Taking care of a partner with a disability can be a labour of love

Perhaps the most overlooked people in the world of disabilities are not the people living with ds abilities but those living with them – the husband or wife who take cares of their loved one.

They are the family carers who devote so much of their lives doing all sorts of things which can include dressing them, feeding them, washing them and even assisting with toileting needs.  And a that, and more, adds up to great deal of hard work.

My beloved Lisa pushed me in my wheelchair around New York City in December 2014. Here we are at te top of the Empire State Building.

My beloved Lisa pushed me in my wheelchair around New York City in December 2014. Here we are at the top of the Empire State Building.

As I have multiple sclerosis, my loving wife Lisa is also my carer. She fastens buttons, puts on my socks, helps me to shower, makes sure I can eat the food on my plate with my one good hand, does all the housework without assistance and takes care of the garden. What’s more she pushes me around in a wheelchair.

Lisa is reluctant to be labelled as a carer, however, saying that she looks after me out of love as my wife. I am sure many husband and wife carers feel exactly the same way.

Each caring situation is unique and carers have many different needs.  They may need information about entitlements, services and individual and group support and social opportunities.  In the UK, every family carer can also undergo a Carers Assessment which could open up many opportunities for them including time out from caring, sitting services and physical help with their caring role.

By joining a carers’ support group, they can socialize with their peers and get help with their entitlements to benefits and services, breaks, education or employment.

And they can get help to access grants and benevolent funds so that they can buy items which will benefit them in their caring role.

Really important, though, carers can join a carers’ support group where they can have a chat and get a chance to meet new friends.

 

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Wheelchair partners – from ‘my rock’ to hard places

wheelchair young wheelchair mid

Wednesday’s question about staying with a partner who used a wheelchair was quite enlightening with a much greater response than expected. And, while the ‘research sample’ was not representative of society as a whole, it certainly brought out some personal tales of love and others of sadness.

I am not a researcher or a statistician so there will be no attempt to analyse the answers in terms of numbers. Detailed facts and figures are not what we need, it’s more an impression.

When looking towards the future, most people answered that they would stay but those that spoke from experience had both happy and sad stories to tell. Here are just a few:

Keith: My ex waited for my final diagnosis .. 34 years down the pan ..lol

Sarah: Damn right I would, I waited 29 years for my man, and I would never leave his side xx

KD: That’s a great question, because I’m the woman in the wheel chair, and had meets with my cane, and they told me they didn’t date women with canes…. I haven’t bothered to try and date now that my legs are going.

Simone: I would, but my ex-partner didn’t… 😦

Helen: My husband is my rock since I becoming paralysed… If anything it has made our relationship stronger…

Jesse: My wife just left 2 months ago.

Maggie: I DID STAY….RIGHT TO THE END. AND WOULD HAVE HAD IT NO OTHER WAY….MISS THAT GUY SO MUCH…

Karen: I have given my husband the option to leave on several occasions. so far he has stayed but I know he has considered leaving.

Antonio: 33 years she has stood by my side, led, had my back . . .she has pushed and pulled when we needed to. . . so I would without missing a heartbeat!!

Janice: Mine left me to fight this mostly alone except my Dad, Stepmother and Stepsister that isn’t including the dogs Including MY dog.

Tami: Many of you are VERY blessed! This is my 2nd marriage; I’m not sure if he’s on his way out or if I’m giving him the push that he needs to “go”… I just know that it’s happening because I can’t stand the thought of making him stay & I feel HE can’t stand the thought of having to stay – It sucks because I’m only 48 & I’m already seeing myself alone for the rest of my life – But it IS what it IS I suppose.

Jason: I’ve just started getting worse and using a cane 100% of the time now, my fiancé of 5yrs now decides this isn’t for her, she wants a man that can run with her…. It’s not easy trying to stay positive and keep fighting this Monster.

Dave: Mine kicked me out. “What good are you for me anymore?”

Sammi: When I was first diagnosed I thought my fiancé of 9 years would be with me still now but sadly 2 days later he ended our relationship which hit me really hard. But I then met someone else 6 years later who I had told from the start of our relationship and when I started worsening after 3 years together it happened all over again…we split just before our 4th year together and the utter feeling of sadness and stressing coz of it I ended up being in a wheelchair myself and now live alone!! With just my mum who’s my primary career and lives just round the corner, but I say it to her often that this is all round the wrong way it should be me looking after her not her looking after me!! But if I was with someone who was in a wheelchair I’d stay with them coz I’d see past the chair and see the person…. Sad it wasn’t that way for me and have lost faith that I would ever find that someone special who WOULD see past my chair.

 

 

Would you stay if your partner used a wheelchair?

wheelchair alone wheelchair couple_edited

Every so often we see, on Facebook, and perhaps other social media sites, a drawing of someone in a wheelchair – accompanied by a question along the lines of “If this happened to your partner, would you stay?”

Most people who reply say “Yes” but what of the vast majority who don’t comment?

Then there are sad tales such as people who use wheelchairs saying they don’t want to be a burden and telling their partners to leave them. Others who say that they are getting used, or have got used, to being alone since their partner left and still others who say that being in a wheelchair means they will never find a partner.

But there is hope as many people with disabilities do have loving relationship that survives one of them becoming a wheelchair user.

In my case, I have multiple sclerosis and have mobility issues and so need to use a wheelchair if there is a need to travel more than 10 metres or so; otherwise I have to sit and take a break.

Lisa is my second wife. We were married in 2011 after both of our previous marriages ended in divorce. But, here I must say that my first marriage did not end because of MS. I kept nothing from Lisa before we got married; She knew I had MS and what it could mean. Yet, knowing the problems, Lisa said “yes” to my proposal and we were married on a Florida beach at sunset on October 31 2011.

lisa blogNow, I’ll let Lisa take up the story:

Long ago, when my grandfather was still alive, all I ever heard from him is that he wished God would take him. See, he had MS and I, as a child, didn’t know much about it. In fact, at that time, no-one knew much about MS. My grandfather chose to ‘suffer’ from his disability while Ian ‘lives’ with it.

You might argue that everyone suffers from MS but that is just not true. Ian decided long ago that he would focus on those things that he can still do and not fret about what is no longer possible. We have a very full life.

We both enjoy travel. While Ian felt more free riding about on his scooter while on holiday, I prefer that he use a wheelchair, mainly for selfishness on my part. He, on the other hand, is anything but selfish and the scooter has now gone1. He cares about others who live with MS because he knows that he is in a better position than most.

Sometimes I worry about how MS will progress inside of him in the years to come. He doesn’t worry about it at all and he is right, there is nothing he can do about that, so why worry.

 

 

1 Yes, the scooter has gone, for the simple reason that, if it ran out of power, it was difficult and painful for Lisa to push me. We know, it happened just the once. Now, I have two wheelchairs, one powered, one manual. The power chair gives me independence to do things by myself while the manual one is more useful for short trips and if we go out in a friend’s car. Anyway, Lisa says that she loves ‘pushing me around’. LOL. Oh, and the power chair can be pushed if it ever runs out of ‘juice’; best of both worlds.