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Topic Power Chairs - a blessing and a curse Go to previous topic Go to next topic Go to higher level

By micjeffers On 2010.06.27 17:04
Hi, I'm new to this website and I am so encouraged by the honesty and helpfulness of all who contribute. I'm venting today. My husband (PDr) is 68 and has been unable to walk for four years after a long hospitalization. We started with a power chair from the scooter store and progressed to a rehab chair with more support. Problem is, when he gets tired by late afternoon his driving gets pretty bad (he refuses to take naps). As some of you probably already know, driving one of these chairs in the house is tricky because of tight spaces. He has put large holes in walls, pulled doors off their hinges (even with 36" doorways and "piano" hinges). He drags some furniture and bulldozes other furniture. The kitchen appliances are dented and damaged. We have little furniture in the living areas. His driving is getting worse but I can't deny him this freedom. The problem is that the destruction of our home is sending my stress through the roof. I can deal with it sometimes and other times I lose it. Has anyone got some advice for me for the times when I just can't deal? I'd be grateful for any advice and the opportunity to just vent.

By Emma On 2010.06.27 20:09
Welcome to the forum, we are always happy when someone finds us and joins our "family". My husband doesn't have a power chair yet but that's coming soon and I'm dreading it for exactly the reasons you state. Even without the chair our house has suffered considerable damage already. He bangs into everything with his walker so we too have holes and dents. I have taken all of the interior doors except for the guest bath off the hinges. Between dropping things, spilling and bumping into stuff most of our furniture is trashed. We have wood floors that have been destroyed by spills, skid marks from the walker, urine, you name it. The there was the time the toilet overflowed and he didn't tell me. By the time I discovered it there was thousands of dollars of damage to the ceiling, drywall and carpet in our finished basement. I don't even want to get into what the carpet in the bedroom looks like. My husband also has REM sleep disorder and acts things out in his sleep. One night he got up and threw a heavy object at our stone fireplace. A big chunk of mortar came out and the hearth was smashed to pieces. Another night he picked up the TV on his bedroom dresser and dropped it back down on the same dresser taking a big chunk of wood out of it. Seeing our house in this condition depresses and upsets me. I have from time to time sat down and actually cried about it. Then I feel guilty for being upset by it since it's just "stuff". However, the other side of that coin is that a house and furnishings represent a huge investment and our homes should be our refuge. Since he can't help it and I can't change it my strategy has become to just accept it. I clean up the best I can and move on. There is no point in fixing or replacing anything because the new stuff will just get destroyed too. I know that someday he won't be living here anymore and I can fix and repair then ... if we have any money left by that time. In the meantime I throw blankets over the furniture and I've put indoor/outdoor rugs on the wood floor to cover up at least some of the damage. They are flatter than other rugs and clean up easy. It looks like crap in here but the few people who come to visit understand. It really is depressing though so I understand completely what you're saying. Unfortunately I think that it is one of those things that will cause your patience to wax and wane. Like you said, sometimes you can deal with it and other times not. I hope that it's helpful for you to know that you are not alone.

By lurkingforacure On 2010.06.27 20:46
Emma, this may not make you feel better but I appreciate your sharing what to expect. I too take a lot of pride in our home and bust my a** to keep it nice for our kids so their friends will feel welcome and our kids won't be embarrassed. We don't have the issues you mentioned but I have noticed my husband, usually fastidiously tidy, just leaves his clothes on the floor wherever he takes them off, shoes, socks, pants, shirt, all strewn over kingdom come. It is hard to nag on our kids to pick up after themselves when they see their dad slobbing stuff all over the house. This has been going on for a long time and I see it get worse every month. The kitchen is another story, as we all know.

I can't help but wonder if there is anything those of us behind you could do proactively in anticipation of these issues....tile floors? Removal of walls so there are big huge spaces with lots of room in them to navigate eqipment, like walk in showers, etc.?

I thought I had a pretty good idea of what lies ahead but honestly, forgot about this aspect. I know one can never predict everything but this at least got me thinking ahead. I would also be very depressed after working so hard to make our home nice all these years (I've done all the work on it myself, down to acting as contractor for any work needing to be done that I couldn't do) to watch it get trashed little by little, and to have to live in it on top of that. I don't know how you do it, this is very hard to think about having to deal with in addition to watching your husband suffer with PD, hugs to you.

