Any insights into the ups and downs of my bold plan? - AgingCare.com

Any insights into the ups and downs of my bold plan?

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Mom is 98, lives with my husband and me, is still physically robust, except for bad knees, and has dementia. Her dementia is likely LBD but could be vascular -- not Alzheimer's. She is easygoing and grateful for help, has episodes of incontinence which show up when she forgets to wear Depends or takes them off and leaves them beside her bed. She gets confused easily -- forgets where her bathroom is, etc., but is easily guided. She is only on one medication--5mg of Namenda each night--and it has worked for 8 years now to stop hallucinations and anxiety for the most part. She sleeps either in bed or dozing in her recliner A LOT -- I'd say up to 18-20 hours out of 24. I wonder if some of that is sheer boredom (my husband and I are 68 and 74 and not all that stimulating and exciting to be around), but have also read that it is one of the ways people prepare for death. So ... I'm wondering about your insights into the ups and downs of my bold plan, which follows: Her other daughters are in Albuquerque and she lived there for several years. She lived there with my youngest sister for 8 years or so before she began to deteriorate, and her place is very familiar. So I'm considering loading her into my car and taking off on a road trip -- just the two of us or perhaps including my husband or my other sister -- to Albuquerque. We would just take our time, stop for ice cream periodically, etc. The car is comfortable. The seat reclines. And it may be the last opportunity for her to visit those daughters and grandchildren -- sort of a family reunion thing. We would stay at my sister's place where things are known to her. Most days, I think it would perk her up. Some days I wonder if I've lost my mind to even consider it. It's about a 10-11 hour drive straight through, so with stops it would probably include at least one overnight in a hotel, but we might be able to instead arrange a visit to the town she raised us in on the way. I considered flying, but last time we tried that, the downsides outweighed the ups. I suspect this may be a trip I'm doing more for me than for her. Even on short jaunts, by the time we get home, she doesn't even remember going. But she seems to enjoy the moment when we do something special. I realize this is a lot of information, but I could really use some clear heads on this. Do you see mostly possibilities for something good for Mom (when I mentioned it to her, she thought it would be nice, but of course she doesn't remember that from day to day)? Or do you cringe at the probability of an impending disaster? Or better yet, do you have some concrete ideas for the best way to ensure a positive experience? Thanks for your thoughts.

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Instead of a hotel, rent an RV.
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We love shooting dice - mom and I stood at a table for an hour and a half and each won $500 that trip - she left the table once to go tinkle - the loo was in my sight or I would have had to go with her for fear she would get lost -

Hope you have a great time - I've always wanted to go to New Mexico
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MsMadge she sounds like my Mom. She was ALWAYS ready to go to the casino until they substituted "real money" with computer printouts. The thrill was gone. On her 90th birthday, my son was teaching her the ins and outs of shooting craps. At 1 AM they began to mention going home and she was heard to proclaim "the night is young"! She's a pistol and I appreciate you sharing your good experience with me! This is all very encouraging!
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I don't know about consulting lord gudugudu but I took my mom then 92 with mobility issues and dementia on a road trip from So Cal to Vegas - it was a wonderful trip and likely her last as she had a horrible fall 2 weeks later and now is in a care facility - of course if asked now, she'd still say she was ready to go to Vegas
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Thank you both. This is like having a tour guide of my very own! Glad I have some time to prepare. Sounds like I will be able to put it to good use -- and planning and organizing are not my strong suits, so your offerings are even more precious!
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Jeanne has some good ideas. We traveled a lot with MIL over about a 10 year period. The goal is to be organized and prepared. Think about what you plan to do and what you will or might need. For the car, I would take wet wipes, snacks/drinks, travel pillows for positioning, lightweight throw, disposable cups and bowls and straws. The reason for the bowls was to make it easier for her to eat cookies or whatever without having to dig into a bag or box. In my purse was a gallon Ziploc bag with a clean Depends, some latex gloves, and a travel pack of Wet Wipes. I actually had several of those packets made up and available. For the motel room, I carried a small bath stool, a hairdryer (to be used outside of the bathroom if necessary), a deck of cards or other games she enjoyed, nightlights, disposable bed pads. Be sure and carry any medical equipment she may require, walker, cane, oxygen...If you prefer, you might use the rinse free body wash and shampoo for ease of bathing while on the road. I have seen people turn the walker around backward around the toilet seat and use it to help stand. But the accessible motel rooms will have an elevated toilet and bars on the wall.

Paper work and medicines are a must. While you are on the road, you don't want to have to stop for bandaids or Tylenol, so even carry that sort of stuff with you. Also people tend to get constipated when on the road so that I would take that into consideration as well.

