14 replies to this topic

[Pumelios]

Over 2 years ago, my FIL went in for outpatient surgery on a pinched nerve. He was a chain smoker (camel, unfiltered) and is a diabetic, so he had lots of odds against him. He had the surgery, (his surgery was I believe on C7 and C8, so I'm not sure if that helps or not.) came out of it with paralysis, but was regaining some movements and feeling when he feel flat on his face in the hospital. Since then he has had one problem after another. (lawsuit now pending) So I've come to you all to ask for help and to educate me.

First question, he has use of his arms (up down and across movements) but not his fingers and has no feelings in those places. Is he really considered a quad?

We have tried to convert my ILs home to accomodate his disablitly, but they are in the midst of a lawsuit. They live over an hour away from us and over 2 hours away from their other son, so by default we get all the "need help calls". We have started throwing around the idea of them moving closer to us, so it wouldn't be so hard on our family, we have 2 kids ages 7 and 2, and have lives of our own. (if that sounds cruel, I'm sorry) We have started contacting local builders in our area to see if they could have any wheel chair accessible homes they could build. To which we get a standard reply. "we could redesign any home" and I'm thinking, we don't have all kinds of money. We are slowly learning what kinds of things he will need, but need lots more help on what kind of things to look for in a new construction home or even who should we have build it. (are there special builders for handicap people?)

That's more than likely way more than you needed to know, but I just don't know where to start.

[hillarymcarter]

Yes, your father in law is considered a quad. Being a quad means you have some sort of impairment in all four limbs. It doesn't mean you can't move from the neck down (that is a tetraplegic).
There are some builders who specialize in handicapp home renovations. It is much cheaper to have a house redesigned than to build one. If your in laws have insurance (home or health) they could probably call and get a list of builders in the area that deal with handicapp home renovations. I would strongly suggest that you find someone who specializes in them because there are some things that you would never, ever think about remodeling. Simple things such as microwave placement and pipe placement actually matter! You may be able to find contractors in your area that specialize in this on the internet.
I wish you all the best and I hope everything works out for your family. I know you have a life of your own but you have to realize that everybody's lives are turned upside down right now and it is a huge adjustment. Good luck! I hope I helped!

[Pumelios]

I sounded pretty nasty in that post. I didn't mean to, I realize his life is completely different now, and we do try our best to help. I don't know how my MIL does it 24/7 (she retired to become his caretaker) and I feel we need to help her, but it's just a mess. How do you even start to straighten it all out?

Your post did help, and we will try to do some more contacting if the insurance companies to see if they have a list of builders or contractors.


Thanks! I'll be reading more.

[hillarymcarter]

I didn't mean to sound like I was chastising you. I think what you are doing for them is great. You are right, you do have your own life and you have small children that need you! Your in laws may need your help right now but your immediate family has to come first.

As far as sorting everything out.........well, I think time is the only thing that can fix that. My husband got hurt 8 months ago and our lives are chaotic and definately not our old normal. Our house is torn apart and we are trying to remodel right now. I'm only 22 so believe me I have no idea how to handle something like this. My husband and I had just graduated college and gotten married 5 months before his accident. I had just gotten my first real job and I just had to put life on hold.

All I know is we take everything hour by hour and we do what we have to do. Sometimes in life you don't get a lot of choices and you just have to take care of your loved ones however you can manage! If we have a horrible day (like today!) we just promise each other that we will wake up tomorrow and start over. Otherwise you will get in way over your head! We also can't think about where we would be if this hadn't happened because it just makes us bitter.

If you need any help/advice I am here to listen!

[AHolland]

Hi Pumelios,

Recently I built a new home for myself, incorporating a lot of items into it because I am in a wheelchair. Here is a web site for one of the local groups that does accessible housing. You should be able to pull some information from it. I presume you are an american because you smoke camel cigarettes and this is a Canadian site, but the information should still be accurate.

http://architecture......hscalgary.ca/

From my perspective there are a number of areas that are more important than others. In any house design you will also want to take into account how much of the daily chores the handicapped person will be doing. I allowed for pretty much everything because I do not think it is fair that my wife does all the work. It's not good that I lay around and snap my fingers when I can contribute as well.

The most important areas to consider (in my opinion) are the ability to enter and exit the building and the bathroom.

