Kathleen's CaregiverStory

Hello, my name is Kathleen and my spousal caregiver journey began in 2022.  My husband Bill was 6 months into retirement when we started to notice that at times, he would slur his words.  Not overly concerned at first, but then it got worse.  We started paying attention to what he was eating and drinking, thinking something was not sitting well with him.  We mentioned it to GP, and she couldn’t think of any reason for it either.

As the days and weeks went by, it got worse.  Then came the not being able to pronounce some words.  Off to the emergency room to make sure it wasn’t something life threatening.  They sent us to the stroke clinic thinking it was a real fast way to see a neurologist.  The Stoke Clinic told us it’s not a stroke…..have a nice day.

Back home, where Bill hit the internet looking for help.  In the meantime, he went nowhere without me.  I stayed close in a social setting, because at any given moment his speech could fail him, and I would just seamlessly take over the conversation.  Before long we just stopped interacting with nonfamily members because he was embarrassed.  On the home front, we were trying to reassure his family that he wasn’t day drinking because he was having difficulties with retirement.

His sisters would call if they were out and he got worse, then back to the ER or the GP.  Then his eyelids started drooping, but not all the time.  Then he mentioned his arms felt heavy.  Back to the doctor.  One of his sisters had a person at a different local hospital so we went to that emergency room.  They sent us back to the Stoke Clinic and once again we were told it wasn’t a stroke….thanks for coming.  We were both afraid and angry, not because they didn’t know what was wrong, but because there was zero help.  Not so much as a suggestion of what direction we should go.

As a caregiver, you need to stay positive and keep your charge from falling into despair.  So, while I’m panicking on the inside, I’m trying to be positive and calm on the outside.  Through all the symptoms that were getting worse, and the new ones popping up, the feeling of hopelessness, the added laundry because now he was having problems holding his bladder as the small muscles were being affected, I kept up a nonchalant attitude trying to drown our fears.

Next came the mealtimes were he couldn’t eat certain things because he couldn’t swallow them.  So now there’s the not eating properly and the weight loss from that, not being able to hold his head up without holding it with his hands.  Laying in bed each night, afraid to sleep to deeply because his breathing had changed…I didn’t want to not hear if he stopped altogether, and around and around and back to the doctors.

Finally, we were in the Ottawa Valley, at our son’s, for a get together.  While I was keeping the kids informed, I was also downplaying the extent of the problems….sparing your children grief that they can’t help with is what parents do, right?  While we were there, Bill swallowing became almost nonexistent.  Our son, who works in healthcare, took him to a local ER and finally, someone helpful.  Within the week we were at an appointment with a Neuromuscular Neurologist who, funny enough, specialized in MG.  We came to find out that Bill was in a full-blown crisis and likely wouldn’t have survived much longer.  Into ICU for 5 days.  I opted to stay at our son’s this week so Bill wouldn’t worry about me being on my own in Ottawa.  Three hours, round trip, a day to visit and learn about this disease we never heard of but that has just become our lives.

Medications and new eating restrictions and habits to learn.  More laundry as his body became used to the meds.  Being ever so watchful, still, because sometimes the symptoms hit before he felt them coming on, and I would tell him to take his Mestinon, our life saver.  Always, ever watchful, because if things went south, I didn’t trust the local hospital to save him, so that meant a long drive to the nearest hospital that could help him.

Staying positive, when our plans for retirement took a 180-degree turn.  Being positive when he’s having a bad day, staying close when he naps.  Planning life around his IVIG treatments every 3 weeks and the 6 hr drive to his neurologist every 3 months.  Driving most places because diving is one of the activities that sets him back a day to rest.  Always, always watchful to be on top of this disease.

As the Neuro says “the beast is under control”.  Life must be lived, so we plan our trips around his treatments.  I make sure he always has enough meds, pack extra clothes when we go somewhere and reassure him that the accidents are not important and easily dealt with.  Stay positive, even when all I want to do is sit and cry.

Things are going well, and we take advantage of the time.  To make as many memories as we can, while we can, but, always watchful, because we don’t know when things will get worse and life with MG will