My Mom, Linda Henry was born on March 8, 1941 at her home in Birmingham, Alabama. When she arrived into this world she was black from head to toe. The doctor wrapped her in a blanket, laid her on a table and told my grandmother she was dead. A few seconds later they heard a cry coming from that wrapped blanket. My Mom came into this world the same way she left, as a fighter.
As far back as I can remember my Mom was active, independent, and spunky. She and my Dad had gone to school together and known one another since she was nine and he was eleven. Daddy fell in love with Momma when she was 15 years old. He called her his spunky little cheerleader. They married on August 8, 1958 when my Mom was 17 and my Dad was 20. Just a couple weeks before my Mom’s 23rd birthday she was the mother of a newborn, 1-year old, 2-year old, and a 3-year old. My Dad worked as a photographer and my Mom stayed home and raised us kids. We spent our childhood camping, mountain climbing, canoeing, swimming in creeks and lakes and just enjoying life. My parents were always outdoor people and as a result the four of us love the outdoors.
In 1983, after all of us kids were grown; my parents decided to sale their home in Alabama and move to East Tennessee. They would call Tennessee home for the next 34 years. They both worked but they also adopted the mountain tradition of crafting. My Dad did woodworking, making all kinds of clocks, wall hangings, arrowhead boards, and wooden baskets. Up until around June of 2014 my Mom was a vibrant, active person. She loved working in the yard, mowing the grass, tending her flower beds, and landscaping. She had a business making jewelry which she sold at the Smoky Mountain Knife Works in Sevierville, Tennessee where she and my Dad worked. She did all sorts of crafts, a gift I wish I had inherited from her but didn’t. Momma had lunch once a month with girlfriends and loved to go shopping. In addition to taking care of the yard, my Mom took care of everything in the house. She kept the house cleaned, clothes washed, meals cooked, groceries bought, bills paid, and took care of their three cats, Doc, L.D., and Noel. I’m telling you all of this because I want you to know the woman my Mom was rather than the shell of a person she became after PSP took everything from her.
In February 2011, while my Dad was in the hospital with Congestive Heart Failure, I drove over from North Carolina where we lived to be with him and my Mom. When I arrived at the hospital I found out that my Mom’s neighbor had to drive my Mom to the hospital because she had developed double vision and was unable to drive. I really didn’t think much about it at the time; I just figured it was associated with aging. Momma had been to the eye doctor and was waiting for her new glasses (with prisms) to get ready. I had no idea that this was one of the first signs of PSP. Of course at that time I had never even heard of PSP. In retrospect, there were a lot of signs that, had I known to look for them, I would have noticed much earlier.
In November of 2011, the day after Thanksgiving, Momma got a call from her doctor with the results of a biopsy. She’d had a mammogram and they found a spot which concerned the doctor. The results of the biopsy were positive, my Mom had breast cancer. Her surgery was scheduled for December so I drove back from North Carolina and spent 2 weeks with her while she recovered. Momma was so brave through it all, even the radiation treatments. After all was said and done, my Mom just didn’t seem the same. I assumed it was because of the cancer, the surgery, and everything she’d been through. She just seemed to be depressed and distant; not herself at all.
In January 2012 my husband Brad and I moved back to Tennessee. He had accepted a job as a Forester for the State of Tennessee. I began working part-time which was nice because I was able to spend some time with my Mom on my days off. It seemed like each time I went over to see her she was more and more distant. My Mom had always enjoyed shopping and going out to eat, but I couldn’t get her to do either. I was worried that she was getting depressed. It was about this time that my Mom starting having falls around the house. When I would ask her if she got dizzy she would say “no, I just fell”. She even thought it was strange because she didn’t stumble, just fell and always backwards. None of the falls were bad, but it was disturbing none the less.
By June of 2013 my Mom was using a cane to get around. She’d had gallbladder surgery and was convinced that the surgeon had done something to her that affected her balance. The doctor’s office kept telling her that nothing they did would have any effect on her balance, but she didn’t believe them. Christmas of 2013 my Mom and Dad came to our house for Christmas dinner. I could tell that day that something wasn’t right. My Mom who usually loved Christmas and family get-togethers was like a different person. She would stare off somewhere else when I was talking to her and didn’t have any interest in helping me in the kitchen.
In January of 2014 my brother-in-law passed away from complications with Dementia. My Mom and Dad were on their way to the hospice facility, which was relatively easy to find, but they called and said they were lost. My Mom had always been my Dad’s navigator when they travelled but this time she didn’t seem to be able to understand the directions. The day after the funeral service, my Mom was stooped down in the kitchen getting something out of the cabinet and fell backwards cracking a disc. She had surgery the following week.
In June of 2014 my Mom fell down the stairs on the deck when they were coming home from Church. It seemed like the falling was getting more frequent. Daddy finally made an appointment for Momma to see a Neurologist. After doing a brain scan, he told them that the only thing he saw was normal shrinkage of her brain, nothing to worry about. After the appointment my Mom told me that something was wrong, that she didn’t feel right and needed to find out what was happening to her. I could tell she was scared and it broke my heart.
