If we had a ‘do-over’ there are definitely things I would change about caring for my father Leo in his final illness, mainly in the last three months of his life. Dad lucked out and had a ‘good death’ in that he had a ‘good long life’ at home with his wife Janina, then declined quickly. He died in 2005, and if there was a lot caregiving information out there then, we weren’t focused on it. Once we were in the midst of it, we didn’t have time to research it. You’ll realize when it happens to you that you’re just too damn busy getting through it! But now, with more than a decade of perspective, I’m writing about our experience here in hopes that other families may sidestep some of the pitfalls we encountered or simply do a better job.
I was a ‘surprise’ when my parents were 40. As I was born later than most children in the 1950s and 1960s, I experienced the declining health of my parents years earlier than most in my circle of friends. I have posted here about Leo and Janina’s life approaching and in retirement, moving back and forth between Kokomo, Indiana and a vacation home near the Gulf Coast in Florida.
When they were in their seventies, we had established a routine of helping my parents drive between Kokomo, Indiana and Florida, in the spring and fall, facilitating their life as ‘snowbirds’ or retirees who move south in the winter. My only brother Len, who was fourteen years older than me, would help them drive south and I’d drive them north or vice versa as our schedules permitted.
Dad had been diagnosed with Parkinson’s Disease in his early seventies. He managed the tremors quite well. The most troubling part of Parkinson’s Disease for him was a crippling anxiety related to the disease that came and went. During one period of disorientation, he became convinced that the bank was stealing all our money, so he hid his wallet somewhere in the house. You can imagine the challenges it caused to have all his personal identification go missing, including Medicare and pension coverage. He hid the wallet well. We didn’t find it until years later when we were selling the house!
Hiding the wallet was just the beginning of a shift in our family dynamic. It can be subtle but suddenly you’re dealing with a new landscape in which your parents are needy and looking to you for help. As Dad ’s health was the first to decline, he got the brunt of our ignorance. Below I’ll list 5 instances where if I wish we could go back and choose another course.
1) Have the tough conversation about safe driving
As someone who worked for General Motors for many years, Dad knew cars inside and out, and he prided himself on his driving. He was always a good and safe driver As his 80s approached, he was not acknowledging his diminished reactive skills, nor did he want to give up the freedom he always associated with driving. Once, at a gas station on the drive up north, he got behind the wheel and refused to budge. When he realized that my mom, Len and I would not get back in the car until he moved out of the driver’s seat, he threw the keys at me— and pouted for the next few hundred miles.
Other times when we wanted to avoid a fight, we let him drive. One fateful day in Jacksonville, Florida, he drove through a red light, coming head on in the intersection with a huge 18-wheel truck. Lucky for us, the driver was able to slam on his brakes. After that, Dad realized that it was time for him to give up the keys. And we realized, we could have all paid a terrible price for not addressing the situation earlier!
2) Be attuned to mental decline
After that incident, Len or I did the driving. The next spring, when we were making the drive back to Kokomo, Dad asked me if we had passed Jacksonville all the way to Tennessee. He was visibly disoriented for much of the long drive. (Given the trauma we all experienced the previous year, I’m not surprised it was Jacksonville that stuck in his mind.) It was heartbreaking to realize how much he had declined. At that point, many families might have looked into area care facilities. But we were busy living our lives and chose to leave it to mom. I was entering my 40s and Len his mid-fifties, yet somehow neither one of us acknowledged fully that it was the beginning of the end for Dad.
Dad’s condition was manageable at home, at least until it wasn’t. Shortly after, I received a call from Mom that Dad had run out of the car in a busy parking lot, obviously disoriented. Bystanders helped her calm him, and called 911. He was taken to a care facility and prompted admitted. If we had arranged for home care, could dad have lived his final months at home?
Considering that we had done absolutely no research on area facilities in Kokomo, we lucked out and got dad admitted in quite a good facility. But it wasn’t home. It depressed dad that his roommate, a gentle man named Wilbur, had been there for decades. How many roommates had come and gone for poor Wilbur, I wondered?
We celebrated Dad’s 85th birthday in his new home. Thus began one of the most upsetting times of my life. But also the happiest. In January 2004, a few months earlier, I had met Jim. We had made one lovely trip to Len’s home in Georgia, where my parents met Jim and we celebrated their 61st wedding anniversary. They had forgotten it was their anniversary, but we cued them and made it festive!
The next time Jim saw Dad, he was in the facility. Whenever we visited, Dad always asked to be taken to where he could see the car in the parking lot. It was upsetting for all of us. Couldn’t he come home sometimes, I asked? The advice was no. It would only make it harder for him to return.
One of the most depressing times of my life was in the lunch room with my Dad who was looking around at all the other ‘inmates’ in various stages of debility. He began crying. Up until then, I had always tried to be upbeat, but there was no positive spin here. I began crying, too. The reality had hit us and there was no denying it.
Just days after, Dad declined rapidly, and soon he wasn’t going to the lunch room. Or eating at all. Suddenly there were so many decisions to make for dad, and since he was beyond a state where we could ask him what he wanted, we were on our own.
3) Establish your Health Care Directives
One time when dad had been taken from the facility into the hospital—I don’t even recall why now, but this kind of trip is all too frequent as patient enter their final illness— he let me know he was ready to die. ‘“Guess it’s ‘Sorry Charlie’ time for me,” he said one day in intensive care. He wasn’t a man of many words, so that his way of saying he knew he was dying and he was OK with it.
