Forum

Annoyed/Upset/Disappointed

Hi, In readiness for getting a power chair, I’m having a low-threshold front door made so it’ll make it easier/comfier for me to get in and out. The bloke came yesterday to measure up, and suggested we sell our current front door as it’s only a couple of years old. When I mentioned this to my husband, he said that we weren’t going to sell it - we’re going to store it in the garage so that it can go back on when we no longer need a low-threshold door! He basically thinks all the adaptations that have been suggested by the OT and Wheelchair Services are short term, I assume because he’s expecting me to soon be bedridden, need a carer, be in a nursing home/hospice or be dead. He feels all the adaptations are cheap and of poor quality, and he wants them taking out ASAP. If you recall, when we had a quote for a thru-floor lift the other week, he asked how much it would cost to take it out again! I’m looking into buying a power chair privately as Wheelchair Services have said it’ll be around 6 months after I’ve had an outdoor assessment before they can provide one. Hubby wants me to wait for Wheelchair Services, presumably because he doesn’t want me to spend my own money on something he regards as short-term. My husband isn’t a bad person, I just think that he feels like he’s losing control and that our house is slowly starting to resemble a hospital what with all the bits and pieces around. For me to have a quality of life NOW, means making a few changes NOW. He doesn’t want to make the changes, regardless of whether it’s the front door, ramp access etc, because he doesn’t think I’ll get much use out of it. It’s throwing good money after bad. On a positive front, I’m now having a cleaner come in to do the kitchen, bathrooms and downstairs loo every Wednesday. Hubby thinks 1 hour a month is enough and is sulking. Tough. Thanks for reading. Just needed to let off steam. Heather

hi heather

i understand why you feel mad.

my husband said “it looks like a disabled person’s house” when the OT put handrails in the shower/bath.

i said “well it is”

as for the cleaner, you have an auto immune disease therefore a compromised immune system.

germs lurk in the loo and kitchen so you NEED that cleaner.

they are such babies aren’t they? good job it’s us and not them who have this illness.

he’ll come round eventually so don’t you waste time and precious energy worrying about it.

carole x

People do not always react very rationally to bad news (like the fact that their other half is unwell and will stay that way, with all the limitations and disruptions and expense and narrowed horizons that go with that). We all have our coping mechanisms, mostly unconscious ones, and they do not always make much sense to an observer. It seems to me likely that your husband understands on an intellectual level that these changes are for keeps, but that emotionally he is not ready to accept this yet, so he is protecting himself - for now - with the soothing fiction that they are only short term. There is nothing odd or unusual about that - it is just being human! - we are all perfectly capable of holding two contradictory ideas in our minds at once…

Please try not to distress yourself with imagining that he thinks that you are on your way out. It seems to me very much more likely that he is just wrestling with some very difficult stuff at the moment. We all have to come to terms in our own time and in our own way with each challenge that life brings. You might just be further down the path to accepting the current situation than he is - you are seeing adaptations in terms of the improvement they will make to your quality of life; he is seeing them as very unwelcome hard proof of how rubbish things are getting. With luck, he will think differently when he sees a more able and happy you. I would suggest giving him time and trying to be patient.

Alison

Heather,

l was pregnant when l first started with this MS lark. And we were also house-hunting. Now it would be obvious to all that a bungalow would have been the most sensible choice. Looked at quite a few - and got guzzumped several times. [back early 80’s]

The house we eventually bought was not where l wanted to move to - and also it needed complete refurbishing - hadn’t even got mains water. And no driveway. Every bit of wood-work was rotten with woodworm - even the draining board and toilet seat. Get the picture!!! OH decided this was the house for us - l was feeling pretty rotten and did not put up a good fight - so we bought it - and 28yrs later we are still here. l did get a stair-lift fitted. But for years l was trying to step into the bath to shower - and l did have some nasty falls. ln fact, my friends were so worried about me that they were considering getting DIY SOS in. Then 7yrs ago - hubby was taken ill - brain tumour - and at one point could not do anything for himself. After, a very risky procedure he has recovered quite well but did have to give up work. Straightaway - he wanted all sorts of adaptions made - FOR HIM. We did have a large extension built across the back of the house - with large kitchen/diner/ wet-room and more bedrooms upstairs with en-suite showers. Everyone who comes into the house admire it and say how lucky l am to have all this space - but seem to forget that l struggled all those years living in a dump!. So l can empathise with you. My daughter and l tried for years to get him to agree to us moving somewhere more rural and a bungalow - but no - he wouldn’t budge. And in all that time he worked away from home - staying in smart hotels - whilst we struggled living in a building site. OH would keep starting new jobs on the house and then never finish them. lt took him 15yrs to get the driveway done. l got the REAL MEN in to finish off the work. He once knocked out the window frame of our bedroom prior to putting a new one in . lt was the coldest Feb in hundreds of years - and he left here on the monday morning leaving me with a toddler coping with gale-force wind coming through the aperture. You don’t forget these things. Now the place is really much too big for us - and l would love to move - but next move will be on my own - l have had enough.

eee, what a to do.

Frances`s reply makes my eyes widen and fill up a bit too.

No window and a baby in the house!

