My Mother, Nancy
First of all, let me tell you a little about my mom, Nancy Tate, before she got sick. She was a single mother of two who worked as a vice president at an advertising agency. She was as independent as one can be. She was not an affectionate person, but you knew where you stood with her. If she got mad, well, she would let you know it. Don't get me wrong, I'm certainly not bashing my mom, only trying to describe her. Even though we would butt heads on occasion, I loved her dearly.
About six years ago, my mom started having these weird falls. She would unexplainably lose her balance. She broke her wrist, ankle, and bruised many bones. A short time later, we noticed that her speech was a bit off. At first, only those closest to her noticed. A few months later, we went to my sister-in-law’s baby shower. Everyone thought she had been drinking because her balance was off and she began strongly slurring her words.
When it became apparent that she could no longer live alone, she moved into my brother’s house, as he had converted his basement into a nice apartment for her. All she had left was a few of her personal belongings, clothes, and her beloved dog, Harley. Even with the help of a rolling walker, Mom continued to fall. Her speech got worse and we noticed something strange about her gaze - she would seem like she was staring at something but was actually trying to adjust her line of vision. She was having many bathroom accidents and had to start wearing adult diapers. Mom was unable to cook for herself unless it was to heat something in the microwave. I would come to visit, go grocery shopping for her, clean her apartment, and other things. There were only so many food items that I could buy for her because she was only able to use the microwave and even then, she might cook it so long that it would burn or dry up.
Mom got to the point where she was having bathroom accidents, despite wearing pull-up diapers. My brother would do what he could to clean her clothes, and I would help bathe her and wash her hair. It got to the point where I couldn't take her to the salon anymore because she would inevitably have an accident and we'd have to come straight back home. Due to her not being able to fix many meals for herself, I checked around and found a social service that would deliver meals several times a day and would send someone out to visit with her, as both my brother and I worked regularly. Mom refused to have anyone come by, would get very agitated or would laugh at inappropriate times. I took my youngest daughter, Mollie, and a friend to the beach for spring break and decided to take Mom along so she could visit with her sister, Betty. Mom had several falls, many accidents and the slurring seemed to get worse overnight. My aunt and I were so worried about her and thought perhaps she was having a series of mini-strokes. Mom knew everything that was happening to her, and as I packed her suitcase to come home, I found dirty underwear that she had hidden in a side pocket of her suitcase.
This was not something my mom would do and I knew that she was trying to hide it from me. I told her that we would find out what was wrong and gave her a big hug. Please remember that my mom was not an affectionate person nor had she ever been. Mom preferred to demonstrate her love by buying expensive gifts - I do not remember getting many hugs, kisses or "I love you's" from her while I was growing up, but that was just the way she was.
When we returned from our trip, I decided that it was time to find a doctor who could tell us what was wrong. After finding a neurologist at a local hospital, I made an appointment for Mom. The doctor gave her a battery of tests. One was having her write her name and showed me how her letters started out normal size but then almost disappeared. Another was having her walk unattended. Afterward, the neurologist would point out that when she lost her balance, she would fall backwards instead of forward or sideways. I remember at that appointment she was laying on the exam table, reached out her hand and said, "Allison, I'm scared." It broke my heart but I told her that everything was going to be just fine. The doctor came back in and informed us that she had Parkinson's disease. He prescribed several medications for her to start taking.
After a few months of no improvement, we took her to see a new neurologist that had been recommended. He spent about 15 minutes with her and announced that she had progressive supranuclear palsy (PSP). He told her that all of the symptoms she was experiencing would get worse. He also told her that she could not die from the disease itself, but from the complications that arise, such as pneumonia, choking, or the inability to swallow.
After a few months and one bad fall later, Mom was admitted to the hospital. My brother and I knew that she could no longer stay by herself and needed to be in a nursing home where she could be taken care of by professionals. At this point, she was wheelchair-bound. She reacted the way we expected - she cried uncontrollably. This truly broke our hearts, but we knew we had to do what was best for her, given the disease. This also meant that she have to give up her beloved dog. My sister-in-law, who is a veterinarian, found him a good home.
My brother gave her a cell phone so she could reach us anytime. In the first few months, Mom called us constantly, cried a lot, and became very angry towards us. I thought at the time that it because we had put her in the nursing home, but now I understand that it was the disease that caused the outbursts of anger and agitation. After a while, she started to adjust and would even tell anyone who would listen about PSP - that is if they could understand her. At the nursing home, Mom went to activities, church, and even the "beauty parlor" for a while. She was in a normal wheelchair and could get from point A to point B on her own. She was eating a normal diet, as well, but that didn't last long. She started having swallowing problems that forced her to switch to a "soft mechanical diet." After a while, coughing would no longer clear her throat. The doctor explained that the muscles in her diaphragm were starting to deteriorate. In less than four months, she had to switch to a reclining wheelchair, her speech had deteriorated further, and her diet had changed to puréed meat.
