Fear of the Future

Originally posted at MSCaregiverDonna July 24, 2011

Ever since Lynn almost had to go on a ventilator in May, in the back of my mind I wonder what to expect about the future.  I seriously try to just look at what today holds for me but whenever plans need to be made, I can’t help but worry.  I can’t share this with Lynn.  If I do he thinks I’m being pessimistic and that I don’t think things will turn out well. It makes him depressed because he thinks I think he’s not going to get any better… so I can’t talk to him about my fears…but they are there.

We’re going on vacation.  I so want him to have fun and enjoy it but I’m afraid he won’t. I’m afraid he will feel bad and not be able to go fishing and not want to participate and be absolutely miserable. He will try not to put a damper on it for anyone but I’ll know and I’ll stay close by and I’ll just want to be home rather than there. That’s my fear for vacation.

We’re looking at building a new home.  I want to be excited and make plans but my fears are there in the back of my mind.  Will I be able to continue to work full-time so that I can pay the bills. The house we live in now needs so many repairs to be able to be put on the market.  How can I pay for that and a new house too?  Right now I’m working from home full-time.  What if my job needs me to be on site and I can’t work from home anymore?  Who will take care of Lynn?  He cannot be alone for more than an hour by himself.  His son is starting a new full-time job. Both my kids work full-time.  He’s a big guy and needs a lot of help so not just anyone can stay with him.  So what would that mean?  A full-time licensed caregiver while I’m at work?  Insurance isn’t going to cover all that.  I won’t be able to afford a caregiver and paying to get a house built.  See where my mind goes?

Sometimes it gets very overwhelming when I think of all the responsibility and how dependent he has become on me. I miss having the freedom to sleep a full night without having to get up to catheterize him or put him on his peddler because his leg is spasming.  I miss being able to go to a store and shop.  I have four gift certificates for a massage but I can’t be gone for the two-three hours I would have to be a way to be able to use the certificates (and my muscle spasms in my back from lifting him by myself are constantly painful so I could really use the massage).

So what do I do when my mind starts going in those directions? I tell God it’s His.  I can’t handle it and I’ll just have to trust He will take care of it when the time comes.  Otherwise, I would just go mad.  But that works and I keep being able to cope and keep having hope.  Thank goodness for faith in the fact that He will help me when the time comes. He always has.

Fear of the Future Read More »


I’m starting my “staycation” today. You know the kind; where you vacation at home so you can get things done that you never have time to do when you’re working. We normally vacation at the beach each year with our children but when the time came this year to pay off the rental, we realized that though we had some good times when we were there, for Lynn, most of the experience was exchanging one bedroom view for another with a lot of recovery time thrown in without access to all his special needs supplies (though it felt like I packed the house each time we went.) We decided the work involved in going and having to work around his special needs while there would not be offset enough by the short periods of time that we had available to enjoy time with the family. We enjoy having the kids around but often they were in another room or outside so we didn’t really have them around that much. So we cancelled the condo at the beach (lost $3000 in canceling the date but in the long run we preferred the loss to going.)

At first, I thought about not taking any time off at all since I use my leave time fairly often to take him to appointments or to provide his care, but then realized it would be a great opportunity to get some things done around here, so now I’m really excited about it.

My main goal for this staycation is to clean out my garage so I can move items from the spare bedroom to the garage and move things from another bedroom to the spare room. All this moving around is in preparation for installing an exercise pool. An exercise pool, mind you, that I don’t want but one that Lynn has his heart set on getting.
Continue reading at:

Commitment Read More »

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

Letting Go of Unrealistic Plans Read More »

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:

Is This It? I Thought It Would Be Bigger Read More »

Preparing for the Week Ahead

Always be Prepared.  That was the Scout motto when I was a kid and one I’ve taken to heart for survival purposes now that I’m a caregiver. The need to always have a “plan B” keeps me on my toes and planning ahead for the “just in case” life I now live.

