Tuesday, October 22, 2013

Update about updates

Still Megan posting, but dad wanted to let you all know that small updates will be posted periodically at his facebook page until he can get to a full screen computer and post these himself.

Tuesday, October 08, 2013

Caregivers Make the Worst Caregivees

First thing's first, this is not Patrick writing any of this! I asked my father for permission to update his blogs for him while he's temporarily unable to.

As regular readers are aware, he's been going through some aggressive chemotherapy for his lung cancer. After the fifth round he managed to catch pneumonia from somewhere, and had to be taken to the hospital when he was too weak to lift himself out of a chair. Something like that is scary enough for a regular person, but maybe more so for a long time caregiver. 

It was a rough couple of days, but the antibiotics finally began working and his body is still fighting off the infection now, on top of the chemo and the cancer. The main concern is that he has become very weak, and needs help doing nearly everything.

He's said since the start that parts of cancer and chemo have helped him better understand parts of my mom's disease, and I can only imagine that's even more true now. But I wouldn't want to speculate too much and end up stealing away a future post my dad would prefer to make himself!

When he'll be able to do that is up in the air. The hospital wants to discharge him to a facility equipped to handle inpatient physical therapy with the goal of returning home. And my mom's care facility happens to have such facilities! 

Now, whether or not our insurance will approve of that has yet to be seen, and whether it would even be the best fit for the kind of physical therapy he needs, I have to admit my fingers are crossed for him to spend a little vacation time there. Potentially being able to see my mom daily again could be interesting for the both of them.

I promise to read all comments to him while he's out of action, spambots included, so don't be shy.


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/

Wednesday, August 14, 2013

Mammograms vs Thermograms

“Sitting in the waiting room I listened as Patti reinvented the boundaries of cursing, swearing and yelling even with her own daughter trying to help before another mammogram bit the dust ..."

FEATURE Posted by Patrick Leer - August 13th, 2013

Thank you http://multiplesclerosis.net/ for the  opportunity to share our story. 

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

Saturday, August 10, 2013

Palliative Care, Hospice, and MS

"Palliative Care does not leap out as something associated with MS. 

Yet in reality ‘palliative care’ is medical care provided by physicians, nurses and social workers that specializes in the relief of the pain, symptoms, and stress of serious illness ….”

Posted by Patrick Leer—August 8th, 2013

"... Obviously there will come a point when you will need to have conversations one way or another about palliative care, hospice, and dying regardless of what your diagnosis is.

As a caregiver this might be the one surprise you are not prepared for, after all MS is not considered a fatal disease! And your spouse has mild MS or is using disease modifying drugs….  Don’t let yours become intimidated by stigmas or wait too long. Get the facts in your State.

As a caregiver you are no more guaranteed tomorrow than the MS person you care for.”
Thank you http://multiplesclerosis.net/ for the opportunity to share our story of living with MS as a family. 
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Wednesday, August 07, 2013

Caregiving Yours ... newsworthy?

Increasingly "My Lung Cancer Odyssey" and "Caregivingly Yours" cross over ...

From “The Sentinel” Newspaper …

“MECHANICSBURG — For the past 24 years of his life, Patrick Leer’s own health concerns were of little consequence in the face of his wife’s multiple sclerosis …“


Thank you Christen Croley and “The Sentinel” for promoting awareness of Lung Cancer, Muliple Sclerosis and upcoming Pennsylvania Lung Cancer Partnership’s Free To Breathe 5K Run/Walk on City Island on August 24th.

I also blog for multiplesclerosis.net

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

Saturday, August 03, 2013

“You’re cane looks stupid!”

Breezy, partly sunny and 74˚F (23.3˚C) … it was not only a perfect Multiple Sclerosis afternoon but my first chance to push Patti’s wheelchair since chemotherapy for my lung cancer began 8 weeks ago

After a couple blocks I yielded to Megan and walking next to Patti she notices my cane …

Patti: “You’re cane looks stupid!”

Patrick: “My cane looks stupid? … This from someone in a wheelchair … isn't that somewhat like the pot calling the kettle black” 

The banter of laughter is a wonderful aperitif before dinner at Helena’s Chocolate Café & Crêperie in Carlisle, PA 

Patti and Megan split a 'Nutella and Strawberry Crepe', I ‘chemo sampled’ a Breakfast Crepe featuring egg, ham and gruyère cheese 

…‘chemo sampled’ meaning I ate about half because of chemo suppressed appetite … I have learned to order foods that can easily be reheated at home as often appetite returns … or in this case I hope for ‘breakfast’ tomorrow.

Washed down by Nantucket Nectars Lemonade, we finished by splitting a fruit (blueberry, raspberry, and kiwi) tort. 

Admittedly the assistive devices seem to be multiplying and since chemo Megan has taken over the assisted feeding of Patti ... 

We have been living with Multiple Sclerosis as a family for 24 years … since chemo we push, roll, and now limp forward ... making the time for the banter of playful laughter ... We Are Family!!!
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

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