You should have one or more entrances that use either a level entrance or ramp to get into the house. Allow for a bigger chair than you are currently using because you may change equipment over time and you do not want to have to renovate later. If you build a ramp, then use at least a 12:1 or less angle. This means that if you are raising up 2 feet to the front door, make the ramp (12 x 2) 24 feet long. If you have any switchback or corner, allow for about a 4 foot x 4 foot (1.3 x 1.3 meter) corner as some chairs do not turn very tightly. You will want to measure the practicle turning radius of the chair and allow for a bit more.

An example of a level entrance might be something like and elevator, or a flat lift that you roll onto and then raised you up. I enter an elevator via my attached garage.

The bathroom is another critical area as this is where you may do your toiletry routines, shower etc. Showers should have a level entrance so there is no hump to go over. Usually a draw curtain is sufficient for the entrance. As a quick note, my shower curtain touches the floor. I threaded a small chain I bought from the local hardware store through the bottom of the shower curtain so it would not blow into the main bathroom if the water hit it. the weight of the chain keeps the shower curtain pulled to the ground.

There are too many different toiletry routines out there (many done in bed laying down) to be able to explain everyone. I personally use a commode chair that I sit on above the toilet, and then roll myself into the attached shower. Many people build the toilet into the shower and make better use of space that way. For astetics reasons I choose to have a larger ensuite and make them separate. If you do use a commode chair, make sure the chair can roll over the toilet properly. Quite often the wheels of the commode chair will hit the rear water tank and stop you from getting back properly. Toilet height can stop the commode chair from going back all the way.

As a last note, make sure at least one surface in the kitchen or other room allows for the handicapped person to roll under and work on. This typically means clearance to get under the table and right up against the counter. Look for under table clearances of 28-30 inches in cases like this. Manual wheelchairs can usually go on the shorter side. Powered wheelchairs may need the greater clearances. Measure in advance and allow for a couple extra inches in case the equipment changes over time.

If there are any specific questions you can fire them up here as I'm sure a lot of us have some different answers and tip and tricks.

There is a guideline for accessible housing printed in the US, but I do not have a link to it handy. Your local city, building department, should have it handy.

Good luck.

[Bob Clark]

So there aren't any Camel smokers in Canada?

I thought NAFTA was supposed to make it easier and cheaper for Canadians to buy US tobacco products and for US consumers to buy Canadian beer, whisky and BC killer green bud!

Not a pretty picture.

http://bcee1.home.co...oking_kitty.jpg

[Pumelios]

Thanks for the reply AHolland,

We will be checking the website that you gave us. I do have a question, but I think it might sound offensive, I don't mean for it too though. You mentioned that you can help your wife doing things. What things can you do? My FIL doesn't do much at all, he does lay in his bed or sit in his powered wheelchair which has a joystick so he can drive himself where he wants to go. If she puts on his silverware he can feed himself (food only no drinking).

We got him a voice activated TV remote, but he listens to the TV so loud that the voice recognization doesn't work, so he doesn't even change his tv channel. Should she (and us) be expecting more from him that maybe we didn't think about him doing himself?

Thanks!
Melanie

[Bob Clark]

Quote

Should she (and us) be expecting more from him that maybe we didn't think about him doing himself?

Hi Pumelios,

That's a tough question to answer. How old is your father-in-law and was he very active before his paralysis?

Since he's an older gentleman, a diabetic and a smoker it's quite possible that the added shock of quadriplegia has really zapped the strength and stamina out of him. Quadriplegia also effects his ability to breathe like he did before. And if he's in pain that can zap even more out of him.

Directly after the surgical mishap did they put him in any kind of Physical and/or Occupational Therapy? If they did then the therapists should have written up a report on what he's able to do now and set some goals for his future. It can be difficult for the therapists to forecast because his condition will change (hopefully for the better) at least for awhile after the injury.

It's also possible and perhaps even probable that he's clinically depressed and his will to participate in life or even to live may be compromised.

In large part things depend on his personality prior to the injury combined with his outlook on his life and his current physical abilities.

My now deceased step-father was just the lazy sort. He never had any hobbies nor did he ever participate in any sports or other activities. Except on Saturday and Sunday afternoons with the remote in his hand clicking through all the sports channels. And ESPN during the week. The big thrill in his day was a double scoop of ice cream over a piece of pie!

