CurePSP National Spokesperson, Patricia Richardson

My Father, Laurence

Laurence Richardson, military veteran, corporate executive and late-in-life musician, was another tragic victim of PSP.  His daughter Patricia Richardson, well-known actress of stage and screen, tells his moving story.

My father was an unusually intelligent, proud, funny, robust, active and athletic person with many osteoarthritis injuries and health issues that disguised what was really happening to him with the onslaught of PSP. We thought of him as being an unstoppable force – a tiger. Dad was the Sub-Commander of the Naval Academy his senior year, went to graduate school at Princeton after the war, was a fighter pilot, a test pilot, an aeronautical engineer, and a corporate executive. In retirement, he played golf, tennis, and bridge. He played the guitar and even took his first piano lessons at 65! He lived a vital and curious life, telling everyone what to do, and was, sometimes to our chagrin, always right about everything.

Dad died of PSP on December 14, 2005, three years after my mother passed away. Upon retirement, my parents had refused to move closer to my three sisters or me because they didn’t want to be a burden to us. As a retired military couple, they wanted to live near a Naval base, so they chose to move to Virginia Beach, VA, where one of my Uncles lived and Dad had once been stationed. So when there began to be a lot of medical problems for both of them, my sisters and I took turns going there in tandem each time there was a surgery, or for holidays, or for a crisis, of which there were many between the two of them. These trips were hard for us to work out. We all lived quite far away. I was all the way across the country in LA. Three of us worked. We had kids at various stages of their lives we were raising or helping in some way. It was difficult caregiving from a distance and we worked hard to coordinate the visits with our families and each other. My sisters and I always preferred to be there together for the comfort and companionship in the midst of some sad changes, but it was impractical and not as good for our parents that way.

The first signs of my Dad’s PSP were completely unrecognized by us. He had already joined my mother after her stroke in assisted living and was falling down a lot. This is an early symptom of PSP. But at that point, we thought that Mom was pulling him down when she fell, as she was having many cognitive and some physical difficulties. Later, we realized that he was pulling her down with him. In addition to the many surgeries my mother’s conditions such as her rheumatoid arthritis required, Dad had back surgery, hip surgery, open-heart surgery, and knee replacement surgery. We were traveling to Virginia quite a lot.

Upon reflection, I think that the open-heart surgery was the thing that most disguised his PSP-driven decline. Dad was unable to do proper physical therapy afterwards because of his bad knee, and he didn’t walk or work out enough. We attributed the worsening PSP stiffness to his osteoarthritis, knee problem, and lack of exercise. I read that there is often cognitive decline after open-heart surgery. He began to speak less, and we noticed that he was saying “that’s right” in lieu of using a more complicated response. At the time, we thought the manner of his reply was due to the cognitive challenges that I had read about, but in reality, he was becoming physically unable to form the words. We had to stop Dad from distributing their medications as he was making dangerous mistakes. The four of us had to confront him about that, and he was furious. He realized it was the beginning of losing his independence. We knew it was painful for him to have his competence challenged by his children. Now the medications had to be brought to them at home by the nursing staff from the community health center.

He was having minor car accidents, mostly on the grounds of the retirement community. Because we had started paying for a private nursing assistant to be there during the day with my mother, we began to get reports from her about Dad. He wasn’t telling us about these accidents, and it was difficult for her to tell us because he was very intimidating to her. He couldn’t turn his head to look around behind him when he drove. His responses were slow. He was going through stop signs. It was terrifying for her to ride in the car with him during errands. Virginia law permits people to anonymously report an incompetent older driver to the Department of Motor Vehicles. Dad’s physician contacted the DMV and recommended that he be tested. My father failed the test and lost his license, which made him very angry. I should note that this law they passed in Virginia is an excellent way of handling this problem with elderly drivers. I wish that all states would enact this anonymous reporting solution. However, even with this DMV action, he was still driving on the grounds of the retirement community. We had to take away the car completely so that he didn’t hurt someone. Donating it to a local charity turned out to be a good solution.

Though my father’s doctor was very helpful in dealing with the car issue, and we had taken him to a neurologist that he had recommended, we weren’t getting anywhere with a proper diagnosis. It wasn’t until he met a new doctor, a younger and very kind general physician who worked at the clinic at the retirement home, that we really got some help. He had a small geriatric practice and was one of those doctors you pray to come across in your life; the kind that go above and beyond to help their patients. He took care of perhaps 25-30 of the patients at the facility. Dad was originally diagnosed with Parkinson’s Disease, but this new doctor noted that the Parkinson’s medications were not working for him, and paid closer attention to Dad’s eye movements, his lack of balance, and other symptoms. He had two other patients in the Virginia Beach area with PSP and thought he recognized the disease. He sent my Dad back to a neurologist who confirmed the PSP diagnosis. Later, we were shocked to realize that we hadn’t gotten the correct diagnosis of PSP from anyone until less than 2 years before his death. Hindsight tells us that he probably had the disease for somewhere between 5 to 6 years.

