JOAN’S BLOG – MONDAY/TUESDAY, NOVEMBER 17/18, 2008 – TRAVELING WITH AN AD SPOUSE

With Thanksgiving fast approaching, I thought this would be a good time to update my helpful, handy little travel guide for those of you whose spouses are able to travel. I first published this blog over a year ago, but have since added to it, as new information and suggestions became available to me. We have had so many new members join in this last year – I hope new and older members will benefit from it.

Traveling with an AD spouse can be dreadfully stressful. Road trips bring their own particular brand of stress, but in this blog, I will be discussing air travel (which can be a nightmare when you DON’T have AD) and the problems being “off routine” can cause for your spouse.

The issues that cause problems for your AD spouse when traveling are:

1.Change in routine = anxiety = possible impulsive outbursts
2. Too much outside stimuli (crowds, security lines, directions and orders from security people)
3.Possibility of getting lost
4. Their stress, anxiety, and confusion could lead to an argument with TSA personnel. You do NOT want your spouse to get into a confrontation with these guys. They don’t like it, and you both could end up detained in “airport jail”.
In order to avoid problems, and make the trip as smooth as possible, there are three major rules to follow:
1.Be prepared
2.Be prepared
3.Be prepared

• BEFORE you leave for the airport, fill a small plastic zip-lock bag with the items from both of your pockets, around your necks, and on your wrists that will set off the metal detector. Keep it in your travel bag if you are a man; pocketbook if you are a woman. Sid is a “beeper”. Everything he wears and puts in his pockets, from his watch to his loose change, sets off the metal detector.

• Buy an ID holder that hangs from your neck on a cord. Before we bought these handy items, Sid used to have to dig into his pockets, find his wallet, find his ID, all taking up time, and making him anxious.

• YOU keep all of the travel documents – tickets, boarding passes, car rental confirmation, hotel confirmation, important phone numbers – in an easily accessible section in your travel bag or pocketbook- hand your spouse their boarding pass only when needed to get through security, and then take it back.

• YOU keep track of all of your spouse’s items that go into the plastic box that goes through the X-ray machine. The one time I didn’t do it, Sid was convinced he lost his ID badge after we were already seated in the gate waiting area. I ended up having to go back to security, causing an uproar when they couldn’t find his badge. Turned out he had it with him, but had forgotten where he put it.  

• Prepare your spouse ahead of time, reminding him/her right up to the time it’s your turn to go through security – DO NOT ARGUE WITH TSA. Are you wondering why I know about this? You guessed it. Sid had a money clip that was equipped with a small hidden pointy nail file. We always put it into the suitcase that was being checked, but this time, we both forgot to pack it. The security guard confiscated it, and Sid insisted that he had always been allowed to carry it on the plane. He was giving the guard a hard time. He had, of course, forgotten that we always put it into the checked luggage. I had to take the guard aside, explain Sid’s AD, and ask him to please be understanding, as in, PLEASE don’t throw us in the “detention room” . He was nice about it, and let us through. He kept the money clip, however.
• Consider a Wheelchair -Many of your spouses need one anyway, but even if they do not, it is an excellent method of avoiding losing them, and you will have an attendant with you to circumvent the lines and whisk you through security easily.
• Alzheimer’s Card –These are little business size cards that you can get from the Alzheimer’s Association or you can make your own on your computer.  If you can sense trouble coming from your spouse, hand the card to the guard (flight attendant, passenger, etc.). There are many variations, but the basic wording is “My companion has Alzheimer’s Disease. Please be patient with his/her behavior.”
• Doctor’s Letter – One of our members, Bob Renshaw, shared this letter with us that his wife’s neurologist wrote for him to take whenever he traveled. See end of blog for full text of letter.

• Safe Return – Register your spouse, even if you are not traveling. I’m sure most of you are familiar with it, but for those who are not – It is a national registry of Alzheimer patients. When you register, your spouse is sent a bracelet similar to “Medic Alert”. It contains their name, diagnosis, and phone numbers where you can be reached, in case they get lost. This is a MUST in an airport.  

• Now, let’s say you manage to land at your destination without incident, and make it to your hotel. Any change in routine can be upsetting  and confusing to someone with AD. I always tell Sid ahead of time, where we will be going, who will be there, and what conversations may come up that could “set him off”. I usually sit with him, and nudge him if he’s getting agitated or rambling on without end.

As you know, we are going to my sister’s house in freezing Chicago for Thanksgiving. I will have everything written out for Sid before we leave the house – where we are parking the car; the time of the flight; that I will call, a day in advance, the car service my sister hired to pick us up; where we will be sleeping in her house; who will be there; who will be home on which days; and who will be visiting each day. Every morning when we awake, I know he will ask me what we are doing that day and who will be home, which I will tell him. This SHOULD keep things running smoothly.I do expect that Rufus, the new Labrador Retriever puppy, will keep Sid happy and occupied.

See below for the physician’s travel letter. This one mentions “Aphasia”, but your physician can, of course, make it specific to your spouse:

Department of Neurology
Phipps 126 Neurology,
600 North Wolfe Street
Baltimore, MD  21287
(410) 614-2381, (410) 614-2379
(410) 1614-9807 FAX 
April 22, 2008
To Whom It May Concern:
Mrs. “Jones” is under my professional care in the Neurology Department of Johns Hopkins Hospital.  She has been diagnosed with Primary Progressive Aphasia.  Due to this dementia, she has considerable difficulty expressing herself and may not be able to understand and follow directions.  She may become confused in unfamiliar situations.  She functions well with the assistance of her husband, “John Jones”.  It is important that they not be separated as she depends upon him for direction and guidance.
Any special consideration that can be extended such as pre-boarding or understanding during the screening process will be helpful.
Sincerely,

Argye Elizabeth Hillis, MD

Please post comments, tips, and suggestions under the new Message Board Topic: Travel tips and suggestions

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