RV living with a disabled wife? - RV-Dreams Community Forum

GENECOP · RV-Dreams Family Member

RV living with a disabled wife?

Parrish · RV-Dreams Community Member

Thanks for your support. I keep second guessing myself but always come back to the conclusion that I am making the right decision. I figure I can always get another job. I just want to see the the hard work of getting out of this place in the rear view window. I would love to winter here though to see old friends. My current home joins BLM where I can boondock and visit my current neighbors. They are great!

We have a 2007 Cyclone toy hauler. The rear ramp is not wheel chair friendly and I ussually use portable ramps to load her chair in the rear door. I saw where the new toy haulers have modified rear ramps that can be supported such that they are a back porch. I tested using bricks and two by sixes to support the ramp such that it is a similiar back porch. With our portable ramps she drive up on it. She uses a manual wheel chair once inside and she can walk a little bit as long she has something to hold on to.

I was trying to think of a way to fabricate a light weight easy set up/breakdown front porch for her to wheel chair up and enter the front door. Can't leave the back ramp down if is cold out or if I am worried about her security.

Those inside stairs scare me, if she should need to be left alone though. She is a tough gal though.

-- Edited by Parrish on Sunday 29th of January 2012 09:51:03 PM

-- Edited by Parrish on Sunday 29th of January 2012 10:14:10 PM

Parrish · RV-Dreams Community Member

My wife (with mulitple sclerosis and a disabled veteran) and I have been planing on full timing for a couple of years. We love our fifth wheel boondocking in the desert southwest and keep a boat at Lake Amistad for the long weekends. Her multiple sclerosis has turned for the worse in the last couple of months, essentially one leg is paralyzed and she is wheel chair bound. Incontinance has become an issue to.

After 11 years as a senior environmental engineer with a six figure salary, I have decided that I've had it with working for an unethical and dishonest company. I am out on FMLA leave at the moment and fixing up the house for a quick sale and organizing yard sales. Told my boss I don't plan on really being back (he is one of the good guys). Want to go quick, don't know how long I will be able to take care of her. I love taking care of her and look forward to spending more time with her.

I hope that the RV is a good place to take care of her? Getting her in and out in time to get to the rest room might be a challenge. The stairs to bedroom might also be a real problem if I am not there to help. I Plan to add some grab bars/railing at the stairs to the bed room mounted to the floor, don't want her falling. At least she will have only steps from the bed to the shower and bathroom.

It sure is emotional being fed up at work, people trying to talk me out of leaving, leaving friends and neighbors. I look forward to getting that behind me. Fear the budget on her SSD and veterans. Hope I get enough equity out of the house for a nest egg. Hope she still has time to enjoy our dream life.

NorCal Dan · RV-Dreams Family Member

I admire you as well given the challenges ahead for both of you. Hope the real estate market in your area is good and allows you to capture some equity and sell quickly. GBY.

Trabuco · RV-Dreams Family Member

Parrish - I agree with Dan and admire you guys for going after your dream. I have seen at least one 5th wheel modified for a wheel chair. Where there is a will there's a way. GO after your dream.

53 Merc · RV-Dreams Family Member

Parrish, check into local handicap accessibility places. I have seen several lifts that attach to the side of the door. One lifted a wheelchair, another the lady had to get on a lift seat that after lifting to door level, then swung into the 5er. Don't know how she handled the steps into the BR. Another thought, check out one of the scooter stores or hoverround store. Bet they have some equipment to help out. I do know that ADA will pay to install some types of lifts into trucks and cars. Seems you have to buy the lift, but they pay to install.
Another thing. Don't know your state of residence, but when we bought our last rig, we insisted on handicap accessible handles being installed before purchase. By doing so, we did not have to pay state sales tax or county tax on the purchase price.

Parrish · RV-Dreams Community Member

Thanks for the advise, I am looking at all these things. Trying to concemtrate on getting out of the S&B at the moment. Then we will conquer the challenges of the fifh wheel. I am really counting on smaller and less being better.

