Struggling

[Jiempies]

...i really struggle to take care of my wife having MSA

[Yanno]

I’m so sorry that you are struggling. I think all of us carers find things difficult at times but we are well supported by the MSATrust, hospices and the NHS here in the UK. South Africa may be very different.

Is there any particular advice that others on this forum can help with, there are so many caring people here who would be very willing to help from afar.

Take care, Ian

[Whitefeather1]

Hi Jiempies, it's hard and it's painful , I feel your struggle. Do you have any support from family, friends or hospice. I've found them invaluable while looking after my friend.

It's important to take a breath and take time for yourself. I've found meditation has helped me so I can just sit and be.

We don't always feel it but we have an incredible strength deep within us.

This group has helped me so much with the support and advice given . Sending you and your wife strength and love x

[colourwash]

So sorry to hear this Jiempies. I also struggle. My husband has a good support team - OT, community matron and speech therapist, my family are really helpful, and a carer comes in for a couple of hours once a week so I can get out. As I'm sure every carer finds, some days are better than others but I'm on call pretty much all day and it's exhausting, sad and lonely.

You don't say exactly how you're struggling, maybe you could let us know. People might have some ideas to help you. A couple of you have mentioned hospices - can you let me know how they help?

[Photo1250]

Sorry to hear you're struggling Jiempies. Again, can only echo others. Share your concerns on here for advice, and search around you for whatever support you can muster locally.

[sittingontheprom]

Jiempies - This dreadful disease makes me so angry , the beautiful girl I married in September 1974 is but a shadow - she just asked me for a kiss - I'm in bits now😍🥰

[Jiempies in reply to sittingontheprom]

...angry...ANGRY...

[Derkie54]

Hello,

So sorry to read your post, as a sole carer I fully understand your position. Not sure whether you find it a struggle in general or have specific issues.

Being on here has been a great help, it's filled with supportive people who understand what you're going through and the people at the MSA Trust are also great.

Like you I find some days a struggle, my wife has no mobility at all and needs help with every task like dressing & washing and I'm finding it increasingly difficult to get her in the car so we go out for walks a lot.

We use a wheelchair in the home as well as outside, the only thing we don't get is physical help, it's just me for everything, probably like yourself.

I would like to give you some useful advice but I can't.

The only thing I say to myself Is nobody guaranteed me an exciting and trouble free life. You have to take what comes, some days I'm sad and some days I'm lonely .

That's just how it's turned out, I might not like it sometimes but I'll do the best I can to support my wife and enjoy any happy moments that come along.

When I was a lot younger, living at home and complaining about something or other my mother said " You've only got 2 choices in life when you have a major setback, give up or plod on "

So I guess we all plod on !

I took L to a garden centre last year and I must have looked a bit down, an elderly lady was walking by and as our paths crossed she held my arm and smiled as if to say I know it's hard dear but keep going.

I don't think I've helped you much but like many others on this forum we do understand.

Take care.

Derek

[Jiempies in reply to Derkie54]

...thank you derek...you help...shalom