Being overprotective?

[lschick]

Hi all,

 

It seems all I do is whine on this site; sorry! But, this organization is really my only support in my strife to be an excellent caregiver.

 

Steve had two massive strokes back in Oct. 05. He is paralyzed on the right side, and aphasic. He's very lucky, in that he lives at home with me and our three children.

 

We recently aquired (inherited) a power wheelchair. Steve does pretty well on it, but he keeps running into all sorts of things, like cars (in the driveway, not on the street!!!) , walls, etc. We only use the power chair outside; our house is too small for indoor use.

 

Steve has actually already bent up the foot rests pretty badly. He also gets himself into "predicaments"; for example, driving into our small metal shed and getting stuck between the wall and the lawnmower.

 

I have tried to gently coach him in the use of his power chair, but he's always been very headstrong and has never taken any advice very well. To say the least, he's making me a nervous wreck! He reminds me of a bull in a china shop! He really enjoys the freedom of being able to get around without my help, but I'm just a my wit's end. I feel like I have to follow him everywhere. He wants to be more independent, but he's constantly getting into trouble.

 

Any suggestions in how I should go about getting him to be more careful? I know the stroke probably affected his sense of judgement, but he still has the same cocky attitude he always had! I'm just so afraid he's going to hurt himself.

 

Thanks for listening! :Tantrum:

 

Lyn

[kristina38]

Lyn, I don't have any experience with power chairs and some of my Mom's therapists had suggested one for her but I immediately had visions of exactly what you are describing your husband as doing. I opted for not getting her one for those reasons and a few others as well. I'd be interested in any responses people have here as well as I am still toying with the idea of a power chair for her but I'm fearful with her impaired judgement she'll get herself into too many predicaments. My other reasons were I don't want her getting too comfortable with a wheelchair, we are ultimately hopeful that she'll be able to walk again with a walker and I was afraid the power chair would seem "easier" to her than therapy. Which of course it is but the end gains will be worth it if she can become more independent out of necessity.

Kristina

[lschick]

Hi Kristina,

 

Yes, we also had hopes Steve wouldn't need his wheelchair for very long, but he's had quite a few setbacks in recovery.

 

We didn't even think about buying a power wheelchair, due to the price, but since it was free...

 

Steve isn't real comfortable in the power wheelchair, COMFORT wise, it's not nearly as comfortable as his regular wheelchair. He loves to ride around our yard and HIS garage, though...I just couldn't deny him the feeling of independence, if you know what I mean. I just wish he'd slow down a little. I yelled at him when he was tooling down the driveway in 4th gear! LOL!

 

I'm hoping he'll develop better judgement!

 

Lyn

[jriva]

 

Lyn,

 

I agree with Lin.

 

Does Steve have right side nelgect or a field cut that would account for his lack of driving skills? Or is it general impulsiveness that is the problem? If it's a right side nelgect issue you can step up your home grown therapies to help him learn to compensate for it---they can help a lot.

 

Jean

[kristina38]

LOL Lyn, sounds likes it's a good thing your husband and my Mom don't get together, they'd have a demolition derby! The stroke seems to have removed all sense of fear about things for Mom so now she's like my old Mom was after a couple glasses of wine. The other day she had me pushing her through our HUGE backyard through grass that needed cutting so she could inspect the fence. At times like those I wish I had opted for the power chair LOL My Mom is also right side affected with aphasia and my worry with those chairs is she tends to reverse everything. For example; no means yes, left means right, up means down etc. I tell her to lock her chair and she might push the lever the wrong way for an entire minute before she realizes she's doing it backwards so I figure with a power chair she'd have already ran over several people by that time LOL I'm still considering it but I'd like to actually have her try one in an enclosed area before aquiring one. How are they on grass or dirt surfaces? I'd like for her to be able to get around the yard not just on the driveway and such. Jean makes a good point about the right side neglect and vision problems as well. Mom has problems with both although not severe so that might be contributing to your husbands mishaps as well.