By parkinit On 2010.06.27 23:19
WOW - this is a tough one. We started with the power chair, but I can see where this could develop into a problem. We've had a few broken items already by my spouse's chair. and he practices backing down a narrow hallway and often bangs into the wall. Sometimes I just hold my breath. I, too, wonder how I could preserve our home.

I'm thinking it may be a good time to store away some furniture. We've made 2 of the bathrooms ADA compliant for him and are making some other home changes to give him more room.

By micjeffers On 2010.06.28 09:54
Emma, thank you for expressing your situation so well. My thoughts are the same. It's just stuff and it isn't really important. Some day he will not be here and things can be fixed up later. This helps me sometimes but other times it causes me to feel depressed and angry. It really does help to know that someone really gets this. It seems petty given all the things we have to cope with as caregivers, but it's the one thing that can break me down more than anything else. This forum is a God send. I'm so glad found you.

By Emma On 2010.06.29 14:12
Lurking - I'm glad that my post got you thinking. You are wise to prepare ahead. For me flooring is the biggest bugaboo. I considered replacing everything with tile but decided that it's too hard for someone who falls regularly. Like I said, I'm just living with the trashed floors. What I have learned in hindsite is that furniture needs to be spaced out so there is room to manuver and if possible it should be kept away from the walls so that there is less chance of it being shoved and making a hole in the wall. When we had our condo built I had wider doorways put in but they still get banged up. We have a nice walk-in tile shower with seat for my husband but there's not enough room for him to manuver his walker in the room itself. I can do it but he can't. However much open space you think you need, you need more. Because we're in a condo our dining room is just a bump-out area. That got pretty banged up from my husband shoving his chair into the wall but recently my daughter's boyfriend put beadboard about two thirds of the way up the walls and painted it to match our trim. That has worked pretty well, it gets marked up but is easy to wash and so far no dents or holes. He put it in the entryway too. I want her to marry him:). The dining room table is a big problem too, gouged and scratched and water marks. I have a plastic tablecloth now, something I never thought I would do. The only piece of furniture we have that isn't trashed is our leather sofa. I think leather and/or slipcovers are the way to go. I also decided just recently that I needed to make a place in our house that was pleasant, in good repair and a sanctuary just for me. We have a nice sunroom that is separated from the living room by French doors. The wood floor in there is still pretty decent because it has a rug over it and my husband doesn't go in there much. So, I just got rid of all the furniture in there and ordered a nice daybed and a slipcovered chair for it. That is going to be my room to escape to. With the daybed I can also stop sleeping on the couch and someday it will be a nice room for my granddaughter when she stays over. I think that having a clean undestroyed room will help me. My advice is just look around your house with a critical eye, think about what you've read on this thread and start planning changes now. You will be glad you did.

By sannph On 2010.06.29 17:01
I am SO MUCH seeing myself in some of these posts! Our home is pretty much trashed because of my husbands frequent falls and reckless motoring in his manual wheelchair; we have holes in every room in the house except for 1 guest bedroom and guest bathroom and that is because I do not allow him in those 2 rooms. I do use the guest bedroom for a refuge--I have a comfortable rocking chair in there, my houseplants, and some of my favorite books. It's good to know that we aren't the only ones in homes like this. And I agree that it gets very discouraging; most women want a cozy, beautiful place to call "home." In spite of all this, I do love my husband and hate what parkinsons has done to him! I'm hoping for a cure soon so other families will be spared what we are going through on a daily basis.

