My husband (a fit and healthy 75-year-old) calls himself my 'full time carer'.
However, the only things I need him to do are chores like: shop; cook and clean. The shopping is easy because we live within spittin' distance of a Tesco maga-store and he goes down there everyday (he drives). Cooking is once a day for an evening meal. Cleaning? Well, not as often as I'd do it myself if I could. He loves the garden and spends as much time as he can, gardening. He also goes out for lunch with a mate every 2 weeks.
I'm 62 and have late-onset Cerebellar Ataxia. I can manage everything else for myself apart from the cooking, cleaning and independent shopping mentioned above. I have an adapted bathroom (wet room); a wheelchair with a power pack for outdoors use and assitive computer techology which enables me to work and study from home.
My problem is: my husband is refusing to take me out in the car - I can't get anywhere otherwise. I have been out twice in the past 2 months - to the dentist and the doctor - and hardly at all over the past year.
On the advice of my Neuro Physio Team, I joined a local David Lloyd gym last April and the Physio Team came with me a couple of times to suss out the accessibility of the equipment and to work out a fitness programme for me. That was wonderful for a few weeks, until husband said he didn't want to take me anymore because it was 'imposing on his time'. It's a twice-a-week visit five-minutes drive down the road from where we live!
Although I'm busy with my daily work and studying, I've finally got to the point of not asking him to take me anywhere. He's always been reluctant to take me out for a drive or shopping but this emphatic refusal has made me really angry and wondering whether I should now report him for 'neglect'. Oh dear. That sounds so bad, doesn't it? But that's how desperate I am.
I'm feeling like a prisoner in my own home and there's nobody else around to help us. I've considered talking to my G P (if and when I see her) but I'm wondering if my husband's reluctance to take me out is a symptom of a bigger problem he has with my 'disability' so the G P might be reluctant to help.
As you can probably tell, I'm going around and around in circles here, but would really like to hear your comments and advice.
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SussexDodo
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You're an angel for replying so quickly. Yes, I've researched the local taxi companies for accessible vehicles but the costs of making these short journeys (5 minutes drive to the Gym, ditto the Docs or a trip into town) are horrendously expensive, The wheelchair does fold up but will not fold with the power pack attached, so it has to be a vehicle that takes an unfolded wheelchair. I'm still looking.
Thanks for the O U praise. Half-way to my degree now and new Module just started, so I really shouldn't be in here. I should be studying! LOL
Your husband could be in denial. He could be afriad how the condition affects you. Give him literture to read like "Ataxia whats that"
Tell your husband what you help you want from him and remind him marriage is a EQUAL partnership as in your marraige lines. If he says that you are imposing on his time remind that the things that you doing in the house take up alot of your time when you should be concertrating on managing and helping your condition with exercises. Tell him how you feel with his reluctance that it is making you feel like a prisioner in your own home. The Gym is a good idea and that the Physios suggested this as a ongoing help for your condition.
I'd see if you can schedule a phone appointment with the Dr so you can,talk it over with them. Tell the receptionist the problem so the Dr can research the options.
Most areas have a dial a ride (sometimes called something different) type service which is way cheaper than a taxi.
A charity like relate might be able to help you discuss it with your partner too.
I too have 'husband' problems. He wants his own life and I am superfluous. I get very angry because I didn't ask for this. So much for marriage vows...in sickness and in health.
I have got a carer for 4 hours per day Monday, Wednesday and Friday. She drives and I have a wheelchair adapted vehicle, so we go out and about. When we don't go out we wash my hair, play games, try on hats ((I am an avid wearer/collector of hats).
She is terrific company albeit for a few hours per week. It beats being alone, my husband goes out every day
I'm so pleased to meet an OU student with Ataxia. I have FA (in a wheelchair F/T). I graduated from the OU in '95 - i can't speak highly enough of the help they gave me re specialised software, comb-bound units, amanuensis for exams, a helper at Summer School etc. I then went to law school. I recently went back to the OU to do an MA - i've completed A850 and A861 - i still have to do the philosophy dissertation module. What subject are you reading? i would love to hear how you get on.
If it's any consolation, i also have a husband who ''gets on my nerves'! Seriously though, and on a practical level, Fifa's advice seems sound - even if it was just a couple of hours help with cleaning.
Dear SussexDodo, I live in the States, and transportation is different here than in the UK, I'm sure. We have a special bus service we can call that's inexpensive, and has wheelchair access (ramp). You might want to call your Social Services (I'm sorry, I don't know what it's called in the UK?) office, and speak with an adult services worker regarding possible transportation options, as well as the way you're feeling. I'm a retired social worker, having worked for the State of Michigan's Dept. of Social Services for 28 years. Here we had volunteer drivers who would transport people to doctor appts., shopping. etc. Also, I would try to talk with your husband and see if he would take you out at least once a week. Maybe you'd like to meet a girl friend (s) for lunch, seeing how he meets his friends every two weeks. Maybe he could take you, and your friend could bring you home. Tell him you need to get out of the house occasionally, as it's healthy mentally to do so! Maybe you and your husband could pack a lunch and go to a park for a couple hours, on a nice weather day. Or maybe he'd be willing to take you with him sometimes to grocery shop. Sounds like this is a touchy subject, but I certainly don't blame you for wanting to get out and about! Also, kudos to you for doing an online study course!!! I admire you for that! What are you studying and when will you graduate? My best to you..., ;o)
Hi Dodo
Been pondering your situation, have just done a little bit of surfing and found quite a few links to community transport/shopper mobility that appears to be non for profit organisations that provide transport for local residents in their area. Have a look at your local council as a starting point. I really hope this helps it is so important for you to get out of the house and interact with others!
I have to say I am very lucky and have a wonderful husband. When we saw the genetic specialist and got the positive results for SCA6 his first words to me were - don't worry I will always look after you. I am only in the very early stages at the moment but the condition is ours not mine and I hope that this will stand us in good stead to face what the future throws at us.
Hi again, i just thought - do you manage to go to tutorials? I found it so important to meet with other students. I know that you can have online tutorials but perhaps you could get out to meet people on the same course. Just an idea.
Morning Cherry. Really sorry to hear about yr difficulties. My thought was - do you have a Motability car via DLA/PIP. If so the car is for your needs and requirements. And as such he is really not in a position to deny you access.
Also, they will cover another driver at no extra cost, you are allowed 2. Could you get a friend to help drive you?
Access the carer's department of yr local council. We have something called Access Buses around here but they obviously have to be booked a couple of days in advance.
I have found there is a lot of help out there - the one difficulty is knowing the right questions to ask the right people. Age uk are very good, too.
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