Monday, August 26, 2013

The end of an era – accessible transportation

Facing an estimate of $1,500 in repairs to pass Pennsylvania inspection … our personal wheelchair accessible van era may end this week and it's not just the money … 

… Since beginning 'aggressive chemotherapy' almost 12 weeks ago, I can no longer lift or transfer Patti due to fatigue from chemotherapy to combat Stage 4 Lung Cancer. (My Lung Cancer Odyssey)… NO more ‘off road’ wheelchair pushing through accessible trails. … basically no more ‘physical caregiving’ on my part ... take physical caregiving out of the equation and is an 11 yr old van with 160,000 miles worth it?
Last week sitting in the chemo lounge I watched a couple use ‘the hug’ – one person unassisted transfer from recliner to wheelchair with healthy spouse transferring chemo fatigued spouse … how many times have I done that through the decades … hundreds? … thousands?  … the key word here is ‘healthy’ spouse ... and I can no longer qualify as the healthy spouse.

When operating a wheelchair accessible van one must still need to be able to lift or transfer your passenger as a failsafe. … Even my visits to Patti’s care facility have been seriously impaired by my chemo reduced immune system.

Visiting is down almost 2/3 for me … 

Does fighting to outlive Stage 4 Lung Cancer trump a quarter century priority for spouse caregiving for Multiple Sclerosis?  … Most days I awake to find myself so conflicted that I am alive and fighting to outlive lung cancer … yet ‘hands on’ involvement with Patti’s care declines.

 … her MS related dementia impairs her awareness of any of these changes … she rarely remembers I even have lung cancer much less am fighting to outlive it.

Patti did not choose Multiple Sclerosis any more than I chose Lung Cancer … however a quarter century ago I chose to juggle spouse caregiving and basically single parenting ... now we enter a yet another new era in living with MS as a Family…

A dear friend sent me a note of encouragement from the poet Audre Lorde …
“I have come to believe that caring for myself is not self-indulgent.  
Caring for myself is an act of survival.”

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/


8 comments:

  1. I understand. I have often remembered the days of when I still had Charlie and had to care for ALL his needs and mine, plus all the shopping, unloading, carrying, etc.... There is no way I could pull that off now! Living life and caring for myself is sometimes more than I can handle!

    Jackie

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    1. Amen Jackie fighting to outlive cancer is a FULL TIME jo

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  2. Patrick,
    Thank you again for sharing your most vulnerable moments. You inspire me, a caregiver far behind you in the role of full time dependent care-giving. Your health and happiness, your needs are in my thoughts - and in my heart and I am sending you all the good energy I can. Thank you for choosing to take care of yourself. It is a gift to many, including Patti.

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  3. Having read your lung cancer time line, I stopped in at this site. Oh, you are a man of character. I have only been a caregiver three months now and one month years ago for my mother. You are a prince. I am following your other blog. God Bless. Mary Brown-Martilik

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  4. Ditto both the previous comments---again you are a hero to me! Navigating being a caregiver is enough but and to it your own struggles---wow! Love and prayers always

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  5. I wish for you and your family that God protects, gives you strength, and your health back. My husband is my caretaker for 20 years and is doing chemo for lymphoma stage 4. While I am mobile right now it is showing me clearly how it is to walk in caregiver shoes. Love & Prayers to your wife, daughter, and you♡

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  6. I wish for you and your family that God protects, gives you strength, and your health back. My husband is my caretaker for 20 years and is doing chemo for lymphoma stage 4. While I am mobile right now it is showing me clearly how it is to walk in caregiver shoes. Love & Prayers to your wife, daughter, and you♡

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  7. Hej kocham modę, kupowanie ciuchów dopasowywanie ich do siebie. Najbardziej kręci mnie naturalnie odzież damska sklep online mi sie kiedys marzył ale w sumie teraz nie jestem pewna czy tego chcę.v to jednak ciężka sprawa jest.

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