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Topic A Hard Decision for the Holidays Go to previous topic Go to next topic Go to higher level

By seawench On 2013.11.30 15:18
Yesterday I had to make a very difficult decision. We had to choose to stay home this Christmas. while there have been times when we made this choice, because of weather, finances or Bob being fragile due to a health issue, this was different. This was the choice that said - we can no longer do this. There won't be a "If he's feeling better we can try next year" We are done with the holiday pilgrimages and it's breaking my heart that we have reached this point.

A special thanks to my friend who helped me make this decision. she and her husband have traveled with us and she has a real clear picture of what is involved so she was able to give wise counsel, a listening ear and the support that I needed.

Seawench

By carman96 On 2013.11.30 16:00
That is a tough decision. Sorry you had to make it. I don't think very many people understand how difficult it is for our PWP to travel. It really does suck to not be able to say "maybe next year"
Glad you have a dear friend like that.

By Maddie52 On 2013.11.30 16:03
Hi,

I totally understand what your are feeling. After two horrible trips in the last year (one last Christmas) we are no longer travelling either, especially if it involves an airplane. I have resigned myself to the fact that all future Thanksgivings and Christmases will be spent here. I, like you realize that it will not be better next year. I am fortunate as my husband's family and all my stepsons and thier families are in Colorado but I am sad that I will no longer be spending any holidays with my only sister and her sons in California.

I wish a healthy Holiday season and hope that there is some joy for you too.
Madddie52

By ResistanceFutil On 2013.11.30 17:16
I scheduled a trip requiring an 8-hr plane trip to Hawaii, where my husband always wanted to go, to coincide with his moment-of-truth MDS appointment. I figured if he doesn't have PD, we celebrate, if he does have PD, there won't be a better time in the future to go.

I'm glad me made the trip earlier this month, but even this early in the game we had minor problems. Trying to carry two plates from the breakfast buffet - nope. Then forgetting and trying the same thing the next morning and requiring assistance. Confusion over schedules, days, location in the hotel (I'm sure a strange location was more difficult). While my husband is fully mobile and requires no assistance with ADLs, his poor posture, gait problems, staggering, were more pronounced, or more likely I noticed them more in a new environment.

Our traveling days are not over yet but I can see that day coming and more problems adding up on each successive trip. My compassion is well up in this particular area now, and I share your sadness of the reality of this disease.

By VioletV On 2013.11.30 18:36
Ahhh. This is very helpful. We cancelled a trip we'd planned for July to see my husband's daughter--she bought a house and would have been excited for us to see her being "grown up." But it just didn't seem possible, and now, Thanksgiving was just the two of us here in our new house, new town. Christmas we hope to have 2 of the kids here. But, yes, I now see that travel just is not in the cards for us any more.

I've been wanted to go to Florida, where my family has a great place -- free warm weather vacation. But the idea of a car and a plane and a change to another plane and a car, and then a strange place when we get there -- no dice.

Thank you all for helping me see that this is not just my PWP's issue,but a general PD thing.
VV

By carman96 On 2013.11.30 22:01
Some people can and do travel even when it is difficult. I've always been a rather nervous traveler, and with my husband's confusion and incontinence, it's hard to deal with. I will go to family gatherings if it's not more than about a two hour drive. But it's not easy.
Lately my husband has shifted the car while I am driving, taken his seat belt off on a dangerous part of the road, opened his door to spit or whatever, and peed in his pants. Talk about distracted driving!
Most of the time it is easier to stay home.
Also with his back pain, and him getting so tired after a few hours of not being able to lie down, I am exhausted before the trip even starts, and so is he. Most of the trips we make now are to doctor or physical therapy, etc. appointments.

By seawench On 2013.11.30 22:04
We traveled as long as it was humanly possible, and the actual travel part isn't too bad. He's fun and his wheelchair makes a lot of stuff much easier. We still have one trip that if he is in relative good shape we will go, and we have the travel buddies for that one.

But the biggest challenge is his daily care and all that it entails becomes almost impossible when we are not in our own home with all of our tools. So to try to manage his care, which makes me exhausted at home, and to manage all the festivities of family and holidays, I began to think that I would be so worn out that the benefits were far out weighed.

I am in my early 50's so there will be time for big family holidays in the future, but for now as his life is winding down I am planning a more intimate celebration that will create precious memories to carry with me.

Seawench


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