Today is Saturday.  So far this morning, I’ve spent the majority of my time cooking large pots of vegetables.  I try to keep several containers of all the essential foods Lynn has to eat each week in the freezer.  By cooking in large quantities, I can work up to the last minute and pull a meal together out of the refrigerator or freezer without needing too much lead time. In fact, I have a freezer in the garage devoted to his food.  I usually cook about 15-20 servings of something at a time and put them in individual sized plastic containers. I then slap on a label of what’s in it and when I cooked it and off it goes to the freezer to be stacked with the others of its kind.  I do the same with my meats. I fill my oven with the meat of choice then create 3-4 ounce servings for use at a later time.  Then for the meal, I pull containers, dump them on a plate, cover in tin foil and wa la, I have a meal to throw into the oven to slowly heat till I’m ready to serve.
I’ve got a similar process for clothing.  Lynn has certain clothing that he prefers to wear. After discovering what styles and fabrics don’t annoy him due to binding here or a twist there, I buy lots of them to have on hand so I only have to wash clothes twice a week.  He doesn’t have much variety but he doesn’t seem bothered by that.  He’s into comfort and I’m into ease of care and together, it works out well for us both.  Therefore, I have a drawer full of gray toe socks (individual warmth for each toe), button V neck ¾ length sleeve baseball-style T-shirts, and stretch base-ball slider shorts that have slight padding on each side which protects his skin as he moves in the wheelchair.  Each part of his wardrobe is specifically designed to accommodate his special needs.
For short trips to the doctor (which is about the only place we go anymore), I have a tote bag that comes along.  Much like the diaper bag Moms carry for their young, I have a bag full of necessities.  I carry enough catheter kits and supplies for the number of times I expect he will need to have his bladder emptied while we are gone. But I also carry two extra of everything, just in case, AND an indwelling catheter insertion kit and catheter in case the car breaks down and I have to use up my spare intermittent catheter supplies. Besides catheter supplies, I carry a spare change of clothes, wipes, and an air pump in case the air cushion he sits on springs a leak. (For longer trip, I actually take an extra air cushion with me.)
Continue reading at:

Preparing for the Week Ahead Read More »

Now This is What I Call Accessible

you asked for it!For the first time in eight years, Lynn has been able to “swim” in the ocean.  He was overjoyed at the experience (that grimace in the picture is only due to the wave splashing in his face; he was having a blast) and so were we.  So in spite of the fact that Radical Mobility apparently lied to us about sending us the parts to make his 4wd wheelchair work for our beach vacation, we found a truly accommodating community that supported our needs.
During the winter, I was told by one of our home health providers about a handicap accessible house on Emerald Isle in North Carolina.  She told us that the fire department there loaned floating wheelchairs that could be used on the beach on a first come first served basis.  We checked it out and found a beach house that had a ramp that lead directly to the beach and was able to get a wheelchair from the fire department.  Those chairs are incredible! They have huge back wheels, slightly smaller front wheels that are very bouncy and are made from materials that can get totally wet.  Therefore, when you get the chair in the water, it floats up.  It took three of us to hold it steady in the water but he was able to ride the waves!
After playing at the beach, he took a day off to re-energize and on Wednesday, he hit the beach again.  Though, my husband thinks he’s brave; I just know he’s crazy; but he wanted us to tie a rope to his life vest and let him float in the water without the chair!  He was convinced that the vest would keep him from drowning.  We tried to argue but he was not budging.  So I tied the rope to the top of the vest and let him see that when the waves came in, the rope swirled around in the water and could create a safety risk itself.  He finally saw that and agreed that was not a good solution. Finally we compromised.  We sat him in the water a few feet from the edge of the surf so it would hit him mid-chest. He wanted to lie on a buggy board to float but we convinced him that face down in the surf without the ability to hold onto the board, might not be very effective.  He tried to clutch the board and realized his spasticity would not allow him to do what he wanted and gave up on that, but he still had a great time.
This has been such a great vacation for him.  He’s finally realized he needs a day of rest between events and that has helped.  He has been able to participate by sitting on the deck that overlooks the sea because it’s plenty big enough for his wheelchair to maneuver around.  He has been a part of the group or alone based on how he feels.
The rest of our group has been very supportive to us both.   Though I cannot get away without putting in an indwelling catheter which limits my outing times, I have been able to get away twice to run errands and his son takes over my role.  Plus his son is much stronger than me so he’s helped with so much of the moving and lifting.  We are so blessed by our supportive and loving family who have often put our needs before their own.
We have also have our grandson with us as well as my parents.  Altogether we have had eight adults and 1 child (age 15 months so he’s into everything).  Both my husband and the baby are special needs so we have all taken turns Eli at the beachrelieving the baby’s parents and they in turn relieve me.  It really helps to make vacation time manageable; otherwise the extra efforts needed to survive in a house that is not set up to meet the “patient’s” special needs would make a vacation miserable.  To be honest that has been the case for many of our former vacation years.  Not so, now.  We have found our vacation spot!
In fact, I’ve put in a “pre-registration” for a house next summer in this same area that has a roll-in shower, handicap ramp, a pool, and an elevator.  I’m really excited because the shower is still a bit of a problem here.  They have an outdoor hot/cold shower but it does not have sitting for the disabled so we have hooked up a hose to the spout and shower him just outside the shower itself.  It’s a bit cool doing it that way though plus he can’t take his shorts off since  it’s outside and could be viewed from the street.  Don’t want an x-rated show for the neighbors.
I wish all communities were so sensitive to those with special needs.  It should be that all people can have the same opportunities to access the beach; not just those with two feet.  Emerald Isle is such a community and I’ve been very impressed with them.  If you’re looking for a great summer spot, I highly recommend them.lynn going to beach

