chemotherapy

From MY LUNG CANCER ODYSSEY ...

... Time with Patti has been a constant frustration through this past month of chemo … down from at least 3 outings/visits a week we have been lucky to have one … ‘focusing on my cancer’ the absence of caregiving time gets in my head like negative energy.

Our daughter has been a godsend somehow creating opportunity between everything else going on … we had a fun afternoon Wednesday snacking on popcorn and popsicles in front of TV and catching some sun on the back patio … all the time with ‘no lung cancer’ since Patti’s MS dementia and cognitive problems prevent her from remembering.

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

death dying and MS dementia

A niece of Patti’s notified me Saturday that Patti’s father (Harold Decker) had died earlier Saturday. Speaking for, to, or whatever for dementia was never a role I wanted.

Yet the die was cast and frankly I do have the most experience.

Humbled by two weeks of Chemo Fatigue and on guard from others getting inside my failing immune system, our daughter and I concocted a plan.

We arranged with care facility to set up a sleeping pill for the evening, just in case. Then after completing my saline drip or the day we returned home for phase II

Feeding Patti a comfort food dinner, I began with, “Patti your father died” … “what!!! Harold Decker is dead?”

Shifting to logistics … “My Dad is in heaven … why would he give a shit?”

Letting Patti run with the agenda we zoomed in and out of ‘remembering’

I don’t know what Patti will or will not remember but I pray it is memories of life and laughter from long ago …

... and by our daughter to keep her Mom connected and engaged through My Lung Cancer Odyssey she has empowered father daughter time including this now iconic photo of Harold and, Patti in front of grave of George Decker from Memorial Day Weekend at New Freedom Cemetery.

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

vegetarian chili, carnivores, and cannibals

With almost a quarter century of living as a family centered on caring we find things to celebrate. Today was my first day of radiation therapy for my Stage 4 lung cancer metastasis to the brain.

Safely residing in her care facility with Multiple Sclerosis dementia erasing Patti’s awareness of my health issues we decided to have a family dinner at home. Our daughter is a vegetarian but has been craving a chili dog, with my newly radiated brain I offered to create a vegetarian chili dog.

Megan retrieved Patti while I did the cooking. Using a South Beach Diet Vegetarian chili recipe I made the chili from scratch which also gave me an excuse to test that my fine motor skills, memory, and such were still functioning.

Using Morningstar Farms Meal Starters Grillers Recipe Crumbles for the ground beef alternative and Morning Star Farms Veggie Dogs for the hot dogs … abracadabra you have a chili dog with a whole lot less fat that could fool any carnivore.

The laughs are because we were watching a NBC TV Show “Hannibal” which raised the bigger question ‘OK so I can fool a carnivore but could I fool a cannibal?’

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

it's not heavy it's my lemonade

Tumultuous week for the able minded and able bodied.

What about the most vulnerable among us when disaster strikes?

A snippet or two of news may get stuck in an able minded head but what about seen or heard through MS Dementia or other cognitive filters?

So I decided to give Patti a media break and enjoy a lunch outing on Friday at Helena’s Chocolate Café & Crêperie, “a slice of Europe in downtown Carlisle”.

Watching cherry tree blooms drop and swirl on the breeze outside the windows, we could have been in a snow globe.

Our dessert, a pear almond torte served just 'gently warmed' was out of this world.

As Patti grabbed her lemonade bottle to drink, I asked her if she needed some help?

Smiling she answered, “It’s not heavy, it’s MY lemonade!”

(in my head played, "It's a long, long road

From which there is no return …he's not heavy he's my brother")

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

caregiving care giving care facility

what if? ... Multiple Sclerosis care facility era

Multiple Sclerosis affects each person so differently, I honestly do hesitate to share our story sometimes.

WHAT IF…THE CARE FACILITY ERA

By Patrick Leer for MultipleSclerosis.net

Scaring or depressing the newly diagnosed or those with mild MS is not my intent but on the other hand living with severe MS as a family can no longer be brushed under the rug.

My wife's quarter century imprisoned in her malfunctioning body by MS has meaning, as does her wish 'what if' something happened to me? Patti never ever ever ever wanted our daughter to sacrifice her young life as her caregiver 

I wonder if sometimes the fear of tomorrow is not more about concerns over family support and involvement as much as MS symptom progression. 

"How did you know when it was time for Patti to move to a care facility?" My thanks to MultipleSclerosis.net for sharing our longer stories.

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

care facility multiple sclerosis caregiving

oh say can you see

How do you monitor caregiving in the care facility era? A mega sized wall calendar keeps it ‘in my face’ every time I enter my kitchen. Glancing at it Sunday I was struck by the single outing with Patti last week, far off my norm of 3 outings per week.

Yes, I was a little busy with my own lung cancer health concerns, lung junk vs lung cancer. My mother’s voice echoes in my head, "is that your reason or your excuse?"

Outings with Patti’s Multiple Sclerosis dementia are never boring. While I have no lung cancer in her 'dementia world', buckling her in our wheelchair accessible van I coughed briefly only to have her remark “you sound terrible.” I know she means nothing but it unleashed an anxiety worm in my head.

We laughed as I paused while pushing Patti’s wheelchair by our lawn gargoyle. He appeared so sad playing his flute to the last bump of winter snow.  The anxiety worm whispered “your last snow”.

Returning Patti she was sooo slouched in her chair I considered asking aides to use the Hoyer Lift. Those anxiety worms have me more focused than usual on 'cheating death', plus Easter Week isn't helping. 

If I'm cheating death than full speed ahead. Initiating the one person unassisted transfer it was not the prettiest maneuver but Patti end up in bed safely. 

Awakening this morning to a couple inches of snow blanketing our neighborhood was a godsend.

While there is snow there is hope! 

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

care facility multiple sclerosis caregiving