Last reply 4 weeks ago
Questions for a Carer?

My husband and I are going to do the Twitter Takeover for a weekend at the end of April. I was wondering if you have any questions you’d like to ask a carer? My husband (obviously) loves me, but he has his annoyances with MS. He worries all the time about me. He has had to miss work because of “our” MS. So, I thought a good subject for our takeover might be “ask a care person” or even those of us with MS could express what we think about those that care for us – whether it is good bad or ugly. I can repost from here if you want it to not have your Twitter handle. Or perhaps you have a story about a doctor or nurse. I’d like to have a few questions for my husband to answer about our daily lives taking care of my stubborn self. We have stairs in our new home – and I’m learning to do them quite well. He’s less than amused. No two of us are the same, so we would *love* to answer questions about how he handles situations with not only me with MS, but our son (he’s 12). So ask here, or log in 19-22 April and ask then. We’d love to have a community conversation and learn what support looks like everywhere!

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arwa_petropoulos
3 months ago

Your son has MS too???


mayvar
3 months ago

No. Sorry if I made it seem that way! He does have a lack of myelin sheath, but not MS. I pray to the gods he doesn’t end up with MS, but each day I feared it may come to that…..but no.

He is just part of the team of caring, and also hubby has to balance me and child. That’s what I was trying to say. My bad!


grandma
3 months ago

Hi @mayvar and welcome. I know you’re on the other side of the pond and things are different there, so my expiences probably don’t exist for you. My other half was officially my Carer for 20 years, but in the uk, you get ‘Carers Allowance’ of £65 a week, but it comes to an end when you’re 65 years old regardless of how ill or disabled the person is. My other half stuck it out for 18mths and then left. He was old and ill himself and we couldn’t see any other way round it. We are best of friends, and he only lives round the corner in a council controlled old persons apartment. I have had to find a new carer, well under 65 ! but it has taken me 2 years. Mr council (I don’t know what your equivalent is) have installed me a through lift so I can go upstairs, and a huge ramp at the front if the property so I can get in and out either in my mobility scooter or electric wheelchair. Do you have any help like this if you need it in the future? If not, you will have to make plans if you are planning to stay in the property, I will have to repay them if I sell the property but as I’ve lived in mine for 42 years and have no plans to go anywhere!

But if you’re planning on staying, make small changes now, if you are doing any sort of DIY, take your circumstances into account and make changes now if necessary, it could save grief in the long run. Our famous NHS have been great, I am about to take delivery of a hospital type bed so if I need ‘hands on’ care in the future, it will be a lot easier. They have already installed three sided frames round the toilets and handles in the shower and a removable shower seat so it means everyone able bodied included can use the shower. All these things make a huge difference to make sure that everyone can live together without grating on each other’s nerves. All helps to help keep the family together


mayvar
4 weeks ago

We all have marriage issues here related to insurance. Some people get divorced just because of insurance. It’s terrible! My husband is younger than I am, sometimes he acts more like a child! Our Council is like the Township/City or even a private organization that volunteers to take care of private citizens here!

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