Hi all, finally got back to these forums and see some things I can contribute. I'm a caregiver for my husband, who has ALS-FTD.
Libbylu, may i suggest that you keep trying. I called or met with 3 or 4 attorneys before I found one who seemed like he knew all the issues we faced. (My chiro suggested I contact his atty, who was the atty that all the local judges used for elder care atty work; she was too busy so sent me to one she trusted. So yeah, ask around.)
RE: the ALS doc/nurse/clinic - do you have any alternatives? are there any FTD specialists around you? (I actually chose the doctor who was known to be an expert on ALS+FTD (we heard ALS, I read up, and suspected FTD) ... but he was a good actor and so they said no, he doesn't have FTD. Luckily, he didn't like the drive to that clinic so we went to another and they spotted FTD immediately! I had typed a list with 3 columns: first column was some action, like how he dresses; second column was how he used to do it; third column was how he does it now. That helped a lot. And I know it's near impossible, but I agree with removing your feelings from any descriptions about what's going on. Just the facts.)
I know it's crazy-making. But please don't give up on YOU.
3Grandboys, we did the big trip back to family in England. And had just gone through the no-more-driving. So I had to get a driver so I didn't have to watch him AND drive on the left. Phew. But the airplane ... plan, plan, plan. Check with different airlines, some have better services than others. American Airlines is known to be pretty good with disabilities, even a service to help, if you need extra hands. Get and print and fill out that TSA form (I wrote that my husband wasn't good about waiting in lines on the small form, then paper-clipped to the passport.) You can also print out (about business card sized) notes saying something like, 'my loved one has an Alzheimer's-like illness, thank you for your patience' in case he happens to say inappropriate things, say on the airplane. It's also not a bad idea to have a doctor's letter with you. And of course any medicines with you onboard.
Before you book the trip date and time, consider good/bad times of day for your husband. Mine does better in the morning and gets VERY worried about being late. So we took an early morning flight, but decided we'd take the stay and park deal at an airport hotel, rather than risk a freeway delay making us late. Probably not something you need to think about in Tucson, but the point being you should think about the day, time of day, delays, etc. and figure out the best schedule for you. Try to anticipate his behavioral triggers and work around them.
Not sure about your husband, but mine is definitely into the routine, and his doctor says that's best - to keep routines routine. So the trip will obviously change that, but maybe you can work in things that feel similar, for the routine-comfort? (Think of kids who get fussy when the meals/naps are not in the usual order.) Maybe music, a walk, a special tea, whatever, to make things feel "normal" ...
When you get there, think about the size of gatherings and noise levels. My husband absolutely LOVED to see everybody but he had trouble with all the excitement, too many voices, even sitting next to a too-loud radio caused him to shut down. I was stunned when I turned it way, way down and he started participating again!
Whoever said something along the lines of let go of the anger, I totally agree. Before we knew what this was, we were ALWAYS mad in this house. Once we knew, and then we finally accepted that it was FTD (and somewhat ALS) that was causing all the odd/different behaviors, we could forgive and let go. I read somewhere that a person with dementia has one important thing all the way to the end: feelings. So we try, the best we can each day, to make him feel good, happy, special. And when he has an outburst, I don't always check myself, but I try. I imagine how the best nurse in the world, or the best nanny, would react. She'd be kind and gentle and look into his eyes and try to understand what the problem was. And she'd do her best to make it better. And if that didn't work, she'd change the subject.
We're one year in to this horrible, terrible double diagnosis. I've felt all the sorrow, anger, frustration, you name it, that others have mentioned here. I've gotten through a few of them and am sure we have a lot more to go through ...