In September 2011, I was kind of just getting the hang of the single mom thing. My divorce was finally final. I had switched back to my maiden name and joked I was the 2.0 version of my original self. Things were going well. Woohoo! Pain is behind me now I thought. Now I can enjoy my life. Yes!
Then, I learned my dad had been admitted to the hospital. He told me he was there for heart and kidney failure and his organs were shutting down. Fearing this could not be a good thing, panic set in. I later learned he had a life threatening infection that kept getting worse. How could this be? Two days prior he said his leg was itchy and now it was a serious infection? Immediately, I freaked out. I waited at the top of my driveway for my kids buses and shuffled them off to their dad’s so I could get to the hospital where my dad was 2 hours away.
He spent 3 confusing weeks in the hospital. The infection, cellulitis, finally was able to be controlled after they started temporary dialysis. His kidneys never really recovered after that. We learned that due to his drinking and ensuing hypertension that the kidneys had already been suffering prior to this event.
One day, as I walked into the hospital, I heard two nurses talking about my dad outside his room talking about how confused he was. I became confused. “What are you talking about?” It turns out, he was expressing confusion about where he was and why he was there. The day before he knew, but today he was disoriented and confused. The words Power of Attorney came up for the first time ever and somehow, it was decided that I would serve in this capacity. The confusion seemed to wax and wane. My dad eventually got to go home with caregivers checking on him.
Multiple doctors and specialist visits later they still didn’t have a great handle on what the memory loss was from and the kidneys never fully recovered. Preparations were made for him to start dialysis full time. Kicking and screaming he agreed to begin dialysis close to where I lived so that I could go with him to medical appointments and help manage his care. He had a beautiful condo on a lake, and that’s where he wanted to be. “All my life I dreamed of owning a place on a lake, and I worked so hard and now I have one” he would say. Those words were crushing knowing that I was trying to make arrangements for him that would allow me to manage my children, my house, my career and him all at the same time. But these arrangements were taking him away, at least part time anyway from an opportunity he had worked for and dreamt about his whole life. Crushing.
We entered a period of time where he stayed at my place during the week and then drove himself to his place during the weekend. Whenever he got confused, he drove there too. One day, he left my house for the hardware store and 12 hours later, after calls to neighbors and the state patrol, eventually was located at his place. Another time he made 4 purchases at the same gas station over several hours because he couldn’t remember what he was doing. Yet another time, he tried to guide us to his “secret breakfast location” only to realize he forgot where that was. We could laugh off some things, and be frightened by some others. But mostly it was just sad to see such a profound change in a formerly high functioning man. He had been bright, funny, helpful. A hard worker and a leader. He had been who I had gone to for so many things. He was there for me and was always willing to help. Now the tables were turned and this was definitely a new experience. I was not prepared for this.
I began to be really afraid for his safety when he began leaving empty pans on my stove with the burners on. His doctor felt he needed more socialization and reccomended he go to an assisted living facility. Again, kicking and screaming, he and his dog Tati moved into a facility.
The burden of caregiving was somewhat lifted. No longer would I have to sort meds, do laundry for, arrange transport for my dad to and from dialysis. It was a relief in a lot of ways, but I felt guilty that I hadn’t been more able to manage him at home. I still fielded numerous telephone calls from providers and accompanied him on doctors appointments and managed all his finances, a heavy load on top of all of my responsibilities for my “own” life.
Eventually, his car and boats and belongings were sold. His condo on the lake was the last to go and the hardest to let go of. It still makes me sad to think about how hard he worked for a goal he got so little time to enjoy. But,those experiences forced me to examine my priorities and my dreams. I wanted to travel, and I wasn’t going to wait for a someday that might not happen to do the things I wanted to do. At least I had learned this much from these experiences. That and a whole lot of medical and financial terms.
My dad lived in the assisted living facility for just under three years. The winter before he left, he started routinely having to go to the hospital from uncontrolled bleeding from his fistula, the dialysis port. Seven ER ambulance trips, multiple blood spurting everywhere episodes later, he eventually had surgery on the port. Add in hospitalizations for pneumonia and AFib episodes and I was beginning to know the staff at St. Mary’s ER too well for my liking. My dad was starting to experience delusions too. I worried that soon things would get worse in terms of his mentation. I dreaded when he wouldn’t know who we were anymore.
