Travelling with someone who has fronto-temporal degeneration is…..well let’s just say it’s interesting.
The FTD “Time-Bandit” robs your loved one of any perception of time, social propriety and filters. Frontotemporal Degeneration steals many things. The ability to control one’s own environment for one. The abilities of patient and tolerance too. Any consideration for anyone else is lost to the thief.
Once again, the issue of lack of insight comes up. Your loved one will almost certainly not realize that much is different with him/her. So, when you embark on some kind of trip to anywhere other than to visit understanding relatives, you will need to be well-prepared. Although you will try to plan with meticulous, military precision, your loved one will almost certainly not cooperate at the very moment when you need them to.
You may, as I did, plan ‘one last big trip’ once you start to realize that there is now no going back. Things will never be better than they are today. Whenever you make that decision, you will almost certainly wish you had done it sooner. There is no “Time Tunnel”.
Travelling with your 54-year old boy or girl with FTD will bring experiences like you have never had before. If you have children, think about the preparation and planning that goes in to taking them on a trip. If your children are grown, it will bring back memories of getting ready for a family vacation. That is where the similarity ends.
- Packing clothes, toiletries and other necessities takes a while. Because they think they can still do it, your FTD’er will remove what you have packed as soon as your back is turned. They will place things in the suitcase that don’t need to go (winter clothing or kitchen utensils for example).
- At the airport, prompting is key. Your loved one will be completely out of their element. And that’s just the start.
- Now you have to get them through check-in. Watch for them picking up someone else’s bag. They have no clue which one is theirs.
- To everyone else, your companion looks perfectly normal. So they will ask them questions – “Did you pack your bag yourself?” “What is the purpose of your trip?”. Your partner, if they have aphasia (no speech) may just stand there staring at the questioner, raising suspicion. They make think they are drunk or on drugs. Frontotemporal degeneration is a little-known condition to most people.
- There are business-type cards that you can obtain or make. Mine said: “My companion has a disease that affects his memory and speech. Thank you for your patience”. This proves invaluable as you don’t actually have to say anything your partner can hear, but everyone knows what’s going on.
- Your loved one may ask you “Where are we going?”over and over and over again.
- They will expect to hold their own passport and boarding pass. That old independence thing again. I found that giving him an old, expired passport and a duplicate boarding pass worked well. It’s just the having of them that’s important. They don’t care that people need to see them. Just need to feel a little control. The FTD robber will take care of that.
- They will require direction and prompting to remove shoes, jackets, belts etc at Security. And then again to put them back on. Try to have slip-on shoes and no belt or jacket if possible.
- You may discover things in their pockets that you did not know they had.
- The TSA people are generally very understanding and patient. The Scattergraph (X-Ray machine) can be a challenge as you need to follow directions to get it right – “Face this way, raise your arms over your head”. Your partner may not be able to do that. The TSA people are happy to use the wand if your partner doesn’t get it. or a patdown, which is a little more difficult to explain to him/her.
- The next challenge may be the bathroom. You can’t go in the Mens’ Room, he can’t go in the Women’s. He can’t go in the Family one because there are other people’s kids in there. You can’t go in the Women’s and take the chance that he might get out first and wander off & get lost. So you have to wait outside the Men’s room for him. Then you have to wait until you’re on the plane and he is safely in his seat and can’t go anywhere before you get to go yourself.
- If you have been encouraging independence as much as possible up to this point, this may now come back to bite you in the behind. He or she may now decide to go for a walk and check out the stores/bars/restaurants within the terminal. Persuading them otherwise may be impossible. So, you will have to drag your carry-on and follow them around. Or you could do what I did and watch from a distance, keeping them in sight. While you’re apologizing to the other people whose feet have been trampled or run over.
- There may be a tantrum and storming off when it is suggested they shouldn’t do certain things.
- The difference between a seven-year old and your spouse with FTD is that a seven year old can learn something when you correct them. Your spouse will get all indignant and complain you are controlling their world (which you are). But they will continue the risky behaviors or to upset people who don’t understand (too bad, I say!). Because they will not understand why they can’t. They have few inhibitions or social filters now. They will just do whatever they like.
Once you arrive at your destination, the confusion continues. It’s a strange place. They have no idea where they are or how to get to anywhere else. That feeling of losing control is now 100 times worse. If they are obsessive or compulsive or both, they will try to control their environment as much as possible. OCD is FTD’s little brother. At home, my husband would remove his clothes from the closet and drawers and place them in little piles on the bed. Then later, he would return them. When on vacation, he did exactly the same thing. Every day. Sometimes twice a day. It was a comfort mechanism. A familiar routine that he could hold on to.
In our case, we visited an old friend who just happens to live in the Caribbean. It was two planes, a taxi and a ferryboat ride to get to his island, but we made it. I am so happy that my husband was able to connect with his old friend. Even though it was stressful for him, he enjoyed the time we spent there. He had no concept of how far away it was, or how long we were there. Or even why actually. In rare moments, his FTD capitulated to me and was he cooperative and loving for a while.
Some people might think it’s not worth it. Travelling with FTD or any kind of cognitive change or dementia is stressful, tiring, scary and emotional. For all parties concerned. It was worth it to me to see my husband’s face as he spent time sailing with his old friend. It was worth it to see him ‘being normal’, hanging out on a boat, enjoying life. It was worth it to me to make those memories which I now hold alone. I will treasure those forever.
It was so, so worth it.