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Topic Learning my new role Go to previous topic Go to next topic Go to higher level

By VioletV On 2012.11.24 14:07
Oh my, I am so happy to have a place to put this.

For about five months my husband has known that I am scheduled to give an important professional talk in Mexico next week. It will be a five day trip.

I had a 4 day business trip a couple of weeks ago and with all of the planning (rides for our daughter, care for him, cooking ahead of time, calling regularly, etc etc) I was able to take that trip, and he was safe and comfortable.

Now, as I prepare for this next trip, over the last 3 weeks he's started having panic attacks- triggered, I think, by his eagerness to get off Mirapex, and skipping doses, etc. They've increased in frequency and severity, and I've tried to work with him on known helps (breathing, visualization tapes etc). They work, but he always has a reason why he doesn't want to use them. Then last night his 13 year old dog (ours, really, but he's had her a lot longer than he's had me) came down with bloat --had emergency surgery at 1am...we were there until 2 am... prognosis guarded. Still waiting to know if she'll make it. (My husband's joke - "I always wanted to have a dog that was worth a lot of money -- and now we do!")

So at this point, it's clear that I won't get to go to this conference to give this speech, meet with my colleagues from around the world, etc. I just don't see how I can leave him alone, and he won't have a night nurse.

I have one more long trip scheduled this year (4 days) and then no more long travel. It is SO hard to have to give up these last trips, which mean so much to me professionally.

I have been tearful all day, as I work to prepare my talk for someone else to give. Then, I started thinking about the fact that his Parkinson's is taking one or two professional meetings away from me. However, the Parkinson's has taken his sailing, and his horses, and his ability to play a musical instrument, and his handwriting, and his ability to use the keyboard, and the ability to drive, and so many other things...forever. This perspective helps.

I'll get over the missed meeting (as will my boss). But it's still just hard to realize that I'm making the transition from wife to wife/caregiver. But I think that's where I am. I realize that we are very lucky in many ways. We have the resources to get help, and I can mostly work in my profession from home, but it is still difficult to stop being the me that I know, to become this new self.

By jcoff012 On 2012.11.24 22:13
I am the wife of a man with PD, but far from an expert. All I can say is you seem to be able to take all of this in stride. I know your job is important to you, as it should be, but when I watch my husband struggle with his growing limitations, I often marvel at HIS ability to keep going, all the while not knowing what his/our future holds.

This disease hits us in waves...some days seem "normal", others are painful to our soul. You certainly NOT alone.

I do hope you will be able to go on the next would be an outlet and good for you. If you aren't able to go, please come back and vent...that's why we are here.

Hugs and love, Jane

By VioletV On 2012.11.25 19:35
So now my head is spinning. I was already clear that I needed not to take the trip. We've been checking on the dog. She's on the mend, and will probably survive.

Now, after having made my peace with staying home and missing the conference, this morning, just before I hit send on the email telling my boss "I'm not going,", my husband said wait. Don't send it yet. Then later, "I think you should take that trip to Mexico."

I have noticed that he's been trying to do things for himself that I normally do for him -- and what I see is that he can, with difficulty and determination, get out of bed, change his clothes, manage simple microwave meals, on his own. He's quite a guy-- so I will go, gratefully.

I think he was reassured that I really would stay at home if he needed me to do so, and do it without blame and recrimination (what I hear of his late wife, my predecessor, was that she was pretty critical of his difficulties, and he fears that I may be that way too.).

I think it must be terribly scary to have to depend on other people for so many basics, and to face the possibility that he will have to depend even more on me as time goes on. As for me, I know that having a body means that some kind of frailty is inevitable, and there are worse things than this one. So, it seems, me voy a Mexico. Mas antes!

By carman96 On 2012.11.25 23:41
So glad you will get to go on your trip. It's important for you to have a life outside of the Parkinson's. After all there will probably come a time when you won't be able to go at all. Enjoy yourself!
I'm happy your dog is doing better. I think pets are so wonderful and of course we want them around as long as possible.

By parkinit On 2012.11.27 22:48
Violet -

I, too, am happy for you. I have given up my career, but dearly miss the interaction with colleagues. I'm glad you get to go and hold on to this part of your life as long as you can!

By VioletV On 2012.12.14 09:35
Well, I did get to the conference in Mexico (which was very interesting -- my talk was very well received!). Thanks for the comments. My last long trip was the next week, and now I am "done!" No more long trips -- ending a 25 year pattern of extensive business travel. I'm relieved (the travel gets old) and also a little sad. It's a tough thing to find the way to be "ok" with such a big change-- But the upside is that I'm hoping to get into a writing schedule that allows me to turn my unfinished manuscripts into submissions to publishers! We'll see how to accomplish that.

The hardest part for me, now, is that my husband likes to be very busy. And when he is busy, it means that he's hoping for help to accomplish the many chores around the house that are important to him. I'm glad that he's learned how to use the DVD player, so that for a part of the day he's actually sitting down and enjoying a movie.

He's started acupuncture, which seems to be helping too. This PD is an adventure.

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