Fulltiming With Dementia

We met a couple in Quartzsite one year. The wife was quite bad with Alzheimer's. Didn't appear that she could function socially much at all. He doted on her, but did not leave her alone outside for even a minute.

Are you the primary driver? Are you alone? Any idea the rate at which your disease is progressing? The answers to those questions would help make a decision.

If you do decide to continue, I would definitely have an exit plan in place to make it easy on your partner. If you become belligerent and difficult to deal with, that would make a transition back very hard if the plan is not already there. Make those decision now while your mind is still clear.

Good luck.

Dale

DW started to show signs of the disease about 5 years ago. Nothing serious. Forgot to turn water taps off; forgot to turn stove off; made lunch and then went to make another.

We decided at that time that she would not drive anymore. We were concerned that she could mistake the brake for the gas pedal or the other way around. I did all driving from that time on.

As the disease progressed, she demonstrated fits of extreme anger, sometimes violence, and extreme strength. She is normally a very quiet person. She often left the house to "go home" and we had to go find her at any time of the day or night and in all types of weather.

She is now in the late middle stages of the disease and has calmed down somewhat. Still a challenge every day to survive a little longer. She requires about 95 % care at this time.

I am no expert of the disease. I have to struggle every day to try to understand what she is going through. I only provide you with the above details so you know that I have experienced what you will go through.

My advice to you is that you should not continue to drive. If your spouse can handle the RV and all the work that goes into it, and if your spouse is a very calm person and can handle the angry outbursts, while driving, then you could continue for about two years.

Think carefully about the effect the disease will have on your spouse and whether she can handle it or not. That is the main issue that you have to answer.

I wish you the best of luck.

Meaning no disrespect but this is not a question to be asked or answered on this forum. Instead this is a conversation to be had with your doctor(s). Best of luck in your choices.

wow that's an interesting question. Ive treated many folks with dementia and Alzheimer's during my time as a paramedic. really only your doc can answer that. Forgetting to do something on a rv can have expensive consequences.
However Ive seen folks who have had little to know change in their behavior for years. Other diseases changed their lifestyle before dementia did. If you and your wife think you have some good years yet to travel then get out there.
Like the others have said have an exit plan for the sake of your spouse. If things get bad just get off the road and into a facility that has a great memory care dept. meds and therapy can make symptoms much easier to live with. Make sure she is provided for as far as selling your rig and getting suitable housing. Good Luck.

From your initial post, it isn't clear what your house status is.
You said you were set to go full-timing. Have you sold your S+B house already?
Depending upon what your doctor has to say, you might enjoy one or many years of full-timing before the disease makes it difficult, not enjoyable (for you and/or spouse) or impossible to continue.

I assume you already have your 5'er? If your spouse doesn't tow the 5er, you both need a serious discussion that either the spouse will learn or full timing will probably not be a reality.
I believe you definitely need to plan out an exit strategy, and especially if you've already sold your house - then plan for assisted (memory care) living.

God bless you and good luck. I hope you have many years of enjoyable travelling.

A side note to Dementia issues, it is important to have an Advanced Health Care Directive completed for the individual while they still have their mental capacity. This will serve to protect the medical treatment rights of the individual and enable family members to make appropriate medical decisions. Call your local Ombudsman agencies for the blank forms. There is no charge and the family can complete this from without a lawyer or Notary Republic.

My father was full timing with my step mother. He had been full timing for a number of years, but then was diagnosed with Alzheimers and later on, dementia. He got in a small fender bender at the gas station with his 5er, and at that point, my step mother did the right thing, and they got off the road. They were staying in the 5er, in Arizona for a while, but it got too much, and they moved in with me.

Point here is, as a few folks point out, you need to have a conversation with your doctor. Based on my experience (limited to my fathers experience), every situation is different, and every individual is affected differently, at different times. You definitely need to make plans now, while you have your full mental capacity, for not only the extraction plan (getting off the road), but update your will, get your Advanced Health Care Directive, and get your affairs in order overall.

Im sorry to hear about your diagnosis. I am totally in agreement with you... take advantage of the time you have. Just learn (from your doctor), how the disease progresses, and what clues you and your spouse need to look for, that might signify a change.

Mike

If your spouse is ready to take on responsibility and follow you making sure everything gets handled with the RV along with watching over you full time (and assuming your doctor doesn't take issue)...go for it.

A lot of it will be up to your spouse as she will have a lot of responsibility but it's not like it will be better in the future. As long as you aren't putting others at risk, go down kicking and screaming having the best time you can as long as your spouse is willing.

As others have said, have an exit strategy if it becomes too much.

Thanks for all of the input here.

I have talked to my Dr. who doesn't have the first clue about camping at all,but the one thing I have learned from my Dr.'s and support groups is the only thing that is a sure thing is that it is a progressive disease and is entirely different for every person and how quickly each goes down the no way back road is also different for each.
Sure would be easier if it was more structured I guess.

Thanks again for the input

I am going to send this thread on to the Full-time RVing forum so that you may receive more input concerning your situation.

Sandi (Moderator)