Friday, June 30, 2006

Caregiving: another piece of the puzzle - college

     On the family shelf of college mascots we can now place a Golden Ram.  Yesterday was parent and student orientation and another piece of not only the puzzle of living with MS as a family but also of the ‘dreams’ came together. While the travel distance and program duration made Patti’s participation impossible, it never would have happened had Patti not committed herself to this goal. Another day and time, we’ll create our own custom made visit with Patti.    

     Caregiving, sooner or later, becomes a generational concern. Living with Patti’s Multiple Sclerosis as a family is not the “government statistic” that tells us that the average length of time spent on caregiving in the US is 8 years. These statistics are skewed because terminal illness is lumped with chronic progressive and remitting remissive illnesses. 

     24/7 assisted care, or the care facility era, was something Patti and I often talked about when Patti had better control of her cognitive functions. The generational concerns of caregiving were important to Patti. She wanted to empower Megan’s future as best as possible.

     Continuing homecare was not only increasingly unsafe for Patti but increasingly the odds were high that my health and well being were at risk as a solo 24/7 spouse/caregiver. If anything were to happen to me, Patti’s 24/7 caregiving needs would fall on Megan. Patti’s physical and more importantly cognitive progression was racing toward a collision course with high school graduation and/or college enrollment. Patti fondly remembered her own college years as a “Nittany Lion” at Penn State and the following young adult years and did not want Megan to begin life as a 24/7 caregiver for her Mom.

     Together we began exploring the economics and process of 24/7 care facilities BEFORE necessary. MS progression seemed to read our minds and forced the issue within a year of when our research began.

     Listening to all the “tips” yesterday, I realized just how unique our family is. I just hope Megan doesn’t go into culture shock surrounded by thousands of able bodied people <grin>.       

     As if an omen, after days of rain and rivers cresting all around, on campus it was a magnificent sunny day while a couple hours away Patti woke up safe and attended and went for a roll enjoying the same marvelous weather when her folks dropped by to visit. Sometimes plans do seem to work out!


  1. I wish your daughter well in college:) and i admire you and patti for doing things to make megans life as normal as possible. Have a good 4th of july


  2. Patti and you looked ahead, and saw the inevitable coming... and you planned for it. But a year! That was fast progression... I didn't realize MS progressed that quickly. I know you were proud to accompany your daughter for orientation. This reflective entry reminds us that with or without MS, plans need to be made for a future time when we won't be able to take care of ourselves in the manner  in which we are accustomed to. Thank you for coming back to that. It's an important aspect of living these days. Not just to plan for one's retirement, but to plan for one's care (or the care of one's spouse) if one is not able to get around. Ever since I started reading your journal, Patrick, I've been thinking about these things. Bea

  3. ........each new challenge gives you all strength as you support each other.  You all are doing well in the roles you must play.

  4. how wise you and Patti both were to prepare for what was facing you both in the future and to make sure Megan's needs were so taken so much into consideration. Wishing Megan a fantastic adventure in college :)



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