It is with a heavy heart that I must report the death of my father, Gary Deer, Sr., after a long and well-fought battle against Parkinson’s disease. He passed away during the early hours of July 1 at Hospice of Dayton. I was at his side when he died, after more than 12 days in the hospice facility. If you want to know my father, at least as a snapshot of his life, please read the piece I wrote about him that was published in the Greene County News – The Xenia Daily Gazette and the Fairborn Daily Herald.
For more than 5 years, I took care of my Dad, first at his home, then, for most of the last year, at mine. It was a full-time job, requiring everything from medication maintenance, to taking him to the bathroom several times a night, and finally dealing with the severe level of terminal agitation he was experiencing. It was challenging, painful, exhausting, and the most rewarding thing I’ll ever do. It was also the hardest thing I will ever do. It was agonizing to watch such a strong, independent person gradually deteriorate before your very eyes, painfully struggling even to do something as simple as eating a spoonful of cereal. My struggle was the grief I was experiencing the entire time, often without realizing it. The title of this piece, and the podcast, “A Deafening Absence …” comes from how it feels to me that he’s no longer with us. It’s what I say when people ask me how I am handling his death – “His absence is deafening.” But more deeply, it stems from the loss felt over time as the grief of losing him, little by little, was overwhelming me.
Most people don’t have to grieve the loss of a loved one until after that person has passed away. But caregivers who look after someone with a degenerative disease like Alzheimer’s, ALS, or Parkinson’s disease, may face grief in a very different, and sometimes far more painful, way.
A psychologist will tell you that, under normal conditions, people dealing with grief will progress through a number of stages as people deal with it: Denial, Anger, Bargaining, Depression, and, finally Acceptance. We generally get hung up on one or more of those stages along the way until we can emotionally work through it, either on our own or with professional help.
I first learned the science behind the concept of grief in high school and college psychology classes. I had experienced grief like most people – by dealing with the death of a family member, loss of a job, whatever life tossed my way. It wasn’t until I was caring for my mother in the last two years of her life that I finally learned that the stages of grief manifest themselves in more unusual ways for someone whose loved one is gradually slipping away.
In my experience what makes grief different for a caregiver, is that with every single decline in the progression of the disease, the grieving process resets itself. As your loved one suffers advancing physical and cognitive decline, your understanding of their status has to be reset. For example, early on, he could no longer bathe himself, while later, even taking a drink from a cup was a major challenge. So you say to yourself, “OK, this is how it’s going to be now,” once you’ve accepted some level of decline.
Then, five minutes later, you notice something else that’s gone downhill or altered in some way. There is no set rate for when to expect these changes in your loved one’s health and they can come on rapidly. That means you barely get the chance to wrap your head and emotions around each stage of change before you’re dealing with three more simultaneously.
Grief sets in for each decline because you’re realizing that they’re getting worse, and with these types of disease, there is no happy ending to the story. It’s a constant state of adjustment and acceptance that is exhausting both mentally and emotionally. All of this grief adds up to what is known as “anticipatory grief,” which is exactly what it sounds like; you’re mourning the person as the disease progresses, anticipating their eventual death.
None of this is generally a conscious thought process. By this point, I think I understand it better and that’s at least something that’ll help me cope. But until I realized all of this, I was just angry all the time. I was (and still am sometimes) frustrated at why dad couldn’t remember how to sit down in the chair properly, or when he suddenly couldn’t use a spoon, but 10 minutes earlier it hadn’t been a problem. It’s a constant state of change that will tax your emotions and your understanding of the illness, or illnesses.
In my case, the difference between caring for Mom vs. Dad is that my mother’s Alzheimer’s disease removed any expectation in my mind of her being cognitively aware enough to help us to assist her better. She had no clue what was going on around her, so it was slightly easier to adjust because she didn’t push back. Dad’s mental state was usually pretty good, so he pushed back. And I kind of get it; it’s tough to spend your life being the one taking care of everyone else and suddenly you feel like a helpless burden. I try to put myself in his position and be as empathic as I can about it all.
He didn’t like the restrictions I had to place on him and would push back about them. He didn’t like not getting up without help when he began to be a fall risk or not having coffee after a certain time of day because the caffeine and his meds kept him from sleeping and aggravated his Parkinson’s symptoms. But as his condition changed, we tried to counter the new phases with alternative ways to keep him comfortable and safe, while dealing with altered symptoms.
Making that stress even more difficult is what I call ‘the rally;’ those fleeting moments when the patient shows some level of lucidity, normal behavior, or activity. Sadly, the rallying moments never last long and can make you feel a sense of false hope that they will improve. Some people get sucked into a level of hope that one crushed, is a little like learning of your family member’s terminal diagnosis all over again. You experience the same restart of the grief.
For me, the constant second-guessing of how I handled his care still hasn’t let go of me. It’s hard to wonder, “what if I’d done this instead of that,” or, “maybe we went to hospice too soon,” but, in reality, I did everything I could do. I consulted experts and people who know us and his case. I did everything I could to see to his care.
Needless to say, this constant emotional and mental roller coaster can be seriously destructive to your health as the one trying to keep ahead of it all and manage care. Between the constant status changes and anticipatory grief, it can really take a toll on your own well-being and some caregivers eventually suffer a physical or mental breakdown (or both).
If you’re struggling with grief, seek out professional help. There are countless free and nearly-free programs available to help you manage grief, anticipatory, or after the loss of a loved one. But know this – your grief as a caregiver will be different than someone else’s who may have lost a family member. It’s not the same when you’re the one who was there day in and day out, watched helplessly as your loved one declined, and then had to deal with the emotional fallout after they die. Be patient with yourself and let yourself grieve. Don’t make big decisions or major life changes for some time after – generally experts recommend one year. Give yourself time to adjust to the changes and look after yourself. And if all else fails, Get Up and Get Out There. You’ll be OK!