Caregiving: The Most Challenging MS Symptoms
As a caregiver, which MS symptoms do you find the most challenging to manage?
When Patti’s cognitive abilities started to go south living with MS as a family changed forever. Previously there had been ups and downs with physical symptoms bookending exacerbations but when reasoning and thinking skills start short circuiting it was almost like a different MS.
Our daughter would frequently share that she basically gave up explaining her Mom had Multiple Sclerosis because someone would always say “I know a friend who’s Aunt has MS and it has no affect”.
Loss of cognitive abilities more important became a multiplier of physical symptoms. Patti would continue to try to care for herself but the cognitive short circuiting compounded everything.
The most dramatic and I guess challenging to me was the advent of incontinence. Where some might believe Patti was heroic in trying to take care of herself the bottom line was bowel and bladder incontinence is one thing finding your wife on the floor of the bathroom or bedroom smeared in feces or urine is another. Short circuiting of cognitive abilities became a double whammy to living with MS as a family.
While bowel and bladder incontinence are the more conventional, for women of a certain age menstrual incontinence can trump everything. As a guy I wasn’t even sure how all this worked and I began an intense crash course.
As if finding Patti laying on the bathroom floor smeared in feces or urine was not enough – smeared in blood resembled a TV crime scene. Somehow I was also juggling a preteen who certainly didn’t need the extra anxiety about a looming menstrual cycle.
More often than not after she tried and failed. Not only would the mess need to be cleaned up but Patti herself would need to be showered. For years all we had was a shower chair sitting in a tub which was dangerous to Patti and me. Not including that my clothes would become soiled trying to transfer her safely. After one remodeling we built a roll in shower which improved the safety of cleaning up.
Patti tried against insurmountable odds to care for herself and even clean up after accidents, however cognitive short circuiting often made everything only worse.
Back in our day, malls and stores rarely had ‘family’ bathrooms. Accessible women’s rooms were more abundant but Patti could not support herself with grab bars in an accessible stall and at the same time change her Depends.
Frankly the only mess-less way to change Patti’s Depends was with her laying down on our bed at home with waterproof incontinence sheets. To this day I personally find it odd that adult changing tables are not available in family bathrooms.
If we visited or traveled I needed to bring disposable incontinence sheets or plan to do laundry a couple times a day as I did at home.
Visiting Philadelphia for Christmas 2006 even though we had an accessible room I had to sneak my incontinence supplies into the hotel. Get up before we went out and clean up not only any messes but walk outside to dispose of the disposable incontinence sheets and Depends.
Also nothing affects friends, neighbors or family helping you like incontinence. Add in cognitive short circuiting and ‘fuhgeddaboudit’ if a visitor starts to smell bowel incontinence before Patti is even cognitively aware – you will not see that visitor again.
Our daughter and her friends were collateral damage through all this. Come on now- how many kids are going to revisit after entering a house were eau de toilette or worse is the fragrance du jour.
We briefly experimented with a catheter for bladder incontinence however the cognitive double play ended the experiment. If sitting in her wheelchair Patti would fidget until she pulled the drain hose out of the bag. Near fatally she even pulled out the catheter one night when she was supposedly sleeping.
Like so many MS symptoms you find a way to live with the least dangerous to continue to live with MS as a family.
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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