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Fighting for dignity - Carers UK Forum

Fighting for dignity

Take part in research or give your opinion in a survey.
Hi, I'm interested to find out how people feel about the products they use.
My mum has M.S, her condition has worsened over the last 2 years. She is now using Tena Lady and nappy sacks to dispose of them. I feel that her dignity is being taken away from her. With the help of the Princes Trust I now have a mentor to help me create a new range of products for disabled people. I would love your feedback to help me with my research. It's a short easy to answer survey which shouldn't take up too much of your time. Image
http://www.surveymonkey.com/s/95ZGMJ2

Many Thanks
Also would like to know if anyone else struggles to buy a winter coat for the person they care for? My mum has lost the use of one hand and is in a wheelchair, she can barely move and this makes it so hard to put a coat on her. She is still young and I try and buy fashionable clothes for her but find it so difficult
Ponchos are back in fashion at the moment, I had one for years, last time they were in fashion, so incredibly quick and easy, Slip it over your head and off you go. A lot depends of course on how cold mum gets and how long you are going to be outside. Some of the mail order catalogues have featured a cross between a cape and a coat, so you can still get your arms out to do things, but there isn't a very defined sleeve. Just had a huge chuckout of winter catalogues, so can't give you any precise details, sorry.
Thanks Image No worries I did get one poncho in the sale before xmas. This was only because I came across it, I'd not thought of a poncho before I saw it. It was nice and warm for her but when she moved her one good arm she un tucked it at the sides which then got caught in the wheel! I have seen people in wheelchairs with a blanket over them. I think it's very sad there aren't many options for people
Split the coat from the hem to an inch or so below the collar all the way up the back. It's then easy to get the arms in and to tuck the back in and nobody can tell Image
Jacket length works best and nothing comes untucked when the good arm moves. If Mum can sit forward you can velcro up the back, but beware pressure areas developing if you do.
It's almost impossible to buy clothes for immobile people in wheelchairs, plus if you can get what you want they are incredibly expensive! So I adapt, alter and improve to fit.
As for sanitary products, talk to the Continence Nurse and you should get them free, supplied by tena, every 3 months, in totally discrete packaging.

The same applies if you order on line, from anywhere, the packaging is always discrete.
We uses a sani bin to dispose of the used product, also very discrete.

It's up to you to make things as dignified as possible, but not easy with MS.
My son goes to the footie with his dad to support his team Partick Thistle. He has a Thistle strip, his Thistle hoodie and Thistle Fleece or heavy coat on. He also has his Thistle hat and a fleece blanket on the top half. On the bottom half he has his heavy trousers on, then another fleece blanket, then a silver survival blanket which is tied round his legs to keep it in place. He also takes around 6 handwarmers with him which his dad activates as needed during the match. He might look like an oven ready turkey but he is warm! Image Robert's main problem is cold hands and feet but a lot of that is due to the heart medication he is on.

Eun
Thanks, unfortunately I'm not very good at sewing but sounds like a great idea!

Mum does get tena supplied free from her M.S nurse, it's how they are stored at her home that I have a problem with. Mum used to be fine years ago, a very glamorous woman and always on the go. She is now 52 and was diagnosed when she was 40, it's only over the last 2 years that she has deteriorated so bad that she now needs help with everything. It has knocked her confidence and she gets very upset. It has been so hard for the whole family to get used to, to the point that some family members won't visit her anymore. She has other carers in and sometimes they don't empty the bins or will leave tena pads on the side. It saddens me that it has become something everyone has to get used to, and I want to change the way people think about disabled people.

Are you happy with how the sani bin works? Do you find it expensive to buy the nappy sacks?
Eun I'm sorry to hear your son gets so cold Image Sounds like you wrap him up very warm
I'd be really grateful if you could complete the quick survey Image
http://www.surveymonkey.com/s/95ZGMJ2