Thursday, December 28, 2006

Christmas 'road trip'

“Living with MS” as a family has always been challenging but the future of “family” is enigmatic with Patti’s increasing progression in 24/7 care and Megan now living away at college. In another year who knows? ... Why not try a FAMILY 'road trip'?

 

Why Philadelphia? ... One reason is that among all the many celebrations of Christmas is that “we the people” seem to forget that our freedom pivots on Christmas and the Delaware River. On Christmas Day 1776 American rebels crossed the Delaware River just north of Philadelphia in freezing snow blind weather and reversed the tide of our Revolutionary War.    How different was your Christmas Day in freedom 230 years later?

 

Traveling with Patti is about traveling with Multiple Sclerosis. More specifically MS with a level of disability creeping ever closer to 8.5 (MS is measured on a scale of 1 to 10).

 

At her care facility she is assisted in activities of daily living by two attendants and a variety of cool mechanical lifts. “On the road” it’s just me and ever changing unknown environments.

 

Frankly the most intimidating to travel are MS symptoms of total bowel and bladder incontinence Once a person crosses a certain threshold of cognitive challenges catheters are no longer an option. Patti once ripped out a Foley catheter with no memory of how or why. And while obviously a guardian angel kept her from rupturing herself, it did end the catheter era.

 

Incontinence caregiving demands physical strength and creativity. It also centers your day around both the periodic and spontaneous need to change Depends, change clothing, and often shower. You need to find a way and the time to do laundry on the road. Keeping in mind that Patti can never be left unattended, it may seem overwhelming.

 

If you want a family activity you accept family for all that it is. As a caregiver you do not simply “fit a square peg into a round hole”, or “think outside the box” … you have to constantly reinvent the damn box. <grin>

13 comments:

  1. It's never easy... never, never, never!! Although my experience was on a much smaller scale (Charlie was 40-45 pds), it felt like I needed a U-Haul trailor to go anywhere. It's worth it all, though. The 'box' just seems to get larger and more mis-shapen, doesn't it?? <grin>
    Jackie

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  2. How do you do it all? Your a man with a lot of strength and humor wit to get you through the hard time. I admire you greatly. I have a close friend from church who had M. S.. She died the 26th of this month at 34. This disease touches many. It touches the whole family. You seem to have it under control. Happy New Year to you and your sweet family.


    In Christ,
    Gabrielle

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  3. How do you do it all? Your a man with a lot of strength and humor wit to get you through the hard time. I admire you greatly. I have a close friend from church who had M. S.. She died the 26th of this month at 34. This disease touches many. It touches the whole family. You seem to have it under control. Happy New Year to you and your sweet family.


    In Christ,
    Gabrielle

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  4.  As a nurse we take for granted all the things we have in a hospital to make our jobs easier.  I couldn't imagine a trip like your taking and all the difficulties you must encounter.  I am always in awe of the caretaker.  I did the role when my FIL got ill and stayed at home.  Rewarding, challenging, tired beyond belief and one of the best thing I ever did.

                             Julie

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  5. i am so glad you got out and took the trip:) lol at patti and wendys and the van problems too funny. i admire what you do for your family:) God Bless

    Deb

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  6. I've only experienced caregiving briefly. In 1997, the car accident that broke my dad's neck. They put him in a halo. I was the only of his seven children who stayed the entire time with him in the El Paso, TX hospital. The day came for him and my mom to be released to go home. They had no way of getting home (to Ga) except by plane, my dad newly in a halo, my mom missing a portion of her scalp. Both needing medical attention, and the hospital people were releasing them both. I plead with them to help me get my parents back to GA. Enter the Nightengale Flight. Thank God! The only way I could accompany them on the flight, which would take three days, would be as an attendant. I became my parents' caregivers. Mom was okay and could walk around on her own, but dad needed lots of care. He needed me to help him in the bathroom. He couldn't wipe his own bottom. He was embarassed, but I was glad to help him. It was hard doing this for him without any kind of training. All I had was compassion. It was enough. Once I saw them home safely, and made sure they got to their first doctor's appointments back home, established home visits, I then drove back to my home in NC... I was totally exhausted by the trauma (my sister had died in that same accident, and I couldn't go to her funeral in CA). I'd been gone a total of two weeks. But, I discovered that I could be a caregiver if I had to.  You do it every day. I admire you so much, Patrick. You are a hero. Bea

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  7. glad you had a nice trip!!!!!!!!!!!
    loved the rocky pic!

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  8. God bless you and your family.  I am in awe at how you manage to hold it all together.

    I wish you peace and happiness in the New Year and one special wish for you.  I wish for you, no more cluster headaches!

    Hugs to you, my dear friend,

    Deb

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  9. Great pose in front of the Rocky statue and I love the tree it's gorgeous.  You've had some ups and downs on your trip but handled it with the same calm and collectiveness that you always do and with the headaches as well,  I'm in awe, you're wonderful. Hope those headaches take a road trip away for a while.  Rache

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  10. Tough stuff.  So glad to hear that you still went on the road with your family no matter what the challenges.  Cherish it today for as you say, tomorrow, who knows.  You may think back with fond remembrance to the day of changing Patti's Depends.  
    My only caregiving so far has been with my daughter, but boy is it intimate!!  I remember taking temperatures rectally to get the most accurate readings, getting poop on my hands when diapers overflowed, unstopping constipation with suppositories and being projectile vomited on several times!!  It makes love so much sweeter I think to have given to this degree.
    ~Heidi
    http://journals.aol.com/whirlygirlie66/WHIRLYGIRL/

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  11. ...Jack and I read of your "adventures" together and agreed you are brave to start off on a road trip with so many variables.  Just going to Walmart is enough of a challenge for me right now!  My daughter's empathy was appreciated.  Just having someone else understand the hills to climb, seemed to help/

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  12. Have a wonderful 2007 Patti and Patrick.  I love your trips, they always make me smile.  You spread happiness even when things conspire against you, keep doing that. Rache x

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  13. As a retired caregiver, I can appreciate this entry and I salute you!  You brought back a memory or two for me.  I also applaud you for not letting obstacles get in your way.  Caregiving can be very challenging and creative to say the least.
    Gloria

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