Flying down to TV w sick husband? Thoughts?

[Billyg]

Hi, I am debating whether to fly down to our home in TV this winter. My hubs has a quickly progressing Parkinson's w Dementia. Our latest challenge is that his legs are so weak that he will be wheelchair bound soon. He really wants to come down and there is no place I'd rather be but.....I worry about how to manage the travel and then finding a caregiver and then what if the decline continues at this quick pace? I have no support systems in TV. Has anyone else been through a similar dilemma ?
Thanks for your input,
BG

[SanFranDianne]

Send me a PM with your phone number and email, and I will ask my friend (whose husband might be in a similar position) to contact you.

[deano_hoosier]

Likewise, let me know through pm some contact info. My twin brother just completed his fight with PD and his wife faced somewhat similar decisions regarding travel on their last trip out of Florida. I think she could help you through your thought process.

[graciegirl]

I have a dear friend whose husband had a quickly declining form of Parkinsons but she had her sister and her mother living here and the support of her very caring church community. I remember the Parkinson community was very helpful too.


If you email me I can send your post on to her. She is a wonderful woman who we all treasure.


I will keep you both in my prayers. Feel free to stop by anytime.

[Madelaine Amee]

Hi, I am debating whether to fly down to our home in TV this winter. My hubs has a quickly progressing Parkinson's w Dementia. Our latest challenge is that his legs are so weak that he will be wheelchair bound soon. He really wants to come down and there is no place I'd rather be but.....I worry about how to manage the travel and then finding a caregiver and then what if the decline continues at this quick pace? I have no support systems in TV. Has anyone else been through a similar dilemma ?
Thanks for your input,
BG

I think this sentence says it all:

He really wants to come down and there is no place I'd rather be but....

As you know, if he is in a wheelchair you will get preferential treatment at the outbound airport and also this end; and when you get to TV you will have more people offering to help than you will know what to do with.

At least here, you will be able to get him out into the sun and warmth. You will be able to take him into Publix and all the big stores which will surely give him something to do. I know Maine, and you are not going to be able to get him out much before April/May. Another plus is the number of support groups here.

This is difficult for you because you are the caregiver, but so much better for him.

[CFrance]

As long as you have this forum, you have help whenever you ask, billyg. The flight will be fine with preferential treatment, as annother poster noted, and you can either take a TV taxi service ($35/person), or I will give you the name of the driver we use, who charges $85 total for a private ride in a large suv or smaller sedan (the two of you only) from any airport right to your doorstep, nonstop.

Then you will both be warm. :-)

[Madelaine Amee]

The Rec News section of The Sun shows several Parkinson's Support Groups, and most of them are at Chatham which is in your area. One is called Exercise/Support 1:30pm on Thursdays; Parkinson's Fight Club 1:00pm Sunday and one at Bridgeport on Wednesdays at 11:45.

I am looking for help for a friend of mine and came across this information on Parkinson's - hope it helps with your decision.

[KathieI]

Hi, I am debating whether to fly down to our home in TV this winter. My hubs has a quickly progressing Parkinson's w Dementia. Our latest challenge is that his legs are so weak that he will be wheelchair bound soon. He really wants to come down and there is no place I'd rather be but.....I worry about how to manage the travel and then finding a caregiver and then what if the decline continues at this quick pace? I have no support systems in TV. Has anyone else been through a similar dilemma ?
Thanks for your input,
BG

Billy, sounds like you are overwhelmed with these decisions and the caregiving you are doing for your husband. I agree with the previous posters, this is the place where you will get the most help and advice. I agree that the flight and airports will really take care of your husband on a priority basis and the taxi that CFrance suggests is a wonderful idea.

Once you are here, you will have a greater opportunity to find caregivers and doctors who will help him, plus support groups, and you, yourself, will have a large support system with your friends on TOTV.

Just remember to take one step at a time, inch by inch, life's a cinch. I have been in similar situations a few times and I know the feeling of how hard it is to make these decisions. Good luck and God bless.

[billethkid]

I would find a way to make the journey happen in the most accomodating way, but do make it happen.
The change in environment, atmosphere, activities and support professionals will more than offset the concerns.

Just being able to get out more increases the quality of life for many who would otherwise be shut ins "back home".

If he wants to do it...then make it happen (easy to say but I know because I had to make some tough decision about my mother in Syracuse, NY.....we had her flown down in a med evac jet!!!!!)

[janmcn]

Hi, I am debating whether to fly down to our home in TV this winter. My hubs has a quickly progressing Parkinson's w Dementia. Our latest challenge is that his legs are so weak that he will be wheelchair bound soon. He really wants to come down and there is no place I'd rather be but.....I worry about how to manage the travel and then finding a caregiver and then what if the decline continues at this quick pace? I have no support systems in TV. Has anyone else been through a similar dilemma ?
Thanks for your input,
BG


You don't say what kind of support system you have in Maine. Do you have children or siblings nearby? Where do you think your husband would receive the best healthcare? Which place is more wheelchair accessible?

