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Recently, in a doctor’s office, I picked up an article written in 2006 that extolled the supports given to airplane travelers needing assistance when they fly. As I read one accolade after another, I wondered why my experience when traveling with my chronically ill husband had been so different. Yes, I was provided with a wheelchair, but I was expected to push it even though I had two young children with me. Yes, they agreed to take his electric wheelchair, but only after I carefully followed the many directives and delivered it almost disemboweled. After much thought, I realized why my experience was possibly so different than those quoted in the article. The people they interviewed, who needed assistance, had all traveled alone. There was no well spouse with them that they or the airlines could look to for help.
When I discussed traveling with a disabled or ill spouse with the support groups I visited, the experiences I heard were similar. As long a well spouse was traveling with the ill person they were looked to as the main support. Whether it was just to give verbal direction to the support personnel provided or actually do − or assist − the physical transferring, the well spouse was looked to as the main and first line of support.
Some in the support group told me that they would prefer sending their spouses on an airline alone. They felt that, providing their ill spouse was verbal and could manage to direct people as to their needs, the supports they got when traveling alone were good. Many of the women and some of the men said that they were not physically strong enough to do the many transfers required in order to get someone disabled on to a plane and into their seat if the disabled person could not stand or walk at all. This was something the airline would take charge of if the well spouse weren’t there.
Others were relieved to give over the anxiety and emotional stress that comes with traveling with someone who is ill and whose needs are never ending in the limited space of an airline seat. They knew the ill spouse would be adequately taken care of by the airline. Some well spouses who were not comfortable with their partners traveling alone, but didn’t feel they were up to the task of traveling with them, preferred sending an orderly along to help their spouses. However, this involved a great deal of expense since you would have to pay the orderly and provide him with an airline seat, meals, etc.
Others felt hiring the orderly was worth it, especially if you needed to hire someone for support when you landed and to be there during your stay and trip home. Hiring someone, if you could afford it, gave you the peace of mind of knowing that your loved one had consistent good care from someone he was familiar with and who knew his needs. They felt unsure about relying on the kindness and adequacy of whoever the airline would provide you with for assistance.
Recently, based on a ruling on the rights of disabled passengers, many airlines will now allow disabled passenger to have a second seat at no extra cost for an attendant that is needed to accommodate their disability. Though some airlines are fighting this decision, others are honoring it.
However, if you accept the seat for the attendant, even if that attendant is the well spouse, be very careful of your expectation of support provided for you by the airline. It may be very limited-to-nil, since they are providing you, as the attendant, a chance to accompany the person needing help with the expectation that you will provide that assistance. It is a good idea to check with the airline as to exactly what help they will provide to you or to the attendant. Will they assist in transfers? Exactly what is the procedure to getting the ill spouse on board and into his seat? What assistance will be provided if you need to change planes, if any?
Though this new ruling will help most well spouses when they need to travel with their partners, make sure you know exactly what you will have to do if you choose to be your spouse’s attendant. Make sure you can assist your spouse with all his needs while boarding and traveling on a plane, comfortably and safely, for both yourself and your partner.
If it is not safe or you are unsure, think about hiring someone who has the strength and expertise to do the job, to accompany him. Not having to pay for that second ticket reduces the expenses of the trip considerably. Then you, the well spouse can choose how you want to get there. This free ticket for the attendant may be just the gift you both need to truly enjoy your trip.
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When one is blind one learns to use Braille to read. When one cannot walk, a wheelchair gives mobility. Sign language allows a mute person to speak and ocular implants assist in hearing when one is deaf. These are all compensatory strategies that help a person function despite his disability. But compensatory strategies are not just for physical problems. Understanding our psychological weaknesses and setting up our lives to ensure that we are not tempted to repeat our past mistakes, is as necessary as any aid to the disabled.
Well spouses have often discovered that their friends and relatives, despite their closeness to the situation, often don’t realize the tremendous emotional impact living with chronic illness has on the family. With the best intentions, suggestions, ideas and criticism are offered, based on the non-experience of those with healthy families. Even when the good intentioned get a taste of the difficulties, it is sometimes not enough for them to then identify and understand what the family of the chronically ill must face on a constant basis.
Over the past two weeks I have shared letters from a therapist and a well spouse. Both of the letters gave personal insights into the process of losing hope, how we react when that happens and some ways of coping when test scores, diagnosis and just simple repetitive behavior indicate that change for the better is impossible.
I’ve read your last few articles on psycho-neurological testing (Oct.8-22) with interest. As a therapist who has counseled couples dealing with chronic illness, I’d like to give you another perspective.
Your articles on the Neuro-Psychological Testing were right on (October 8-22). My husband underwent testing twice and your articles explained it things exactly the way they were. Besides the test, we also tried therapy.
Very often when we can’t face our big hurts or big loses we focus on the little ones. We can discuss those. We can cry over the small loses, be angry at the smaller hurts even though it may look trite and sound ridiculous to others.
Over the last two weeks we have been discussing one way in which well spouses can determine whether behavior displayed by their ill partners is caused by their illness or is a way they have chosen to act. We have focused on Psycho-Neurological testing, what it can tell us, as well as its pros and cons.
Last week I discussed a question that haunts many well spouses: not knowing if the difficult and often inappropriate behavior frequently displayed by their partners are caused by the disease and therefore not-controllable, or if the behavior is a choice the spouse makes and can therefore be changed. This doubt can be the source of much frustration and many marital disagreements. One way of alleviating this doubt is by having a psycho- neurological work up done. But that path is not so simple.
Printed from: http://www.jewishpress.com/sections/magazine/traveling-with-or-without-supports/2009/01/14/
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