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Nurse Talk Blog A Patient's Perspective
Here we share the writing and video of people moving through illness to act as a resource for your own patients as well as to remind us WE are ALL going to be patients, eventually. Understanding illness from the perspective of the patient lends something important to the practice of nursing, helping to combat the effects of compassion fatigue caused by too many administrative issues, too much documentation, stress from short staffing and more.
Let us be reminded why we nurse.
Today I made my Christmas list out. I don’t have a lot of money to spend, so I thought I would give away things of mine that mean something to me and have a little story behind them for special friends and family.
I have a special box with little things in it…things like menus of restaurants that my friends and I went to, or matchbook covers from a bar that we had a good time in. I have books, and just a box full of trinkets that make me smile…a chipped tea cup from my grandmothers house, an old favorite earring of my mothers, silly things, but things that have a story. I told Missy that I wanted to box them up pretty and write down what their story was.
Missy frowned at me and said, “Oh mommy…those are your memories, your special things, they will never mean as much to someone else because they are your memories of your friends and your good times.” I thought about that and thought she was right…who would want my old matchbook covers or little handkerchiefs? It’s really not the item, it’s all the memories that go along with it.
That’s why I hate Alzheimer’s…its a disease that makes a person just a being…when you take away their stories, their memories…their joy of remembering….you just have the shell of that person. Read more…
I was scared of anything medical, even way before the stroke. I waited eleven years to get a sinus operation, ten years to get a colonoscopy, and eight years to get hearing aids. Then I broke my shoulder in December, but my upper arm was still swollen five months later. And, of course, I was worried. Could it be blood clots again, this time in my arm, closer to my heart? So I decided, at last, to take action. Five months. I’m improving with age.
I went to the local imaging center in May, a chain that specializes in mostly MRIs, CT scans, ultrasounds, and X-rays. The technician scanned my arm with an ultrasound and told me that I didn’t have clots. The doctor verified the result in a letter. But what no one told me was the technician went up too far and scanned my thyroid, too. A few weeks later, I got another letter, recommending a biopsy because my thyroid had eight nodules, seven of them too small to worry about. The eighth one gave the doctor concern. I made another appointment as soon as possible which translated into three weeks, but a little background first on cancer and biopsies. Read more…
Here’s where I am now: I’m tired of waiting to feel better, so I’m doing things anyway. I’m exercising anyway. I’m eating anyway. I’m washing the dishes anyway. Dr. Asch seems to imply that I will and should be feeling better soon, that there is some latency from Consolidation I and the CNS phases that I need to shed. I admit to feeling a bit stronger, but again I think it has to do more with my do-it-anyway policy than anything else. I just can’t imagine feeling better than this, when the schedule says chemo weekly! I may as well adjust to a body that is poisoned all the time.
Life has been awful and terrifying this past few months. I stopped eating. Went to 85 pounds. Dr. Peterson said, “It’s as if you are disappearing on us.” The truth is I was. I had lost the desire to live. I checked myself into the hospital. Was threatened with a feeding tube. Please don’t panic. I’m not in such a dark place as I was. But I was in a dark place, and touched a level of hopelessness I’d never experienced before:
Life is mundane. People’s conversations are inane. Going anywhere and doing anything is pointless. Read more…
I can’t remember my Social Security number, my daughter’s birth date, how old my grandchildren are, what I had for supper last night, what I watched on TV this morning or what you call those round green things that are red inside and some have seeds and some don’t. I love them cold but can’t think what they are called. I can’t remember what the grocery store closest by our home is called, what Mike’s oldest brother’s name is, what type of car Missy drives…
But I do remember, that I love cinnamon toast when Missy makes it for me at night when I have bad dreams. I remember how Missy gives me a bath every morning and rubs on my favorite lotion. I remember that my great granddaughter is name Ava Barbara. I remember that I love crazy socks. I remember that I love bacon lettuce tomato sandwiches, I love Coke more than Pepsi, that I can’t eat chocolate. I remember that I love to volunteer at the nursing home, I remember that I used to love to dance and sing, I remember that I have lots of friends who love me on Facebook. I remember I have Alzheimer’s and Missy has MS. Read more…
A friend of mine also has Alzheimer’s. She can still walk and her daughter called Missy today upset that her mother had walked out of the house. Her daughter found her quickly, but she was only wearing a housecoat and no shoes. Her daughter was crying to Missy that she felt so guilty. She had only left her alone for a couple of minutes.