In July of 2014 I made an appointment for my sister and me to talk to my Mom’s doctor. I knew something was going on with her and was determined to get to the bottom of it. At the doctor’s office we were told that my Mom had Dementia. The doctor said that the Neurologist had put that in his report and should have told my Mom and Dad when they talked to him. It seemed to make sense and at the same time it was devastating news. I remember walking out of the doctor’s office and the sunny day that had been when we entered had suddenly turned dark and dreary, the same way I felt. I told Daddy what the doctor had said and that night he told Momma. He said she didn’t say anything, just looked at him in silence.
My Mom’s ability to walk became more and more of a problem as time passed. By September she was using a walker to get around. She also had trouble getting started; I would have to put my hand on her leg to get her to start moving it. It was like her brain had stopped telling her legs what to do. And when she did start walking she would run into furniture or walls.
By November of 2015 my Mom was no longer able to walk more than a couple steps assisted. We decided to get a wheelchair and build a ramp on the front of the house. We hired someone to stay with her for 10 hours a day, 5 days a week while my Dad was at work. We were blessed to find a wonderful Christian young lady named Shanna to sit with her. We lived 100 miles away so I came over every other weekend and helped out as much as I could. It was at this point that she began to have trouble with her right arm (her left arm had been immobile for some time) and she could no longer feed herself.
On July 6, 2016, after a visit from the home health nurse, I got a call telling me that the nurse believed something else was going on with my Mom. She said that Momma had declined too much in the week since she had seen her last and recommended we take her to UT Medical Center and have her seen by their Neurologist. Momma was admitted on July 6th and we were told on July 8th that she didn’t have Dementia, she had something much worse, and something we had never heard of before. My Mom had Progressive Supranuclear Palsy. My heart broke as I sat there listening to the doctor tell us there was no cure, no treatment, no medication, nothing will stop this and it is always fatal. My heart broke again when Daddy and I had to tell my Mom that she would never get better and because of her condition now would never be able to come home again; she would need care 24 hours a day which neither of us could afford. Her worst fear was being put in a nursing home and now that fear would be her reality.
When my Mom was placed in the nursing facility she had just about lost the ability to speak. We could still make out most words, but it was difficult. It was only a couple months before she could no longer speak at all, just making groaning sounds. She communicated to us through blinking; once for yes and twice for no. Of course none of the staff at the nursing home had ever heard of PSP so we educated everyone who would listen to us. I even made up a pamphlet with PSP information and left copies in her room so anyone who was interested could read about it. The staff at the nursing home was wonderful and fell in love with my Mom and Dad. We admitted Momma to Hospice in August of 2016. I can’t say enough good things about the Hospice staff. They were so helpful and supportive during my Mom’s illness.
Years ago my Dad took my Mom to Acapulco for a week. During that time the song “I Love You Just the Way You Are” was very popular. Daddy said everywhere they went that song was playing and it kind of became their song. One time at the nursing home he asked me to play it on my phone. He started singing along and then Momma joined in. It was the most precious thing I’d ever heard.
When we left the hospital on July 13, 2016 the doctor told us that my Mom may last another three months. Like I said earlier, my Mom was a fighter. My husband and I spent every weekend with my parents after my Mom went to the nursing home. My Dad would go every morning before work and stay with her until he had to leave. Then he would come back after work to feed her dinner, brush her teeth, wash her face and say a prayer with her before going home. I would get there on Friday evening and stay until Sunday evening. My Dad and I were like a tag team, him taking care of Momma during the week and both of us taking care of her on the weekends. On June 20, 2017 my Dad passed away unexpectedly from heart failure; my Mom, the fighter, was still with us. The hardest thing I ever had to do was to tell my Mom that my Dad was gone. The second hardest thing was telling her it was okay to go be with Daddy when everything in me was screaming “don’t go”.
On July 21, 2017, exactly one month and a day after my Dad passed away; my Mom lost herbattle with PSP and went to be with him and Jesus. She was finally whole again and reunited with the love of her life. My husband Brad and I along with my sister Penny, my brother David and his wife Sherri, and her dear friend Mary were all by her side as that precious little woman took her last breath in this world and went into the arms of Jesus. There is a hole in my heart now but it gives me peace knowing that Momma and Daddy are together and with their Savior and we’ll all be together again one day. August 8, 2017 would have been their 59th anniversary. I feel pretty sure that they celebrated this year like they’ve never done before. Our family has suffered a great loss, but out Faith in Christ has continued to get us through tough times.
There are not enough words in the English language to describe how devastating PSP is, not only to the person who has PSP, but to everyone who cares for them. At both of my parents’ memorial services we asked that in lieu of flowers, donations be made to CurePSP. We hope and pray that one day there will be no PSP, and that other families won’t have to endure the pain and suffering of losing a loved one to this awful disease. In the meantime, we pray for all those who are still suffering from PSP and for strength for their families.