Spirit_Moves · RV-Dreams Community Member

It is so wonderful to see such a caring,loving husband to his wife. From my perspective it is not about money, abundance comes in many forms. Also sometimes it is quality instead of quantity. Although this will be challenging for you and only you two can answer your own questions the outcome could be some very special memories of a lifetime.

I am a disabled veteran and disabled nurse. This after spending many years taking care of others not knowing there was a degenerative disease process going on. Now although the idea of fulltiming can be a bit overwhelming I find I can't die with the wanting to have done this. So I am taking on the challenge.

Personally sending blessings to both of you and know that whatever choice you make it will be the right one for you both..

"Happiness lies in the joy of achievement and the thrill of creative effort." Franklin Roosevelt

PIEERE · RV-Dreams Family Member

Parrish: I can see that you have the courage and determination to make your transition real. Don't put off until tomorrow what you can fufill today.

You will always cherish these special moments that you share together. I can see traveling is both in you and your spirit; go for it.

PIEERE · RV-Dreams Family Member

Spirit_Moves wrote:
It is so wonderful to see such a caring,loving husband to his wife. From my perspective it is not about money, abundance comes in many forms.
I am a disabled veteran and disabled nurse. This after spending many years taking care of others not knowing there was a degenerative disease process going on. Now although the idea of fulltiming can be a bit overwhelming I find I can't die with the wanting to have done this. So I am taking on the challenge.

smile smile Pushed me to respond: I decided in 1998 a the age of 47 to do this fulltiming and workamping gig before something drastic happened. I haven't done all the sight seeing I wanted to yet. I give credit to all the people who have the courage to change dis-abilities to the ABILITIES and live a sucessful life. The end of March I had three stents and an angioplaty done to the main arteries in the heart. I am recovering one day at a time and have the north-west Territories on my bucket list. Bless All! Pieere

Linda · Hostess

Parrish,

I don't know if you are determined to stay with a fifth wheel or not, but Howard and I just met a couple that has a totally wheelchair accessible motorhome.

It is a Newmar All Star.

The wife is paralyzed from the waist down and never thought she would ever get to go camping. Now she can go anywhere. The joy on her face when she was showing it to us was priceless.

If you would like their contact information just PM me.

If we are lucky, they will join our forum.

-- Edited by Linda on Sunday 22nd of April 2012 08:27:17 AM

Bill and Linda · RV-Dreams Family Member

The Newmar MH was very cool.

The lift for the wheel chair was a great design. Very sturdy, safe, quick and very easy to operate. This was not an afterthought installation in anyway. It was built into the coach from the first design. You should at least check it out. I think it will give you a new perspective.

I was really impressed with the effort Newmar put into this solution to provide safety and easy of living for those with this specific need.

Bill

DebandDon · RV-Dreams Community Member

Parrish,

We are the couple Linda mentioned above who have the Newmar Allstar wheelchair accessible motorhome.

Newmar made only three of these on a Spartan chassis with a mid-engine Cummins 400HP diesel starting in 2007/2008. Ours was the third and last one made as Spartan discontinued the Allstar chassis design due to the downturn in the economy.

However, Newmar has recently begun production of the Canyon Star gas engine model with the same type of wheelchair lift we have and interior bathroom and center isle wheelchair access (with slides in). We bought ours through Steinbring Motorcoach and Jon Steinbring apparently has one of the new Canyon Stars in stock now. I have included the link below.

Newmar Canyon Star Wheelchair Accessible Motorhome - Steinbring Motorcoach

Good luck on your quest. Our motorhome has created a whole new life for my wife. She grew up tent camping with her family then a motorcycle accident came along when she was 23 and put her in a wheelchair. But she is back to "camping" again with me. If you can call a motorhome camping.

Don

Rosie RV Thumper and Dog Dog · RV-Dreams Family Member

Hi Parrish,

I applaud you for what you are going to do with your wife. We are in almost in the same way but I am the one that is sick. We two have said go out and just do it until we can't anymore. Here are a couple of websites for you to look at.