Now This is What I Call Accessible Read More »

Thinking of Buying 4WD Wheelchair? Don't Buy from Radical Mobility!

When Lynn first lost his ability to walk, what he missed the most was fishing.  He loved to surf fish. At least four times a year, we would take a long weekend and go to Cape Hatteras for him to fish.  It didn’t matter if it was raining, cold, or hot, he would pack up his fishing gear and take to the sand.  Me–I would pack a good book and relax!  At night we ate what he caught or we went out for seafood.
Our last trip was the weekend we found out he “officially” had MS. During that trip, he had extreme difficulty walking to the beach.  I helped him take his gear and get settled and spent a lot of time on the beach “just in case.” Once the sun went down, I went in but he continued to fish.  About an hour later, he came in soaking wet.  The tide had come in and he had lost his balance and been pulled under, filling his high water boots to the top and soaking through all layers of clothing. By that point he could not stand upright. He walked bent at the waist holding on to whatever was close by.  I helped him get in the rest of his gear and he took a shower.  Although we didn’t talk much about it, we had already been prepared by the doctor that he expected the results to be MS.  So in our hearts, we knew that life as we knew it then was about to change.
After his diagnosis, he was determined to keep doing the things he loved as long as possible.  He soon was using a rollator which had a seat and I was pushing him in it more than he was walking with it. After a few “spills” where I would hit a bump I could not see and he would go flying, he got a wheelchair and then a power chair.  He really liked the freedom the powerchair provided and began to do research on the possibility of a wheelchair that could go in the sand.  He decided that the one that seemed to have most of the features he needed was made by a company called, Radical Mobility ( located in South Africa.  They advertised a really cool product.  The chair itself was sturdy, not particularly pretty, but it would rise straight up to see over objects and tilt back.  It had various speeds, and could go in sand, over inclines, up steps, and over rough terrain and still remain upright.  It had headlights, a horn, and adjustable headrest, arm rests, and legs.  It seemed to be just what he needed to be able to continue to surf fish. 
At that same time he was approved for disability by social security and received his back pay check.  It was just enough to cover the cost of the chair (almost $13,000 including shipping). We hated to spend that much but prayed about it and felt that buying the chair was putting our faith in the possibilities of future pleasures and realized dreams. He ordered the chair giving the specifications he needed.  It took about four months to build and it was shipped in  early May of 2010.  We were due to go on vacation the last week of July.  Unfortunately, it didn’t arrive till September due to sitting in customs waiting to be ruled as “safe” and not a terrorist device.  At that same time, Lynn had developed a misdiagnosed urinary track infection.  He was feeling worse and worse, losing his energy level steadily. 
When we got word that the wheelchair was being delivered, he was too sick to check it out.  The truck driver could not get up our driveway with his tractor-trailer. He unloaded it at the end of our drive way. The shabby crate it was in had holes punched in the sides and by the time it was unloaded from the truck, it was an easy push on the poorly constructed crate to take it apart and get the wheelchair out.  The instructions were very basic and poorly written.  I had a very difficult time figuring out how to operate it so I could load it onto a trailer behind my car to take it to the house. (It was not completely assembled so I could not drive it to the house.)
I got the parts assembled, put it in neutral and “walked” it into the house. Since each tire moved independently, it was very difficult to drive within the close quarters of the house and to make the turns, I had to lift it around corners.  I parked it in the living room hoping Lynn would be able to try it out in a few days…
