My Mom lived the last eleven months of her life with right sided paralysis caused by a bleed out in a brain tumor she didn’t know she had. She could no longer walk, get out of a bed or car independently, bathe herself, or even wipe. There were cognitive changes and her communication was severely limited during that time. It was heartbreaking. My Dad was by her side for all of it.
I didn’t understand their relationship. I chose a different dynamic for my own marriage. But my ignorance of how or why my folks stayed together is immaterial. There was love there. I saw it and felt it, even if I didn’t understand it.
I promised my Dad, after my Mom died, that I would be there for him as a caregiver and advocate if he ever needed that. The same way he was there for my Mom through those eleven months of what a brain tumor does to a person.
He brought in extra care when he could no longer manage himself. He negotiated hospital systems that are not easy to negotiate even for those of us who work(ed) in them. He argued with surgeons and demanded basic care for my Mom when basic care seemed like a lot to ask for.
Caregiving is exhausting. Advocacy is tiresome. Both are absolutely necessary in serious illness.
To be a surviving spouse is a tough, tough road. It is lonely and quiet and empty and confusing. The surviving spouses I worked with as a social worker taught me that. To see what happened when they themselves came to the tipping point of aging, when their needs changed, sometimes slowly, sometimes rapidly, without a caregiver or advocate by their side moved me. I never wanted that for my Dad.
My Dad was a guy who needed to be in control. And he hated authority. The irony of his own authoritarianism was not lost on any of us who knew him. Whereas my Mom received care in a gracious manner, was pleasant, helpful, and patient, I worried that dependence and my Dad were not a good fit. Certainly, the structure that most of our systems that accommodate older adults require — hospitals, nursing homes, assisted living communities — was not something that my Dad would ever adjust to easily.
We talked about this often, my Dad and I. Joked about it, too. HA HA HA! Dad in a nursing home? No freaking way! “You should live with us,” I told him. He agreed. Gratefully, so did my husband. We all agreed to something we had absolutely no control over. How naive we all were. How wishful.
I imagined the perfect death, somehow, full of meaningful conversations and a hospital bed somewhere (I never quite got far enough in my dying Dad fantasy to pinpoint where that hospital bed would be in our home — living room? guest room? our room?) and grandchildren close by, fully aware of the sacred transition that was happening in their midst.
What really happened did not look at all like that fantasy I had conjured. What really happened was sudden acute changes in my Dad that both shocked and terrified those who loved him. What really happened was eight weeks in a hospital fighting for basic care most of the time. What really happened was a trial discharge to my home and a re-hospitalization just 40 hours later, but not before tears fell and I heard the begging pleas of my 81 year old Dad to be allowed to stay, something that was simply not possible given the severe change in his needs. What really happened was an unexpected move to an assisted living community that my Dad hated. What really happened was not at all what I imagined would happen.
Most of it sucked spit.
In the end, after advocating for a palliative care consult with siblings and doctors, I got the call on a Monday afternoon that my Dad was more appropriate for hospice, not palliative care. Cue the tears. Again.
Things changed quickly when the decision was made to stop the cycle of health care hell. There is a liberation, a familiar liberation I felt with the end of my daughter’s cancer treatment, of saying enough. I knew from the many conversations my Dad and I had had about his health care in the past decade to know that he was not living the life he wanted to live. He hated all of it — the lack of control, the confusion, the food, the new home he called a “warehouse.” It was not the life he wanted for himself.
But he still needed an advocate and he needed more care than he ever had, now no longer walking and bed bound. Hospice should be easy, but it isn’t always. There are many instances of having to advocate and fight, literally argue, for more medication, stronger medication, different medication. You think you will lose your damn mind in the process of having to justify the need for something that seems like basic human compassion.
But you don’t, you can’t, because you made a promise and your Dad needs you. He needs you more than he ever has. So I did what my Dad did ten years earlier for my Mom — I argued and pushed and advocated and did not give up. “It feels like I am shouting into the wind these past three days, but I am going to keep shouting until someone hears me,” I told the hospice nurse. Fifteen minutes later she was at my Dad’s bedside and finally, finally, someone understood my concerns. She acted, she cajoled the doctors, the proper medications were ordered, albeit on a prn basis, which required one last advocacy push a couple of days later to straighten out.
I am tired. I am worn. My Dad is dead. He no longer needs a caregiver or advocate. I kept that promise to him, just as I told him I would.
These words are written not to solicit kudos for what a fine and loving daughter I am, but as a cautionary tale. Every person you know and love who experiences serious illness requires an advocate and a caregiver. You might know this, you might not. You might have experience in health care, you might not. Be prepared. Trust your gut. Have a plan. Know that your loved one needs you like never before.
When all is said and done, none of us want to live with regrets, either the person who is dying or those of us who will survive them. I am so grateful I was able to help my Dad in his final months. I am very sad it was as hard to do as it was.