Traveling with memory issues

I do not hesitate to get the wheelchair service. It helps me tremendously!

Dear @medott

The advice above has all been great. Not knowing more details, I am assuming that you are flying to your out of state location and that you husband has moderate memory loss. I would say:'
- You are right to worry about the impact of all that is involved in a trip. Of course that needs to be weighed against the joy that he may get from the family time. My objective has been to maximize joyful experiences, but not at any cost. I'd take your cues from how much active engagement he handles well right now at home, and what confuses or unsettles him.

- Flying. By alerting the airline of his disability you should be able to get a an aide with a wheelchair to take you two from the check in area, through security, and to the gate or airplane door. This make a HUGE difference. Along the way you can ask them to stop at the restroom (ideally a family or all generation room, which they will know the location of); there, they will stay with your stuff while you go in with your husband. You can ask them to stop and they will watch your husband and stuff while you buy water and food if needed. ( BTW always either take a water bottle to fill or buy one. Managing open water cups on the airplane is often a disaster.) Please note that depending on on the airport this can sometimes take time, so allow another 20-30 minutes in case you have to wait for that at the gate. If by any chance you do not get this service. There is TSA cares, which is a service that has a TSA person escort you through the security checkpoint (which is a particular form of hell with a person with dementia). Here is a link to the online form you can send to set this up https://www.tsa.gov/contact-center/form/cares. You can also call 855) 787-2227 if your flight is within 3 days. Other helpful tip. Let the flight attendant at the door know that your husband has the condition, so they are aware.

Him going to the bathroom during a flight can super stressful. Timing. How many people are in line. The strange layouts and the way things work in those bathrooms. If he is fully independent in toileting I would still go to make sure he is familiarized with how to get things done there. If he needs help with toiling it is more complicated. Those bathrooms are SMALL. In some cases I we were both able to fit in there. Where that is not possible, you can alert the flight attendants and they will block one of the bathrooms off so that you two can use it with the door open.

- For my husband each new unfamiliar stay surrounding was unsettling. This has a couple of impacts. There is a mental processing load that you need to factor in when thinking about how much you can do while there. Also, long before he had real incontinence issues, he had small accidents when away from home because he was confused about where the bathroom was in a hotel room or friend's house, when we were staying there. Be prepared for that -- incontinence briefs, for example. Extra pants, extra pajama pants.

- How much to do. As others have advised, I would be conservative about the activity load, even things that he really likes. 50% might be a good target.

- Preparing people for communicating with him effectively and comfortably can make a big difference. Here are some things that I shared with another poster on this site.

One of the best things I got early in this process was a one-pager from the Alzheimer's Association with communication rules. Alzheimer's Association Compassionate Communication San Diego has a good one. https://www.alzsd.org/wp-content/uploads/2017/11/COMMUNICATION-Compassionate-Communication.pdf

Many people who are trying to be nice think that the polite and caring thing to do is to ask the person questions. That creates stress, of course. So, I tell people to talk at my husband , i.e., tell stories, describe recent activities, talk about shared experiences (without ever asking if he remembers those things).

I also ask them to please look at him as well as at others in the group, so he has signals that he is being included.

Shaking hands or just a pat on the arm or on the shoulder can also create a warm feeling of connection.

This may not be an issue for your husband but if he is having issues with expressing himself, remind them that the level of verbal skills does not reflect what she can understand.
Encourage your relatives to really let him know that they are glad to see him, have missed him, appreciate him. The more specific they can be about things that they have appreciated about him the better. Hearing those things will evoke emotions that can be more enduring than conversations alone.

Have a great trip!

@nmrcdigman

I was interested by the little detail you shared about how his longstanding self-centeredness play out as his needs grow. My husband has not been this way but I have seen it in friends and in the posts by others. In your case it does not seem extreme but for some people it results in a total loss of quality of life, as the family caregiver is impeded from getting any help by the family member who refuses to have anyone else help. All the best to you. And I hope that you can set boundaries with your husband if needed for your health and happiness.

I will mention one thing that may be helpful. At an appointment with his cardiologist, the doctor talked to my husband about what were the important things he had to do remain in good health. He also included that my husband had to watch out for my health and well being; that, in addition to doing things together, it was important that I got time to do things I needed to do and liked to do. Months passed and my husband's verbal skills continued to decline; he was often unable to finish sentences. I had a medical emergency and had had to put him in a memory care facility for a time. He handled it well but when he came home, he tearfully shared with me that he had felt angry toward me about it. I apologized for what he had gone through and assured him that he was home and we were together again. And then, in that same conversation, after a pause he said with real emphasis, "But it is also important that you do the things you need to do. The things you like to do". That was such an amazing expression of his continued insight and generous spirit, but I think its recognition and expression was aided by the words of a trusted outside person. Sometimes those voices have a big impact..