Traveling with DW and ALZ

Artworker · October 9

My DW is moderate stage ALZ and we are planing a trip to my parents (ages 99 and 96) that live in a different part of the country. We flew out about 7 months ago and it was very disorienting for DW but overall the trip went OK. The airport was very chaotic and flights were delayed and she became very stressed. She needed an up to date written itinerary for each day and that was helpful, but there were several confusing moments and she had trouble remembering where we were and why we were there. The last trip out about 3 months ago we tried to drive it because we take lots of day trips and she enjoys riding in the car so I thought maybe we could just slow everything down and take our time. Big mistake - we ended up cutting our visit short because she was disoriented by staying in different places and just wanted to be home. Our grown kids have offered to check in with her for a couple days so I can run out to see my folks for but I worry that DW is getting to the point that she needs someone to be with her a lot. Especially at night. We are just starting to explore daycare options but DW would not tolerate a stranger in the house right now.

SusanB-dil · October 9

Good on looking into daycare… Hope that works out.

Just a couple ideas that come to mind: Could one of your kids maybe stay a couple nights?

Would she tolerate someone if the roles were switched with the person? You could tell her that the person is there because they need more hours for certification. Or they need more hours because of kids to support.

There are also some places that have respite care for a week or two. Maybe tell her there was a watermain break, or the electricity is out, so she is staying elsewhere for that week or so.

harshedbuzz · October 9

To my ear she sounds beyond being home alone at all with you elsewhere. You absolutely provide a huge amount of scaffolding and security that allow her to function as well as she does.

Mom thought dad would be OK when he seemed a little less disoriented than your DW (they were still routinely traveling between their homes in MD and FL) when she attended a family funeral in Boston. Their neighbors, who both have experience with dementia, visited daily and had him over for dinner nightly. He still crashed and burned— pictures off the wall, lamps on the floor, glass everywhere and dad insisting there was a dead guy in the garage.

In your shoes, I'd look for an AL respite situation and tell her a fiblet along the lines of her doctor wanting her to get some PT for a time. If you really think it'll be OK, give it a dry run. You go to a hotel for a couple days and let the kids check in according to your original plan.

HB

Artworker · October 10

https://alzconnected.org/discussion/comment/283947#Comment_283947

I can leave her alone at home for short periods but if I'm out for an hour or so she calls wondering where I am. She gets more nervous at night so I'm worried about leaving for a couple days. I think one of the kids could stay a the night with her but they'd have to stay with her during the day as well and that's a lot to ask of them. I appreciate the suggestions - I will have to figure out a schedule that might work for the kids - maybe stay over and stop in a couple times a day and just give it a go

Emily 123 · October 10

Yes—Go see your parents but arrange for the kids to stay with her full time. It doesn't sound like she can navigate without the hourly support you're supplying-you might not be aware of how much having someone physically present keeps her on track. Not having that opens the door for her to get into trouble and not be able to rescue herself. It only takes a few minutes to wander off in search of something and not be able to recognize where they are.

Maru · October 10

My DH has reached the stage where I know that I cannot leave him alone for longer than about 30 minutes…and even that is a risk. Travel would be very disorienting for him. ( We tried that 18 months ago). What I am saying is that is seems that you are in that same spot now. You fly out to see your parents and get someone to stay with your DW while you are gone…full time, or place her in a respite care facility for a couple of days. I am sorry that you have to make these tough decisions.

MN Chickadee · October 11

I would explore care during the day. Eventually one of your parents will need you without warning and you will be glad to have some structure in place at home for her care. Adult daycare was a great option for us. Mom started twice a week and then went to 5 full days a week. Call it a coffee club or similar at first. We told mom she was "volunteering at the senior center" since that fit her personality. The staff are trained in dementia and good at answering those repetitive questions, redirecting the person and keeping them busy. This ate up the day time hours so that there were much fewer for us to cover with family. You could look into short term respite. Some memory care facilities offer it, though usually there is a minimum of like a week. This is likely to be the hardest on her though, very disorienting. Would a therapeutic fib work to have someone in the home? A student who needs hours for their "nursing degree" or a "friend down on hard times we are going to pay her to help us out" type of thing?

Victoriaredux · October 12

You are at a tough portion of the program, not that much of it is easy. She still sounds and reacts most of the time like she was, but how she reacts to changes of location and people around her tell you more about her baseline.

I think you are counting on her still having reserves that can provide her with memory, logic, visual identifiers that sadly just aren't there anymore.

Absolutely you should go see your folks at their ages without worrying you will be called back by your children, or the police , and this will give you a chance to try an agency or a respite home near you.

It just takes a minute to wander into traffic, drink a cleaning solution,start a fire or get hurt and not know how to get help. Don't risk your trip - please look into 24/7 care for her while you are gone .

Traveling with DW and ALZ

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