Lung Cancer and Caring for Multiple Sclerosis
It’s sometimes easy to forget that caregivers are human, too. How did your diagnosis of lung cancer affect your role as a caregiver?
Mentally I knew the statistics that long term spouse caregivers die before the person they care for. Decades of stress dramatically impacts our own immune systems. Yet knowing something and accepting something are light years apart. Somewhat like Ebeneezer Scrooge asking the third ghost of Dicken’s A Christmas Carol, “Are these the shadows of the things that Will be, or are they shadows of things that May be?”
The only thing I was grateful for after learning I had lung cancer was knowing that Patti was already safely in long term care and would remain so as long as her annual renewal paperwork was completed. I have also since learned that her facility will take over filing the paperwork upon my demise.
As “how long do I have to live?” began to dominate my sleepless nights, I chose to conceal my diagnosis and surgery from Patti; I figured living with MS in the care facility era is stress enough.
However, I obviously had to begin to prepare a seamless transition in the immediate future in case I did not survive surgery, and start to think about the ‘after me’ time ahead.
A couple weeks before surgery, our adult daughter accompanied me to Patti’s Care Plan Review. I introduced her to facility staff and department heads and let the cat out of the bag about my diagnosis and upcoming surgery. “If” anything went wrong, our daughter was to take over as Patti’s advocate.
Our daughter has never seen her Mother walk, or ever depended on her Mom for anything through the years. It was a poignant passing of the baton, just in case.
Plus, one piece of the transition puzzle between home care and care facility care was Patti’s wish that our daughter never sacrifice her own life to care for her mother. Considering the progression of Patti’s MS dementia, I found Patti’s awareness of ‘just in case’ in caregiving not only courageous but right on.
Interestingly the ruse was never needed, Patti’s MS dementia prevents her from ever remembering I have lung cancer.
MS caregiving is physically demanding with all the lifting, pushing and rolling. So far, a year later, I’m not too physically affected and can continue. For example, Patti hates the hoyer lift used by staff to transfer her from wheelchair to bed and vice versa. However for a lot of good and ‘safety first’ reasons they need to use it. I count my blessings I can still transfer her from wheelchair to bed using a “hug” or in PT parlance a “one person unassisted transfer.”
Our push and roll outings continue and if anything may be even longer. My recent diagnosis, falling from Stage 1 lung cancer to Stage 4 with brain metastasis, rocked me. Treatments like brain radiation and chemo may have a bigger effect on caregiving than I realize, but then again they may not. Radiation therapy has dramatically reduced brain metatasis symptoms. Even better- side effects have been neglible and our weekly outings increased and I just spent Saturday pushing Patti’s wheelchair around 30+ acres of Pennsylvania Renaissance Faire grounds.
Cheating death, there is a new found urgency to keeping to an outing schedule. Plus, best of all our outings are lung cancer free.
What medical science can or cannot do – Patti’s MS dementia turns back the clock to a time of no lung cancer for me.
Reading comments and chatter on MultipleSclerois.net my heart goes out when reading about an adult child who inherits MS caregiving upon the death of the caregiver spouse.
I totally understand how complicated and emotional the transition to the care facility era can be. However believing in our own immortality as spouse caregivers as a foundation for home care can have consequences that will ripple through time and generations.
Editor’s note: We are extremely saddened to say that on November 11, 2013, Patrick Leer passed away. Patrick was an essential member of the MultipleSclerosis.net community, providing unique insight and perspective as the primary caregiver to his wife, who has MS. His heartful writing continues to reach many. He is deeply missed.