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Just saying hello - Carers UK Forum

Just saying hello

Tell us a bit about yourself here.
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.

Especially in the earlier stages, it might be difficult to qualify for PIP, which looks more at the current effects of a person's disabilities than what the diagnosis is. That said, it then depends on how you fill in the form and depends even more on who deals with your application at each stage. The MS Society is not happy with the system - like most other organisations that work "at the coalface". The MS Society produces a lot of advice on the topic, which you can find here: https://www.mssociety.org.uk/care-and-s ... ce-payment, and Carers UK also provides useful information about PIP here: https://www.carersuk.org/help-and-advic ... ce-payment

If you're able to access a local support service that will help with your appeal, it would improve your chances of a good result.

Hope it all falls right for you.
Thank you Charles! I'll have a look at those links :)
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.
Hi Deb
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!

Be your own best friend.
Welcome
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!!!
bowlingbun wrote:
Sat Aug 13, 2022 1:02 pm
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.
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.
Breezey wrote:
Sat Aug 13, 2022 1:43 pm
Hi Deb
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!

Be your own best friend.

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?