My wife was diagnosed with ALS aka Lou Gehrigs disease, three years ago. After the first 6 months, as walking was becoming difficult for her, we decided that our current residence was totally unsuitable. Narrow hallway, tight bedroom, inaccessible bathroom, three steps to the front door, and so on. She would also soon need care full time. We discussed what to do and she surprised me by asking to buy a handicapped RV and hit the road. We managed to find a used RV with.a wheelchair lift. I took early retirement, we sold the house, and have been officially homeless for two years.
Since we hit the road, my wife has become almost totally disabled. She can talk, eat, and breathe, but cannot use her arms or legs. She is in a power wheelchair with a chin control during the day and a hospital bed at night. I use a pool lift to transfer her to bed and the toilet. There is now a long list of things that I never thought I would have to do for her that occur on a daily basis.
I was putting her to bed the other night and it occurred to me that what was necessary and natural to us would seem rather weird to others. So I am open to any questions about our lifestyle.
Do you travel most of the time, or do you spend long periods of time in one place? Are you able to get help from others, or are you 100% responsible for your wife’s care? It must be stressful for both of you at times, how do you manage that?
We belong to a camping association that allows us to stay in their campgrounds up to three weeks. We tend to move every two to three weeks. Sometimes we stay longer, we stayed at my father-in-law’s house for a couple of months after he broke his hip. We did not travel as much as we thought we would, it is very tiring on my wife. We have been to Washington state and visit New Mexico to see my relatives but spend most of our time in southern California.
I am the sole caregiver. My wife sees her neurologist in Scottsdale a few times a year but we don’t stay there. We deal with problems as they come up and make adjustments as needed. The hardest part is when she loses function which is very frustrating. I can remember the time she could no longer feed herself and declared that she would never eat in public again. In time, she accepted that I could feed her and we can eat in restaurants again. The way to deal with stress is open honest conversation. I have to give her time to express herself and take her problems seriously. Very often, she has found solutions to problems that make her life better. I am so glad that she has a good attitude and does not blame anyone for her condition. Despite what has happened, I still am glad to be her husband and she is the best thing to happen to me.
Does the RV feel like “home”, or does it feel temporary?
StG
Are there places that she would like to see that you haven’t visited yet? Even staying on the West Coast there’s quite a bit to see, and there are often handicap accessible trails. I’m thinking about the Grand Canyon, Yosemite, and Yellowstone, to name a few. You might not be able to see everything at each place, but if she hasn’t been there, she might enjoy them.
Tell us more about the RV. How long, manufacturer, how is it set up for you and your wife?
Are you ever able to arrange for respite care? If you are able to map out your trip, you may be able to work with care services to take an afternoon off here and there.
Do you stay at the slabs in southern CA? Saw that in the movie Into the Wild.
The RV is a 1998 Itasca Suncruiser class A motorhome, 34 feet long. It was converted for wheel chair accessibility at the factory. There is an extra door on the passenger side with a wheelchair lift underneath. The bathroom was converted to a flat floor shower and there are lift mounts in the floor by the bed, toilet, and front passenger seat, which was three way power adjustable (up/down, forward/back, and turn). The seat was not comfortable for my wife, so we removed it to make room for the cat cages. I added the adjustable bed. To get around when we are parked, we tow a wheelchair minivan with a car dolly. Total length with car is 55 feet.
This is not temporary, the RV is our home.We have not slept anywhere else for two years. We cook, eat, watch tv, sleep, and basically live here. There are some adjustments such as I will only cook bacon outside and we have no washing machine or dishwasher.
We spent a week at Yosemite last summer. We spent some time in the Redwoods and went to San Francisco. We have been to Grand Canyon also. What we did not know until last year was that a handicapped US citizen can get a lifetime pass for the national parks. Many of the parks allow handicapped visitors drive in to areas that are not car accessible to other visitors. Grand Canyon was very good about access.
My wife has been very firm that she does not want to leave home for a nursing home or hospice care. That does not mean I have no time off. She will go out for an afternoon with a friend or relative. As long as I can be reached by phone, it has worked out. In any case, this is my life and I am comfortable with it.
And we have not considered the slabs because we need electricity for my wife’s accessories including the BiPAP machine. We plan to stay in RV parks with reliable utilities.
Much of the nation is in various degrees of lock-down these days, and even where not, people are very nervous about covid-19. How is this affecting you and your wife and your plans and activities?
Our next destination just closed till the end of April, so we are stationary for the next month. We are not very social but the usual amenities such as swimming pools, libraries, and movie theaters are closed. We are more dependent than ever on tv and wifi which are barely ok where we are. Bullhead AZ, just across the river, just closed all city parks. I go shopping for food a couple times a week. Our tiny fridge and pantry makes it hard to stock up. School for the boys is difficult, the wifi is just not good enough for school but mysteriously good enough for youtube. May have to spend some time in the van by the closed library to make some progress.
You have kids? How are they handling everything? (Mom’s illness, moving to an RV, no standing school, Covid)
StG
Two boys, 11 and 10. Their mother’s condition has been hard on them, especially the older son. He adjusted first by shutting her out completely. It took time and some one-on-one conversations for him to accept it. The closeness of RV life may have helped, as it is harder to reject what is so close to him 24 hours a day. The younger son is much closer to his mom and had lots of questions. Last Thangsgiving, he woke up my wife with “Happy Thanksgiving. Could be your last one.” which both my wife and I found hilarious.
I assume the kids are home schooled?
Yes but we need decent wifi to get their lessons.
do most campgrounds have decent wifi? Can you download a lot at one time if the wifi is good?
The classes are interactive so we can’t download them in advance. Some campgrounds have decent wifi but most don’t. We often go to public libraries that are very accommodating. There are exceptions, LA county libraries are for residents only. That is not an option now.
What is your back-up power supply situation like?
There are batteries for the internal lights and there is a generator for the 120 V systems, including the AC. The ventilator has built in batteries, but they only last 6 hours so won’t last the night without external power. We can use the generator overnight but it is frowned upon to use it when boondocking in a parking lot. We can get by on 15 maps if we don’t need AC, but I have to be careful not to blow a circuit. Cannot use the electric heater, and the microwave at the same time, for example. That means we can stay in a driveway if it is not too hot. Still have to arrange for water and sewer when utilities are not available.