A blessing within the loss
Jacqueline Vance, RN
This is a very hard blog for me to write. My mother just passed away. It was very sudden and not expected. I am blessed to have two mothers: A step-mother who has been in my life since I have been 8 years old (the nurse I often speak of and call “Mom”) and “Mother” who just passed. But the reason I am writing this is not to garner sympathy or share my pain, but to share a rare experience that I think only those of us in healthcare may understand.
First, I'll share the “family” side of the experience.
Day 1: Monday May 5, Mother was supposed to get a mammogram, as a small lump had suddenly grown large. She had been complaining for about a week of being tired. This is a woman who loves her “Silver Sneakers” dance program and goes twice a week, drives a sports car, still wears a two-piece bathing suit to the pool (she lives in South Florida) and drinks two glasses of wine before bed.
So when she complained of being tired, alarms went off and I asked her to see her doctor. However, when she called me at work on Monday the 5th, which I thought was to report how her mammogram went, she said she didn't make it to the appointment. She was having difficulty catching her breath as she talked. She said she got dizzy as she was leaving her condo, fell outside her door, and was too weak to get up and make it inside. A neighbor got the maintenance man to help her in but she refused to go to the hospital.
After my pleading, she finally agreed to go. Hours later, she called me, sounding even worse. She let me know that the doctors are “doing lots of tests and taking lots of blood” and that they are admitting her but she doesn't know what is wrong. But, as I am her legal healthcare power of attorney, the doctor promised to call me before admittance.
A while later, this wonderful doctor did call. He said my mother's calcium level was 13 and that, as she had been complaining of abdominal pain, they did a scan and there were multiple lesions on her liver. My heart dropped, and I asked, “Metastatic bone cancer?” He informed me that they had arranged for her to have a full body scan the next day, but as one healthcare professional to another, there was really only one possible conclusion, which I had most likely reached.
Day 2: Mother has her body scan at 5 p.m. I speak to her and she is weaker. She doesn't know what is going on. Her nurse practitioner calls me at 8 p.m. with the results: multiple lesions throughout all bones, throughout the liver, and breast. Whatever the type, it is extremely aggressive. The biopsy 18 months ago on the breast lump was negative. The NP tells me an oncologist has been called in and Mother will have a biopsy the next day.
Day 3: Biopsy cancelled. Mother is having difficulty breathing. Pulmonologist called in.
Day 4: Biopsy taken.
Day 5: Preliminary results confirm the cancer. I ask to be the one to tell her, as I don't want a stranger to do so. I have one of my cousins go visit so I can tell her while family is with her. She is amazingly calm about it. She says she has lived a good long life and doesn't want to “mess” with it. (At this point, my younger sister is on a plane to come stay with her through Monday). My sisters ask me to start making arrangements to bring her “home” to Maryland where we three daughters live.
Days 6-8: I begin making arrangements to have her stay at either a hospice center or an assisted living facility that offers hospice with onsite nursing since we do not yet know the projection of the disease. Final results of the biopsy will not be available until Monday. The case manager in Florida also informs me of a lovely hospice center there if it's necessary. I want all bases covered, depending on the scenario.
Day 8: Despite multiple calls to the PCP and oncologist, no return calls. No idea of projection (stage, type of cancer are prognostication are all up in the air). No idea if we can bring my mother to Maryland. No idea how to plan her care.
Day 9: Again, despite multiple calls to PCP and oncologist, no return calls. No idea of how I should manage her care. I am still making plans, calling centers, setting up three contingent plans; one sister is calling airlines, arranging oxygen, etc. One sister is now in Florida, setting up legal POA and dealing with financial issues, and getting “lost” in the multiple silo/specialist hospital healthcare system.
Day 10: Sister calls me and lets me know that Mother's breathing is worse. She is getting confused and sister is scared. I jump on the next plane I can get on. Between flights, the oncologist calls me. States that this is a very aggressive form of adenocarcinoma but would guess we still have one to two months.
I call the hospice center in Maryland and make formal plans. Sister calls me again (I missed connection and am stuck in airport) and gives me details on Mom. I realize Mom will not live out the next 48 to 72 hours. (I worked five years in home health and hospice). Change of plans, we get Mom transferred to the Florida hospice immediately and I will meet them there. I call one of my daughters and tell her to get her and her sisters to Florida ASAP, and then I call my husband and my youngest sister and tell them the same.
I finally make it to Florida and see mother that evening. She knows I am there. We talk a bit but she is sleeping a lot. Her cognition level fluctuates. She is uncomfortable due to massive fluid build-up, but not in pain. I stay with her. She loses consciousness in the wee hours of the morning. I wish I had foresight, I wish I had come earlier; I wish I could stop time ...
Day 11: The hospice center is lovely. I open the windows so mother can hear the trickling fountain from the garden behind us, hear the birds' songs, feel the Florida breezes she loved so much. We spend the day holding Mother and rubbing her, and my sisters and I tell her she is loved, telling her she is forgiven, share silly stories from the past, surround her, and encompass her in love.
I know, just know, she can hear us. Cousins come and go. A dear friend of hers stops by. Everyone says their good-byes. By midday, I know the grandchildren and husbands won't make it in time but I tell Mom what I know they would want her to hear. Finally, I draw up the courage to tell her it is OK to go, to look for the light and go.
So here is the part that I think only those in healthcare will truly understand. I've held dozens of patients as they've crossed over from this world to the next, as I know you have too. I am sure, like me, you feel honored be able to serve in that way. But here I was, leaning over the bed and holding her and at that last moment, mother actually opened her eyes, looked into mine and then took her last breath.
She went from my arms into God's. I cannot begin to find the words to express the beauty in that moment of loss. But I know you, my dear readers, will understand. Some people will think I've lost my mind saying that there was beauty in this death; that there could be a blessing in losing one's mother. But I know you understand. And I wanted to thank you for letting me share this.
Just being real,
The Real Nurse Jackie is written by Jacqueline Vance, RNC, CDONA/LTC, a 2012 APEX Award of Excellence winner for Blog Writing. Vance is a real life long-term care nurse who also is the director of clinical affairs for AMDA – The Society for Post-Acute and Long-Term Care Medicine. A nationally respected nurse educator and past national LTC Nurse Administrator of the Year, she also is an accomplished stand-up comedienne. She has not starred in her own national television series — yet. The opinions supplied here are her own and do not necessarily reflect those of her employer or her professional affiliates.