Dear Friends,
My Dad’s physician of over 25 years informed me last week that my Dad may not make it through the week. He stated that he would be sending him from the hospital to a nursing home if he made it through the week, and that he would never be able to go back to his assisted living home. He had checked on my Dad during the height of his recent pneumonia and said he was confused and couldn’t even stand up. My Dad lives in Stuart, Florida in a nice assisted living place. I called my Dad immediately. As I spoke to him, he seemed depressed and was talking about seeing me next in heaven. Through the phone, I heard the caseworker ask if his cemetery plot was picked out! She wanted to speak to me, his healthcare surrogate, to be sure. So insensitive!
Needless to say, my wife, oldest son and I got on a 6:00 am flight the next morning. We were heading down to help figure out whether his physician was correct in his assessment. I had called the nurses on the floor after hearing from my Dad’s physician and she had said my Dad had a full day of tests and was exhausted when his physician came to examine him. The question in my mind as we flew down worried was “Did his physician make a quick judgement of his condition when he was at his worst?” When his physician examined him that night did, he truly understand my Dad’s health, his positive outlook and his desire to live?
Before February of 2020, my Dad had been independent and enjoying his life. One day, he had come out of Macy’s carrying too many things and should have been using his cane. He had tried to open the car door to put his clothes in the back seat, tripped on the curb and fell. He had hit his head and cracked a few ribs. An ambulance had come and he had been taken to the nearest hospital.
This fall was the start of me becoming my Dad’s medical advocate. I was his healthcare advocate as stated in his will, but I had never really thought about what this would entail. I guess I should have learned more about what this meant. As I began calling his physician, who became a so-called concierge doctor 4 years earlier, I began to understand how important a person’s healthcare advocate is and how serious the responsibilities are.
To begin with, I found out that my Dad’s concierge physician had no privileges at the hospital my Dad would typically be taken to from the independent living home he had been in for the last 3 years. This was a shock to me! How could my Dad be paying for a concierge doctor annually who could not help him when he needed him most? His concierge doctor was very hard to reach and had an office receptionist and a nurse that took and returned most of our calls, unlike the way concierge medicine is practiced in South Bend.
My wife and I had to fly down to Florida, during COVID, and were only able to see him through the window of the rehabilitation clinic he was sent to for a 2-week recovery. His physician informed us that he would not be able to be independent and needed to move to an assisted living facility. This was a big ordeal, but we found a place and moved him.
My Dad also got COVID a few months later and was back in the hospital. However, this time he was sent to the hospital where his physician had privileges.
Unfortunately, after having the fall and COVID, my Dad dropped from 180 to 140 pounds. I flew down to take him to his physician’s office for an evaluation. I had been talking to my Dad every night since February, and he was sounding weak, physically. He couldn’t walk with his walker more than a few feet. He sounded upbeat, but I was worried about his weight and weakness.
After driving him to his physician’s office, I sat in the waiting room. I was wondering what the doctor’s assessment would be for my Dad. He came out, sat down and informed me that he would not make it much longer. He was weak, had chronic heart failure, and his kidneys were failing. I looked at the doctor, informed him that he had little understanding of who my Dad was and how strong he could be, but he needed a plan. I informed him that my Dad had a strong will and just wanted a plan to improve his strength and endurance. The physician looked at me like I was a typical family member in denial.
His physician was wrong! Over the next few months, my Dad having physical therapy 2-3x’s a week (which we monitored weekly) regained 20 pounds and improved his strength and walking distance. A few weeks ago, almost 2 years later, we flew him up from Florida to our home for a week. He was able to go to the Billy Joel Concert with us.
Jumping back to the present, we are flying back to South Bend today, several days after I was told my Dad would not live through the weekend. We were in the hospital with my Dad Saturday, Sunday and Monday. He got stronger and more alive each day we spent with him. Our son, who is a filmmaker, asked him questions about his life for over 10 hours during those three days, and he became more and more animated. His face lit up as he told us stories about his childhood, high school years, and life as a dad, husband, and grandfather; many of which I had never heard. Monday we were able to move him back to his assisted living facility.
I do not know how long my Dad will choose life over letting go and moving on to heaven, but I do know that he, most likely, would have passed on more quickly if we had listened to his doctor. His plan of sending him to a nursing home, away from his friends in the assisted living home with no reason for living, had a better chance of killing him.
I share this story to re-emphasize the importance of advocating for your family and yourself. We must take control of our own care! We should not allow anyone to dictate our care. We all need to step up, get as many opinions as possible, and be involved in our medical care and decisions about our quality of life. Not doing so may take days, months and maybe years of joy and wonderful memories away from your family members or yourself.
Enjoy the journey of being stronger every day,
Fran McDonald, PT, DPT, OCS
