Any spouses of those with FSH MD?

@sherbear wrote:

Hello,

I found this site from a FB site FSH Friends.

My husband is 61 and is a full time wheelchair user. I am his wife and caregiver. I am 56.He needs assistance in getting into and out of bed with the use of a transfer board and sometimes a hoyer lift. I assist him in dressing, getting into and out of the shower. He uses a porta potty/shower chair. We do have a high boy toilet so at this point he can still manage to transfer to and from the toilet.

We started our journey walking together. About 13 or so years ago he began using the w/c. He had been able to stand up until about 3 or 4 years ago.

What’s your story? And, what do you do tomake your life better for the both of you?

Sherry

I just found this site today after a few days wandering the internet looking for community/support sites for caregivers. I’m afraid I had rather a bad episode of crying and frustration over the weekend as the pressures for a lot of care-giving related things sort of came to a head and blew up.

My husband has FSH MD. We’ve been married for about a year now, he’s 25 and I’m 33, and I’m still learning how to give him the best care I can. We met online over 5 years ago and over those many years realized that we adored one another and wanted to be together. This has been a huge change for me- I moved to Britain from America as well as entering into marriage with my wonderful husband. Trying to learn how to be a wife, and to live in a new country, AND give him the life of comfort and happiness he deserves is a *lot* harder than I thought it would be. In some ways its a lot easier as well. I was afraid physically I wouldn’t be up to the challenges, but that has actually been the easy part.

He’s been using an electric wheelchair since he was 14 or so, when walking & falling just became too dangerous and difficult. Like your husband he needs help to get into and out of bed- no lift just a lot of sliding between beds, shower chairs and electric wheelchairs. He can’t stand at all- though he has some very innovative and clever ways to lean on tables to support himself. He needs a pair of helping hands for a lot of things but doing things for him never seems like “work” its as natural as breathing and he often tells me when I say ” I don’t do anything around here” that it’s just that I don’t notice what I do. I love him so much that taking care of him and seeing him comfortable and happy gives me joy and makes anything he needs me to do for him seem effortless and not a chore.

It’s the mental side that is starting to take its toll on me. I had to fill in a LOT of papers to get a VISA and be allowed to marry him and then to be allowed to stay here. Every time I had to fill out employment and wages questions and put in “homemaker and caregiver” I got *the look*, and I could see it in their faces during the interviews “you’re a bum- you don’t do anything.”

I don’t have paid employment- my husband supports us with his benefits, he gave up trying to work because it was just impossibly difficult and he and I agree that after some very bad experiences with outside care that its just better for us both if I’m at home with him. But I feel like a sponger because I don’t contribute to us financially. I’m not even allowed to claim carer’s allowance as a condition of my VISA. I know my husband and his family value my presence and my caring for him . Everyone else seems to think I’m a bum- an immigrant with a husband on benefits is the lowest of the low. Just because I don’t get a piece of paper that says I worked X hours for X amount of money I feel like I have to slink between shadows with my head down apologizing to everyone I meet on the street for my mere presence. After a year living in Britain I still haven’t even managed to get a bank account- no one wants to give one to someone who has no wages coming in.

My parents comes to visit twice a year or so, around Christmas and then sometime in the summer. They’ve seen more of England than I have. They go on tours and sightseeing- I’ve only seen the bit of England I drove through between Heathrow and where we live and our odd trip to the supermarket when his mother takes us out instead of using the delivery services. My relatives ask me all kinds of questions about life here- I majored in History and its good that I did a lot of English history because I use it to make things up. I tell them all about life here, art, architecture- events. Its all from books and the news. How do you explain to your family that its almost impossible to go out of your house for more than an hour or so- they wouldn’t understand it. I don’t know a single person in this country outside of his parents, brother and grandmother. They are wonderful people and make me feel very welcome here, but sometimes it is frightening to realize how alone I am here and far away from my old friends and my family. I don’t often feel lonely because hubby and I are *so* close, but sometimes I get a flash here or there for a day or so.

I’m sorry I did’n’t mean to rant so much or to write a small novel- I seem to be having a bit of an emotional episode. Maybe that’s normal for any marriage at the one year point? I don’t know.

You asked what do we do to make life better for both of us. We talk, we talk all the time about everything. We express happiness, or anger, or sadness or frustration. We are each others’ best friends. I don’t know how I would get through the day without him and his humor and his patience and his encouragement and most of all the love. I know that sounds sickening but its true We laugh constantly- I know I don’t sound like it right now but we actually laugh our way through most days. We have a compatibly weird sense of humor that we can play off one another.

We also play a lot of games together- video games, board games, word games.

I know we’re not doing all of it right- its hard to know because I have nothing to judge by. Sometimes I think I’m being annoying to him by “over-helping” and other times I sit and look at whats going on and think I’m falling short and letting him down in areas where I could be helping more. But he didn’t ask for help with those things and I don’t want to be pushy or overbearing.

Just hearing that you and your husband have been together for so long made me smile and feel better. You must have had a few rough patches and if you can get through them I know I can too if I just pull myself together.