Eugene Grabinski, Sr.
Rita - My Soul Mate
I've been sitting here on the balcony of my 5th floor condo. I can see hundreds of trees from my vantage point - three of which I have picked out for my wife, Rita. Every night I throw a kiss to each one of these trees as I say goodnight to her.
To pay tribute to Rita for all of the trials, tribulations, and suffering that she underwent with PSP, I wrote a book about her entitled, My Soul Mate. The term "soul mate" means that we complete each other. We were deeply in love and we tried to make each other as happy as possible.
Rita and I were in first grade together in the city of Chicago and had known each other a little over 70 years. She died at age 76. There is an interesting story about when we were in the third grade - Rita turned around to me and asked, "What's one half of 30?" I looked to see if the nun was watching because that would mean trouble. The nun had her back turned, so I said, "15." Rita then said to herself, "Gee, I want to marry a smart guy when I grow up. He's pretty smart. Maybe, I'll marry him?" Little did she know how true that was going to be.
Rita had PSP for about 6 years. In 2001, I saw a small tremor in her left hand, so we went to the neurologist, and he diagnosed her with Parkinson's. We were quite upset about that, so we took her to another doctor who said the same thing. After about 2 years, we made an appointment with a neurologist at Loyola University Medical Center. Since Rita didn't have a downward gaze, he suggested that we see an ophthalmologist who confirmed that she had PSP. We knew nothing about this particular disease and he explained to us that it was rare and had no known cause or cure. To make sure of the diagnosis, we took a trip to Mayo Clinic, and they too confirmed that she did have PSP.
During the 2 years before we received the correct diagnosis, she fell six or seven times, twice quite seriously and hurt the orbit of her eye, and one time I had to take her to the emergency room. Most of her falls, when I reflect back, were due to the fact that she could not see what was below her, like a curb or a step.
About 4 years into the disease, Rita began having trouble dressing, undressing, washing, and she also needed help going to the bathroom. She was also having trouble with balance, and I needed to walk with her in order to get her from one setting to another. I took care of Rita during those years, putting her to bed every night and getting her ready in the morning. I didn't mind this because she would do the same for me, and she was such a beautiful person.
One time she told me, "I want to dance." It was quite sad to hear this coming from a woman who loved both music and dance, but now had extreme difficulty doing the simple two step. It didn't stop her from trying. Rita was also a very accomplished piano player but could no longer play due to PSP.
In 2005, she was having more trouble balancing, and I decided to get a person to assist me. I got a lady who stayed with us during the day and helped me with Rita. She also cooked and cleaned the house and took very good care of my wife.
We had a large house in the Northwest suburb of Chicago, but it was too much with Rita's illness. We moved to a condo in July of 2005. Her speech was getting more difficult, and she had to be fed because her hands were unsteady. All during the time that Rita had her problems with PSP, she was always cognitive which made it even more difficult because she knew what was happening to her, but she never complained. One of her favorite lines was, "I wish I was normal."
In 2006, she deteriorated further, and it got to the point where I was not capable of handling her in the evening. We switched over to 24/7 care by hiring another lady.
The last year was by far the most difficult. To see her deteriorate in that fashion was extremely difficult. I got frustrated and at times a little upset. She would look at me and say, "It's something I really can't help." When I think about those times, I cry because I feel so bad about it. She did not have any control over what was happening to her because of the disease.
A number of times during her last year when she was sitting in her chair, she would raise her right and, although trembling, then take my head and hug it. Even though it was difficult for her, she would also take my hand close to her face and kiss it. It was her way of expressing her love for me. Afterward, I would privately cry.
Rita lost her battle with PSP on March 12, 2007. In her obituary, I ended by saying, "God saw she was getting tired and a cure was not to be, so he put his arms around her and whispered, 'come with me'. With tearful eyes, we watched her fade away. Although we loved her dearly, we could not make her stay. Her beautiful heart stopped beating, putting her at rest. God broke our hearts to prove to us he only takes the very best."