Carers

[TedTheMaineCoon]

Hi

Does anyone have help from carers for their PMR ? As I was thinking of getting help with housework .

[SheffieldJane]

Go for it if you can, it’s massively helpful.

[TedTheMaineCoon in reply to SheffieldJane]

Awwwww thanks ! I’ve struggled & now feel I need the support .

[DorsetLady PMRGCAuk volunteer]

I started having a cleaner in when I had GCA and hubby was ill - 13 years on she still comes once a fortnight and has become more of a friend!

But I do have arthritis in one shoulder and vacuuming plays havoc with that and sight in one eye so can’t see cobwebs -if I need an excuse!! 😉

[TedTheMaineCoon in reply to DorsetLady]

fair play ! Sorry you had GCA too ! I was in hospital a few weeks ago , suspected GCA !

Had iv steroids . But rheumatologist sure it wasn’t .

But think it’ll help having a cleaner to be honest . I have muscle waste in upper arms and thighs, so not got the strength I once had . Plus spinal stenosis .

[DorsetLady PMRGCAuk volunteer in reply to TedTheMaineCoon]

In that case, definitely required,.

[PMRpro Ambassador]

I don't have a carer as such - in fact I was sole carer for my husband until he died. I DO now have a cleaner for an hour a week to do the things I struggle with, Vacuuming is the worst thing there is for dodgy backs!

[JanboC]

I have GCA and have had a cleaner for the past couple of years. Luckily it's my step daughter who comes now, she cleans for a living, I pay her well and feed her at lunchtime. I couldn't cope without her!

[TedTheMaineCoon in reply to JanboC]

Awww good step daughter ! Bless her heart ♥️

[Lizzab]

I have a cleaner three hours a week. Family help too and my husband's carer will wash my back as I can't work out how to do that; can't get my arms round that far.

[TedTheMaineCoon in reply to Lizzab]

yes I have issues with reaching things & my back, legs and feet in shower 😊

[DorsetLady PMRGCAuk volunteer in reply to TedTheMaineCoon]

have a look at these from FAQs-

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Mayadill in reply to DorsetLady]

To reinforce this (I've added my 2p-worth to the lists!), there are loads of very simple aids that can make huge amounts of difference. Anything that can be made easy should be made easy and there are some very imaginative people out there creating ways of making them easy.

[Abbeynan82 in reply to TedTheMaineCoon]

Ahem!! You don’t need a reason, assessment or excuse for house or home help unless someone else is paying for it! I had assessment and was given morning and evening visits paid for by the Council (in Scotland). Ask the council care manager to arrange an assessment. Then, I hired an agency lady 3 hours a week for which I pay to help me bathe and do little laundry loads. I also have had Cleaners for years, since neuropathy. The result is I am not depressed, have the help I need, and feel looked after. You cannot expect your children to do your chores while you save your money. So, I think it’s money well spent if you can. Get what you can afford, would be my advice.

[TedTheMaineCoon in reply to Abbeynan82]

Great , I’ll get in touch with council care manager . I only allow my children to do as little as poss . They have their families , jobs and own children to see to . Plus they have health probs too!

Thank you for tip

Take care 😊👍🏼

[Mayadill in reply to Abbeynan82]

Get what's out there. Find out what's available. As I've said below, the Council collects my rubbish and recycling in a communal bin area. No charge. I wasn't assessed, I simply said, disabled, walk with two sticks it was then, no can do.

[TedTheMaineCoon in reply to Mayadill]

👍🏼😊

[SusyTe in reply to Lizzab]

You could get a long-handled sponge - they have them on Amazon. Helps me a lot.

[TedTheMaineCoon in reply to SusyTe]

oh ok ! Thank you 😊

[Karenjaninaz in reply to TedTheMaineCoon]

Make sure you keep moving all your limbs otherwise they will get stiff and stuck. I am 81 on oxygen for a non PMR issue but I make sure to exercise my arms by doing as much as I can. I can raise my arms straight up after 6+ years on prednisone.

I have a weekly cleaner and my 88 year old husband helps a lot.

[Mayadill in reply to Karenjaninaz]

Like you I have scoliosis (fortunately no oxygen) and like you I quite approve of housework. It’s constant regular exercise using lots of different muscles by no means to be dismissed. The only time I developed muscle weakness in a leg was after I skimped even by my standards when laid up by the vaccine. As you say, the critical thing is to keep moving.