Kristina

[arogers]

Hi Lyn,

 

Judgement, impulsiveness, reversing words, ahasia....these are all issues my husband deals with in addition to right-side hemianopsis as a result of his left-side strokes. In no way would he be a power wheel-chair candidate with his vision - but if he had vision in both eyes the impulsiveness and judgement issues would be reason to "just say no"!! I do understand, however, the need for stroke survivors to feel independent. The balance between independence and safety might best be met through therapy?

 

Good luck with your demolition driver!!!

 

Warmly, :blush:

[lschick]

Steve does have right side neglect, to some degree. His vision is pretty good. His peripheral vision was tested in OT, and they were actually pretty impressed, but I'm not sure about depth perception. He does seem to crash into things on the right side, though.

 

Impulsiveness seems to have increased lately, I've assumed it's because he's bored. He was always so active, and never took "no" for an answer. He's also always been a risk taker. Those things have not changed! You'd think I'd be used to it, we've been together nearly 30 years LOL!

 

Jean: You mentioned home grown therapies...what is that? :blush:

 

Steve also has issues with his "regular" wheelchair. Trying to go through solid objects, etc. He also insists on moving his chair by crossing his feet and pulling himself around with his feet, other than using his left hand/arm to move the chair with the handrail...??? He has a pressure sore on his right heel from doing that. We had to have his AFO "blown out" on the heel because of the pressure.

 

I coach him all the time to watch out, but he gets mad at me. He thinks I'm nagging, or it's no big deal to destroy everything in his way... :bop:

 

Kristina: Steve's power chair is great in the grass! He sounds like your mom, always inspecting things. He used to try going into the yard with his manual chair, and would always get stuck and almost tipped a few times...so, the power chair is great, that way. He just needs to stay clear of the chain link fence!

[jriva]

Lyn,

 

My husband's OT taught him to use the "legs crossed method" of moving his manual wheelchair forward. He puts his neglect ankle on top of the other one and the brace---when he was still using it---did not drag on the floor. He does it a lot and has never had pressure sores on his heels. It frees up his working hand/arm to carry things around, not to have to use the handrail on the wheel. I'm wondering if your husband's brace was not fit properly to begin with? And they do change in fit after time and need to be redone.

 

As for home grown therapies to help with one side neglect I meant to continue, at home, the kinds of things they worked on in rehab. For Don that meant always approaching him from the right side/neglect side and always talking to him from the right side, even clapping my hands to draw his attention to his nelgect side to listen or speak to me. Bouncing a balloon back and forth so that he had to follow it with his eyes was used for both one side nelgect and balance issues. When my dad had right side neglect we played games like free cell---not on a computer, but spread out wide on a table top and when he'd miss plays on his nelgect side, I'd call attention to them. I don't think it matters what home grown therapies you come up with for one side neglect; it only matters that you do SOMETHING to work on it. Don's right side neglect is hardly noticable and the games did help my dad's a lot, too.

 

Jean

[kkholt]

Hi Lin,

 

First, can you give your husband some form of communication that if he does get into trouble he can contact your or friends. Another option may be to have someone modify the chair so that it doesn't go that fast. Also I would talk to him about his actions that could have consequences that affect more than him, and the two of you really talk about what could happen (this may eleviate some of your concerns).... However that may be more than he can cognitively grasp.

 

My husband in his search for independence did a lot of things without my permission (and still does) and mostly when I wasn't around. Making the decisions that not always had the best outcome was a good exerise for him to reflect on.

 

-Karen

[lschick]

Hi everyone,

 

Thanks for the replies...

 

Steve's therapists never really worked on getting him to pay attention to his right side. One doctor told me to always approach on the right, talk from that side, etc., which I do. As far as therapy, no...PT was always just trying to get him to walk...OT just wants him to move his arm. Speech gave up!

 

His AFO was adjusted several times, but I wound up demanding they completely remake it. It does feel better for him, but we've still had to have it adjusted several times. I have to say, I've been really disappointed with therapy and the accessory company. Sometimes I feel like we've been scammed (well, not quite), but I feel like I always have to ask for; no, demand~ CUSTOMER SERVICE.

 

Since Steve can't communicate his pain, they kind of blow us off.