Fast forward to July. From September to July, Lynn was in and out of the hospital and recuperating from his lengthy admissions. Hoping that being able to us the wheelchair would give Lynn something special to look forward to, we decided to take it with us to the beach even though Lynn had not had a chance to drive it. He really wanted to use it to at least “walk” along the beach or fish from the pier.
Two nights after our arrival we decided to try it out.  We backed it out of the van and I put Lynn in it.  He drove around the parking lot a little to get a feel for it and then tried to drive it up the ramp so we could take it to the beach access area.  He couldn’t get it to drive up the ramp!  He weighted too much (keep in mind he had lost a lot of weight in the hospital so he maybe weighed 165 lbs).  My lightweight daughter could drive it up the ramp but not him (we knew she could because she had loaded it into the van initially.)  We finally pushed it manually up the ramp and into the van because we were determined to try it on the sand.  We got to the access area and he drove it out of the van into the sand.  It went across the parking lot to the sandy area and stalled. It would not go forward or backwards. Stuck!  No movement at all!  I had to drive back to the condo, get his transfer wheelchair, transfer him from the dead chair to the manual chair, and then we pushed the dead chair into the van. How disappointed we all were!  I felt like crying.  He was heart-broken.
So we came home and tried to contact Radical Mobility to get it fixed.  We sent emails and got a response that someone would return our inquiry shortly. We waited…and waited… and waited.  Nothing.  We sent another email.  Again we waited.  We figured out the salesman we bought the chair from had left the company when I went to their Facebook page, so we tried the “contact us” email.  Same thing.  Someone named Martin was supposed to contact us.  Nothing came.  We repeated the process several times.  Finally Martin responded and said send them the joystick, cables and motor.  We had a question about what exactly was needed, again several weeks of sending emails with no response and finally we got the instructions.
We sent the parts to their location in South Africa. No word for months.  Then finally in April of last year (2012), he said it was fixed and was being sent back to us.  He cautioned it might take a while before we got it due to a postal strike in South Africa.  That was eleven months ago and we still do not have the motor back.  We have a gutted wheelchair sitting in our living room with no way to power it up.  We have emailed Radical Mobility regularly since last April to ask for tracking information and help with locating our motor and no response. Occasionally we have gotten an email back saying they are checking on it and will get back but they don’t.
This machine was built in South Africa.  They do not have an American facility.  We have no way that we know of to get the motor back.  We are now searching for another manufacturer who might be able to build a comparable motor that could be installed so we can use the wheelchair. I’m sure it will cost us several thousand to get the necessary parts programmed, built, shipped and installed.
I feel betrayed.  This company is owned and the machines designed by someone who is paralyzed. He knows the struggles of the immobility challenged.  How can he treat fellow disabled individuals so shabbily? It’s unethical and wrong on so many fronts.  He took our $13,000 and gave us a large statue for our living room. It’s worthless. But the worth part is he shattered Lynn’s dream.  We cannot afford another chair. That was his only hope for getting a chair to use in the sand. This company does not even respect us enough to communicate with us; they just ignore us completely.
So if you or anyone you know is considering buying an all terrain wheelchair, please warn them not to buy one from Radical Mobility.  They will take your money and not give you what you paid for.  Their customer service is not even marginally present and their product just plainly does not work.  Do not be fooled by the claims on their website, their Facebook page, their Tweets or their blog.  Do Not Buy From Them. 
I have never written a negative review like this before but my conscience just keeps telling me to warn others.  I hope I have helped someone else from making the same costly mistake we made.

Thinking of Buying 4WD Wheelchair? Don't Buy from Radical Mobility! Read More »

Was That a Vacation?

