Travel - Long drive for short visit

wkelser

My mother has moderate Alzheimer's and is 81 years old. She has incontinence issues and shuffles when she walks (is in PT for this now) but otherwise is in pretty good health. My father passed away 1 year and 1 month ago, which was hard on my mother at the time of his passing but only becomes an issue for her when she is reminded that he is gone. Now for my question, Mother's sister is turning 75 and all of mother's siblings will be together to celebrate. The celebration is in Indiana... we live in Texas. My sister, who lives with her, and myself are the people responsible legally, financially and medically for mother. The problem comes in logistics for travel. It is a 2 to 2 1/2 day drive to Indiana for a 1 1/2 day stay for the party and to visit family before driving the 2 to 2 1/2 days home. We are concerned about mother doing the 16 hour drive and what it might do to her health as well as if it can cause/contribute to a decline in her mental condition.
We have the option of staying home and "attending" the party, via ZOOM or another online platform but wonder, if it is the last opportunity for her to go visit her siblings might the trip be worth it.
Please let me know your opinion and if you would venture out if it were you or choose the alternate "party at home" option.
Thank you in advance for your input and advice.

M1

What a tough choice. Any chance you could shorten the trip by flying rather than driving? It might be worth the expense if it makes it more feasible for her.

I take it that she still recognizes family members? That should play into your decision making. Also, i wouldn't hold out big hopes that zoom would mean much- but you could try this out ahead of time and see how she does on a test run. Ditto with how she responds to a crowded setting.

My partner and I went to her sixtieth high school reunion in the fall of 2019, when she was stage 3-4, and it was great-the last time we saw her one surviving sister. She is stage 5-6 now and there's no way i would travel with her now. But she has forgotten most family at this point.

wkelser

Thank you for your comment, M1. My mother can recite the names of her sisters and brother but doesn't know my name, her daughter, without a prompt. I am not sure she will know them on sight. Trying a test run, online meeting might be a great way to go.

We did look at flying, and that might be an option. I will discuss that further with my sister.

I appreciate your insight.

solerdr

wkeiser,

Good morning and I am sorry that you and your family are going through this experience.

My father had Alzheimer's for 20+ years. I took him to his 60th High School Reunion, which was only a five-hour drive. My father enjoyed each event in the moment; however, at the end of the day, I am talking that same night, he did not remember any of the day's events. Additionally, when we returned home, he did not remember any part of our trip and I was exhausted.

Maybe ask yourself the following:

1) will my mother remember the trip in the long run?

2) what are the long-term benefits vs. costs? Consider your mental and emotional health as well

3) are we or would we be doing the trip for our mother, or are we doing this to make us feel better; or not feel bad or guilty? Often times we as caregivers do things for our loved ones so we do not feel bad, or guilty.

Yes, this may be the last time your mother sees her siblings, provided her siblings do not come to visit; however, will she remember the visit? And if so, for how long?

Additionally, you will be taking your mother away from a familiar place, her home, and when we traveled with my father new places confused him even more and caused more stress and agitation on him and us.

Sometimes we as caregivers have to decide what things/events to have our loved ones attend and which ones to forgo. Even if we do not take our loved ones to an event, it does not mean we do not love them; rather, it means we love them and NOT taking them is also an act of love, for sometimes NOT taking them is what is best for them.

If your mother does not go, she is not going to know any differently, only you all will know.

For what it is worth, if my father's high school reunion was a 2 to 2.5-day trip, I WOULD NOT have taken him.

I wish you the best.

May God's light guide your day, and His spirit bring you peace.

harshedbuzz

@wkelser

A couple of thoughts.

Given the incontinence and mobility issues, any kind of travel is going to be challenging.

In dementia, memory is FILO so it makes sense that she can recall people from her childhood more clearly than those who came into her life later. That said, she could be time-traveling in her mind and not recognize her siblings at their current ages which could be upsetting to everyone.

Most PWD seem to suffer a further regression which removed from their usual surroundings and routines. Often families try to get bucket list trips in when their LO is stage 5-ish only to find the PWD drops from their previous baseline and needs much more attention and assistance.

The other piece is that around stage 5/6, many PWD no longer enjoy gatherings as they can't follow conversations in which multiple people are participating. This can be subtle. When dad was more stage 5 we had dinner for him at a restaurant with 6 people in July. By February of the next year, he was more stage 6 and became agitated and uncomfortable with the same group. By Christmas, in his home, he was cycling through disengagement and hostility.

I feel like that ship has probably sailed for your mom. If you do want to trial it, I would do an overnight in a hotel about an hour away and see how that goes.

HB

wkelser

solerdr & harshedbuzz

Thank you for your input. I really appreciate the insight and wisdom you shared from your experience with the topic of travel. This journey is a difficult one, but it helps to know that we are not traveling it alone.

I will share the information you shared with my sister as we formulate our plan and decide whether to go forward with this trip.

mommyandme (m&m)

I have this feeling that you’ll regret taking her. I imagine the challenges will far outweigh any joy.

I was having a gathering at my home with all mom’s grandchildren and a couple great grandchildren. I was excited to have everyone in one house. I packed mom up and brought her over, mom lived directly behind me, we shared a backyard fence, I lived with mom. Keep in mind, my travel was in a wheelchair just around the block. I felt so good that it was a success… for a moment. Mom didn’t know anyone, I could tell she was a bit stressed. Yet, I had her sitting amongst family outside in the beautiful weather, still feeling good about MY achievement. Until, I heard the adult grandchildren ( who didn’t really know how to talk to her or be around her) giggling a little that she’d fallen asleep. Nope she wasn’t asleep, she was having a syncope episode and was completely out of it. Fortunately, I was used to this happening at times throughout our journey, often if she was stressed. I had to bring her back to us and take her home. (Bringing her back is a story in itself)

Most of my sadness was from feeling very sorry for doing that TO mom and also having the grandkids think she might die right in front of them. We didn’t need an ambulance as a couple of them suggested. sooo yeh…It was all about me in the end, not what was in her best interest. The grandkids eventually came over to visit with her, way better. I never did anything like that again. She stayed in the comfort of her own space for the rest of her life.

Just my two cents. I hope you find the solution that works for most of you and especially for your mom.

wkelser

mommy&me, thank you for your comment and the wisdom you shared through your experience. We (my sister and I) have decided the best course of action is to stay home and through a party for mom's sisters in a setting comfortable to her. We will have an interactive streaming session set up so that Mom can see her sisters and brother as well as the cousins and various family members who are able to attend in Indiana. That will give us the opportunity to interact with the family but control the noise level, crowd and activities that mom is a part of.

I appreciate the comments of everyone on this conversation stream and credit you all with helping us have clarity as we made a hard decision for our mom.

wkelser

Today we had the online party with my mother's sisters and their families in Indiana, from our home in Texas. It went swimmingly! Thank you to everyone who chimed in to help us make the difficult decision that turned out to be a wonderful experience.

Have a wonderful weekend and take care of yourselves as well as your loved ones!

Wendy Kelso

M1

Glad to hear the good update and that a good time was had by all!

mommyandme (m&m)

Thank you for this update! So glad things went so well!

jfkoc

What a great update...thank you!