[Lizzab in reply to SusyTe]

A flexible handle might work. Thanks

[Broseley]

Hubby does some dusting and all the ironing. I did get cleaners in a couple of times before diagnosis when I was in so much pain and exhausted I really couldn't do it. But at £60 for 2 hours I wouldn't want to pay that too often! Now I just do the vacuuming, taking 10 minute breaks every 15 minutes. I clean the bathroom. Everywhere else gets neglected unless we are expecting guests!

[jayemmemm in reply to Broseley]

I've given up dusting. The problem with dusting is that you dust a room and nine months later you have to do it again!

[DorsetLady PMRGCAuk volunteer in reply to jayemmemm]

Nine months? as soon as that....😏that's terrible..

[TedTheMaineCoon in reply to DorsetLady]

🤣

[Broseley in reply to jayemmemm]

Apparently it doesn't get any thicker after a while.

Occasionally I put my glasses on and inspect the corners and under the furniture. And then wish I hadn't!

[TedTheMaineCoon in reply to Broseley]

🤣

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

There's where only one eye comes in handy...😊.. well that's my excuse and I'm sticking to it!

[Broseley in reply to DorsetLady]

🤣🤣🤣

[herdysheep in reply to jayemmemm]

🤣🤣🤣

[Mayadill in reply to herdysheep]

Recycling aka extra work for women, which has to be done, along with the garbage. I live alone, I don't eat loads. How can there be so much of it! In this area people are expected to take it all to communal bins. Being disabled I get my very own wheelie bin outside the front door and a collection, which is brilliant (apart from other people filling the bin, but that's another story, memo to self get padlock) So every Monday night I solemnly load up my rollator three times, rubbish, plastics, paper and cardboard.

Not many things have to be done. My simple rule of thumb: will not doing something impair my life, applies across the board, having to ring the bank etc.

[TedTheMaineCoon in reply to Mayadill]

pretty rotten when others put their rubbish in your bin ! Hasn’t life’s simple things become complicated? I’m disabled too & we have communal bins . But if they are all full before bin men come , just end up with junk piled up around the flat !

[Mayadill in reply to TedTheMaineCoon]

Not by any chance in Brighton, are you. We're famous for piles of yeutch round our communal bins!

[TedTheMaineCoon in reply to Mayadill]

No , I’m inHertfordshire .

[Whippetygirl in reply to jayemmemm]

How do you know where the spiders are hiding.

[Mayadill in reply to Whippetygirl]

As long as they stay hidden! Last summer I was peacefully reading. Some guys were doing some work outside. Suddenly there was a string of expletives followed by "That's the biggest spider I've ever seen in my life!" Uhhh....Just stay outside, all I ask! I'm disabled and moving the furniture the spider has run under is beyond me. Already had ultrasonic pest repellents. Being an eco-type little friend of all the world I bought a natural spray claimed to repel. Can't of course say it worked but at least I wasn't invaded.

[sewinggranny]

I started off with a cleaner once a fortnight, but as further health problems have developed I now have a carer who comes in 6 days a week, for an hour. She helps me shower and dress, does the laundry, cleaning and will also prepare me some lunch.

[ChrisinNam]

I'm now basically unable to walk, having walked three miles a day, every day, up to about 18 months ago. My legs feel like they can't support me any more. I contacted Social Services, and they've arranged a carer for an hour every day. Saturdays and Sundays included. As I have a young house guest for the Uni holidays, sometimes I fine it difficult to find something for the carer to do. But that will change after September.

[TedTheMaineCoon in reply to ChrisinNam]

my legs have definitely got weaker & my muscles in thighs have wasted a bit .

Sometimes it feels as if my legs are going to buckle ! I’m not sure if that’s to do with the PMR , spinal stenosis or both .

[borednow]

I have had a cleaner for the last 16 years and would be totally lost without her. Best thing I ever did.

[yogabonnie]

Get it if you can! with or without PMR!

[Gimme]

I got a cleaner in 2020, as I had been feeling so ill for such a long time that I was unable to look after myself and the house. This was well before any PMR diagnosis. I've kept her on when I gave up work, as it is one thing less to worry about, and I can save my very limited energy for more pleasurable activities.