I never, in a million years, would have imagined that my father would put up with the life that he lived in those last years. Yet he did put up with it, in bed or a wheel chair or the recliner that we got for him that lifted him to a standing position. That recliner became his “cockpit”. I highly recommend it to other families, as he was able to spend much of his day in it by pushing the button to move him around, sort of rocking himself. It gave him a sense of power and control and allowed him to get up so that he could get into the wheelchair or into a standing position to be changed. He also had earphones wirelessly linked to the TV, which helped him watch it without blaring the sound throughout the building. We also had pictures of his entire family across from his bed where he could see them every day. Our doctor recommended we try Vital Stim Therapy through the speech pathologist, which got my father speaking again after he had completely stopped talking. He probably got another six months of speaking in short sentences from this therapy in addition to a lot of help swallowing. This therapy doesn’t help everyone, but I know it has helped some others with PSP.

Dad had a wonderful caregiver, Alice, the same woman who had cared for my mother. She lovingly bathed and dressed him, and spent the days with him. And he, who LOVED good food and wine, surprisingly seemed fine with the less-than-appealing, ground-up food, thickened juice, water, or tea. He couldn’t read, but he watched TV with or without his glasses, and sometimes grimaced in pain from spasms that rocked his arms and legs. At some point, we all assumed that he had some level of dementia, either due to the medications or his disease. In fact, he wasn’t very cognitively impaired at all; he was just trapped and mummified in a body that had once been handsome and more than competent in every way.

Patricia Richardson and Dad

Our Dad served as the president of corporations, and now he was frozen and helpless in a bed, and when his own caregiver wasn’t there, at the mercy of someone in a bad mood or in a hurry. He was injured at one point by a nurse who tore his skin and some people at the institution hid the injury from his doctor, didn’t put it in his chart, didn’t prescribe the right medicine for it and it became infected. I happened to visit at the right time. Alice and I brought the injury to the attention of his doctor who was furious and got the right medicine to him. It was a terrible thing to see Dad looking helpless and frightened. Dad was accustomed as pilots do, to giving the thumbs up when everything is okay for takeoff. For a while, he was still able to communicate by using that one hand. When he could no longer speak at all, he would give us a thumb up or down with that one good hand to tell us yes or no to any vital question. We treasured that one hand that seemed to work fairly consistently and helped him keep it open by giving him a stuffed Scottish terrier that I found one Christmas, which was just the right size and shape for his big hand to hold onto at night. One of the helpful nurses told me it was a good way to keep it from cramping up and being unusable like his other one. He was famous in the health clinic for his firm, sometimes even painfully firm, handshake. I can’t tell you what a loss it was when he finally lost the use of that hand too, when he could no longer shake hands or even command that thumb to go up or down. Now we had no way to communicate at all.

He became more lethargic. He began to lose a lot of weight. When I would visit with him towards the end, he was not often awake. He would peer at me. Sometime it was so hard to tell, did he know me? What was he thinking? Was he angry with me? After a while, we didn’t know how much he was “with us” or not. He got in blacker moods and would sometimes glare at you, or just sleep.

Sometimes he really laughed while listening to us talk. Or sometimes he would cry at the mention of something like my children. Such are the emotional changes with PSP. The really startling thing was the way laughing and crying sounded so much the same. I really couldn’t tell sometimes which he was doing.

I was in the middle of shooting an episode of The West Wing in Los Angeles when Dad had a minor stroke. I flew to Virginia where I learned that he wasn’t going to be able to swallow anymore. My sisters and I met and decided not to insert a feeding tube. Although he was awake and could look at us, and we thought that he might understand what we were saying, as well as everything that was happening to him, he couldn’t speak or indicate in any way what he wanted us to do. Our decision had to be based on his very clear medical directives and the fact that his health had deteriorated so much in those last months. Dad’s doctor said that a feeding tube at that point would be prolonging his death – not his life. He could no longer get his medications since he couldn’t swallow them. We gave him an IV to make him comfortable and hydrated as long as that was possible.

My sisters and I ended up sleeping in his room and staying with him around the clock. We slept with one eye open to watch him and listened to his breathing. We petted his brow and held his hand, played guitar music as he had played the guitar for us as children, talked to him, gave him permission to go, laughed and cried, prayed and waited. Dad gradually slipped into a coma but seemed to always be aware of our presence comforting him.

We had many blessings in having each other. Alice, his caregiver visited, and kind nurses would come in and out explaining to us what to expect in the process of death. I believe that, in general, people are afraid to talk about death. After having endured this experience, I think that we shouldn’t be afraid to talk frankly and openly about it. The more the nurses talked to us about what was going to happen, the less frightened we were.

We donated our father’s brain for research to CurePSP, which confirmed the PSP diagnosis. We found out through the autopsy that the areas of his brain affecting his motor abilities were much more affected than the cognitive areas, that the cognitive areas were relatively unharmed. I found this so sad, and the questions that arose were tough ones: wouldn’t it have been better to be more unconscious of his calamity? What did Dad do to deserve this kind of death? Why did he have to have such a tragic final chapter? But more importantly now, what can I do to help prevent others from having to suffer from PSP? What can we all do?

I hope that you will join me in the fight against PSP. CurePSP is doing very important research, providing educational materials, organizing family conferences and support groups for PSP families, as well as international scientific symposiums for physicians and other healthcare professionals to share their research. It was the Foundation’s website where I gained additional knowledge about my father’s disease. They devote the majority of their annual funds to research efforts, education, and support. They receive no government funding and are solely dependent on gifts from people just like you. Please send in your gift today to help CurePSP’s vital programs and services.

On behalf of all those affected by PSP, and in memory of my father, Laurence Richardson, I thank you for your support.