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Category Archives: Alzheimer’s In The First Person
I came home from work one day and mom said, “We are going on a cruise. I entered us in a contest to go on a caregiver cruise.” I laughed, and said, “Great,” and went into the other room. Later she told me that I needed to go online and vote…that is when I realized what had happened. She was so excited, she said, “If I win this contest, I can do something for you.” I said, “Mommy, the chances of you winning are almost impossible.”
She looked at me so straight and said, “Nothing is impossible. I have Alzheimer’s. The doctors told us a year or so ago that by now I wouldn’t know anyone, and I am not perfect, but I am not gone yet. My mind still works on some days. And you have MS, your doctors told you if you continued to care for me at home that you would not be walking now, and you are. Nothing is impossible…sometimes, when you want, and hope, and dream and pray, and get your family and friends involved in your goal it works…nothing is impossible and you and me are proof”
So, I voted for my first time for the cruise. Read more…
The last few days I have been having Missy write notes for me, I can’t write very well any longer. I can type but my writing isn’t pretty. I tell her what to write, then I sign the note and we put them in an envelope and I tell her what name to put on the envelope. Sometimes I put something in the envelope, a little bracelet I made, a handkerchief..something that I think they will like.
These little notes are for when I die. I want Missy to give or send them to these people. I want them to remember me in a little way, with a little note. All I have left are little things…I am not rich. I have no big diamonds or lots of property. These little envelopes are just little goodbyes from me.
I feel like I don’t have lots of time to do this so I try and do 3 or 4 a day, I have a long list.
I remember a year ago one of my best friends died, and I felt so sad so lost for a few weeks. She was my buddy. We would talk on the phone 5 or 6 times a day, and would meet for lunch once a week. Read more…
I told someone today that the hardest thing so far in caring for my mom and her Alzheimer’s was not being tired, not cleaning dirty diapers, not lack of sleep—it was the days when she doesn’t know me. I know she has Alzheimer’s. I saw first hand what my mom went through when she cared for my grandmother who had Alzheimer’s.
I can tell when I look into my mom’s eyes if it is a bad Alzheimer’s day, because her eyes don’t light up when she sees me. When you are a spoiled daughter whose mother’s eyes have lit up from your first memory—it’s ironic now that in her last memories she isn’t going to know me. The hardest thing so far….and I bet that will never change.
I remember my mother crying once telling me that her mom didn’t know her anymore, and I didn’t understand the pain she was feeling…now it’s my hardest thing. Read more…
This morning when I got mom up from bed she looked at me and said, “Oh, Sunshine, I sure have missed you. I am so happy to see you.” She giggled and while I was dressing her she said, “Yesterday the girl that was here taking care of me was wearing your cologne. She smelled like you, but I knew it wasn’t you because she was so so sick. I felt sorry for her. She had to take a nap and rest. I don’t want to get her in trouble, but I am so happy that you are back today. I missed you so much.” She hugged me and said, let’s never quit hugging, and she just giggled.
After lunch she said, I think when you are so sick that I don’t want to think about it so in my mind I make you someone else, that way I don’t have to think about you in pain. I’m sorry if I leave you some days. Don’t leave me, OK?
I told her, “No way…no way Mom. No way.” Read more…
A visiting nurse came by to see me today, she had to do an update since Missy will be using them again. She didn’t smile much and asked me questions, she never looked at me, just at her computer. She was in a hurry, I guess it’s Friday and she wants to go home. She listened to my heart, took my blood pressure, asked about meds…she never really looked me in the eye, just asked questions.
Missy came home and told her everything was the same, no changes…the lady asked me how I felt, if I ever got depressed…I didnt answer her. She asked again louder as if I didn’t hear. I looked at her and she at me, I told her, “I am too old to be depressed. I have Alzheimer’s.” I asked her, “Do you get depressed? How do you feel today?”
She looked at me, and for the first time smiled…and said, “Yes, I get depressed, and today I don’t feel well. I am sorry.” I told her, don’t be sorry, but, please, the next time you go to see an old person, look them in the eye, talk to them, not at them, and if you don’t feel well, tell them. Read more…
Today Missy cleaned out my closet. We went through all my old clothes, things that I don’t wear any longer and never will. The nursing home has told us they needed nice clean clothes for some of their residents, so we decided to go through my things. Missy washed them up and we will take them tomorrow.
