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Category Archives: Alzheimer’s In The First Person

A Gift of Joy

A Gift of Joy

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My mother kept a diary her whole life.  In the last couple of years her entries in her diary would only be a few lines, but what wonderful lines! Like “A beautiful day,” or “Missy took me to McDonald’s, had so much fun.” Her last entry in her diary was in February, a couple of days before she fell. It said, “Bad day, confused, but Missy and I had cinnamon toast and giggled.” I told Mike it made me sad to read it, he told me I shouldn’t be sad and to read her other entries. I went back and started reading her diary…Oh, I’m so glad I did. My mother loved me so much. She loved living with Mike and I. Almost every one of her diary posts mentions me, and how she loves me, or how much fun we had. How she wishes I didn’t have MS, or that she is not afraid of her Alzheimer’s because she has me and Mike to care for her. She talks about not being afraid anymore; that I will take care of her. So many times she writes that she wishes she could do something for me; a surprise, grant me a wish. Always wanting my JOY to come back, her old Missy, her sunshine.

My mother left me all kinds of little notes for after she died, and a couple of letters, but nothing, nothing was as wonderful as her diary. Oh, how I was loved. One entry was, “I love hugs, but no hug is better than my Missy hugs. She hugs me like she will never let me go, and some days I need that feeling, that she will never let me go.” That entry hit me the hardest because a couple of weeks before mom died she wanted me to hug her in her hospital bed, and when I sat her up she whispered, “Hug me, Missy. Never, never let me go.”  I always knew it, but reading her little wobbly writings, her handwritten statements of love to me, gave me my JOY back. Thank you, Mommy. Yes, every day I will miss you…more probably, then less as time goes by. And yes, everyday I will want you to be the first person I tell something to….but as you told me, its time to get on with it. You did finally get to give me that surprise you wanted to so badly, and I found it in your diary writings: My Joy. So, on to celebrate your life. Oh, how I miss your giggle, your eyes beaming when I walk into your room and you say, “Hi, sweetie,” or “Hi, Missy,” or “Hello, Sunshine.” Yes, on to celebrate our life….your’s and mine

Went to the cemetery today. Its been a month since mom died. The cemetary where mom is buried is about 65 miles from here. It is an old family cemetary out in the country. I just wanted to see how things looked and plan my parents garden around the headstones. I met with a local landscape man who I know thinks I’m crazy…but I liked him anyway and he understood exactly what I wanted and drew a great picture of my dreams of what it will eventually grow to be. My dad’s parents are buried next to my parents so I am going to try and incorporate the garden around all of them, but still make it easy for the man who mows the cemetery to not have trouble maneuvering around it and the bird feeders that I want there.

Mom is happy there. I took her a fresh bouquet of sunflowers and my dad some birdseed for the birds. I didn’t cry ’til I was driving out of the cemetary, and realized that she is really, really, gone…not coming back. No more sad stories, only happy ones now. Then I started singing, “You are my sunshine, my only sunshine,” but left out the part, “Don’t take my sunshine away.”
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A Moving Tribute to Barbara Taylor Vaughan and her daughter, Missy.

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Some of our listeners and visitors to our Nurse Talk blog might have heard us talk about the touching account of life with Alzheimer’s written by Barbara Taylor Vaughan and her daughter Missy. Both of them have contributed to our blog and shared their powerful story about Barbara’s diagnosis of Alzheimer’s and her “first person” account of what it was like for her. Missy, Barbara’s beloved daughter (who herself has Multiple Sclerosis) was her loyal and loving caretaker. We received word from Missy that on June 9th, Barbara passed away. Casey and Shayne do a moving tribute to these two wonderful, courageous and inspiring women.

Its OK to Go

Its OK to Go

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My mom sleeps…about 22 hours a day now…she is up for maybe 20 minutes at a time….I miss her and shes still here with me…..I miss her real loud laugh, her giggles, her smile…..I miss hearing her talk, her voice calling my name….her voice now is low….its not what I’m used to my mom sounding like….I miss our talks, her holding my hand, her just being in the next room…its not the same now…

She’s still here, but just holding on….I wonder what to….I tell her to let go, go be with daddy…dance, twirl….but she smiles and holds on…I tell her I will be OK, and that she can go….but she smiles and holds on…I think shes waiting for June…she always told me she wanted to die in June…that it was such a beautiful month…and some of her best memories are of June…..she asked me last week what month it was….I told her the last week of May….I think she is waiting for June…..but I don’t know if I can tell her that it is here…

Mom is getting weaker by the day, she is not eating now….she only is sipping a little liquid…she doesn’t open her eyes any longer and sleeps about 23 hours a day. She seems to be very comfortable and is holding tight to her whoopie [pillow]….I play her music for her all day, and have her TV on so she can hear her programs…I talk to her, and read her all the posts of her buddies on Facebook…people have been wonderful with their prayers…my hope is that your prayers are for her to have peace, and know its OK to go be with those she loves who have already gone….I hope you are praying that she knows I will be OK, and it is OK to go…..

