My Own Family Caregiver Journey

As the Care Manager in the family I have inevitably found myself being the primary family caregiver for each of my parents. They divorced over 30 years ago and each eventually remarried. I became caregiver after each of their spouses died. Luckily not at the same time.

Being a family caregiver has mostly been an honor; at other times it has been exasperating. But I have no regrets. It has brought us closer. It has helped me be a better Care Manager for my clients. I understand things first hand that I only knew in theory before. About how hard it is to make the right decisions for your own parents. About family conflict around the care of an elder.  About grief and loss. And about love and joy.

Today I am managing the care of my mother who is 90 and still going strong.  Fiercely independent. Mind still strong. But she has had pretty severe osteoarthritis for many years now. Thank goodness she and my stepfather finally agreed to move out of their Oakland hillside home (with many stairs) 5 years ago. It was no easy feat to convince them to move from the home they loved; the place of so many good times and fond memories. My step-sister, a doctor, worked on her father and I worked on my mother. We didn’t know which one of them would outlive the other but we knew that it would not be good for either one to live in that house alone. Or to have to move while in the midst of grief. So they moved to an independent apartment at Piedmont Gardens in Oakland, a lifecare community.

They had a good five years together at the Gardens. Then, when my step-father died earlier this year we were glad mom was in a place where she friends, meals, activities, and the promise of additional care as she ages in place.

With mom, I am lucky. I have the luxury of knowing she will be able to age in place where she is and afford the care she needs.

It was a different story with dad. What money he had ran out quickly and he didn’t have enough to pay for the care he eventually needed. I really had to hustle to find affordable care and figure out how to pay for it.

We discovered dad had dementia in 2007.  It wasn’t an easy discovery.  It seemed to happen almost overnight after our stepmother’s sudden death. I knew that depression could look like dementia so I thought perhaps his memory loss was caused by grief over the loss of his wife.  It seemed at first as though he could continue to function on his own. But one day he went to the symphony and couldn’t remember where he had parked his truck. I couldn’t find him all day and was starting to get very worried. When I finally found him back at home I learned that he had rented a car and drove it around until he found his truck!  (Surely he couldn’t have dementia if he could manage to do that, could he?)  Another day I went to visit him and found him frantic and scared, not knowing what was going on or when I was coming. I took him home with me that day. Clearly he could not live alone. Eventually we went to see his doctor and learned that he had vascular dementia.

Dad lived with me and my husband Ben for a year while I tried to figure out what to do. Luckily dad voluntarily decided to stop driving so I didn’t have to cross that hurdle. I saw a counselor, I consulted with my fellow Care Managers, but I couldn’t figure out the right thing to do. If it had been a client of mine it would have been easy- but this was too close- I couldn’t see. My sister and I disagreed about the care of dad.  It drove us apart and we didn’t talk for a couple of years.

Meanwhile, both my husband and I were working full time during the day. Although dad was safe alone, and had the dog to keep him company, I didn’t like leaving him home alone all day. Of course, he didn’t feel he needed a caregiver. So I introduced the caregiver as my housekeeper and told him she was just going to fix him some lunch while she was there. It worked! As soon as he got to know her he looked forward to her “visits”. They became good friends.

My husband was very patient and tolerant during all of it. My dad was easy and we could still go out at night and leave him alone in front of the TV watching a re-run of “Gone with the Wind”. (He loved seeing movies he had seen before because he could remember them). But it changed the air in our home. It’s hard to describe. Some families do it for many, many years but the truth is dad didn’t really want to live with us. He wanted to be more independent and besides, he missed the city. It’s not that he was ungrateful but it was hot in Novato and he hated what he called “the horror of the suburbs”.

Then one day a good solution presented itself in San Francisco. I took him for lunch at a nice Assisted Living Facility that was running an affordable special for one year. When I asked hesitantly over lunch if he’d like to live there dad said hopefully “Can I?” When the day came to leave him at the facility I was the one who was having a hard time. I felt as though I were abandoning my baby.  He, on the other hand, was just fine.

But I was still juggling full time work with visiting dad in SF, taking him to doctor appointments and out for lunch, managing his care. I have some sweet memories from those times. I remember one day my husband and I pushing dad for a stroll in his wheelchair in San Francisco. We came to a corner and Ben and I were discussing which direction would be less steep. Dad asked “Are we lost?” “No dad,” we’re just deciding which was to go. “Oh darn”, said dad with a sly grin, “I was hoping we were lost!”

But it was still too much to work full time. My own health was suffering. Finally I quit my job.  (Little did I know at the time that would set the stage for starting my own Care Management practice!)

When dad sustained a fall and could no longer live in the Assisted Living I moved him to a Board and Care home near me in Marin. I actually found one with a private room he could afford. It wasn’t much but it did have a view of a tree – the one thing he asked for. I applied for the VA Aid and Attendant’s pension to help pay for his care. Eventually I applied for Medi-Cal when his health deteriorated (he also had rheumatoid arthritis) to the point where he needed skilled nursing care.  You hope it never comes to that. It was the last thing I wanted for him. It was so hard watching him decline for a year in the nursing facility until his death in 2013. He had been such a vibrant and robust man. An active member of the ILWU. An actor, one of the founding members of the SF Mime Troup. A political and human rights activist. A father and a grandfather. Amazingly, he still maintained a sense of humor when he wasn’t long for this world. I remember one day coming to visit with my siblings. Dad was sitting in a recliner at the end of a long hallway. He could see us coming and said, “Well, here comes the whole fam damily!”

Caring for dad was one of the hardest things I’ve ever done and also one of the most rewarding. I wouldn’t trade it for anything. I miss him. But I do hope it’s easier with mom. I’ll keep you “posted”.