Travel and confusion

Trgdm

My DW of 48 years seems to get more agitated and confused when we are away from home. She is mid to late stages of Alzheimer's. We are supposed to go to the coast with our adult children and their families, but I am beginning to have second thoughts. Between the new location and chaotic nature of a large family gathering I'm thinking it best to stay home. The children would understand. Thoughts!

Jazzma

You don't mention how long a trip it is to the coast, or how you would travel, but it does seem likely that the combination of unfamiliar surroundings and lots of people could be very hard for her. If it's a short trip, perhaps you could go for one day to try it out? My experience trying to travel with my DH in his later stages wasn't good, but I think other people have been able to make it work.

trottingalong

You know better than anyone how this may affect her. My husband gets stressed with change of any kind. Even leaving the house for a doctor appt. will get him stressed. When he’s stressed, he’s more confused which leads to agitation. He can handle one or two people coming over for a brief amount of time. But never a large group, family or not. We can no longer drive to see our children and grandchildren 6 hours away. Last time we went the drive was not pleasant, and once we got there he just wanted to go home. It wasn’t fun for me. Mid to late stage, I would personally choose to stay home.

Chris20cm

I have a similar situation, with plans to visit DW's relatives 500 miles away. I decided to cancel. We recently traveled half that distance to a wedding, one of our children, and all the way home she was asking where we had been and who was there. I realized that with no short term memory, it doesn't matter much to her whether we make the much longer road trip. It doesn't seem worth the effort, and the relatives involved rarely reach out to us. Canceling seems like the best for everyone, including me, selfish caregiver that I am. I just don't need the hassle right now, and neither does she.

CindyBum

As sad as it is, I’d cancel if I were you.

I tried traveling last Christmas for my DW to spend time with her large family. She enjoyed maybe an hour of the visit. We were there for 3 nights and she barely slept and the long drive was just awful and she was anxious and miserable.

l7pla1w2

That's a tough situation to decide what to do. Trust your gut. Think about what orgnization it will take to get her to the coast. Think about how confused she is at home and how that might translate to a completely unfamiliar locale. A large, raucous group might be too much for her, but having small family groups around at a time might be good for her. Quiet walks along the beach, just the two of you, might be good for both of you.

I experienced something similar last summer. DW (also 48 years then) was increasingly confused at home. But we've been going to the same summer place for 50 years. Initially it was her parents' place, and eventually we ended up owning the property.

We did go last summer, though I was mentally prepared to leave on short notice. It was a struggle to get DW's stuff organized before we traveled. She was of no help to get things set up once we arrived. She loved being there, but she was often confused about where we were. At night she would get confused finding the bathroom, which was through a door from the bedroom. We did stay about two months, but we left early at DW's request. I was pretty sure that would be her last summer there, our "On Golden Pond" summer.

We came home, and I knew she was headed for memory care, and, indeed, I placed her in April. And right now, I'm at that summer place, alone.

Timmyd

My advice: You should only choose to travel if YOU want to go. Do not base you decision on what other people want or expect of you. I know in some cases there can be pressure an expectations from other family members. This is a decision for which that type of input should be disregarded.

jfkoc

How quickly and easily can you get back home???

RetiredTeacher

It is totally a personal decision you face. We can all share our personal experiences but every person's dementia experience is different. Last summer we went RVing out of state to the Oregon Coast and I swore it was our last trip… He said he wanted to RV again and I missed it so we went closer to home for a shorter duration. I guess I was hoping it would go better than it did. I keep wanting to make things good again...way to much work, stress and not fun or joyful. I cancelled our other RV plans. Routine is better for him and so much easier for me, equaling more joy for both of us. Keeping it simple and routine for here on out…

Sadly our travel days are over...just too hard now.

SDianeL

the last trip I made with my DH stage 6 did not go well. He was miserable. He didn’t eat much the entire trip. He couldn’t watch his TV. He sat alone on the sofa not able to interact with family. I was a nervous wreck and he had major anxiety. If you decide to go, have a plan B to get back home quickly. If he’s not on anti anxiety medication I would get some prescribed before the trip. My husband was on Risperidone but it didn’t help on the trip.

tonyac2

https://alzconnected.org/discussion/comment/248157#Comment_248157

The last thing you are is selfish. You are sacrificing, laying down your life for your DW. Who cares what other people think, they don’t have a clue as to what’s going on under your roof.

