64 with Friedreich's Ataxia: Hi My husband has... - Ataxia UK

Ataxia UK

4,082 members4,657 posts

64 with Friedreich's Ataxia

Mary_Dixon profile image
10 Replies

Hi

My husband has Friedreich's Ataxia and due to the increasing severity of his condition he moved into a nursing home four years ago. He is hugely compromised by his condition as in addition to the physical limitations he is also blind and has a hearing loss. As his speech is very difficult to understand he has limited engagement with other residents in the nursing home. Depression is becoming an issue. I visit and take him out three to five times a week. Does anyone have any other suggestions about how I can support him? Thanks

Written by
Mary_Dixon profile image
Mary_Dixon
To view profiles and participate in discussions please or .
Read more about...
10 Replies
HarryB profile image
HarryBAdministrator

Hi Mary

Thank you for your post. What a difficult and horrible situation both you and your husband are in. Depression is awful, particularly as it makes the symptoms of FA so much more difficult to manage and to live with.

Although I have a cerebellar ataxia I don't have any experience of caring for someone with ataxia. However I cared for my Mum through a three year battle with cancer. We found she was very receptive to smells and to touch. I used to massage different areas of her body regularly which I know she looked forward to as she found it so relaxing and therapeutic. This was done with many things from E45 lotion to lavender oil and was often done in silence.

I don't know if this is something your husband would enjoy or be receptive to, indeed any complimentary therapy.

It is difficult and tiring to visit and care for someone regularly, even more so if they have both physical and mental health problems. Please try and make sure you are looking after yourself, both for you and your husband's sakes

Very best wishes

Harriet

Mary_Dixon profile image
Mary_Dixon in reply toHarryB

Many thanks for this suggestion Harriet. I think David would really enjoy this treat- I'll give it a try .

Thanks again

Mary

Litty profile image
Litty

I hope the massage helps, it sounds so hard.

Just an aside, I am spoilt and have a massage twice a week and I use Cetraben cream that comes in a handy pump. I have several pumps on the go.

IF your husband can cope with technology. I know that my sister (also in a home) finds talking hard and uses a machine to help her. My children found me an App for my iPad too.

Hope this helps x

Mary_Dixon profile image
Mary_Dixon in reply toLitty

Thanks Litty

Sadly David has very little independent movement and no fine motor control so he can't access technology independently.

Also (please excuse the gripe and moan), but because his support needs are deemed to be predictable he doesn't qualify for Continuing Healthcare funding , therefore a lot of money is spent on the home costs, not much left for professional massages.

wobblybee profile image
wobblybee in reply toMary_Dixon

Don't consider it moaning, it often seems very unjust the way things are assessed. Just last year I went through this process with my Uncle, it's degrading to say the least. Can you ask for a reassessment in due course🤔xBeryl

Litty profile image
Litty in reply toMary_Dixon

That is a real shame.

So sorry x

february profile image
february

Dear Mary, This must be a very hard situation for you to see your loved one (husband) having to deal with his FA. I send you and your husband my blessings! I have ataxia, although not FA, and am on a perscribed medication for depression. Any chronic illness can cause one to be depressed and I find medication just helps me deal better. I do feel sad at times, although this is short-lived, not clinical depression like before I started taking this drug! My best to you..., ;o)

Mary_Dixon profile image
Mary_Dixon in reply tofebruary

Many thanks for your kind comments and support.

carol31271 profile image
carol31271

Hi Mary, my heart goes out to both of you. I have FA I have found foot massage to be of great benefit, I manage to do it every night as my feet get very tight,hurt a bit enough to disturb my sleep.Would the staff their help? It's very simple to do small circular motions heel to toe. I use baby oil ( fairly cheap and does not interact with medicine ) another thing that shouldn't cost too much is visiting gardens that can be accessed, that provide touch and scent experiences that you can enjoy. It sounds like the staff need to be more creative and helpful to both of you. speak to the manager their if you haven't already ( I expect you have, sorry ). Carol☺x

Mary_Dixon profile image
Mary_Dixon

Thanks Carol, I take David out two or three times a week and if the birds are tweeting loudly he can hear them and he does enjoy that.

Not what you're looking for?

You may also like...

New to Friedreich's Ataxia

I'm new here..my nearly 13 yo son has just been diagnosed with FA. He was diagnosed as dyspraxic 5...
crackerwest profile image

Hubby with ataxia

Hi my husband was diagnosed with cerebellar atrophy 8 yrs ago he was then 55yrs he's been in a...
Dishy profile image

Cerebella ataxia

My husband is 33 yrs of age and recently been diagnosed with cerebella ataxia. Within the last 3...
Kirsty34 profile image

Cerebella Ataxia

Hello, this is my first post. My husband has been suffering with Ataxia for about 20 years now....
Kazkaz profile image

Undiagnosed Ataxia

Hi My son is 4, and has an 'Ataxic gait', but he has no diagnosis. He has had lots of tests (2 MRI...
Mango1983 profile image

Moderation team

See all
HarryB profile image
HarryBAdministrator
VE93 profile image
VE93Administrator
WendyBom profile image
WendyBomModerator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.