And the older he got (he was 15 years older than my mother) the lazier and more sedentary he became. Instead of getting up out of his favorite chair or bed he'd just have my mother get him whatever he wanted or needed. He'd go to the doctors a couple/few times a week and that seemed to be his hobby. He just enjoyed being looked after and doted on and he got this service from my mom and from the doctors and nurses. Kinda like he was regressing back into childhood although he had no clinical dimentia or Alzheimer's disease or anything like that. The doctors instructed him to become more active for health reasons but he was set in his ways. He would joke that he's taking his retirement very seriously! I never knew anyone who took as many pills as he did or was concerned so much about their health yet wouldn't exercise or exert themself in any way.

So some people, no matter if they have a disability or not, are just lazy and enjoy having other people to wait on them. And older people are naturally more tired than the rest of us.

Have you looked into getting him (hell, your mother-in-law needs help too!) a home healthcare nurse or specialist? Or a physical therapist who can "push" him a bit into becoming more independent? Or a personal attendant so your mother-in-law and the rest of the family can get a break? If he ruled the roost before the injury then it may be hard for your mother-in-law to prod him into doing for himself. So it may take a third-party to encourage him to at least try and care for himself the best that he can. I don't know the dynamics of their relationship so really can't say.

God only knows how long the lawsuit will be in the courts and how much, if any, the award or settlement will be. So I imagine that money may be tight for things like visiting home healthcare providers. Have you looked into the Social Services in your area? Medicare, Medicaid or private insurance may pay for some services. And give the Vocational Rehabilitation Service in your area a call and ask them if they can help in any way. Tell Voc Rehab that you want to try and get him back to work even if it's only answering a phone part-time.

Since he has the TV volume up so high he may need a hearing aid too. When it rains it pours.

[hillarymcarter]

We met with the state rehabilitation services yesterday and they were very helpful. They are getting back to us in 60 days and they are going to help us get some of the equipment that our worker's comp won't pay for (rugby chair, four-wheel drive chair, etc.). They are also going to have a list of jobs for Bruce in his degree area. We won't be surprised if we get screwed though because that is all the state has done so far!

[Pumelios]

Bob,

Your reply was very insightful. My FIL is not even 60 yet, so not terrible old and feeble. I had never realized that his lung capacity would be less, but it makes sense with the lack of exercise, and his point of paralysis.

I get so fustrated with my family when dealing with him because everything has to revolve around what he "wants".

Before his accident he was WAY annoying and self centered, he did things the way he wanted, when he wanted and to hell with anyone who didn't like it his way. (one example from after the accident- my 7 yr olds birthday dinner, she wanted to go one place, he didn't like it. The rest of the family didn't want to upset him, so we went where he wanted. That is sooooo not right in my mind!) Since his accident, he is the same way, only now the family (his wife and 2 boys) are doing anything he says, no questions, just doing it, no matter the outcome or later affects. One of the biggest things that is a challenge with him is his sugar levels since he is a diabetic. They just keep shoving the food (absolutely anything that man says he wants) into his mouth. They would let him eat a whole pie if that's what he said he wanted. Maybe it's the mommy in me, but I don't. I would have him eat a sensible dinner, and then get some desert later. He has so many problems with the sugar levels, that I believe it is causing more problems with his skin and his healing process. (He has open sores all over both of his calves, and has had a pump on his butt for the past 3 months due to a sore). The family just says, "it's all he's got left that he can really enjoy, so why should we be mean to him that way". My reply, " I want him to live a bit longer to see my kids get married". (btw, i have been called a bitch a time or two). I guess he was so stubborn before, that this is still his stubbornness coming through now.

When he was in the rehabiliation hospital, he did have physical theraphy, but since being home with my MIL, they have used all available medicade money for the in home services. The theraphist showed my MIL what to do, but if my FIL says he's too tired or doesn't want to do it, they just don't. I don't think he has had any kind of theraphy in over 4 months. And at the thought of a hearing aid he goes spastic! I think he feels that's a worse fate than his wheelchair! Total denial.

I know it is his life, but if we are being asked to help them, I feel they should also be putting out some efforts into making this a better situation. I have been known to be naive though also. Please tell me if I'm off base, outta line, or crazy.

Oh, Joed - We are from Northwest Indiana. Where are you from?

[AHolland]

Hi Pumelios,

Don't worry about asking questions that may be offensive. At this stage in the game most of us do not find anything offensive. If we don't want to talk about it, we will let you know. Any question is a good question. After all you would'nt be asking it if you already knew the answer.

With regards to helping out around the house. Each of us are different in our capabilities and as such what we can do. In my opinion as a para, the worst thing that can happen is to have the rest of the family do everything for the handicapped person. This resulsts in the handicapped person being a burden on the family and the handicapped person becomes reliant for everything in their life on the family. It does the handicapped persons mental health no good to fall into this situation either, and god knows we are tortured enough in that department.

