who has advised you to seek help from friends. I know I’m not really allowed to make replies all about me as I’ve been warned by an admin but I am only saying this because this is the only time this subject has come up!
You guys have mentioned enlisting friends and family to help you out, especially if they offer… but
I was curious what you do when you are failing to do it all yourself, and you have no friends and family (My mum wants me to clean an entire big house of 6 bedrooms and do all the cooking and garden work and she expects me to do it all by myself. I told her I was struggling as I too have back issues and hip issues but she reckons that because she, as she puts it, used to clean an entire 3 story house and took on 2 careers, or jobs ,and also did charity work and worked out in the gym all by herself and coped fine, still found free time, she thinks I can do the same and cope just fine, as as she also puts it “women have been doing it all for years and never complained” )
how do I get around the fact that all our friends and family have deserted us and I have nobody to help and am struggling and mum won’t let me even get help (as in a professional carer assigned by the NHS… I think?) or take help when it is offered?
I’m literally thinking of sneaking in somebody to help me! I don’t know how to do this without having to pay someone, like a cleaner. Is it possible to get a carer to just help me out with some tidying on the sly from my caree?? I know she is the household owner and the one eligable for carers but I phones up the samaritans and they said i was entitled to my own carer, as she said: even a carer needs to be cared for… so I just need advice… please admins don’t delete my reply. Ii am just getting involved in the thread even if I have talked about my situiation which I’ve been told I’m not allowed to do
I have a range of health issues, my head remembers the old energetic Superwoman me, my body tells a different story. After 8 operations, I can’t kneel down at all and my abdominal muscles damaged. Mum might have been Superwoman in the past, but she isn’t any more. How disabled is she now? Can she walk? Cook? Use a vacuum? Do laundry? Does mum have over £23,000 in savings? (Yes/No). You need a bedroom each. What are the other 4 used for? Do they have any designated use? 3 for you, 3 for mum? Just dumping grounds? It must be overwhelming, It took a year to empty my hoarder mum’s house after she moved into residential care, she stubbornly refused to get rid of anything, she couldn’t differentiate between things she liked and things she needed. As a widow myself, I know it’s hard to get rid of things from my old life, but I don’t want to leave my sons a nightmare when I die. How does mum justify the state of her house? Start by getting a copy of a book called “Dostandig, The Art of Swedish Death Cleaning” by Magnusson. A ghastly title for a useful little book that isn’t about death, and is quite funny in places. It’s very helpful when deciding what to keep or chuck. Think about how your rooms are used. Where do each of you spend your time? Do you have your own bathrooms? A living room each? Hopefully thinking about the answers to these questions (no need to answer them all here unless you want to) will help you decide where you want to start? Whilst my mum didn’t want me to throw things away, she was happy for me to box things up and put them in the garage, so I bought some Rapid Racking and some Really Useful Boxes. Do NOT put things in the loft, the general flow of things needs to be down stairs and out the door.
He can still get out to see his friends, we just all muck in to give him lifts to places. He doesn’t drive but I do so part of my caring role has become ferrying him about, which I don’t mind at all of course, where before he used to bike everywhere. He can’t manage the bike anymore and I think he misses that. He’s at his brothers as we speak, and they picked him up and will drop him off again. He likes to make models and can still manage that although his grip is not great, it takes him a lot longer than it used to but he still enjoys it, so there is that.
That’s a shame, I used to love gardening, but it’s such a physical job. Would he still like to do something similar for pleasure? There are various options for those in wheelchairs, raised beds etc. but so much depends on his own limitations. Can he use a mobility scooter?
We are not quite at the mobility scooter stage yet, although I have no doubt it will come eventually. He’s very stubborn and I think still a bit in denial about what’s happening, so has been trying to carry on as normal and making himself poorly. It’s more the company of his customers he will miss than the gardening itself, so I’m prepared to take him out to see them sometimes, that might help.