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….. Read more…

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 love this woman.”

Doesn’t get any better than that does it…so that is my Christmas gift from my mother. When I get crazied over the next couple of weeks, all I have to do is read this little piece of paper. Read more…

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. That was a couple of weeks ago. Since signing up for this contest mom has only had a couple of Alzheimer’s days. Her days are full of planning for a cruise, seeing the ocean for the first time…putting her toes in the sand. She tells me that she thinks the contest is good for her Alzheimer’s. 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…

Editor’s note: [Posts by Melissa and Barbara are not always published in real time. Many of their posts offer timeless wisdom. But sometimes, they are time critical---you want to know they are o.k.! You can get the latest by visiting Barbara's Facebook page]

Thursday, July 5, 2012

I am Barbie’s daughter, Melissa. She wanted me to write to all of her Facebook buddies and tell them that she is in the hospital. She is OK, but the doctors are running some tests. She had another passing out episode early this morning. I just now came home from the hospital—we went in at 5am. She already has taken over the hospital and made many new friends. She told me to come home tonight and get some sleep that she wants to see if she can be by herself one night.

You don’t know how hard it was for me to leave her there tonight. The nurses told me if she gets scared or confused they will call me and I can be there in 10 minutes. She was trying to be so brave. When I was leaving she hugged me and said, “I never ever want to let go of you when I hug you.” She told me to go home and get some sleep. I don’t think that is possible. I know she is in great hands, but they are not my hands…

I am sure she will post tomorrow. She told me to bring her laptop to the hospital. Please say prayers. Read more…

Hello everyone. This week we have a rewind for you but before we chat about that—I do want to put in a plug for our wonderful Nurse Talk blog. Every time I read a new post I am either moved to tears or laughter. Honestly—take a few minutes and check it out.

We’ve mentioned Missy Vaughan and Barbara Taylor Vaughan before. Missy is Barbara’s daughter and she takes great care of Barbara who has Alzheimer’s. Their ongoing blog posts talk candidly about the progression of Barbara’s disease, the ups and downs and everything in between. Oh—and did I mention Missy has M.S.? Together they articulate the “reality” of their lives in Alzheimer’s in the First Person.

And then there’s Brandi Chase. Brandi’s blog called Lymphoblaster is an online chronicle through her bout with Leukemia. In one of Brandi’s entries she writes:

“The litany against fear is an incantation spoken by the Bene Gesserit, a secret sisterhood from the Dune book series, in order to focus their minds in times of peril.

I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain.

I confess, I use it, and it works. Upon waking for the first time after having my central line installed, I was overwhelmed with fear. The pain from the procedure was upon me, and every movement hard, and unfamiliar. I saw two years of this and wondered how I would ever endure it. It was a dark place, and I looked into it, long and deep. It passed over me, and through me. And here I am. Day 23. I remain.” Read more…

This week we’re featuring a redux of show 449 where we share touching stories like these from our Nurse Talk blog and salute the great writers and contributors that are featured each week. We also have an interview with Deborah Burger on the one-woman play about nursing in America, Tell Us Where it Hurts by Anna Deavere Smith.

Anna is also known as Gloria Akalitus on television’s Nurse Jackie. We share some touching stories recreated by Smith in the play from the caretakers—career RNs—who have also been hit by the failing economy and healthcare costs. Their stories are told with honesty and courage. Share the humanity of what is happening all across the country.

Casey and Shayne also have fun with some—well—rather messy nurses notes, like this one from cardiology: “Patient has chest pains if she lies on her left side for over a year by the time she was admitted to the hospital, her rapid heart had stopped and she was feeling much better.” We also hear from an old friend, Lucille Jones—a rather crazy one at that (no offense Lucille). Lucille’s stories have been memorialized in our Nurse Talk Comedy Pharm…Check them out!

What is your first memory? Have you ever thought about it? I know what mine was…it was of my mom holding me and singing to me. I can even smell her cologne, she has worn the same type of cologne all of my life.

