Fulltiming With Dementia

[alaska315]

I know this might seem like a strange question,but is anyone fulltiming with Dementia?,and how is it working for you?.

We were set to go fulltiming in the 5th wheel within the next 3 weeks and then two weeks ago,I was diagnosed with early stage dementia.I guess maybe I should have known as several things just weren't right the past year,but I blew it off as old age,uh huh,lol.
Funny thing was that I didn't even go to see the Neurologist for this.She found it thru normal testing.

I have several other disabilities that limit the meds I can take,so my thought was to just take as many photos as we could and enjoy the time however short it may be,but thought I would see if anyone else is or has done it.

Thanks in advance.

"Life is a glass of adventure,make sure you drink every last drop" Trip Ruoff

[John_Joey]

Dance Chick wrote:

Corky12 wrote:
People with dementia tend to cope with routine and familiar surroundings. Changing locations, unfamiliar roads, different daily routines can be very disorienting. So while you may do very well at home for a long time it may be a different story while traveling.

Very good point. That was our experience with DH's mother, sister, and now 2nd sister.

^^^^^^X3^^^^^^

IMO, I think it is most important to talk to your future caregiver and find out how much they are willing to take on. They are the unsung hero's in all of this. Your dream of FT'ing may not be theirs anymore given the new development. Hope everything works out for you.

[CA_POPPY]

double post please delete
,

[CA_POPPY]

When we had my mom (mild dementia, age in her 90's)living with us, we drove the class B with her seat-belted in the back. She had pillows, a bottle of water, her puzzle books, etc. She had been instructed to never take her off her seatbelt. Then one time we were traveling I-5 @ 55mph and looked in the rear-view mirror to see Mom out of her seatbelt and toddling up the center aisle to the bathroom! Talk about crossing our fingers and praying! She made it to her destination and back! That generation has been strong and independent all their lives and darned if they are going to have a "kid" telling them what they are allowed to do. We didn't travel too much after that, but if we did, I rode back there with Mom. She never, ever complained about the accommodations. I swear, those depression-era kids would sleep on a picket fence! Miss her.

[sancoots]

I do not full time, but my husband and I have a travel trailer and travel extensively throughout the summer. I agree that the person with dementia will not know when to stop driving. It was a struggle to get my husband to stop driving as he did not see an issue even though his short term memory and concentration was severely affected, but finally with the help of the health care professionals, he finally agreed. We continue to camp but I do all the driving and make sure I know how to operate everything to do with the trailer and I double check everything he does to make sure nothing is forgotten

The other issue I have found is that he cannot remember where we are parked, so whenever we leave the trailer, I have to be with him. He cannot even walk around outside by himself off of our site because he will forget where we are parked. We make the most of it and as long as it is still enjoyable and not too stressful we will continue to go know that in the future we will probably have to stop.

Most important have a plan in place for when you have to stop.

[TechWriter]

2gypsies wrote:
You'll both know when to quit.

That's not necessarily true. When my mother's dementia made it difficult or impossible for her to drive or even use the phone, she would frequently get frustrated and angry. Often she would just not listen to anyone.

[2gypsies1]

If your wife can drive the RV and your doctor approves I really think RVing is doable for a certain time. You'll both know when to quit. Enjoy it for now. It will be so much better than sitting in a house. It could be years before you need to stop. You just don't know.

[Dance_Chick]

Corky12 wrote:
People with dementia tend to cope with routine and familiar surroundings. Changing locations, unfamiliar roads, different daily routines can be very disorienting. So while you may do very well at home for a long time it may be a different story while traveling.

Very good point. That was our experience with DH's mother, sister, and now 2nd sister.

[Corky12]

People with dementia tend to cope with routine and familiar surroundings. Changing locations, unfamiliar roads, different daily routines can be very disorienting. So while you may do very well at home for a long time it may be a different story while traveling.

[CA_POPPY]

I think it is uncommon for a driver to have this much self-awareness. More often, you see people who are confused, or missing vision in one eye and thus lacking depth perception, stubbornly insist on continuing to drive until the problem comes to the attention of the authorities. Good for you!

[TechWriter]

nbking wrote:
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.

Yeah, driving is the question. If you're still driving now, who or what will determine when you will stop driving? You may not be the best judge and you don't want to wait for an accident.

When you stop driving, can your spouse take over all the driving? If not, you may want to rethink this whole adventure.

This is not a "Just go for it" kind of thing.

Maybe a Plan B -- what about having someone else do the driving? Like tours?

[PawPaw_n_Gram]

One thing I would recommend after you talk to your doctor is a talk with your spouse and your family.

Set some firm directions/ limits. i.e. When I show sign A - stop me from driving, when I show sign B - we need to park the rig and not travel any longer.

One of the fellows in our Good Sam chapter has been diagnosed with early onset Alzheimer's. He made such plans. He also discussed them with some of us in the group. Because his wife is not physically able to drive the Class A they have, and one of us might have to come get them and bring them home.

He also wrote a letter to himself, that he hopes he will read and understand when the decisions come.

Having lost my mother, all her sisters and brothers and their mother to Alzheimer's, I've seen the bad part of not planning ahead.

[alaska315]

Thanks Sandi,

I never thought the question would generate the interest that it has,hopefully it may help someone else down the road as I have seen very little about it on any forums,Thanks again.

"Life is a glass of adventure,make sure you drink every last drop" Trip Ruoff

[answerswillvary]

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)

[alaska315]

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