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Thursday, April 17, 2014

End of a Dream

So the good news here is that Bob got accepted back into Physical Therapy in Outpatient Rehab at the charity hospital -- and, with just one phone call, the financial aid office is happily picking up the $45.00 per visit co-pay.  Amazing, how easy that was -- this time, now that I know which hoops to jump!

Anyway, Bob had his first PT appointment today, for an evaluation, and it was one of the same PT's that he had a year ago.  Which was nice. To see a familiar face.

As always, with the first PT appointment, we had to "set goals" and this time, the PT pretty much stated matter-of-factly that Bob will never walk again. That really, walking as a goal was beyond any expectation...

Now I know this is true. I think I've known this for a long time. But I always liked to have a dream, you know, a little hope for a miracle, that maybe, just maybe, we could get him back on his feet again...

But, this time PT goals will be trying to get his neck more flexible and stop the twisting of his spine which is happening because of the post-stroke dystonia. And strengthen his torso muscles. So that he may be able to make transfers from wheelchair to bed more easily, and make things like washing his hair and dressing easier (and I will admit all of this has gotten harder this past year and I will admit, his spine is twisting...) and, as the PT said, the goal is just try to improve Bob's "quality of life"....

And I know this is the reality of the situation. I do understand. But, man, it's really hard to give up that dream of walking, you know, of being, sort of, close to normal... and to just think about "goals" being only "quality of life" issues, which by-the-by sounds like something you think about before you put a dog down--- jeepers, and right now, I hate to say,  I have tears in my eyes.... 


Mike Furr said...

We hang on to hope even when we know better because denial allows us too. Normal walked out the door a few years back and a bit of reality walked back in today instead. Don’t let it steal your dreams though. Do a bit of renegotiating and maybe normal will have a new look and reality won’t be such a slap in the face.
I’m sorry it was a somber day, I understand ….
Tissues and hugs…..

J.L. Murphey said...

Yeas, quality of life is important, but it depends on what Bob wants. I've heard that pronouncement a couple times in my life once for me and the second time for my husband.

For me, it was you will never walk again. In my mind I refused to accept it. I kept pushing while others around me gave up. I eventually got up on canes and then walked with no assistance.

Now with my darling husband, it was staring me in the face. After so many years of fighting he is dying. I have no choice, but to accept it. I finally called hospice services not because he was dying, but because of my stroke I couldn't physically care for him full time with all of his needs and for his quality of life.

You know what... even though hospice and his doctors said he wouldn't see last Halloween, he is still with me. His will and God's time is not today. He greeted me with his celebrate song this morning. Gaspy, oxygen condenser drowning out most of his song, and singing every fifth or sixth word...he crooned. But I know the words because they are now engraved on my heart.

For today that is enough. Take it one day at a time, honey. Acceptance is only a hope killer if you let it be.

Jenn said...

Acceptance. Hope. Dreams.
Dreams propel us forward. You've an excellent handle on what's what, so keep hoping & dreaming for that miracle. Weirder things have happened in this world.

Ain't over til it's over.

Much love to you both <3

Rebecca Dutton said...

Put this new dream in your head. It won't be long before you put Bob in a comfortable new wheelchair and let the lift put him in your new van so he can get out of the house more often. You will be able to spend 30 minutes at an art museum, go for coffee, and come home because you won't have to worry about having money for gas. You will be able to hire more nurses to take care of Bob when you run errands. As nurses take over some of Bob's care you will have time and energy to do more than talk to him about his feeding tube. Many people live happy lives in wheelchairs because, unlike dogs and cats, humans love paintings, music, watching the sun set, and staring at the stars.

Anonymous said...

Though your ultimate dream may not materialize, don't give up on yourself or on Bob. What is Bob's dream about himself? Dreams are what motivates and pushes us along to accomplish the impossible. How many thousands of individuals have been told they would never walk again, move again, only to do just that because of their dream & persistence. Bob needs to have that dream too.

Acceptance of the situation isn't giving up or calling it quits on the dream. Acceptance just moves the target to something else, and allows us to adjust a bit toward a different goal.

If not done already, be sure to have the PT'S expertise added to your witness list of depositions.

Hope you had a Happy Easter.

Hugs & prayers, Dan

Linda said...

You have tried for so long and hoped so hard. The dystonia is a game changer all right.

One day at a time. Sometimes it is okay to take a break and look for some quality life moments for yourself too..

Hugggs to you both.

Anonymous said...

Hi Diane, Julie from Wisconsin.