She asked me last night what my first memory was. She was wondering if she will have a last memory with her Alzheimer’s…one that will stay in her mind when all her other memories leave. I told her what my memory was and she told me that she hopes that is her last memory, her singing to me, but me holding her. She fell asleep last night singing, “You are my sunshine….my only sunshine, you make me happy when skies are gray, you will never know dear how much I love you…” and I added, after she was asleep…please don’t take my sunshine away. Read more…

I went to the doctor today. Just a checkup. I told him that I wanted to sign papers. Papers about what I want in the end. Sign papers of who my medical voice is, who I want making decisions for me. I told him how I want things. He looked at me straight in my eyes and said, “Do you realize what you are doing—that you are telling your daughter—who is working so hard to keep you alive and healthy—and who cares for you 24-hours a day—that you want her to make the decision not to give you food, not to do any medical procedure to prolong your life? You are a DNR….Do Not Resuscitate…just try and keep you pain free and comfortable and die with dignity.”

I looked at him, straight in the eye and told him, “Yes. Because just last week, she made me and Mike her legal voice to do just what I am asking today because she has MS…she is 58….I am 89….I pray to GOD that she has to make this decision for me first…but, if not…Mike and I will do as she has asked us to do. Read more…

This post is a compilation of writing about different days by Barbara and Melissa of their experiences watching each other navigate their intertwined lives. Side-by-side, they demonstrate great love, courage and the challenge of living with Multiple Sclerosis and Alzheimer’s as the diseases progress, both as a patient, and as a caregiver.

Barbara writes: “Spent most of the day at the hospital with Missy. I had a nice time. The people there were very nice and very concerned about taking care of me while she was being seen. Missy’s has been falling down a lot lately. I wish I could help her but I cannot. On the way home I asked if we could drive down by the river, we sat and ate our lunch in the car…it is a beautiful day. Before we ate, I said a prayer, to make Missy feel better and for me not to be so much of a burden. Her MS is getting worse. My Alzheimer’s is getting worse. I wondered as we sat looking at the river, how many more lunches we will get to eat here together? How many more times will I go to the hospital with her to hold her hand…will I remember it? If not, I have my memory of today, me and Missy, sitting in the car on a beautiful sunny day, watching the river barges, eating our lunch, and her holding my hand.”

Melissa writes: “My mothers Alzheimer’s is getting worse. She has very very good days, then a day or two of awful awful days. Read more…

Podcast: Play in new window | Download (Duration: 53:43 — 49.2MB) | Embed

Casey and Shayne have fun with some—well—rather messy nurses notes. O.K., it happens once in a while. Check this out:

CARDIOLOGY

• patient has chest pains if she lies on her left side for over a year
• by the time she was admitted to the hospital, her rapid heart had stopped and she was feeling much better

NEUROLOGY

• patient was alert and unresponsive
• healthy appearing, decrepit 69-year-old female, mentally alert, but forgetful
• she is numb from her toes down

You can’t do everything right!

This week we visit with RN Deborah Burger about the recent performance of Tell Us Where It Hurts, by Anna Deavere Smith, also known as Gloria Akalitus on television’s Nurse Jackie. We share some touching stories recreated by Smith in the play from the caretakers—career RNs—who have also been hit by the failing economy and healthcare costs. Their stories are told with honesty and courage. Share the humanity of what is happening all across the country.

And we share touching stories from our Nurse Talk Blog and salute the great writers and contributors that are featured each week. Two of those writers are Melissa Vaughan and her mother, Barbara Taylor Vaughan. For months now they have been chronicling Barbara’s progression of Alzheimer’s in a tender, honest, humorous account of their daily lives.

And we hear from an old friend, Lucille Jones—a rather crazy one at that (no offense Lucille). Lucille’s stories have been memorialized in our Nurse Talk Comedy Pharm…Check them out!

We’ve got questions about the insulin pump, cauliflower ear, and more…AND what’s so bad about working in Minot, North Dakota? Read more…