Patients experiencing dementia often forget how to swallow. When he was not able to receive nourishment, the facility inquired with us about installing a feeding tube. As Jim had put himself through college as a caregiver, both in a facility and privately, Mom and Len left this call to us. I called Jim, crying and not really ready for a rational conversation. Jim let me know that his patients really hated the tube down their throat, and he wasn’t enthusiastic about the other option either. What Jim really said, but I wasn’t ready to hear it, “Don’t do the feeding tube, it’s his time.”
Now I know that not eating is actually one of the gentlest ways to die, But it can be hugely upsetting to watch a parent not eating. I opted for the stomach feeding tube. As soon as I saw the tube installed in Dad’s abdomen, I regretted it. I understood then that his body was shutting down naturally and preparing to die, and this tube was only prolonging a condition Dad wouldn’t have want to linger in. Because of this episode, Jim and I now have specific language in our own health care directives about feeding tubes.
Although I regret it, I don’t berate myself in retrospect over the decision I made. Dad could have avoided it by getting his health care directives in place before he was disabled.
4) Support the caregiver
Mom made a valiant effort and cared for Leo at home until the last three months of his life. When we were there on the weekends, I noticed that Dad would wander at night when his anxiety was in high gear. He would come into my room, waking me up at 3am and asking if I was OK. ‘Yes, I’m fine, Dad.’ I sat with him for a few minutes and sent him back to bed. I realized that Mom must deal with this on a nightly basis On the last trip north, we stopped in a hotel and Mom gave him such a strong dose of sleeping aids, I thought he might not wake up. But she needed her own sleep. I regret now not suggesting we bring in some outside help to manage the situation.
Once Dad went into the facility, I was disappointed that my mother wasn’t coming to see him more. He was marooned in the nursing home, so why wasn’t she going there to comfort him? Now when I look back, I realize, she was 85 too. She had become exhausted by caring for him day in and day out. She needed some time to just crash in bed, which she did for several weeks. It was our time to step up and comfort Dad as best we could.
One thing we did right, in spite of our lack of preparation, was just be there. We made a memory book for dad, so we had something to look at together. Dad was a wonderful amateur photographer, and looking at photos he had taken years ago was always a comfort to him.
In the facility, Dad was retreating into dementia. Sometimes Dad would look at me, and recognize me his child, but he couldn’t quite place the situation beyond that. He would look at me and say, “So are you still chasing girls?” “No, Dad, I’m Mary. Remember Jim?” I would ask. “Oh, that’s right,” and he would giggle.
Thank heavens for small pleasures. We got Dad a new set of dentures, which he never used. So we would stop at the McDonald’s drive thru before visiting and get him a single cheeseburger which he could eat with no teeth!
Dad didn’t use his expensive new dentures. So what? There are things you just accept. John Leland, author of Happiness is a Choice You Make, notes in his book that one of the lessons he learned from the elders was just to let some things be. It was a valuable lesson in dealing with his own mother’s care— not trying to ‘fix’ too much— just to be there for her. The caregiving experience does end, and afterward you want to think that you made the last times that you spend with your loved one as comforting and meaningful as possible.
5) Have a Pre-Need in place
Dad’s pre-need wasn’t very “pre.” In fact we put it in place only a few months before he died. He was already in the nursing facility and we paid more than we should have because we were making the arrangements when we were all upset. We knew he wanted a funeral in the church, and that one of his favorite songs was Ave Maria. We winged the rest based on what we thought he would have wanted.
We were lucky that my parents had a sufficient savings to fly us all home on weekends to help them navigate a tough situation. When I read how much caregivers sacrifice, from using their own savings for immediate needs to losing their job or retiring early, I realize how fortunate we were.
Shortly after Dad died, Mom took the initiative to update her will and healthcare documents, and took care of her pre-need. I have no regrets for how we arranged my mother’s care. A Geriatric Care Manager helped us arrange stellar home care for her, as I described here.
Some of our mistakes seem so obvious. Part of it was my father’s reluctance to think about and plan for his last act. And part of it was our unwillingness to face the fact of our parents increasing frailty.
There are tough questions to deal with as our parents age— and as we age ourselves. The question of driving is paramount to public safely. As we move into decades where there will be thousands of aging parents with guns in the home, there will be even tougher situations to navigate in terms of family safety.
Jane Gross, writer and founder of the New York Times blog The New Old Age, went through a similar struggle. Her book, which we read before my mother’s health declined, was a godsend. As she wrote, “I want to try to make sure that adult children, our ranks growing, are not as isolated and ignorant as my brother and I were, lurching from crisis to crisis without enough reflection, information, or support. Maybe I can help other sons and daughters empathize with the growing mountain of loss in their parent’s lives, make peace with an unwelcome role reversal, and adjust to the changed architecture of their families.”
See below the link below for more on Jane’s book we found so useful and other links that may help in planning for this transition:
Jim’s post on helping his Dad plan his end of life documents:
Rob Lowe’s recent Op Ed on caring for the caregiver:
One more photo from Dad’s memory book, a photo he took circa 1960– Len, me and Mom. Photos from his mid-life particularly resonated with him as his dementia set in. I’m really glad we made a memory book which gave us something pleasant to focus on at a difficult time.