Trgdm

https://alzconnected.org/discussion/comment/248160#Comment_248160

Thank you for your insight and story. For both of us the beach has a place to refresh and restore. I am hoping it will be this time as well. We are looking into memory care at this point so I feel like our stories are simular.

Trgdm

3 hour drive

LindaLouise

The last trip I took with my spouse involved a three hour flight and a five day stay at my son's home. It went well, but he did have an agitated/angry episode one evening at my son's home that took me hours to calm. In hindsight, I shudder to think what would have happened if that agitated incident had happened on the plane or on the road (we rented a car). I feel like a dodged a bullet and probably shouldn't have taken that last trip - but wasn't ready to admit to myself that life had changed that much. As someone else noted, every person with dementia is unique…

Lazuza

We're nearly 300 miles away from where my LO with Alzheimer's used to live and we have to travel back to her area by car occasionally - 8 hours!@! Can I be tangential for a moment - partially answering your question but also venting my frustration with her care providers?

The major health system here, Mass General Brigham, is pretty terrible IME. Both Mass General and Brigham and Women's turned my LO away for neurology care in the past - said they were only accepting patients referred by outside neurologists due to "clinical or research interest". (That they even came out and said that is crazy, but they did.) The wealthy self pay patients in support groups I have attended do not appear to have any difficulty with them though. (My LO is well insured but private insurance takes a back seat to self pay here, apparently).

At Mass General's smaller satellite sites (most are nowhere near us), we had an appointment cancelled by a neurologist's office at the last minute…after waiting 6 months. No reason given. We ended up with an absolutely awful, racist nurse practitioner at another one of their neurology practices in Newton Wellesley. The nastiness and incompetence with that one was intolerable. (E.g., mental status examination findings as recorded were completely inaccurate. NP claimed my LO didn't know her name or DOB when my LO provided it correctly at the appointment. Despite past syphilis testing, moron NP ordered it again telling us, "You don't know how many people from foreign countries I have caught with this disease!" When we didn't do it, at the next 5 minute appointment, she spent 4 minutes talking about how important it was "because she was born in a foreign country!!!!" - she said this multiple times in four minutes. My LO is 85 years old and has been here for nearly 60 years. I think it's more likely the NP has syphilis.)

Bottom line - to get decent care, we have no choice but to travel back to my LO's home area…and then have the nurse practitioner at a Mass General-affiliated geriatric psychiatry practice write that we are causing agitation by traveling long distances with the patient. Forgive me for a minute but HOW ABOUT YOU EFFIN PEOPLE PROVIDE DECENT NEUROLOGY CARE INSTEAD OF FOCUSING ON RESEARCH????? Because that's the real reason the patient is agitated!

To your question: People in a support group I attend said that sedating agents can be prescribed to help. (Meds were never offered to us. Aside: The support group is also MGH geriatric psychiatry affiliated and I'm sure the NP isn't writing that these wealthy people going on vacay are agitating their LOs with their travels - argh!) Ask your LO's doctor about meds. The person is often not willingly to take them, apparently. Someone in the group said they have to tuck them into a sandwich type of cookie to get their LO to take it.

Also, have you looked into respite care? Costs are more affordable in some places than others. Basic idea is that while you are away, your loved one is cared for at a place like a memory care center. There are also home care agencies that will provide in-home respite care but they can be expensive. If you have CareYaya in your area and won't be gone too long (i.e, couple of days), you may be able to find students who will stay at home with your loved one for cheaper rates than what a standard home care agency would charge. For us, it's something like $370 per 24-hours. CareYaya requires an ongoing service minimum of something like 15 to 20 hours a week though but it has been worth it for us to get time out of the house to do things.

jfkoc

3 hours? I would go and be ready to hustle back home if needed.