It was at this time that I brought my pastor with me to talk to her and witness her wishes on her "advance directive." She stated that when the time came she did not want artificial life support. She said, "When the Lord calls me home, it's time for me to go." However, when we asked her about artificial feeding she stated that she did want a feeding tube. She said that she wanted the one that goes into your stomach and not one that goes up your nose. She was adamant about this. The only other request was to be given oxygen and any medications that might help. I knew she meant that she wanted these things when she was losing the ability to breathe. It was so hard to hear these things but these were her wishes and they had to be honored.
About 8 months ago, Mom started hallucinating - the only two things that she would hallucinate about was marriage and pregnancy. It first started when my oldest daughter, Ashley, went to visit. Mom told Ashley that it was her wedding day and she needed Ashley to get her wedding gown out of the closet as she had so much to do (hair and makeup, to name a few) before "Don" came back for the wedding. She got furious when Ash told her that there wasn't a wedding gown in the closet. During a different visit, she told us that she had just been proposed to by "Don" and they were going to have a baby, as she was 5 months pregnant. When I asked her where "Don" was, she said that I had just missed him and that he would be back later. We knew that Don did not exist. I excused myself from the room and told her that I needed to talk to the doctor. A few minutes later, I returned with a pregnancy test and told her that if it came back negative, she wasn't pregnant after all. She was very upset, but after a while she seemed to forget about it.
In the past 8 months she has lost more than 60 pounds, with half of that number in the past month and a half. I've watched her go from a "healthy" size to 138 pounds, and her weight continues to drop. We use to be able to understand most of what she said, but now we can only understand the phrase “I love you, too,” which she has to hum in order for us to understand. I took a tip from Vicky Ennis and told her to lift one finger for “yes” and two for “no”, which has worked so far. Her meals are completely puréed and she only eats about 25% of them. She drinks out of children's "sippy cups" and can only drink liquids that have a consistency of honey. The nurses have to put a thickening agent in all of her drinks so she won’t aspirate. She is completely limited to her bed and reclining wheelchair, and must have a foam head support when she is in her wheelchair so her head won't fall over. When in bed, she must have her head raised to a 45 degree angle so she won't choke on her own saliva. She is 100% dependent on others for her care.
About two weeks ago, the nursing home called me to tell me that they had performed a chest x-ray which showed pneumonia. She was put on Levaquin and seems to be doing a bit better, with the exception of the phlegm she cannot cough up. My friend, Ann Raynor, told me to have the nurses use a tube to suction it out of the back of her throat. I'm getting some resistance from the nurses but I feel sure they will do it, especially if I keep on them. The last time I spoke to her doctor, he said Mom had about 6 months. With her not eating as much as she needs to, we are considering the insertion of a feeding tube. We are going to ask her again if this is what she truly wants. We want to respect her wishes first and foremost, but after so many changes she may have changed her mind. We will have to rely on her "Yes"/"No" finger gestures. If she indicates that she no longer wants it who knows how long she will have left? This is one of the many things I worry about constantly, but then I remember Mom’s words: "When the Lord calls me home, it is time for me to go.”
If anything positive has come out of this awful disease it is her complete reversal on affection. She loves affection and loves to give it. Her hugs are wonderful and it feels so great to hear, "I love you, too," even if she has to hum it. I feel so very close to her and don't know what I'll do when she is gone. Another wonderful thing to come out of this is that I've met and become great friends with so many lovely people on CurePSP’s Facebook page. The love, support and friendship that I've received is overwhelming. My new friends have gotten me through some tough times and have given me some wonderful advice. I can only hope I've done the same for them.
I'm so very proud of my mom and how she has handled having this disease. She has shown strength that I didn't know she had. The only time she has ever complained was when she was put in the nursing home (who wouldn't?!). She always has a smile for you when she sees you - that crooked little smile and those beautiful brown eyes. That is how I want to remember her.
This is one of the most awful diseases that I've ever seen or heard of. I never knew it existed until my mom was diagnosed. There is very little information on it other than what I found on CurePSP’s website. Since it is a rare and little-known disease, very few people are talking about it and few organizations are trying to raise money for research.
We must get this disease out in the public eye - so many people are being misdiagnosed with everything from Parkinson's to depression. Let's start by telling our loved ones’ stories to anyone that will listen – there’s nothing more powerful than word of mouth. Let's write our local television stations and political representatives. We need help with fundraisers so we can contribute to the research. I pray that, one day soon, there will be a cure or at least a medication that will control the symptoms and allow patients to live with PSP. Look at how far modern day research has come with other diseases - PSP could be next, but not without your help. Please join me in taking those first steps...