They say Alzheimer’s takes away your memory…it seems like in my stage of it that GOD is giving me a break by letting me remember past things to pass on to Missy, my memories, before they are erased from my mind for good. Going through the clothes brought back so many memories…the pink blouse that I wore to my husband’s funeral, bright bright pink…he told me he wanted me to wear something that he could see from the sky…so I did. My yellow fuzzy robe, so comfy, so soft…I think someone will love the feel of it…so many nights I wore it sitting next to my husband when he was dying. The red dress with the little black dots, I wore it to my best friends funeral because it was her favorite.
Lots of blouses, skirts, pants…robes, pajamas,
I think of other people wearing these clothes and think…maybe some of my happiness will wear off on them…even the clothes I wore when I was sad still bring back some happy memory of someone else.
My mothers Alzheimer’s is getting worse. She has very, very good days, then a day or two of awful, awful days. She seems to be losing her ability to remember how to walk, how to hold things, how to perform tasks that have been simple for her until now. She is aware that she is unable to do these things and it is frustrating her. Her mind comes and goes, most of the time she is smarter than I am on a good day, but then has hours of not knowing who I am, or not remembering what has happened an hour before.
I was so upset tonight because she was bad this afternoon and Mike told me, “But she is still so happy.” Even in the bad—I had not even realized—that even in her frustration, she is smiling and giggly, and happy. She is always smiling. It took Mike to remind me, one day at a time.
Tonight when I was putting her to bed, she sang happy birthday to my dad…she told me how many birthdays he had been gone, and sang again. One day at a time. Read more…
Today I met a little boy who his doctors have diagnosed with autism. My sitter called and said that her daycare could not take him today so Missy told her to bring him with her. He sat with me and we looked out the window, we watched some TV, but not really.
I tried to hug him but he yelled. I tried to hold his hand but he pulled away. We finally connected making my jewelry. He separated all my colors for me. He strung pearls, and he straightened out all my threads in matching colors. He never looked at me in the eye, just past me…but I talked all day to him. He never answered, but he knew what I was saying. I talked about my grandchildren, my daughter, I sang, and even told him a secret. A secret I told him no one else knows but him.
When he left, he patted the top of my hand—his version, I think, of holding my hand. And he brushed up against me. I want to think of it as a hug. I gave him the pearls he strung and he gave them to his mom…he put them around her neck and I saw he was proud. Read more…
This morning I woke up to my mother singing. She was like a child, still in her crib, waiting for their parents to get them up in the morning, she was entertaining herself by singing and talking to herself. I came in the room and she looked at me and smiled and lifted her arms up to me to get her out of bed, to start her day. She said, “Hello sunshine, I love you, I am so happy.”
It didn’t matter how terrible I felt, after being up all night with terrible MS spasms and pain…now seeing her so happy, especially to see me. And then she said, “Oh I love Mondays, today is Monday. Mikey is home all day long. Oh boy, oh boy.”
I can not explain in words the love I have for my mother, the joy she brings to my life everyday…all the bad days of her Alzheimer’s…all my pain in caring for her on days I can’t care for myself…wiped all away by just a “Hello Sunshine.” It’s going to be a good week. Thank you GOD. Thank you for our miracle. Read more…
Today Missy and I went to look at a new nursing facility. It is close to our home. Missy has so many medical bills and she hasn’t worked for the last few years because she is taking care of me. We would of been OK but Missy’s MS drugs are over 3500.00 a month, her insurance will not pay because they are considered preventive, so for 3 years she has paid for them. Then when her insurance denied her surgeries because of the cancer clause. We were up a creek.
I am going to have to move to a nursing facility, not real soon, but soon. The place was nice, all the people were nice and smiled at me. Afterward, we went to McDonald’s and took our lunch to the river. We sat in the car and watched the barges go by. I started crying, and told Missy, “Don’t make me go yet. I will be good, I can stay by myself all day till you get home. I will be OK.”
I told her I was scared to go there and be with strangers, that it wasn’t time yet, I was still me. Missy started crying and told me that I didn’t have to go yet, that she would work something out, that she never wants me to be scared. Read more…
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Alzheimer’s in the First Person
Barbara Taylor Vaughan is 90 and in the early stages of Alzheimer's. Barbara and Melissa Vaughan are putting a face on the disease by chronicling Barbara's illness. Melissa, living with Multiple Sclerosis, is Barbara's daughter and caregiver.
They hope educating others will inspire them to volunteer to help ease the suffering of those with the disease, thier families and caregivers. Barbara and Melissa's relationship, compassion and humor are inspirational.
We love them and thank them for their humanity and generosity of spirit.
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