Last summer, he was hospitalized for breathing issues when it was determined he had fluid compressing his lungs. It was during this hospitalization that he was diagnosed with end stage liver failure. 6-12 months life expectancy the doctor said as I burst out crying and had to leave the room. Part of my dad was already gone and had been for a while but this was too much to handle. “How am I going to handle this? I can’t do this!” I thought as I sat in the tranquility garden on the hospital grounds in a rocking chair listening to a waterfall. It was in this garden that I remembered an old radio interview I heard where someone was recounting a story about being diagnosed with an incurable disease and remarked that their prognosis was the same as every one else’s: they were going to live until they died. The lessons I had just learned on loss and vulnerability earlier in the year were given to me at the exact right time. How was I going to do this??I had my answer. I was going to take things one day at a time and make the most of the time I had left with my dad.
I decided, against some important people’s advice, (including my mother’s) that I would move my dad back home with me. It would be a lot of work, but I would hire help. Besides, I’d already moved his cherished dog with me as he could no longer care for her. I kept thinking, if I was going to die, I’d want to spend my last days with the people and things I love around me and that was the deciding factor for me. The sacrifice was worth it. Besides, with the new diagnosis of liver failure, came a med adjustment and my dads mental state vastly improved. No more delusions and his memory was much improved. Perhaps his ailment was not a dementia related issue after all, but rather undetected liver failure all along.
Then came the tough, tough, conversations. I had to use all my good social work skills to ask questions associated with the end of someone’s life. From the practical to the thought provoking, we discussed them all. When asked what else he wanted to accomplish in his life he replied he had done everything he wanted and only wished to spend more time doing fun stuff and going fun places with his grandsons.
So, off to California we went. The four of us, to visit my brother for several days. I finagled an airport trip with my two kids, my dad, his wheel chair, his walker, his CPAP machine, his portable oxygen concentrator and all of our luggage, with no issues! Talk about empowering the independent woman! Yes! I am woman, hear me roar!
The trip was everything we all hoped it would be. It’s safe to say I think we all wanted to run away to the San Francisco Bay Area. Actually, I still do.
Shortly after moving in and settling into a routine of caregivers being in the home my dad’s health got even worse. Palliative care enrolled and his doctors reccomended he stop dialysis, yet he stubbornly persisted. “I need to live long enough to see these boys grow up” he would say referring to my children. Knowing that he would not broke my heart. They adored him and the feeling was very mutual.
Eventually he ended up back in the hospital again and it was time to make the really tough decision along with the doctors. He would enter hospice and the dialysis would stop. He body could no longer tolerate it even though his spirit wanted to hang on. If stubbornness and determination were all it took, he’d still be hanging on.
I was devastated to put it mildly, but relieved at the same time. It’s funny how you can have contradictory feeling simultaneously. I used to call those double dip feelings when I was working with little kids or more than one “flavor” of feelings at a time. I’m sure I had a lot more than double dip feelings that day.
My dad returned home with hospice care. Everyone came to say their good byes. We worked feverishly to finish a memory book with my dad recounting his life story. I learned stories I hadn’t heard before, including some I had to check out the veracity of. My dad seemed motivated to finish the book, and I remember dreading the end because there was nothing left to work on or say at that point. JJ avoided the whole situation. It was just too painful for him. Jaxon spent as much time with his grandpa as possible.
We had the chance to say our goodbyes to each other and I was able to tell him what he meant to me and he was able to talk about his hopes and dreams for his children and grandchildren. It was really beautiful and poignant and sad and depressing all at the same time. Lots of feeling flavors in those conversations.
I began to steel myself for his last breath as he slipped quietly into unconsciousness. I would try to imagine what that would be like. Nope, nope couldn’t do it! Didn’t want to do it. Couldn’t face that moment. I tried to prepare my kids too. A particularly devastating moment was when Jaxon couldn’t get my dad to wake up to talk to him. “But I want to talk to him!” He exclaimed. By a small miracle and on account of Jaxon’s own stubbornness and determination, my dad became alert enough to tell Jaxon he loved him.
In the end, my dad passed away in the night with only the caregiver in the room while the rest of us slept. When she woke me to tell me, the first thing I noticed was the look of absolute peace on my dad’s face. After five years of struggle though illness, he finally looked peaceful. It was such a stark contrast to how sick he had looked and how accustomed to that I had become. Again, I was flooded with feelings.
I was once again getting practice dealing with and sitting with the pain of difficult emotions even though I didn’t ask for said practice. Damn, these growing opportunities suck sometimes! Actually allowing yourself to feel difficult emotions is not an easy feat! But I practiced my new skills of self compassion and tolerating difficult emotions while I rode the grief tsunami. That’s a real thing actually, I googled it to find help when that’s the only way I could describe how I felt. The toughest part was remembering all the times before my dad got sick and what a wonderful dad and grandpa he had been. My new skills and my support system anchored me as I worked through the sea of grief.
I’m not sure my ride on the tsunami is over yet, but life is slowly returning to “normal” whatever that means. Until the next hard lesson that is…