Be Careful What You Wish For

Be Careful What You Wish For

http://www.flickr.com/photos/bfs_man/6448402083/
Photo by Mike Fischer

When I was pregnant I always prayed that my babies would be healthy, and have ten fingers and toes. I had so many miscarriages after my son was born that I never thought I would have another baby. When I was pregnant with Missy, I knew it would be OK. I prayed that she would just make it the nine months and be born. I didn’t care if she had 9 toes, 6 fingers… hell, I just wanted her to be born. I would deal with anything as long as she made it into the world. I only prayed once to GOD when I was pregnant with her, and that is what I said, “Just let her make it 9 months and be born and I will handle whatever you give me.”

Last year during the cruise contest I got some ugly, mean messages. People told me I caused Missy’s MS, and it was my fault she had it. I got to thinking…maybe in some way they were right. Maybe I should have prayed more when I was pregnant. Maybe I should have said, “GOD make her healthy.”  Maybe my deal with GOD caused her MS. Maybe he was showing me that I got what I wanted.  Maybe the old saying, “BE CAREFUL WHAT YOU WISH OR PRAY FOR, BECAUSE IT MIGHT COME TRUE,” is right. Maybe I was selfish. I got what I wanted, but now she is dealing with all that pain and suffering because of my dreams.

I told Missy last night, that I was sorry if I caused her all this pain. I was sorry that besides dealing with her MS, she has the added stress of caring for me 24 hours a day.  Yes, maybe I am the selfish one. Yes, I told her last night I was sorry for the pain I was causing her, and will cause her, because our journey has just started with my Alzheimer’s. It is getting worse, and our journey will get harder daily, and her MS is worse.

She looked at me last night and told me to remember when she was little and we would twirl around holding hands then fall into the grass; to remember when she would stand on her dad’s feet and they would dance and sing. She reminded me. “Remember when we would get in the car, just you and me, and drive somewhere on a Saturday, just drive till we decided to stop?” Once we ended up in St Louis, talking and laughing all the way. She told me to remember her growing up, all the time we have spent together. All the love that we have. Everything that we have shared. She told me that all the pain in the world, all the trouble in the future, everything is worth it, because she got to be with me. She got me as a mommy out of all the people in the world. GOD gave her to me, for some special reason. We were meant to be, just her and me. She said that if it was my fault for her pain then it was nothing compared to what she got out of the deal.

So I told her again, I’m sorry if I gave you MS, I’m sorry. She just held my hand and told me to think what we would have missed. To be born or to not have MS…she said she would take being born; that everything now is just a bonus.

And I told her she was my prize.

I’m Not Scared Anymore

I’m Not Scared Anymore

Last night I told Missy why I am so happy. I told her why everything is OK and why I am not scared of Alzheimer’s anymore. One of my good friends died a few weeks ago, they wouldn’t let me go see her. The nursing home wouldn’t let anyone but family in because of the…Continue Reading

Old Age Comes So Quickly

Old Age Comes So Quickly

Old age comes so quickly. One day you are working, having children, cleaning house and then you wake up one morning and poof – you are old, have Alzheimer’s and have to have someone do everything for you. I sometimes think, “Oh I wish I could go back to one of my worst days when…Continue Reading

What I Know Now

What I Know Now

To do it all over again, in my life, would I change anything? Oh yes, some things…but over all…no. I would correct the stupid mistakes I made, and spend more of my time with my family…go on more vacations, spend time that I didn’t think I had with those that I miss the most now.…Continue Reading

A Christmas List

A Christmas List

I found Mom’s Christmas list, she had the nurse write it out for her. 1. Try and make everyone happy 2. Give hugs 3. Tell those that I love how much I love them 4. Take a picture in my mind so I never forget Then at the bottom the nurse wrote, “Oh how I…Continue Reading