Memaw
Told by her 16 year old granddaughter, Tami
This is the story of my vibrantly young grandma, through the eyes of her 16 year old granddaughter. Memaw was the image of youth at 78 years old. She was the president of her senior group at church and was always doing something for someone else. It seemed she had an endless supply of energy, more than me sometimes. Over the past two months she has declined so rapidly, that the doctors say it is now a matter of weeks.
A little over a year ago now, we got some shocking news, she had a malignant tumor on her shoulder that they would have to operate on. It was diagnosed as soft tissue sarcoma, a fairly rare form of cancer. After the surgery, we were all amazed at how quickly she bounced back, and that she didn't lose any movement in the arm. It seemed my grandma could live forever.
A little over a year later, in the beginning of July of 99, she started to complain about pressure in her ears and dizziness when she walked sometimes. She started to not get dressed in the mornings, and she wasn't doing all the normal stuff she always did, sewing, ironing, talking on the phone, writing letters, going to church, cooking or working in the yard. Soon she wasn't sleeping well at night, she would jerk in her sleep for hours. We called the doctor, and got her an appointment in urgent care for the same day. We were given a prescription for cough medicine. So we took her home and went and called her regular doctor. We got an appointment with her regular doctor, and he seemed genuinely concerned about her memory loss and dizziness. He did a few simple memory test to confirm that in fact her short term memory was going, He ordered a CT scan and an MRI. Both tests came back negative. She was now starting to experience nausea. Her regular doctor referred her to a neurologist . This doctor did various tests, and pretty much told us that it was old age. So going back to her regular doctor, we requested a different neurologist. This doctor seemed much more concerned especially after we told him her usually activities. He ordered an EKG, an EEG, blood work and a spinal tap. A week later when we went back to get the negative results, the doctor was blown away at the decline in such a short amount of time. By then, she was dozing off, and it seemed all her senses were acute. She would notice a little piece of paper on the kitchen floor, and get very startled when the phone rang. The trembling or jerking was happening during the day as well as the nights.
The neurologist, finally referred us to a specialist at UCSF, who after one visit, and only a quick examination, was able to tell us that it was indeed CJ disease. The shock of hearing this is something you can only understand if you've gone through it. My mom, my aunt and uncle and I sat in the doctors office in shock, trying not to cry. Once the tears rolled down my cheeks, that was it, everyone else started crying too. The doctor tried to tell us a little bit about it, but nothing was really sinking in. He gave us little hope of her living longer than 6 months and said it would be harder on the family than the patient. Boy was he right.
From there, it has just been downhill, the people at hospice have been incredible accommodating, they provided us with a walker, a wheelchair and a hospital bed, the same day we called. I have now witnessed my grandma decline from being able to speak a little bit when spoken too, to now barely being able to communicate with us. The hardest part of it right now is knowing that she can hear us, because she sometimes still smiles at us. Only five days ago, we had to put her into a rest home, because the physical and emotional stress of taking care of her was too much for my grandpa to bear. We now visit her every single day, most days at least twice.
She is only drinking liquids now, but even her swallowing reflex is going, so it's hard to say how much longer she'll hold on.
I'm just glad that I had 16 years with my Memaw. Now I just want to make sure to remember her by the loving person she was before this happened. The woman who was always making cookies, constantly sewing, cleaning, doing anything for church, walking and just in general being friendly and helpful to everyone. I think that my grandma was just fortunate enough to have a close knit family that has been there for her from the beginning of this to the end. Our family will be forever changed by this event.
The life my grandma lived before she got this dreadful disease should have been a lesson enough for me, to live everyday to it's fullest. But unfortunately I had to learn many life lessons the hard way this summer. I have grown up immeasurably this summer, because of going through this experience with my family. So that is my story, of my Memaw, from her 16 year old granddaughter.
UPDATE:
Two weeks after she was checked into the rest home, less than a
month after the official diagnosis, and much less than two months
since any symptoms first showed up, my grandma has died. The
night of September 3, 1999 my grandma passed away at about 11 pm.
My mom had awoken crying that morning and didn't go into work. My aunt too chose to stay home from work that day. We went to see her in the rest home, and everyone could tell that she just wasn't breathing right. And the nurse from hospice confirmed our gut feelings, by telling us that her blood pressure had dropped considerably and she wasn't expected to live through the night. So we stayed with her almost all day, and didn't leave her that night till about nine. I kissed her on her forehead for the last time ever that night. As we walked out of the rest home I held my mom's hand as the tears streamed down my face. The next morning when I woke up, my mom told me they had gotten a call about 11 during the night. I felt the most incredible calm, because I knew that she was finally at peace. And I know exactly where she has gone, straight up to heaven, to waiting arms.