The idea of getting out of the car is a good one. We used to take walks in city parks, botanical gardens, even shopping malls. In the motel, breakfast is usually provided, but it was usually difficult to get mom up and dressed in time. That's where your assistant comes in. They can go down to the dining room and get breakfast for you and mom. Coffee is already in the room. The assistant is also handy at gas stops/breaks, getting into and out of motels, restaurants, stores. Getting into and out of the car is easier with help. And that reminds me. We had a van, so I used a folding step stool to help her climb in. Also there is a plastic thing that fits on the seatbelt that you can latch the shoulder part in to keep it more comfortable. Check out Walter Drake or catalogs of that ilk. It's not expensive.

I think that if you plan ahead, and get organized, it will go well for you. Think about what you use around the house and if you will need that on the road. Even a portable bathroom heater can come in handy if you have room for it. Think about mealtimes, if you use special dishes or cups or bibs. Think about bedtime and morning routines. Make notes and lists. Good luck and happy trails to you!
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I took several road trips with my husband, Coy, while he had dementia (LBD). He was not in his 90s and he was fairly high functioning. It sounds like your mother is, too.

We traveled from St Paul to Madison, which is a 4 hour trip, in two days. We made those days part of the vacation experience. We toured a brewery. We stopped in out-of-the-way museums. We ate at fun places. Obviously stretching a 4 hour trip into 2 day means we stopped A LOT. And we both enjoyed it.

Toward the end of his life we went on a cruise on Lake Michigan, which meant a 6-hour drive to Chicago. We allowed 12 hours. We needed it. Coy was more frail at this point and I had/needed help! Our son did the driving (and his reward was finding the worst motel he'd ever seen in his life on the way back), freeing me up to attend to Coy. Our daughter came along to help on cruise.

Coy enjoyed the trip. He would not remember it on his own but I quickly put together a photo book which he enjoyed looking at the remaining 6 months of his life. Before the trip he looked through the cruise brochures and told everyone he encountered about it. That plus the photo album extended his enjoyment of the trip to several months!

Some tips:
Disposable undies. ("Just in case there isn't a bathroom right when we need it, and you leak a little.")
Plenty of water or other beverages. Also stopping often for a beverage can be a nice break.
A transport chair (or wheelchair if that's what you have. Transport chairs take up less car space.)
A small pillow for the car.
Healthcare directive. (Coy always reminded me of this. He was determined to donate his brain to research and he wanted that to happen wherever he died. So we traveled with that paperwork, too.)
List of medications (doesn't sound like this is applicable to your Mom), home clinic number. (Which would be on my cell phone, now.)

Once we drove to a family reunion. Coy knew most of the people (and liked them) but the crowd and the commotion was too much for him in large doses. A couple of times he went and sat in our car. I made sure he had water and I checked on him. He was glad that everyone was OK with him resting.  Make sure your mother has some down-time!

Whew! I didn't mean to write a book. But I did several times what you are intending to do, and I think it can work just fine. 
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You obviously were GivingItYourAll with your MIL! And the voice of experience is so rich! Those are great suggestions. And that reminds me that I MUST take the raised toilet seat with me -- easy to forget. So THANK YOU!!! Exactly what I was hoping for.

I read in a post awhile back that it's also a good idea to cover up the mirrors in the hotel bedrooms so they don't think someone else is in there with us. I had forgotten that until your post. And I CAN break it into 3 days instead of letting my Achiever self push us to "get there, get there, get there". Classic case of remembering that this trip is about the journey, not the destination. It's so good to hear from others who have done this and had it turn out well!
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Having done what you are considering, I would like to offer some suggestions. Take someone with you who is capable of helping you. Not an elder, not a young child. Break the trip up into at least 3 days. People get stove up sitting and not moving. Blood clots then become a real possibility. When you stop for gas, go to the bathroom. You will need help here. Take a wheel or transport chair even if she doesn't normally use one. In the hotels, ask for a mobility impaired room. Take nightlights, snacks, water or other drinks. Vending machines add up.

I would also suggest many shorter practice runs to see how she does when penned up in the car for hours. My MIL used to open the car door, play with the windows and take off her seatbelt. Also it was hard to regulate her temperature comfort. If she was wearing a sweater, she wanted it off, etc. She fidgeted a lot. I have to go now but will write more later. This might give you some ideas to chew on.
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blannie, that is SO encouraging! Thank you! And yes, you capture my feelings and intentions perfectly. We won't make the trip until April or May when there's no chance of more snow. I'll let you know how it goes! Again, thanks so much for your response!
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