We were on vacation when I wrote this blog this week. I was not able to post a blog this week because, unknown to us, the condo we use changed their practice this past year and each home owner is now required to provide their own internet service to their renters.  The home-owner for the one we rented, apparently decided internet access was a non-essential amenity for their guests (I found out later that most initially believed that to be the case but most are changing their minds now with all the complaints).  Fortunately, the condo office allows you to come to their lobby and “borrow” access while there. Unfortunately, for some reason, I could not get my computer to work with their service (probably my limited knowledge of computers being the “fault” in this case.)
Every year I look forward to vacation and being at the beach.  Lynn’s son and fiancé, goes with us as well as my daughter, her husband, and this year we have the addition of our new grandson.  The family time is wonderful and something I really look forward to but vacations now are very different from years gone by.
First off, the preparation is different…all preparation, along with all the daily activities of our home-life are my responsibility.  Periodically, Lynn would provide instructions like…”don’t forget my small white fishing rod,” (which I forgot) and “I want to bring the red and blue weights to use to work out…no change that to the small and large gray ones…no I think the red and blue ones will be enough…” By the time I finished packing, I had ½ a suitcase of clothing for myself, my computer, and a few books (none of which I had the opportunity to read other than a few chapters in one) and everything else was about Lynn.  I brought an extra-large cooler for all his specially prepared food; clothes for hot, cool, cold, and warm conditions plus layers for in-between; exercise equipment; shower and toileting equipment; his medication and supplements (which aren’t a few); his peddler (plus a spare in case one broke); his foot massager; catheter supplies; nebulizer and supplies; spare wheelchair; spare cushion for power chair; charges for all aforementioned equipment; a microwave for our room; and many other miscellaneous supplies.  Yes, I packed our house.  I barely had room for us in the van!
Then the drive down is very different.  He used to do all the driving because I get very sleepy when I drive.  Now I do all the driving and just being the passenger is extremely tiring for him.  It’s a debate whether to stop and let him out of the van to rest or to keep going so he can lie down when we get there.  Since we were traveling with a new baby in the car behind us, we stopped a few times for feeding and coffee for me so I could stay awake before we decided to travel separately.  Once we got to the condo, it was time to unpack and arrange everything…no small feat.
It took almost two days for Lynn to recover from the trip.  During that time he needed almost constant attention…and he seems to think I’m the only one who can do anything for him.  By Monday night, I was in tears.  My family vacation was no more than me in a room with the door shut (because Lynn was cold) taking care of Lynn’s every need and him  being unhappy because he didn’t have access to the internet, the cable package in the condo was limited, and he felt lousy, exhausted, and miserable.  Plus he decided he would try standing up with the help of our son and son-in-law…which didn’t work at all, so he was depressed about that.  What a vacation!  
I finally spoke up and shared my depression about spending our entire vacation shut up in a room with our children in the next room but inaccessible to me.  He realized what he was doing and then it got better.  He came out of our room each night after that point for us all to watch a movie together plus I put in an indwelling-catheter two days and managed to go to the pool for an hour (where I slept).  In fact, I’ve spent a lot of time on this trip sleeping.  I think my body is trying to tell me something.
So after a rough start, things got better.  The others put in a lot of effort to make sure I had some “me” time.  I had to remind Lynn periodically that others, besides me, could help him when he needed it but he would better at asking others for help when I reminded him of that fact.  Plus on Thursday when he tried to stand up again, he actually did better.  He could not really stand but he was almost there, so he was more satisfied with his efforts.  We also watched “JAWS” together and had a JAWS breakfast in honor of the meal scene in the movie.  It was a very nice time of family sharing.
One morning we got up at 5 to go fishing but by the time he could get ready, the sun was too hot and that trip was cancelled.   We tried again the next day, skipping some of his morning routine, and he managed to be on the pier for about two hours before he had to come in.  He was too tired to hold his own rod though which was a disappointment.  He tried twice but just didn’t have the strength to control it.
Today is the day after we got home.  I’m exhausted and irritable from the unpacking and trying to get caught up.  He’s exhausted and irritable from the traveling and being very needy but I guess things will settle in soon.  It’s good to be home though where at least he can get on the internet to entertain himself and watch his favorite programs.
So, “Was this vacation?”  Yes, it was…and one was able to enjoy periodically.  Different from the ones in years gone by but one still full of family and love and occasionally relaxation…just different from what we did in the past.
… Just another adaptation that comes with being a family caregiver.

Was That a Vacation? Read More »

Triumphs and Disappointments

As skin ages, it loses elasticity and the ability to self-repair as quickly. Good skincare is essential in preventing injury to the skin that can lead to infections.

We are on our last day of vacation, and as usual, I think everyone is looking forward to going home–although we have had a great time. There is no place like home, is there?

