Dear Amanda.
On Friday’s Call with the Good Man Project Publisher, Lisa Hickey, I dialed in and listened to the most amazing conversation between men talking about expressing their feelings. About halfway through, the conversation turned to the emotional crisis that happens when one finds out one is about to die.
The men talked about the relationship gap that existed between them and their fathers, and how angry the dads became at the end of their life. I just listened. I’ve been through it. For children who are also caregivers, the emotional roller-coaster is exhausting.
At the very end, you, Amanda, were the only female voice to enter the conversation. You thanked the men for their honesty and insight. Why? Because you’re currently dealing with an angry dad whose illness is terminal. My heart went out to you. This is for you and all the sons and daughters out there.
My father
Before my dad died from an embolism and pneumonia, he’s suffered a series of mini-strokes. We knew because he became erratic and paranoid, sullen and angry. My mom couldn’t handle him at home so he went to a nursing facility. I’m not sure that made him better or worse. His anger remained, fueled not only by his awareness of his dysfunction but also by his incarceration from his point of view, to an institution.
It was during a visit that I understood what my mother had been going through. Dad’s most important priority was his family. He could blow-up at small things without warning. However, the really important things brought out his understanding and empathy. It didn’t matter whether I was right or wrong, he was on my side one hundred percent. He was proud of me and showed it – until this day when he couldn’t.
Cutting the cord
I was married with three children, the director of an art center, and just pulled off the very first community flower show. I brought him pictures of the kids and the flower show. He never looked at them. Turned his head away. “I don’t care. Get me out of here. They’re killing me.”
For the first time in my life, my father, my rock, my biggest fan, couldn’t be there for me. Worse, he might never be there for me again. A lifetime of unconditional love blocked by the ravages of disease and his inability to be in control left me in tears. I felt I had lost my dad while he lay in front of me.
That day changed me forever. He, one of the lucky ones, survived his illness and had many good and family filled months before he died. I relished our remaining time together, knowing it might be brief. The hard part was over. The cord had already been cut.
My Stepfather
Several years later, my mother remarried. My stepfather loved her and her grandchildren. Her children, me included, not so much. We always remained cordial and learned to live with his idiosyncrasies. During the first ten years of their marriage, they traveled the world. They were a handsome couple and enjoyed their adventures. Then he slowly lost his sight to macular degeneration and in his nineties, his health.
With each decline, he became more angry and frustrated. He hated not seeing. Hated feeling weak. He hated not being in control. Nothing would calm him for any length of time. And, as karma would have it, they both needed assistance and they moved across the street from me. I became their primary caretaker. Days were filled with doctor’s visits around meals. Either he had an episode, or she did. We were in an out of hospitals on a regular basis.
When I couldn’t listen to his fury anymore, I announced that I wouldn’t stay in the room if he continued. He started yelling again. I walked out. It only took a few times before his behavior changed. The last year of his life we became closer as he calmed down. His quirks still make me laugh. Although blind and wheelchair-bound, he always knew what time it was, correctly predicted the weather, determined the speed at which I drove, and noted my every expression of exasperation, “I saw that!”
My Mom
After he passed, I took care of my mother. By this time, I had learned, that if I gave her a choice, she’d do the “right” thing. For example, “Mom, use the walker or take the chance of falling, breaking your hip, and spending six weeks or longer in the hospital.” She’d screw up her face. Sigh. Make me wait for an answer. When she was good and ready, she picked the walker.
Mom could become impossible and take her frustration out on me. I couldn’t walk away, because she couldn’t be alone. My response, “Mom, I’m the child that’s here, if you want to complain, which of your other three children do you want to call?” I’d say their names and she’d say, “That one.” I’d dial and hand her the phone. Her face brightened, and her first words were, “Hi. How are you? When are you coming to visit?”
Anger isn’t about you
Anger born of fear, frustration, illness, and aging is understandable. Losing control and strength is a loss of essence. By understanding where anger is coming from, I knew it wasn’t about me. That awareness saved my emotional soul. I could try to address the problem, relieve their boredom, stimulate their senses, and counter outbursts with “I love you too.”
And, perhaps most important, something that I’ve learned by being present at too many “last months,” is touching. Reaching out to affirm, that no matter what, they are still human and you are still connected to them. Hold a hand, stroke an arm, give a kiss, and/or let the “patient” rest their hand on yours. I’ll never forget the one thing my mom did when I helped her out of her chair — she changed my assist into her hug. She’d put her arms around me and say, “Thank you. I love you.”
Endings are special
My husband, dad, step-dad, mom, and sister are gone, as well as my in-laws, a brother-in-law, and sister-in-law. I lost my fear of death by learning to focus on the person, give them the best quality life I could. Through each experience, I found I became increasingly open, honest, and patient.
I encourage you, Amanda, and everyone else dealing with this time in a loved one’s life, to diffuse the anger anyway you can because these end-of-days moments, of being there, are ones you’ll never forget and always cherish.
Fondly, Carol
For more information on Caregiving and Caregivers, check out Parent/Patient Care
If your parent or loved one has to go to the hospital, check out Parent/Patient Life History form.
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