new carers and old hands

Caring for someone with MS
1

Hello, I hope no-one minds me writing this post.

I`m prompted to do so after seeing an old post revived by new carers.

I`m hoping my own experience will be of some use to others.

My hubby has been my main carer for around 18 years.

Prior to that I was a fit, active , outgoing woman who feared nowt!!!

We are now 64 and 68.

When I was 45 I began falling over fresh air and my left foot!

I was wrongly diagnosed with PPMS for a few years, before it was changed to Hereditary Spastic Paraplegia…I know, I`d never heard of it either!!!

It has taken my mobility, my bladder and bowels and some of my mind!!! But even so, I love life, still have a sense of humour and love to be able to offer support and advice to others on this forum, if I can.

The best tip I can give anyone in a similar situation is to think about getting outside care in.

I have 2 carers who come in to see to my personal care and take me out. It is paid for by Direct Payments.

It is too all consuming, tiring and relationship altering for one spouse to do everything for the other.

When stubborness is present, on either side, it can be detrimental to a relationship.

If anyone would like to know more about this, please do ask.

I wish all carers the very best. You have a difficult job, sometimes unpaid and unreognised.

pollsx

3 Likes
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Hi Boudica or Pollx …is it Polls and then a kiss or Pollsx?

My Mum has carers that come to her 6 times a day (if needed), 7 days a week, my Dad would like the same carers to come all the time (they change from day to day sometimes). Do you have the same carers coming to see you? How did you pick your carers as in did the local council provide you with a list of carers/care companies or?

Do you have any special dietry requirements? Gluten free? Dairy free?

Do you take any medicine to help with your bowel movements?

Thank you

Sam :slight_smile:

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Hi Sam, we`ve chatted elsewhere on the forum!

To answer your questions;

  1. I chose my own carers. They are both self employed. I had 2 others, who have both recently retired and they were on payroll. I wouldnt want to use an agency, as you never know who is coming…or even if they are coming.

My long term carer of going on 6 years, was recommended by a friend. My new carer replied to an advert my daughter had placed with a disabled group.

  1. I dont have any dietry requirements…apart from needing to lose weight!

  2. I take Laxido/movicol for my bowels. They are hit and miss and I eat extra prunes, figs, movicol if I miss a couple of days.

Pollsx aka Boudica.

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Hi Boudica,

Thank you for your reply it’s interesting to know that you can chose your own carers. I will mention this to my Dad.

Sam :slight_smile: