Joan Melton, MSN, lives in Indiana.
I am a geriatric nurse practitioner and have also been the daughter to an ill, aging parent. I felt well trained for my professional role but struggled with the latter.
I joked that, despite my logical understanding of what was going on with my mother, it could be hard to accept her physical and functional changes, which sometimes seemed to fly in the face of logic. There were days Mom’s hospice nurses spent more time with me than with my mother. They’d sit and allow me to vent my frustration at watching my mother slowly leave me, at feeling overwhelmed and “losing my cool” with her, at not being able to practice the advice I’d so readily handed out to so many other families over the years, not being able to “fix it” and successfully comfort all of Mom’s fears and ailments 24 hours a day, seven days a week.
Yes, I know how unrealistic that last statement sounds. Thank goodness for hospice nurses, who reminded me that I was “the daughter” and did not need to be “the nurse practitioner.” They reminded me that as the daughter I had amazing insight no one else had.
So, when Mom spent a week in the nursing home to give my family some long-overdue respite time, her hospice nurses suggested I share all of my rich, personal, daughterly insight.
Their idea was brilliant. It made me feel useful and allowed me to feel less guilty about taking Mom to the nursing home. Most of all, it reminded me of who my Mom really was behind the mask of her dementia.
Mom’s health issues had begun with chronic, recurrent atrial fibrillation. Placed on Coumadin for stroke prevention, she fell, hit her head, and had a cerebral bleed. She was taken off Coumadin, and during her recovery had another episode of atrial fibrillation, this time suffering a thrombotic stroke that left her with memory problems and expressive aphasia. In addition, Mom was blind from the effects of glaucoma and macular degeneration.
In summary, Mom was unable to walk by herself, couldn’t find words to say what she wanted to say, and could only see shadows. Naturally, she became fearful and frustrated as her world closed in on her. Confusion and anxiety were side effects of her condition(s). At times, she was so anxious that she became short of breath. Her oxygen levels would drop, and her confusion would get worse. In addition, her appetite changed. She lost weight, and like many elderly patients, she had recurrent urinary tract infections from not drinking enough fluids.
Two posters. Before it was time to take Mom to the nursing home, the hospice nurses suggested I make two posters to display in her room. They suggested that on the first I list who my Mom was behind the mask of her dementia. What did Mom love to do before she became ill? They also suggested I put photographs of Mom on the poster to show what she’d been like before she became so frail.
On the second poster they suggested I write things to help the staff at the nursing home take better care of Mom, tips that only I knew from my past experiences as her caregiver and her daughter. Seeing these things written on a poster and displayed in her room would serve as a reminder for the staff, and would provide an easy way to share important information about her to all the different staff members who would be involved with Mom’s care.
I took the nurses’ excellent advice and began making the two posters. The entire family helped. Mom’s posters were the talk of the nursing home. People would come into her room just to read them. Here are a few examples of what we wrote:
Mom loves flowers, especially zinnias.
Mom’s was married to Dad (name) for 51 years. Dad went to heaven eight years ago.
Mom had five children (we listed their names). Mom calls out for her oldest son.
He and his wife took care of Mom at home.
Mom loves to waltz and old-time country music.
Mom loves to talk to her sister (name) on the phone every day. Mom is extremely close to her sister. Their mother died when they were only four and six years old.
Mom loves cooking for her family. She makes the best fried chicken.
She loves listening to the Catholic mass on TV or praying the rosary.
Mom loves going to the country, raising cows and bottle feeding the baby calves. She would give the cows names like pets.
Mom loves having her hair fixed and putting on make-up and looking nice every day.
Mom’s appetite is not very good, but she loves mandarin oranges and puffed
popcorn. She calls these foods ‘the good stuff.’ She will eat them like they are going out of style. She has a special supply at the nurses’ station.
Mom drinks most of her daily fluids during the night. She always had a bottle of water at her bedside at home, and whenever she got up to the bathroom during the night would take a drink. Offer her ‘water’ during the night whenever she wakes up. Even if you are giving her another type of fluid, if you call it ‘water,’ she will drink it.
If she yells ‘help me,’ she just wants to know someone is there and she is not alone.
Hold her hand and she will stop yelling ‘help me,’ or try to put her rosary in her hand. She will start to pray out loud and slowly fall asleep.
Since Mom cannot see, always tell her who you are when you enter the room and what you are going to do before you do it. If you give her medicine, push on the palm of her hand first so she knows she has a pill in her hand to take.
Help Mom dial the phone to talk to her sister. She will forget to ask. She likes to have the speaker phone on if possible.
And last, but not least, do not forget to tell Mom how beautiful she looks! Who doesn’t love to hear how beautiful they are?
The staff at the nursing home told me they found this information invaluable in relating to my mom. It also helped prevent her from getting dehydrated, having another urinary tract infection, as well as from feeling more confused and anxious.
I hope the idea of making posters like this for a loved one can be as therapeutic for other families as it was for me and my family.
Mom died at home six days before her 86th birthday. We were all by her side, and she died peacefully. I learned things through this experience I would have never
had the opportunity to learn in a classroom, big and small miracles, things that I want to share with other families, and things that will be a part of me forever.
I want to dedicate this article to all her brilliant, ultracaring hospice nurses and hospice nurses everywhere who help patients and families find their way along the difficult journey of caring for and saying goodbye to someone they love.