Carol Ennis began her career as a Parkinson’s care partner when her husband, Don, was diagnosed twenty-three years ago; two years ago, Carol herself was diagnosed with Parkinson’s, and her son was diagnosed as well a year later. Carol and Don have developed many coping strategies to meet the challenges they face, from adaptations in their home to how to help one another with depression. You can read more from Carol on her blog, Parkinson’s Perspectives: A Couple’s Story.
“Good to see you again, Don.” the neurologist said as he reached out to take Don’s trembling hand. “Better to be seen than viewed.”
“How’s your appetite been?” “As good as the food.”
“Are you diabetic?” “I’m diabolic.”
And when someone shares their litany of minor complaints Don’s common reply is, “Other than that, Mrs. Lincoln, how was your night at the theater?”
Many who don’t know him well find it hard to understand why this man of mine still has a sense of humor; after all, he has just passed the 23rd anniversary of his Parkinson’s diagnosis. But after 53 years of marriage it is hard for me to imagine him approaching life in any other way. Oh, yes, we have shared many private hours of frustration, discouragement and sadness over the losses and challenges PD has brought into our life. Yes, even he has suffered the effects of depression and takes a daily dose of an antidepressant, along with the meds for PD, congestive heart failure, coronary artery disease, ulnar nerve damage and spinal stenosis.
This former athlete, science & math teacher, woodworker, hunter, fisherman and career submariner, has experienced the loss to PD of his body’s ability to perform and participate in much that brought fulfillment, satisfaction, joy and meaning to his life. I have watched him and held him in those dark and tearful times when he struggles to overcome the depression and its debilitating effects. Sometimes friends say, “If someone told me that I had Parkinson’s I’d be depressed too.” While that is part of the problem, the truth is that the changes in the brain can actually cause PD patients to be unable to overcome the depression alone and this was forcibly brought to our attention on one occasion when it all seemed too much to bear and Don poured out feelings of hopelessness and helplessness. He expressed his fear of becoming a burden to me and our eight children and finally his desire to end it all, even by suicide. It was then that we knew that we could not find the light again without professional help and medication.
These memories are too scary to discuss at length even with each other, for fear that we may trigger a lapse back into that dark tunnel; so we watch for the clues that warn of the darkness ahead i.e. withdrawal, apathy, unusual mood swings, wanting to stay in bed, or not being able to sleep, abnormal emotional responses, lengthy episodes of sadness, lack of motivation and expressing thoughts of giving up, and we bring out the heavy armor: we use humor (plan a “shake ’n bake”) and outings and socializing and prayer and faith and companionship, and service where we can (sorting clothes at the Clothing Bank), we use music and dance (Dance for PD is wonderful!) and playing with our dog, “Boots”, to overcome and avoid entering the dark, scary place where depression tries to steal life’s goodness and beauty.
We have found that getting outside for at least part of each day is helpful. We keep the van supplied with extra meds, snacks, water, a urinal, clothes, a walker and one of Don’s wheelchairs, so we are ready to go whenever we feel the need to escape. A couple of hours at the indoor archery range where Don can target shoot from his wheelchair strengthens his arms; gives him time with others with like interests and gives me a chance to get my hair done, spend some time alone or with friends.
We enjoy eating out and ask that the chef cut Don’s meat in the kitchen. We have used a plate guard at times and we have special utensils and an adult size “shirt protector” if needed. Occasionally I need to help get things onto a fork or spoon for Don and we always share chips and pico de gallo at our favorite Mexican restaurant so that I can load up his chip; then hand it to him.
Allowing Don to do as much as he can for himself and not hovering or treating him like he is helpless is important. He is getting better at asking for help and always lets others help when they offer. Many times a day I watch him struggle a bit; then ask, “Do you need a hand with that?” and then try to accept his response. When he thinks that he can do something that I know he can’t do safely I have to be the one to insist on a reality check and these are hard times for us. Sometimes it is better for someone else to evaluate the situation and step in to help or end the activity. A dear friend, whose Dad had PD for many years, used to say, “Your brain is writing checks your body can’t cash.” I’ve borrowed that line occasionally, and we both understand what that means.
Two years ago I was diagnosed with PD and last year our 42 year old son was diagnosed with PD; this is frightening for our family (PD has not been in either of our families) but I am learning firsthand what Don has dealt with all these years. I have experienced clinical depression for many years and I know that sometimes the only thing anyone can do for me is leave me alone, but most of the time I really need a hug, a short nap; something to eat and a diversion. One of our daughters told me about an easy to remember mental health check to use when things don’t feel just right: H.A.L.T. So I ask myself, “Am I Hungry; Angry, Lonely, Tired?” it’s a great reminder for caregivers and patients alike; I’d just add one more letter, “M” for “Have I/he taken my/his Meds?’”. I am glad that if I had to deal with a chronic disease, it is one with which I have some experience and have gained some understanding of the prognosis. It is a challenge to be both caregiver and patient; we truly are “care partners”. We have been especially blessed that our bouts of depression have not come at the same time so we can help each other.