 

I have tried to discuss the repercussions of Steve getting into "trouble" with him. He understands, but his personality has always been this way. We do have a special phone with a transmitter he wears on his wrist that will dial my cell, and 5 other numbers. He's never used it; he'll just wait for me to find him in his "jam". I feel like I have to check on him every 5 minutes, or whenever he's out of sight.

 

So, I'll just have to keep vigil.

 

Thanks,

 

Lyn

[jriva]

.

Lyn,

 

Your posts are giving me flash backs. All I can say is it does get better. Just hang in there and keep working with Steve and advocating for him. Some times the progress is so slow you don't really see it until you are able to read the posts of other members. Then you say, "been there, done that" followed by a smile and you repeat to yourself, "I REALLY have been there, done that and, thank God, we're not going back!"

 

Jean

[kristina38]

LOL She's giving me flashbacks too except I was never brave enough to get Mom the power chair to begin with.

Lyn, don't give up on him improving in all those areas. Mom made very little progress at all in the first 9 months post stroke and she was booted out of therapy several times. This last go round she made it through 8 weeks of OT and PT and her speech therapist was so impressed with her progress she kept her on for 12 weeks. I will give her a few month break (along with Medicare) and then we'll get back in therapy. I've found with Mom she needs some time to absorb all they teach her and use it for awhile then she's ready to learn more and try again.

Kristina

[arogers]

Hi All,

 

This is the BEST topic for me. I don't feel alone or even "unique" anymore!! I wasn't told to approach Bill from the right - and I've always arranged everything to "accomodate" the neglect rather than force him to move his head to adjust for it! Amazing, where is MY common sense???

 

Bill is at the stage where he wants to do things for himself that could prove disastrous - and he, too, chooses times when I may be busy to do for himself. Right now he wants to shower by himself - and although we have the right equipment, the bathroom is still probably the most "dangerous" room in the house as far has falls is concerned. I think he must know the dangers though because he hasn't fallen.

 

I get so tired of the need to advocate.....but it's a reality and the only other choice is allowing others to run over him and his needs. My opinion of a couple of his therapists is that his needs are beyond their abilities or comfort level. I'm sure some therapists do very well with patients who have different needs than Bill. I know he is a difficult and challenging case - but I've seen here the potential for a better and more fulfilling life for him. For the first time, the other day he said, "I'd love to be able to read again."

 

Not only Bill, but all of the patients I saw at in-patient rehab were taught to use their "good" foot to scoot their wheelchair along, using that foot to prop the weak one. Since his right arm is weak, if he used his hands to move his wheelchair, I think there'd be alot of going around in circles - and we all know we do enough of that!!!

 

I feel really blessed - he's never had to have his AFO adjusted or redone! Maybe I should ask that it be checked to be sure it fits correctly. I don't notice any red marks or sores though and he doesn't complain so maybe we are one of the few!!!!

 

Thanks sooooo much for this thread - and for thinking to ask the questions. You are all so precious to me!!

 

Warmly, :friends:

 

[jriva]

 

Ann,

 

When Don's not trying to carry something he used his left hand on the wheel to propel his chair forward AND his crossed feet. As I understand it, the foot action is what keeps you from going around in circles. One foot is all that is necessary to steer you in the direction you want to go. The crossed ankles are used when you don't want to bother with a foot rest which can be unfortable to use all the time. Don only uses his in stores or for long distances like in parks and the farmers market. Since we quit using the foot rest in the house, it sure has saved wear and tire on the door frame and furniture because he was always forgetting to use it which, of course, turned off to the side made his chair a lot wider.

 

Jean

[arogers]

Oops! I left the hand part out! Yes, Bill was taught to use his left hand then cross his feet! And yes, the use of the foot keeps him going straight......I remember being taught to float on my back in the water when I was a little girl - and using one hand as a "flipper" to turn me whichever direction I wanted to go! If I just used one hand, I'd go in circles!! Fluttering my feet propelled me. Not exactly the same thing, but it reminds me that everything works together - swimming, or "chairing"!

 

:giggle: