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Letting Go of Unrealistic Plans

Lynn and I had to make a very difficult decision this week– whether to cancel our summer vacation or to go as planned.  Now, on the surface that might not sound like such a big deal, but it was.  Since the children were small, we have been going to the beach in North Carolina for a week during the summer.  It’s the only type of vacation we take all year. Now that the children are grown with families of their own, we still invite them as our guests to spend the week with us at the beach.  It’s a great way to reconnect and create memories to look back on during the cold winter months.  Over the past two years we have also included both my parents and Lynn’s mom (all in or near their 80’s).  Both of us love the beach and the family time and we had traditions of fishing trips, play time in the pool, and lots of grilling outside.  However, Lynn’s secondary progressive MS has changed all that.
Trips to the beach over the past ten years have been difficult for Lynn.  He doesn’t tolerate heat well so we tried a cool vest – didn’t work, and we tried early morning fishing –took too long to get him ready to go so by the time we got there, it was already starting to heat up.  We rigged ways for him to hold his rod to fish but though he could hold it for a few minutes, his spasticity prevented him from having a good grip or being able to reel in anything that might nibble at his bait so it really took the joy out of fishing.  Plus there was the issue of needing to intermittently cath him every hour or so…  The result was—no fishing. For a couple of years we took fishing gear just in case but last year we didn’t even do that.
We tried borrowing a floating wheelchair so Lynn could get into the ocean.  That was fun… for about the first five minutes.  It took three of us to stabilize the chair in when the surf rolled in so he wouldn’t flip over.  He and the rest of us got beat to death by fighting the waves so we tried just sitting him on the beach.  (Don’t worry; he had a life jacket on.) He, of course, could not get away from unexpectedly higher waves so he got whipped by that process too; not to mention the fun of trying to lift him from the ground up to a floating wheelchair as the sand shifted out from under us every few seconds.  We decided not to do that again.
Last year we found a really nice house that was handicap accessible.  I was so excited.  It thought, “This is it! The solution to our vacation woes”. It had ramps, an elevator, a roll in shower, handrails on the wall, and most importantly a ramp into a pool.  It seemed like the perfect solution except the room designed for the disabled person to use was the smallest room in the house and was filled with furniture.  As any of you know who have traveled with someone disabled, lots of equipment and supplies are necessary for ongoing care.  Therefore, this room just didn’t meet our needs.  We tried re-arranging the furniture so he could get his power chair in and out easier but we were warned not to do that again next year.  We also thought about using the larger downstairs bedroom but were told we could not do that either because his wheelchair would damage the carpet.  Okay, all the added restrictions and challenges were starting to make the place less desirable; then, I found out we could not have a late check out this year.  That was the straw that broke this camel’s back.  It takes three hours to get Lynn ready for the day.  With a 10 a.m. checkout, that meant a 7:00 a.m. get up time if we did nothing but get him ready to go but when checking out, you have to do the packing, straightening up, throwing away food, etc. which takes at least 2 if not three hours when you have 7 people using the house.  And while they all pitched in to take care of their own things, I still had all our packaging and packing to do to get us out the door because everyone else was busy with their own. With a five hour drive home, getting up six hours before 10 was just too much for me to accept.
So we are canceling our vacation.
Continue reading at http://multiplesclerosis.net/blog/caregiver-perspective-letting-go-of-unrealistic-plans/

Is This It? I Thought It Would Be Bigger

For the past year, I have excitedly looked forward to this year’s beach vacation.  I have dreamed about how awesome it would be, talked about it with anyone who would listen, and looked forward to it like a child looking forward to a Christmas Eve visit from Santa. I was so excited because I thought I had found the perfect place for Lynn to go that would meet all his needs and allow the rest of the family to have a great time. This place sounded perfect.  It had an elevator, roll in shower, mobility assistance devices, wider doors, and a pool that slanted so he could roll into it on a floating wheelchair.  It sounded perfect…
Reality set in when we arrived. The first disappointment was that I misunderstood how high the elevator went in the house. I thought the elevator went to the top because it went to the second floor; however, this house has three floors.  I counted the first living area as the first floor and the entrance floor as the ground floor so when I asked if it went to the second floor, they said it did (and were correct) but I envisioned the third floor as the second floor instead. I was very disappointed because my parents and Lynn’s Mom have difficulty with steps.
Next issue: the elevator.  When we first arrived, I read the sign that said the elevator only held 500 pounds so between Lynn and the power chair no one could ride in the elevator to operate the controls.  He has very little hand strength so operating the elevator on his own would be difficult and frustrating.  I finally found the switch the next day to control the elevator from outside the cab so even though I was disappointed initially, it all worked out.
Then, we went to our room.  It was the smallest room in the entire house and I had more than twice the supplies and luggage needed for a week’s worth of living and caring for him.  Though it had a roll-in shower (a big plus), the actual space in the bathroom was very limited.  Then, when I tried to sit Lynn on the toilet, it was a disaster.  The toilet was sitting so close to the wall that the handrail placed on that wall to assist someone in getting up or down prevented him from being able to sit in the center of the seat.  His spastic arm was not able to be moved beyond the height of the rail and he was sitting in extreme discomfort besides not being safe.  I had to quickly get someone to hold him while I went to get the shower chair for him to sit on. However, the shower chair didn’t have a bucket so it could be used as a toilet chair so I had to improvise by using a lined trashcan–not a good experience.
The bed in the handicap accessible room was a queen size and took up most of the room.  That left very little room to maneuver his power chair so I had to move the bed against the wall to make more space.  The bed was high so it made transfers to and from more difficult.  While there was a TV in the room, it was small and difficult to see from a distance. The bathroom sink was just a sink and no vanity (though there was a good sized medicine chest there).   All and all, very disappointing and not handicap friendly….at least for his handicap.
And that’s my point… “his” handicap. This beach house is actually awesome. It’s big and spacious with lots of amenities, a wonderful pool, and lots of space on the second floor to move around.  I’m sure that if it was used by someone who did not need to share a room, who only used the over-head lift equipment to get in and out of the bed, whose toileting was not done on the actual toilet or who managed it without assistance, the challenges we had with the room would not be an issue.
I complain often that a “handicap accessible” label is a distinctive misrepresentation of most places.  Most of the time it just means handrails or bars attached to the wall in the bathroom.  I’ve never actually been to a place that was really equipped for someone totally mobility challenged.
continue reading at: http://multiplesclerosis.net/living-with-ms/thought-bigger/

Going Out Isn't Easy

For most people, deciding to go somewhere is simply a matter of making the decision to go and then going.  For people who are mobilized through the power of a wheelchair, that process is a little more complex.
Lynn and I have not been to church since he was hospitalized almost two years ago.  He is now stronger and he is starting to adapt a bit better to the Rebif shots so we are considering trying to make a trip to church.  However, for us, that takes a lot of planning and foresight.
1.  What will he wear?  Lynn currently dresses for comfort and convenience.  Comfort related to the movement of limbs that need to be positioned, careful selection of where seams occur (since sitting on one for long periods when you cannot shift yourself is very uncomfortable), and something that is not binding, scratchy or constricting.  Usually he wears a long sleeve T-shirt and compression shorts with knee-high toe socks.  Not the most fashionable outfit but very comfortable and functional.  The other consideration is the ease for intermittent catheterization or if he’s using an indwelling foley, location of tubing and bag. Since he wears his same outfit to doctor’s appointments as he wears at home, he has not had on a pair of dress paints since PH (pre-hospitalization).  Does he have a pair that fits and could be comfortable for at least three hours?  Would they easily accommodate catheter needs?  That is yet to be determined.
2.  Bladder needs.  If we are making a trip to the store or doctor’s office, I take catheter supplies and cath him discreetly in the van or public restroom (if the location has a unisex and private restroom available.)  If we go to church, that’s an issue. He can’t leave in the middle of a service to be cathed; that would be disruptive.  However, he hates wearing an indwelling catheter in public with a tube leading to a bag of urine.  It’s embarrassing for him and it grosses some people out to see it–plus it makes him appear sick.  He isn’t sick; he’s mobility challenged, so to speak, but otherwise not ill. He doesn’t want those sympathetic, pity-type looks.  He wants to be viewed as whole and functional.  He doesn’t want to be written off as not being able to contribute or considered a subject of pity.  The urine bag represents that for him so it’s a struggle to make the decision to go somewhere like church with an indwelling catheter in place… though practically speaking, it’s the best option.
3.  Accessibility.  Can we get into the building and once inside navigate to where we need to go?  Before going anywhere, I usually like to do a dry run to look to see where the handicap parking is located, do they have ramps, elevators or stairs, etc. You would be surprised at the locations that you cannot access.  For example, we went to a lawyer’s office that had the required slope to the sidewalk so he could get to the front door; however, the slope was at the end of a sidewalk.  The sidewalk ran in from of parked cars.  On one side were cars and bumpers that extended over the sidewalk; on the other side was loose rocks used in landscaping and a significant dip off the sidewalk into the rock.  As he attempted to negotiate the sidewalk and move around the cars extending over the sidewalk into his path, his wheelchair wheels went over the edge and his chair very nearly toppled over into the rock.  I had to go inside and get the lawyer to help me lift him and his chair back onto the sidewalk.  Then we proceeded to the front door which was a good three inches above the sidewalk.  His chair can’t make it inside so we met in our van.  You would think a lawyer’s office would be better equipped. However, we are often surprised at who is not equipped.
Case in point–when we went to the Social Security Disability hearing in downtown Richmond.  I was amazed that there was no disabled parking available except down a step hill.  There was no curb slopping directly in front of the building.  I had to unload him and his wheelchair (that was before we got the wheelchair van and was using a manual chair) into mid-day traffic!  The entrance doors were not automatic and neither were the bathroom doors in the SS office!  Again, you would think a place that caters to the disabled would be better equipped!
Now back to my plan to go to church.  Our church is an old building.  It has an elevator but it’s small.  To get to the sanctuary, you enter the wheelchair into the elevator through a side door, then it goes up one floor, but the exit is at a 90 degree angle to the entrance door.  It’s nearly impossible to maneuver a manual wheelchair with a large man in it into the elevator and out the door one floor up.  There’s no way to get his powerchair in there with him in it due to the leg supports and foot pedals extending too far out.  So if we go to church, we will have to use a transport wheelchair.  The transport wheelchair is not designed to adjust in the ways he needs to remain comfortable sitting for an extended time.  I’ve considered putting him in the manual chair and trying to send the powerchair up without him in it but even with all limb supports tucked in close to the chair, I’m not sure we could maneuver the chair out of the elevator. If he’s uncomfortable, he will not be able to focus on the sermon or enjoy the fellowship so we have to take that into consideration.
4.  Finally, germs.  He’s very susceptible to infection.  He has an autoimmune condition, after all, so his immune system doesn’t function properly.  If he gets a cold, or heaven forbid, the flu or a GI virus, it could put him in the hospital and all he has gained since his last hospitalization could be lost again.  Therefore, once the cold weather sits in and people start spreading those nasty germs again due to being enclosed in crowded places, we will have to avoid public areas. I’ve jokingly told him I would put a plastic suit on him so he could shake hands and hug people but that might not be the most comfortable solution either.
So, we are not decided about going to church tomorrow.  If we can find clothes today, figure out the catheter question and get the backup plan in place for a wheelchair access, we might get there.  It would be nice to hear the choir and fellowship with the congregation.  We miss seeing them and being a part of worship but we are fortunate that if we can’t work out the process, we have the sermons online to fall back on.  Keep your fingers crossed that we will make it in!

Short Trip but Major Planning

If you are a caregiver for someone who is totally dependent on you for everything, you know that there is no such thing as a “quick run” into anywhere when you take the person you are caring for with you.  Today, Lynn and I had an appointment with an attorney to sign our wills, power of attorney, and medical decision maker documents.  The location was approximately 35 minutes from our home so I estimated we would be gone two maybe two and a half hours.  I also planned to stop at the post-office, return something to the drug store, and stop at the bank.  Here’s how it went…..
The appointment was for 10:30 a.m. so we got up at 7:00 to get ready.  After cathing Lynn and arranging things within his reach, I went to put on clothes and prepare his morning supplements.  Then I returned to unstrap him from his peddlar, put on shoes, etc. and return to the kitchen where he took his supplements and exercised while I ate breakfast.  Then it’s into the bathroom for his morning routine, and to bed to rest while I checked messages at work between answering his calls for assistance.  Then getting him up, dressed, situated into his wheelchair, and groomed for the trip. As he’s waiting, I assemble his “bag” of supplies to go out….saline nose drops, Valium for spasticity, his cell phone, cold water with a straw, a smoothie for a snack, supplies for up to four catheterizations, getting what I needed for the post office, taking it to the van, cathing him one last time, getting the van ready,  securing him into the van and locking up the house. 
Then we’re off to the attorney’s office.  Almost there and he needs to be cathed.  Pull over and take care of that (if you’ve never cathed someone who is in a wheelchair while they’re in a van, you don’t know what you’re missing).  We get to the lawyer’s office, I find a place to park in the shade (it was supposed to be near 80 today) and go in to say, “we’re here.”  Lynn can’t go in because the building is not handicap accessible for wheelchairs (as we found out the hard way the last trip when his wheelchair got stuck in loose rocks when he drove off the sidewalk trying to maneuver around bumpers of cars).  Our lawyer is very nice and he gets everything ready and brings the papers and witnesses to Lynn in the van.  All’s well and we leave.
Next stop is the drugstore.  He stays in the car and I run in to return a mobility table that was supposed to be able to attach to his wheelchair which didn’t.  Fortunately that was a five-minute stop.  Back to the van and he needs to be cathed again but where we are is too public.  I’m craving caffeine so we go to Starbucks where I can park away from viewing eyes.  Another “in van” catheter experience.  Then coffee for me and tea for him after I help him get his smoothie for a snack and strap him in again so we can move on to our next stop. 
The next stop is the bank back near our house.  He needs to get out this time because we are setting up a new account by closing his business account.  That takes about 20 minutes plus we got a safe deposit box for the wills.  The bank was easy to access except doors had to be held for him to drive the wheelchair though since there were no automatic openers.   Back to the van, strap him back in again, and he needs to be cathed again.  I need spinach at Foodlion so we go to the far end of that parking lot, I cath him, again, run inside and return to realize the post office, which is our final stop, would be closed now for lunch. No matter, Lynn is exhausted by now and so we head home for me to feed him and hook him up to his peddlar to help him relax. 
I unload the car, set everything back up for his easy reach, run to the post office alone (which I must say is much easier and quicker alone) and get back in time to, yes, cath him again.  By now it’s 2:30 and I’m ready to begin my day at work….
It’s great to be able to get out of the house now using our van which makes the option to go places actually a possibility.  However, travel is no easy matter.  Supplies must be taken, nourishment must be considered, and comfort must be planned for.  Much like taking a small child somewhere, travel takes significant planning but somehow taking someone who is 6 ft tall and weighs close to 200 lbs is a bit more complicated than taking a 25 pound infant….