My daughter`s (the one that got married last week) ex was a lazy so and so. he used to start jobs and take eons to finish them. When she was heavily pregnant, she was carrying the washing up, upstairs to wash it in the bath. he was supposed to be re-fitting the kitchen…yet he let her carry stuff upstairs and never helped her!

My hubby was very reluctant to admit my needs in the early days of disability. I had to fall several times, getting in and out of the bath, before he put a shower in and wet floor.

Everytime I deteriorate and/or suggest another alteration or bit of equipment, he either ignores me or grumbles and says we cant afford it. i then work out a way to pay for stuff or engage an OT and ask for the councils help.

Right now, I am totally fed up of battling walls and doorways in our narrow hallway. It looks like a war zone, with all the lumps out of the walls and doorways. When I go out of the lounge and want to go to the bathroom, I have to first go into the kitchen and do a 360 turn around, avoiding the unit doors or cooker and fridge freezer. When I want to go into the bedroom, I have to do the former manoevre in the kitchen, then go down the hall, into the bedroom and do another 360 turn, to go into the bedroom.

I have had the OT look at it and she agrees we could knock the bathroom out and put it into a spare bedroom/hubbys den, then the area that was the hallway and old bathroom space, could become a wider area for me and my wheelie, plus an open area for hubbys pc and stuff.

I lay in bed plotting and drawing it, but dont know if it will ever happen. I reckon about 7k would do it. I am awaiting a decision on a DFG, but it could be ages yet.

However, if I could suddenly find the dosh, it could be done asap, no?

But, sorry, I have hijacked your post, havent I? I didnt mean to do that, but just to show you how my hubby is and to say I understand you.

He doesn`t see all this carry on as temporary, but I dont think he is thinking ahead, to getting rid of it all, when he gets rid of me!!! Well, I dont think so, anyway!

Eee love, I dunno what the chuffin answer. I know my answer, but it rarely aligns with my hubbys…same as yours eh? Our house also looks like a nursing home, but thats better than being in one, eh?

Hang in there hun. We`ll hang on in there together, you and me and countless others!

much luv,

pollx

…Perhaps you’d rather this forum was renamed “Only Females with MS” and any males had to go elsewhere, Carole ?

MS doesn’t discriminate between male & female - it affects everyone, and I’m most disappointed by this comment !!

Dom

I’m single so don’t have someone to contend with any changes I need to make. But I was assessed (and hopefully will get) a sheltered house which is part of a complex being built in my area. I know that long term it’s the best option as it will be suited to my needs if and when my MS progresses…but it does upset me that this is a reality for me.

It’s great in one way as it’s purpose built to deal with disabilities (wet room, wide doors and halls etc) and I hope I don’t come across as ungrateful because I’m not, but it makes me sad that I need this. That I have to think about these things. I’m a young woman with a young child and I’m having to think about things like wet rooms and wheelchair access. It’s a hard one to deal with so I can imagine that I would also feel this way if it were the person I loved who I was having to watch deteriorate or to think about them deteriorating.

I think that we like to feel we have a certain amount of control over things and because we can’t control our MS, we try to control our surroundings. That’s totally understandable but perhaps those who are in denial about our illness, might think we are being premature about these changes.

Dom,

I think Carol meant their husbands are such babies, with her comment. Not men in general!

That’s how I read it anyway

Bx

Meme,

All new-builds have to be wheelchair friendly now - wider doorways - low threshold doorways etc. Ramps in place of steps.

Don’t live your life like l have done - and struggle for years quite unnecessarily - Make life easier for yourself now. When my daughter was little - she loved me having my scooter - l would give her rides on it - and in the snow l could tow her on the toboggan.

When she was about 14 - she had her friends round for a party - we popped down the pub for a meal to give them some adult free time. When we got back - there she was with both of my scooters out in the paddock and with my ‘woks’ playing some duelling game. Taking it in turns - looked good fun. Woks were never the same again -the bottoms were all distorted. l just laughed.

My biggest regret is that my daughter never knew what l was like before MS. Thats the part of my life that l do feel robbed of.

I was diagnosed in august, now I’ve got an OT whose done an home assessment ordering me all sorts of gadgets for bathroom and some contraption for the bed. I want to shout SLOW DOWN I’m not ready. Maybe your husband is just overwhelmed with it all…and he is a man after all bless him. Great news about the cleaner.

Heather, I know I posted this before about your husband but are you sure that he’s not just thinking about the value of the house and wondering how much it would cost to put your house back to a state in which it could be sold if you all decided to move. I mean we’ve just built an extension, and I made all the arrangements and decisins to do with the extension (my husband was happy to go with my decisions) and for now I am more or less happy with everything but I asked a lot of questions before work was done and asked how easy it would be to undo jobs if we wanted or needed to. I’m just thinking about the future value of my house. Cheryl:-)

My husband says that he doesn’t want things changing around the house and that he can’t cope with my ms. When I was first taken into hospital with this (ms) he complained that this was a waste of his day off. I don’t need to be mystic meg to predict no future together for us. I had a lovely man helping me right up to the point of being diagnosed and then he gave up his flat and moved away. I still live at the moment with my husband but it is awful as he piles his paintings up in doorways, leaves me to get the shopping and to do all the housework. At work everyone was happy until the ms and now I feel as though everything I do is up for scrutiny. I think he just wants me to leave. Ms is a real pain in the rear