The Few, the Proud, the MS Spouse Caregivers
Last updated: October 2022
As a MS Spouse Caregiver the whole taking care of yourself mantra borders on being an oxymoron.
If your partner has mild MS, maybe it’s possible, but that has never been our story since Thanksgiving 1989 when I held our 18 month daughter in my arms as Patti was hospitalized for her first major MS exacerbation.
I suddenly had two someones to care for full-time.
Caregiver health is not always a reflection of not taking care of yourself anymore than getting MS is.
Soon I began having Cluster Headaches. Decades ago they were nicknamed ‘suicide headaches’ as some experts have suggested that it may be the most painful condition known to medical science.
Years of misdiagnosis as sinus headaches and later Migraines did not help. Multiple Sclerosis is a rare disease with a prevalence of 1 out of 750. The chance of Cluster Headaches on the other hand is so rare the prevalence is 56 out of 100,000.
Dealing with pain
I took care of myself by going to our cellar which I had arranged with room monitors to listen to Patti’s and our daughter’s room while I screamed into pillows until I awoke on the floor passed out from pain. Since I needed to be able to be instantly alert to respond to Patti or our daughter, medications were not an option.
Fortunately duration of headaches was brief from about 20 minutes to a max of two hours and my episodes settled into a routine of recurrence every 14 months, usually lasting about 90 days.
While passing out from pain was frequent it was not the cloudy drugged sleep of medication which would have impaired my caregiving. Fortunately with few exceptions my cluster headaches attacked shortly after falling into REM sleep. Once or twice I was knocked to my knees in public.
Nothing ends without learning
Nothing ends without learning. Empathy for pain in others and a window to better understanding life altered by disabling symptoms are lessons learned from a brain writhing on a corkscrew. You drag yourself off the floor and get back to taking care, remembering above all that you can get back up. The spouse with MS rarely has the choice.
The physical aspects of caregiving
Early on I had surgery to repair herniated groin muscles I had torn lifting Patti’s scooter in an out of our station wagon. Heavy lifting while critical to MS caregiving can be helped with machines and assuming you have the money to buy them.
In 2004 I began the South Beach Diet and lost 50 lbs in 6 months which helped my back immensely for the more physical aspects of caregiving.
Across the decades of caregiving, I’d guestimate I’ve pushed Patti’s wheelchairs at least 5,000 miles (8,000 kilometers). Not getting any younger and with my back aching more and more, in 2010 I joined Planet Fitness.
Hey athletes train their bodies just to play games, spouse caregivers need their bodies.
Long-term MS spouse caregiving
In Caregivingly Yours, MS Caregiver I was guilty of dully sharing the statistics of risk in long term MS Spouse Caregiving.
'Stress diminishes the immune system and increases my chances of cancer and chronic illness, shortened life expectancy and all that stuff.' Sharing that I was diagnosed with lung cancer 16 months ago (22 years into MS spouse caregiving) likely gets other caregiver's attention.
So 6 weeks after recovering from lung cancer surgery what did I do? Where others might take back off, I pushed Patti around an island in the Susquehanna River.
I pray your partner's MS remains forever mild. If not welcome to the few, the proud – MS spouse caregivers.
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.
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