For instance…I helped Lynn take a shower yesterday in a regular shower stall.  I put in the shower chair for him to sit on and then stood outside the shower to bathe him.  Water everywhere, of course!  No room to move him. Had to have his son help me get him out.  Lynn and I were both exhausted, but the mission was accomplished.  I am sooo looking forward to our own shower unit that was installed by our church so I could roll him in and out.

Our own bed…that will be nice too.  Appliances that work and the cookware and utensils we need for dinner. Not having to put all the tables on books so Lynn can get his wheelchair under them.  Not having to remove a screen door so he can get onto the deck.

We had a few disappointments.  The biggest one was we tried to take his all-terrain wheelchair crabbing one night.  He spent a lot of money to get this special chair so he could surf fish and go on the beach.  Imagine our disappointment when he could not get it to move on the sand!  The chair was ordered from South Africa, so getting it fixed will be challenging, but we have already talked to them, and it appears to be a programming issue, so there is still hope.  But we will not be on vacation when it gets fixed-disappointing.

Started to go fishing last night.  Got everything ready, headed out the door and it was pouring rain!  We waited a while then decided to get up early this morning to go.  We did, got to the pier around 7 a.m. and fished two hours.  Several bites but all we caught was seaweed.
Now the triumph! And this is big. Lynn went swimming in the pool.  The boys sat him on the side of the pool till he got warm, then he went in.  The first day we went into the pool that was only 3 1/2 feet.  It was fun but challenging for him to do anything much.  Yesterday he went into the 5-foot pool, and it was awesome.  I was able to help him float around using afloat.  He was ready to kick his legs.  He was even able to float on his back alone, and he’s never been able to do that, but the best part…the very best part was…HE STOOD UP IN THE WATER ALONE!!  Ten times!!  He supported himself with the float.  The boys were on each side to help him get positioned right; then he pushed himself upright.  Awesome… My daughter has the pictures to prove it.
Triumphs and disappointments…. what experience doesn’t have them but all in all, this vacation was awesome. We’re so thankful to have the opportunity to once again vacation together, and to have a break from all the usual challenges.  I hope you get to have one this year too.

Triumphs and Disappointments Read More »

Vacationing with MS

We are on vacation.   It’s so nice to be away from home, with the sound of the beach in the background and our children around us but unlike the days before MS, vacationing with MS is not a relaxing experience.

First is packing to go…I had to pack his cool vest, his exercise equipment for balancing, his Hayek vent, his peddler, medications, two power chairs (one is a 4-wheel drive for the beach), one manual wheelchair, a shower chair, nebulizer, catheterization supplies, and then the regular things you take with you.

I rented a wheelchair van this year because Lynn’s leg spasms are so bad I was afraid he would have a set-back if he had spasms all the way to the beach.  The van allowed him to sit in his power chair, and if his legs spasmed, I pulled over and connected him to his peddler.

My daughter and her husband drove along with us and had to put most of our luggage in their car because our van had so much equipment in it. All the way here, I was driving and addressing his various needs at the same time.

Then we got here and unpacked the vehicles and discover that the entrance ways have a steep threshold so fortunately, I thought to pack a portable ramp so we could get the wheelchair into the condo.

Once inside, we need to move the furniture around so the wheelchair can get by things without damaging anything. We test out the bathroom–powerchair won’t fit so we test the manual chair…it’s tight, but it fits.
Today we tried to take him swimming.  It worked, but it took our two boys to lift him into the pool and me to hold his head out of the water while we floated around….but he was able to “go swimming.”

I used to get up first thing at the beach and go to the pool for the day.  I would read 4-5 books during the week.  So far, I’ve read three chapters.  Here when I get up I get myself ready, fix his meds, get him up, fix his breakfast, help him eat if he needs it, take care of his morning hygiene, then he rests a while and needs to be cathed again, then he needs this or that, after about three hours, I can go to the pool for a while but with a walkie-talkie in case he needs to be cathed again.
Not like it used to be, but it’s still vacation, and it’s still good to be away.  Tonight we’re going to try to go crabbing after dark using his all-terrain wheelchair.  He hasn’t used it yet, so we hope it works out for him.  Let’s hope he doesn’t drive it into the ocean or get stuck in a sand bar!   It’s all good though, and we’re glad to have this time together as a family.

Vacationing with MS Read More »