Have a Great Time smile

Thumper

http://www.rexhall.com/index.php?option=com_content&view=article&id=11&Itemid=24

http://www.rvproperty.com/rvs_for_handicapped.htm

http://www.thatsnotcamping.com/rv-lifestyle/rving-for-disabled.html

Edit by moderator: Activated links. Terry

-- Edited by Terry and Jo on Wednesday 23rd of May 2012 10:10:35 PM

Tom and Debbie · RV-Dreams Community Member

Parrish,
I too want to encourage you. My husband has had many physical issues from years in the Air Force and is VA disabled. We have just recently begun fulltiming. Things may not always be perfect and there will be challenges, but we think we can meet them together.
I pray things have come together for you to be free to enjoy life, and the house has sold by now.

Let us hear from you.

yroller · RV-Dreams Community Member

Hi, these e-mails are very informative. My husband is also physically handicapped after 3 strokes. After seeing many layouts of all types of MH, our finanacial situation, my physical limiting, etc...we just bought a Class C Used Itasca to give it a try. We have found things are not perfect but just like Tom & Debbie, things will come together and I, too, pray for you! I am taking everything very slow. I also heard Winnebago has a special depaetment dedicated for handicapped individuals.

No matter how and what you do, it is wonderful to have an RV. His strokes deprived us of many activities we used to love to do together - backpacking, hiking, cycling, etc - but our RV makes it possible to go camping again on many weekends and occasional longer trips. Our B&S house is a mess but we are HAPPY CAMPERS.

We are still dreaming and already started thinking about our next RV (with a wish list). We wish you the best.

Well, you are probably enjoying your f/t RVing by now.

BEST,
Dan & Yumiko
Dan is a retired Navy but I have at least 3 more years to go.
Class C Itasca 2008 Spirit 31C
Electric Scooter

Jwar · RV-Dreams Family Member

I was a caregiver with my late wife with MS. ( she did not pass away with MS, but from cancer, MS is not fatal) As you know MS will spike in unabuility to do thinges, then mellow out or stay at a constent untill the nest exerbachion (SP ?) Only 6% will be bed ridden, mine was. A large percentage of patients will stay at the same level after the bouts cause by the milon disease, you are probably well verrst with MS, please PM me when ever you want, it can get stressful and you need to chat with someone at times, PM me I will give you my Phone #
We found a 29 ft Country Class C that was built for hanicapped, had two swing out doors and a WC lift i installed a front passenger HC swing seat I used that rig for over ten years got so use to it drove it like a station wagon LOL. With a jack knife bed, wide bathroom door it was fairley easy assisting her for all bathroom needs, as we also had an electric amigo wheel chair that the seat could raise, spin around in its own wheelbase (very importent not only for her but the caregiver) excellent seat lift (up and Down) for various heights of tables,bathrooms like restraurants.

I have been searching for DPs for some time now and came accross one with a lift in it. Somthing with a level floor and easy entry would sure make it easy on her and possably on you. Years later I got a hospital bed and had her in the living room so she could see down the hall, the kitchen and a good view outside. Towards the end, last seven years I had to have someone care for her so I could not only her saftey but work topay the bills and keep our medical insurance.

I have since remarried, but think of her often. Everyone is different and Pat's attitude really changed. MS does not affect the brain, however not being able to do what one considers easy, can lead to depression of which has to be gently dealt with. After a period of time she got to be fun and laught at her MS. When she said " To hell with it, I didnt like to cook anyway" or laught as ask "was that your washing machine thats buzzing" , went to a MS siminar and one thing they said was imortent to me " I a manner of speaking MS is a good diesese if one has to get it, one doesnt loose thier ability to think or reason"

Being your a caregiver it is hard to watch a love one with this, but their are ways to make both of your lives more pleasent in everday activitys, Feel free to PM, anytime, here or my home.