As another member said, I think that what you need to do is either do a self assessment of the handicappedperson, or have a therapist do an assessment. What can the person do physically? What can they do that is more mental. Perhaps some examples.

I have two children (daughter 6, son 11). I look after them (or is it the other way around?) and let my wife have a day out on the town by herself. The kids an myslef work to make our own lunch and do a bit of cleaning up so when she comes home, there is nothing for her to do. How do you think that makes her feel? I may not be able to transfer a hot pot off the stove, but as a team we can get the job done.

As a second example. I can type...obviously... on a computer. As such I do all our banking or other paper pushing house hold chores. Is this handicapped person able to work a computer? I have not found a quad/para yet that cannot run one, and I know quite a few including those that can only move their head and nothing else.

It may work best to have them start with one single chore around the house that they can manage, even if that is something as simple as opening the mail and sorting out the junk mail. I think the quote is, "every trip starts with the first step."

[Joed]

Hi Pumelios...

Very southwestern IN...KY and IL are both about 1/2 hr. away from me.

So you must be near Chicago? I have a NS appt. there next week. It'd be nice to get a Cubs game in while there.

[Apparelyzed]

Hi Pumelios...

I'm a C5/6 Quad, and I would imagine I have less functional use of my arms than your father-in-law, although I am younger at 37.

Here are some examples of what I do in my average day.

Following my personal care, I can transfer myself from my bed into my chair, without a hoist or sliding board.

I am usually in my wheelchair by 8 am and go to bed around 9 pm, but this can be later if I'm going out.

I can shave myself using an electric razor.

I can make hot drinks for myself using a "Kettle Tipper", and take the drink to any room in my house on a tray. I can also make cold drinks, and open canned drinks from the fridge without any adapted gadgets.

I use a manual chair for getting around the house and garden, and am NEVER pushed when at home.

I can empty my own legbag without assistance into a normal toilet.

I can type on a computer using a typing stick strapped to my hand, and instead of using a mouse, I use a tracker ball.

I use a normal remote control to work the TV.

I use a dustbuster to vacume the house to help out where I can, and dust surfaces I can reach.

I can cook a basic meal if I get hungry, using a shallow pan, or to cook chips, I use the oven. If a meal has already been prepared, I can cook and serve it for myself and 6 year old daughter when my wife is a work.

I can feed myself, although food like steak needs to be cut up for me.

All of the above should be within the functional possibilities of your father in law, however transfering and emptying his legbag do take a while to master.

The above is not an exhaustive list, so if you have any queries on other abilities, please ask.

It does sound a bit as though your family is pitying him too much, and in the process doing him more harm than good in the long run. I know the rehab staff at my spinal unit would of kicked his butt into shape by now, and would never let him get away with playing the "pity card".

As for your father in law's sugar levels, he needs to take control as he is at an even higher risk of developing pressure sores than an average person with a spinal cord injury. His diabetic condition also puts him at a higher risk of heart failure, which is compounded by the reduction of exercise.

I hope the above helps.

Regards

Simon.

[Pumelios]

Are any of your fingers curled up? As time is going by, his hands are drawing up, they even went in and had surgery to release the tendons. (think that's what they said), but I didn't really see any improvements (but of course they didn't put his hand/wrist into the brace that was sent home with him- what a waste of money on that surgery) Do you think this is also from his lack of exercise?

I'm learning so much from this site! I have share some of the posts with my husband also, figure if more than just me starts to work on this, maybe it will improve. (please, oh please)

[Simba]

In terms of adjusting the house in my opinion the two main considerations are space and light when a person is in a wheelchair. Figuring out what you can and can't do is a first port of call. You may wish to have an adpated kitech put in if he is a quad as he will not be able to reach too high. Bathrooms also obviously very important, preferably wet floo shower, lowered basin to wash hands and even toilets have to be considered for comode chairs to go over for toiletting. Sounds like your FIL is still very much recovering and this is to be expected with the amount of nerve damage associated with spinal injuries it could take a significant amount of time (again variable in each individual). My Husband still has fingers that totally curl up in the mornings and sometimes he needs someone to massge them gently open to as they won't do it by themselves. As other people have mentioned it will be a steep learning curve when someone is disabled you have to think about every tiny little aspect of life all the time. A lot of communication will need to happen and working together with your FIL to get things right.