By micjeffers On 2010.06.29 19:12
Here are a few things I've done to make my house more power chair friendly. The main thing is the flooring is a key item. the carpet we had was not good with a power chair. It started rippling like the water behind a boat. I replaced all our carpet with commercial carpet and the padding underneath is designed for wheelchairs. the carpet looks nice is is very cleanable. I was told I could actually use bleach on it with no damage. I have not had to do this yet. Our dining room table was a real problem too. after he broke off the legs with his chair, I just put it on the curb. We have a great room that is a dining and living room. So now there is plenty of room for him to go through but he still manages to run into the little furniture that is left. I set up banquet/folding tables for big family dinners. I replaced our beautiful oak kitchen table with one from Ikea. It is a round table with a pedestal that is very flat on the bottom and he can pull up to it easily from any angle without hitting one of the legs. It is easier for him to pull up to. However, he has pushed the table all over the room to get to the refrigerator. Our family room has no extraneous furniture - a couch, a recliner, end tables and lamps, and a TV on a console. On either side of the TV console, I have two ottomans that convert to a coffee table when there is company. Our inside doors and doorways do take big hits. Because he has to make a 90 degree turn to get into his converted bathroom, the door takes a hit every time. I finally had a family member just mount a thick piece of plywood to the bottom half of the door and painted it the same color as the door. It's now just hanging by one hinge at the top but it protects the wall behind it. I have solid oak wainscotting on one vulnerable wall so it is repairable. I've become pretty good at patching and painting the rest of the walls. I'll do this every few months when I have the energy. It actually makes me feel better to be able to do this. It's hard to keep up with him but he's worth it.

By Lotsapies On 2010.06.29 23:08
Our doctor would not prescribe one for my husband. He said he didn't want him to become to dependent on using one. So mostly he sits on the couch and sleeps. It is no wonder he has become so distraught and depressed.

By micjeffers On 2010.06.29 23:54
Lotsapies - How awful for you and your husband! It's hard to understand why a doctor would refuse to write a prescription for a power chair for someone with Parkinson's. My heart goes out to you both. Is this a doctor that you otherwise respect and trust? Perhaps if you and your husband told him/her of the negative impact this is having on your husband it would make a difference.

By Emma On 2010.06.30 09:34
micjeffers, I'm intriqued by your commercial carpet. I have shied away from it in the past because I thought it had to be glued down and I don't want to glue anything on my wood floors, but you have a pad. I'm very interested. Do you remember the brand and pattern or collection name? I might check that out. After reading all of these posts I'm thinking we should have our own Parade of Trashed Homes :)

By sannph On 2010.06.30 22:28
hmmm, a parade of trashed homes:) I used to be very embarrassed when people would stop in--our trashing begins right in the entry way. I've (somewhat) adjusted and try to welcome visits graciously because my husband needs to see faces besides mine!

By LOHENGR1N On 2010.07.01 00:06
The following is an example of warped humor and might be distasteful to some. No offence meant by it. The author claims it's med's time and they might need adjustment or anything else to get him off the hook!

Well now could this become a second or third career? Home demolition? From the inside out? Interior demolitionists? Can you see the headlines?

News flash! Interior Decorators thrilled to join up with Parkinsonians on the cutting edge of a new cottage industry, interior demolitionists equipped with powerchairs quickly dismantle homes for easy access to designers! Concept sprung from internet forum!

Reports coming in from around the world! (England) Yanks have latched on to a smashing idea! (Russia) We invented it first! (Japan) Car makers are checking into copyright and patent infringements. Claim they incorporated faulty controls which may have led to the launching of this idea!

Meanwhile back in the states; A grass roots movement has started to legalize power chairs for everyone claiming discrimination against the well. Just because they have a medical need doesn't mean they should have a monopoly on this they claim! (I'd better stop now before get everyone's feathers ruffled. Hehehe) Take care, best of luck and hang in there.

By micjeffers On 2010.07.01 13:32
Hi Emma In response to your question about the carpet, I don't know the brand. I think the carpet you may be thinking of is indoor/outdoor carpet. What I got is installed like a regular carpet. Think of the carpet that is in public spaces, like a doctor's office, that needs to be able to take a beating but also looks nice. Check with a local carpet dealer/installer. Good luck with this. It's worth the investment Be sure to tell the dealer why you need it and get the padding for wheelchair use. Let us know how you make out.

By micjeffers On 2010.07.01 13:34
LOHENGR1N - Humor is always appreciated! We all need to laugh and have fun.

By lynn On 2010.07.05 18:46
My husband declined cognitively so a power chair would have been a disaster! Instead we had him fitted for a wheel chair that reclines. this has been a godsend since he's in it all of the time and it prevents pressure sores.


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