Don't expect too much assistance from the airline except for a wheelchair to and from the airplane, for an additional fee. As BTK said there are air ambulances available. A few years ago the fee for such was $20,000 from Florida to Boston. Good luck in whatever you decide.

[billethkid]

You don't say what kind of support system you have in Maine. Do you have children or siblings nearby? Where do you think your husband would receive the best healthcare? Which place is more wheelchair accessible?

Don't expect too much assistance from the airline except for a wheelchair to and from the airplane, for an additional fee. As BTK said there are air ambulances available. A few years ago the fee for such was $20,000 from Florida to Boston. Good luck in whatever you decide.

I paid $8900 for door to door....private ambulance jet with doctor and nurse aboard.

[Bizdoc]

Having just gone thru a similar move of my parents (who have very limited mobility), look at booking non-stop (if possible) first class seats. The price difference is surprisingly small and usually includes 3 checked bags for free. You also won't have to struggle to get him to the back of the plane (priceless) and the service in front is better. Call the airline's disability services phone number once you have reservations. They will work with you to arrange for wheelchairs from curb to plane and plane to curb (you will, of course, need to tip the skycap). The sky cap can usually get you thru the "fastpass" lane at TSA.

Unless you are renting a car, arrange for a car from the airport to The Villages ahead of time. That way, they will be waiting for you and you'll have less distraction at the airport. I recommend Andy Zimmerman at 352-259-5600. You can also search on TOTV for others if you wish.

Once here, there are a number of home health agencies that can help if you decide you want or need them. There are also respite beds at some of the assisted living facilities for those times when you know you are going bat **** crazy.

Good luck and God bless.

[Doctommft]

Hi, I am debating whether to fly down to our home in TV this winter. My hubs has a quickly progressing Parkinson's w Dementia. Our latest challenge is that his legs are so weak that he will be wheelchair bound soon. He really wants to come down and there is no place I'd rather be but.....I worry about how to manage the travel and then finding a caregiver and then what if the decline continues at this quick pace? I have no support systems in TV. Has anyone else been through a similar dilemma ?
Thanks for your input,
BG

Billyg:

I can only respond to the flying experience. Five days before scheduled to fly home to see my 93 year-old Mom, I had a disk problem. I was unable to walk without support. The airports and airlines do a superb job providing the wheel chair and an escort. I had difficulty boarding but was the first on and last off so that I could hold onto the seatbacks without disturbing other folks. One of the crew was always there to carry and stow my bags. While the trip was painful, I was glad to have had the opportunity to see my Mom.

Keep researching on this form and I'm sure you will get the answers you need to make the best decision. Check the support groups. I had a friend go in your husband's direction. I regret that I didn't have the courage to stay with him. Good luck.

Tom

[SALYBOW]

Don't expect too much assistance from the airline except for a wheelchair to and from the airplane, for an additional fee. As BTK said there are air ambulances available. A few years ago the fee for such was $20,000 from Florida to Boston. Good luck in whatever you decide.

I just had wheelchair help for no charge. I am willing to help you when you get here.

[Billyg]

Thank you so much for the help and support. It feels so good to have this wonderful group of friends, even if we haven't met face to face yet! I feel helped and held.
Tell me, do people bring their own wheelchairs and walkers down on the airplanes? It's all so new to me.

[redwitch]

If they have them, they usually bring them. At least that was the case a few years ago. You could always call your airline and see what they say. If, for some reason, they're not allowed, you can always ship them via FedEx and just use the wheelchairs provided by the airline.

[sueandskip]

Agreed !

[ronsroni]

Hi and Happy New Year.... for you both. There is a group that meets a few times a week...THE PARKINSON'S FIGHT CLUB and it is a fantastic way to meet folks with similar situations, referrals for docs, etc and a social aspect for you, the primary careperson. Call Colony Rec Center or THE FIGHT CLUB at 750-1935 510. Gary, the gent who, with his wife of eternity, run the meetings alongside others with the lovely condition. Gary is afflicted and battles thru each day with a spirit and persona that lights a fire under the ocean! Great guy. Too much to say here. Fantastic group. BTW... I do not have anyone with the condition blood related but I have 45 years in nursing and I love giving back,
My name is Roni Goldman and if you PM me, I will give you more particulars. They also have an ANNUAL CRUISE and what a blast. If your hubby is a vet, they are fierce in getting the HONOR FLIGHTS up and running as well. I hope you can stop by and bend an ear.
All the best.... great health and peace of every sort.

[gjbl8114]

Billy, you've gotten some really good feedback here from those who might be familiar with your dilema from a distance. There are definitely things you need to consider before making your final decision. I am actually living your issue right now while in TV's. My husband has Parkinson's Lewy Body Dementia which I suspect is your husband's diagnosis. I am happy to share with you the good and the bad sad of such a decision. Feel free to contact me on a PM or send me your email address and I will share with you my experiences in this regard.