I have questioned GOD as to why I cant walk any longer…why my feet don’t work and I can’t make them go where I want. I think sometimes GOD answers some prayers in ways that we don’t know about.
Maybe me not walking is to help Missy. Maybe sometimes prayers get crossed. Maybe Missy prayed for help in caring for me, maybe I prayed for Missy to get help in caring for me, and for me not to be such a burden. Yes, today, I thank GOD, I can not get up by myself and walk around…it would be another burden for Missy.
I hate Alzheimer’s, I hate it. Read more…
Men basically have two things to worry about: erectile dysfunction and the prospect of prostrate cancer. Big deal. But most men don’t know what it takes to be a woman because they’ve never walked our mile. Permit me to elaborate: wearing a clumsy pad or a tampon that was pushed up too far while our 30+-year period continues to flow; achieving pregnancy with bipolar-ish hormones run through our veins; using itchy make-up, because it was the best buy, that was not tested on animals; losing our diaphragms somewhere, somehow, inside our bodies; experiencing the annual pap smear that will tell you if uterine cancer is in the cards; and, my personal favorite, getting a mammogram, especially after my stroke.
A mammogram is a bitch. Millions of women, including me, have to get a mammogram every year to detect, primarily, cancer and other breast disorders.
A mammography exam is a type of imaging that uses an x-ray, the low-dose type, to examine the breasts, called a mammogram, which is used to aid in the early detection and diagnosis of breast diseases in women. Other machines exist to capture the breasts’ images, but an x-ray is the most popular. If the doctor suspects a problem, you might use another method of scanning the breasts, like an ultrasound. Read more…
Editor’s note: If you are following along with Barbara and Melissa in their journey, this post is from writing done a couple of months ago with both Barbara and her daughter and caregiver Melissa recounting the impact that small things done with great love can make.
Hello Nurse Buddies, I was in the hospital recently and made many new nurse buddies. My favorite was a tech who gave me a shower. I have not has a shower in 3 years, just baths given to me…This wonderful woman gave me an extra long hot bath, and even let me spray her with the spray nozzle.
She washed my hair and it was better than sex…ha ha…I love you nurses…and techs, and aides…you work so hard, and showed this old woman that sometimes, even at your job, you can have a little fun, and make an old woman’s day!!
Melissa writes: Today mom had a shower, a real hot long long shower. She has only had baths by me in the last 3 years…so today she in a chair in the hospital shower and a wonderful, wonderful, let me say one more time—wonderful tech took extra time and washed mom’s hair, gave her a 25-minute hot, hot shower. Read more…
I hate Alzheimer’s, some days are good days, some are not. I am getting worse, I know it.
Nights seem to be worse. Last night I laid in bed, I thought I was in a strange bed, I was scared. I was afraid that no one would ever come back to get me, that I had been left alone. I laid there for awhile and then I cried a little bit. Missy heard me and came into the room and turned on the light. Oh boy, oh boy was I thrilled to see her. She asked me what was wrong. I told her I was in a strange place and I was so glad she came to take me home. She said, “Mommy we are home. Look you are in your comfy bed. Look around, see it is your pretty room.”
I was so happy. I asked her, “Why am I so scared? Why am I doing this?” Missy told me it was the disease. She told me not to be scared, that she would not leave me alone. But, I worry I will not remember that, and wake up scared again. Missy took me to the restroom, we talked for awhile then I was happy to go back to bed. Read more…
Today at the local Whole Foods, while shopping for quick sushi (cooked varieties only! don’t worry Dr. Asch!), I startled a little boy. Startled, intrigued, fascinated, I don’t know. Actually it wasn’t me it was my mask. He stared, and then he got his brother to stare along with him. Finally I said, “You are probably wondering why I am wearing this mask. (he nodded.) I’m wearing it because I have a disease, called leukemia.”
Suddenly he moved away from me, behind his mother’s legs. I said, “Oh no, no. You don’t need to be afraid of me. I can not give you leukemia. Its me who has to protect myself from you! You see I can get sick really easily, when I am out and about I wear this mask to protect myself.”
Kids are so good. They at least look for the reasons why, and hem and haw until they get at them. Adults just stare, unless they have a good reasonable, mature cause to ask. Apparently the two TV news spots have been sufficient. On the way out of the store a patron walking in asked, “Aren’t you the woman that was on the news last night.” I affirmed. 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. Read more…
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