It was with great sadness this week that I learned of Patrick Leer’s death. He passed away at home in the presence of his daughter, Megan, after battling unsuccessfully lung cancer with metastasis to the brain. Throughout his journey, he remained a fighter, keeping a positive outlook and determined not to let the disease win, but win it did on November 11.
When I first decided to write my blog, it was actually with the expectation that no one would likely read it but family even though I hoped that maybe a few other caregivers of family members with MS might stumble across it and we could connect through sharing our experiences. Patrick was one of the first to make that connection with me. He had been caring for his wife, Patti, for over twenty years after she woke up one Thanksgiving morning unable to walk. Their’s was a sudden entry into the world of MS and his wife progressed in her condition until for her safety, she had to live in an assisted living facility. She developed MS dementia and may not have been fully aware even of her husband’s condition and eventual passing. I remember Patrick sharing with me early on that caregivers often die before the one they have cared for does. I also remember when he first wrote about having cancer his commenting that he had become a statistic; a caregiver with a serious condition that might take him before his loved one.
Reading about Patrick’s struggles and the impact it had on his ability to care for Patti brought home to me once again my fear of the same. I often worry that I’ll have a heart attack or stroke and not be able to care for Lynn any longer. Cancer is not as prevalent in our family but heart disease is and I’m sure I’m high risk for it. I rarely get sufficient sleep; I eat to stay awake so I’m gaining weight again; and I get no exercise so even the slightest exertion now makes me short of breath. All are high risk factors for heart disease. I keep thinking that I need to get on my treadmill each day for 30 minutes or I need to cut back on eating so many snacks or I need more sleep but I’m honestly at a loss on how to do any of those things.
I keep thinking I’ll get to bed earlier but I seem to get there later all the time. I often am so sleepy by 4 pm, that I fall asleep at my desk. Some days I actually lie in the floor for a few minutes to take a nap or even lay on the bed and take one for an hour. Those precious extra minutes keep me going till I can really crawl into bed around 2 a.m. each night. I try hard not to nap though by snacking on things that will give me bursts of energy but which also are high in calories. They help me keep going but my clothes are sure getting tighter. Then there’s the issue of exercise. The only time I could change into clothes, be able to exercise for 30 minutes, and change back out again without being interrupted is around 1 a.m and that’s too late to do something that would just wake me up. These things just sound like excuses to not take care of myself but in reality, they are choices I’ve made to take care of Lynn and our needs instead of me.
My children are worried about what will happen if I can no longer care for Lynn. I understand their concern because in reality none of them could quit work and care for him; much less two of us. They would certainly want to do so but they have to work and don’t have extra money to hire a caregiver so care could be provided at home. Therefore, all our possessions would need to be sold so that we could go into assisted living. Lynn is convinced he would die if I died first because he would not want to go on. A large part of that is because we’re close and he would grieve my loss but the other part is he knows in assisted living he would not get the level of care that I give him and he would likely die from complications due to that lack of attention before many years.
It’s really a shame that there is no assistance for caregivers that can come into the home and support them so that in the end two don’t need to be cared for instead of just one. Just another short-sighted aspect of our medical care.
Nuff said on this depressing topic but in closing I do want to say that I truly admired Patrick. He was a dedicated husband and father for many, many years when men with less integrity would have rode off into the sunset. I’ll miss you Patrick …. but not nearly as much as Patti will even though she won’t know why.