Old 11-06-2014, 08:57 AM #61 (permalink)
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Default Re: FTD With ALS Advice

Any advice on traveling on an airplane with my husband who has FTD-ALS? first trip in a long time. He wants the relatives to see him 'for the last time.' (In his words). so sad. I keep reading how routine is best and this trip back east will be filled with activity, people, noise, new experiences. Thanks in advance.
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Old 11-06-2014, 09:18 AM #62 (permalink)
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Default Re: FTD With ALS Advice

You will be flying? Any chance of someone going with you ? ( 2 people makes it much easier). Non stop if remotely possible. If not direct with stops. Try not to have to change planes. Don't fly at superbusy times. Can you do an early morning flight? In my experience less chance of delay. Is he prone to agitation? Consider medication for the flight. There is a very small form you can download from the TSA site to hand to the screener where you can write about a medical condition if you think TSA security might be hard. Use a wheelchair.

Once there you are right that routine will be disrupted. Can you plan a day to recover? Also you are going to have to be the strong one and limit activities as necessary. Explain to family and see if they can help you plan so not overwhelming too much. People tolerate differently though. My mom was fairly calm and she traveled ok. I don't think she enjoyed big gatherings much as she got overwhelmed but she did not melt down, not even at my dad's funeral/ wake

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Old 11-06-2014, 09:31 AM #63 (permalink)
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Default Re: FTD With ALS Advice

3 grand boys, we flew for the first time since he has really progressed, and it was a wonderful trip. Took his power wheelchair, so talked to the facilities supervisor who met us at the gate and showed him how to turn the main fuse off, etc. We flew from a small airport rather than a metro airport which helped! Because he was in his power wheelchair, didn't have to take off shoes, belt, etc. the most difficult thing was on MY end. Had to hand carry a bag with medicines, a bag with the charger for the WC and a bag with computers, plus my purse! Pack as light as you can on those hand carry ons! I ached for 2 days from the standing, carrying. Also, he will get early boarding. Go to the desk at the get and get an early boarding pass for disability. Good luck. It should be fine! ( we always carry his disability letter but have never had to use it.)
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Old 11-06-2014, 09:32 AM #64 (permalink)
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Default Re: FTD With ALS Advice

Should have said go to the desk at the gate- This auto spell check is a pain!
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Old 11-06-2014, 09:52 AM #65 (permalink)
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Default Re: FTD With ALS Advice

Forgot to add if you can't get someone to make the trip with you find out if you can get someone to go to the gate with you and meet you at the arrival gate. I have done the first part ( since 9/11). Just went with the people who were traveling to the check in desk and was given a pass that got me through security with the usual id checks and scan. I have not tried it on the arrival end except for unaccompanied minor but you could ask. I think help is a bigger deal on the departure end because of security and the waiting around

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Old 11-06-2014, 02:07 PM #66 (permalink)
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Default Re: FTD With ALS Advice

Nikki gives some excellent points there.

I never travelled with Chris but I know that he didn't tolerate feeling rushed.

cheerleader lots of great general points there from you too, after your very recent experience to draw on. I get confused I'm afraid about the exact ins and outs of each person here, does your husband have FTD involvement?
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Old 11-06-2014, 02:07 PM #67 (permalink)
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can't believe that post went to mod
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Old 11-07-2014, 07:35 PM #68 (permalink)
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Default Re: FTD With ALS Advice

Dear Travelbugg, thank you for sharing your similar horror story. I am in a bit of a bind, in that my Husband is also my Financial Advisor. I have talked to an Elder Care Attorney, and he has explained that my Husband would be dragged in to court and potentially lose his job and medical benefits. I am Leary to do that...have to protect myself financially. My Husband has the capabilities to move money around.; I am waiting for a "good" time to talk about showing me the statements so that I believe he is acting in good faith. I have all legals in place, however, not receiving much support from family and ALS Clinic personnel. So frustrating to watch the man you married drift away. Instead of loving him, I am working covertly to get things in order So that I have the means to live after he is gone. I HATE THIS DISEASE! I have gone from a loving, loyal wife to a crazy, paranoid mess. I have drafted a letter to dismiss Personal Assistant on my own, before an Attorney becomes involved. Tired of not doing what is right and doing whatever it is that doesn't set my Hubby off! This is crazy...Hate every aspect of this...
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Old 11-07-2014, 09:33 PM #69 (permalink)
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Default Re: FTD With ALS Advice

Tillie, no my hubby doesn't have FTD- so maybe I shouldn't have responded. Do think that some general things apply because all have ALS, but realize there are complications that we haven't had to face. But it is nice to know that an illness like this gives you perks like early boarding, not going through shoe removal, etc.
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Old 11-08-2014, 04:28 AM #70 (permalink)
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cheerleader, you gave some excellent advice!

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Old 11-08-2014, 04:30 AM #71 (permalink)
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Default Re: FTD With ALS Advice

I truly can never work out what hits that mod alarm ... a bit will come through later which was the start of what follows ...

It started with something about thanking gooseberry for the excellent advice ...

I only asked as I have to admit I need to use Max doc to remember all about where everyone sits in the huge spectrum that is ALS, let alone +/- FTD.

What I found difficult in the early days was sorting out what was normal anger, fear, denial etc etc that every PALS goes through and was there something more going on.

It was when there were patterns of behaviour that were not the Chris I had known that emerged ... Always however, I had to remember that not everything that went on was FTD, as he was still a person, with feelings, trying to deal with this monster and how the world/family around him dealt with it.

But always, the more I could plan things and be as prepared as possible (like your wonderful trip preparation), would help greatly. Only leaves the behavioural stuff to deal with
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Old 11-08-2014, 04:30 AM #72 (permalink)
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ok double mod alarm, hopefully Nikki will just post them both through

stay tuned ...
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Old 11-08-2014, 04:51 AM #73 (permalink)
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Default Re: FTD With ALS Advice

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 ...
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Old 11-08-2014, 08:28 AM #74 (permalink)
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Default Re: FTD With ALS Advice

THANK you Keri and everyone else. We are now a month into the diagnosis of FTD-ALS. My husband cries about dying and it breaks my heart. I am so less angry with the personality changes and how he completely messed up whatever chores or repairs he tried to do in the past year. The diagnosis explains so much! I am so exhausted with advocating for his medical care, but proud how much I have accomplished. He had 8 appointments in the past 2 weeks (I took a week off of work) and one more appointment next week which puts us on the path of the best care that Tucson has to offer. Thanks to all of you who suggested seeing a lawyer, so was able to get that done. I appreciate all tips and all advice. And yes, we are taking the first flights available in the mornings. I will look into the TSA form and print up a card as my husband is so very impatient and sighs with impatience all the time (like if I must stop at a red light). I feel very sensitive to his moods, of course!
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Old 11-08-2014, 12:27 PM #75 (permalink)
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Default Re: FTD With ALS Advice

If he is very impatient as you said look into boarding last not first. You know how long it takes to board and he might get agitated? Of course if you are southwest probably won't work with no assigned seats unless you could get the gate agent to put reserved signs on seats for you
Other airlines though it would work. Better to be moving around the gate area than sitting waiting
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