God bless.......John Warren

-- Edited by Jwar on Thursday 17th of January 2013 05:19:12 PM

Norman R · RV-Dreams Community Member

May he Lord bless you, buddy. My wife and I have two beautiful children who are disabled ( ages 3 & 7)We are in our late 50's and have retired. We recently bought a 38 foot motorhome because we found that its easier to travel with disabilities in the Motorhome rather than trying to carry all that equipment, wheelchairs, clothes, formula etc. to and from home, to the airport, etc. On top of all that you get to spend more fun time with the one you love. I don't think you'll regret one minute of your decision to spend full time together. Heck we've just done a couple of small trips and its been a blessing. All that you're limited by is your imagination.

Parrish · RV-Dreams Community Member

I really appreciate all the feedback I have had on the forum. I guess I haven't visited this page in a while. RV living without a job is still a busy life and yes my caregiving duties are huge. We spent about three months in Boulder City, NV so Cindi could visit with her daughter. We had lots of support there from a Veteran we met, the VA doctor assigned as Cindi's primary care doc ran a MS support group with her niece, great neighbors and good folks at Canyon Trails RV Park. I discussed putting Cindi in a VA nursing home there near her daughter since she Lives in Henderson and would be able to visit her often. The VA was ready and willing to put her in one; but, that was much more real than the discussions with her daughter. I freaked out on the idea of being alone and we are now headed back to Texas to keep warm for the rest of the Winter and Cindi loves fishing. She has a 9.5 lb bass mounted on the wall in our fifth wheel. We are now in Wikieup, AZ boondocking.

I think the MS or something has definately affected Cindi's mental cognizance; but she is mostly there mentally. She is still able to get in and out of the fifth wheel and up the stairs to the bed room most of the time. You never know when she is going to have a bad day and need assistance with these simple things. I think it is probably better that she fights or struggles to get around in the fifth wheel than riding the wheel chair around our former sticks and bricks home. A portable camping toilet on the living floor also makes things easier for her. I keep it in the back of the truck when we are traveling. She use to be able to ride many many hours and say, "if you see a place with a restroom lets stop. Now it is I have to go now, pull over.

Thanks again for all the support and enouragement on this forum.

PIEERE · RV-Dreams Family Member

Parrish: Thank you for the follow-up. It has been almost a year and pleased to hear that you are doing well. I assisted a brother who had Alzheimers from 1994, we were both divorced,In 2006 when the decision was made for a nursing home was the most difficult. There was times we laughed, cried; and many times I would get so discouraged cause there wasn't anything more I could do for him. the Caregivers job was harder than putting in a 60 hr a week job. But as I look back on it, it was worth it to have spent so much time with him. He died in November of 2006. We had so many great times during those years, that I had to overlook the terrible last few.
Guess; what my point is: Enjoy your wife Cindi for as long as you can. Like the Song; Live Like YOU were Dying by Tim McGraw. Go out there and do the things as though you were "A Courtin Her again!

Wheel_Estate · RV-Dreams Family Member

I know this is an older thread, but I'd like to bring to your attention this blog done by an amazing couple we had the privilege to meet and enjoy. They are 20 year full timers, and Karen is confined to a wheelchair. Tony is strongly committed to his wonderful life mate, and together they are avid boondockers in many of America's most beautiful locations.

I'm sure you'll be as impressed, as we are, with their informative, well done blog and fascinating adventures.

Enjoy....

rollinginarv-wheelchairtraveling.blogspot.com/

Also, their boondocking map site...

maps.google.com/maps/ms

Lucky Mike · RV-Dreams Family Member

I love there Blog and there reviews and how they list boondocking spots is wonderful......its a must read !!!!!

BiggarView · RV-Dreams Family Member

Proof that one can never get too much inspiration or motivation to follow one dreams, no matter what the obstacle. Great stuff... just makes me want to hit the road sooner. I'll definitely add the links to my growing list of resources for our future adventures. Thanks for the "refreshed thread" post Jay.