I planned to use these words for a eulogy at my mother's funeral, but when the time came, I was too overcome to speak at all. Now, it is 2 years after my mother's death, and I reread my words and want to share them.
As nurses, we have toolboxes filled with what we learned in school and from our experiences at work. We cannot just reach in and pick a tool at random; it has to be the right tool for the job. One tool I have is something I learned at a 2-day seminar about how to care for people with dementia. The speaker said that we go into old age with all sorts of baggage, and we have to tie up the loose ends in order to die in peace. She said that people with dementia, who were difficult to manage, had not been successful at dealing with their baggage. One of the tools she gave me was the idea that we have to cross over to their side of the street, communicate in whatever language they use, and try not to correct them or orient them. I used this all the time when I was a visiting nurse, and I had great success with my patients with dementia.
In the early stages of my mother's dementia, when I was still in denial (and she was too), I was often angry at her for not taking responsibility for the part she played in her ill health. She was angry at me for not believing that the (choose one) insulation, carpet fibers, or something the maintenance people did, caused her emphysema. Finally, when I could no longer deny her dementia, I reached into my toolbox and learned how to communicate with my mother. In the end, I can honestly say that I helped her to resolve some issues in her own way and die a peaceful death.
I have never spoken at a funeral before, but this time I need to say a few words. My mother was sometimes difficult (I have been accused of the same thing). But she was so strong, and she was a fighter.
When my mother was diagnosed with emphysema, she refused to believe that it might have resulted from her smoking. She had to deny that because otherwise she would have had to admit that cigarettes, her best friend, had betrayed her. So, her illness was blamed on all kinds of other causes and those were the times that I found my mother to be most difficult. She wanted us, or me, to fix the things that were making her sick, and I, of course, did not believe that anything but smoking was the cause of her illness. Moreover, she was angry and saw conspiracies everywhere. Despite my choice to not participate in what I felt was my mother's self-deception, she managed to find a new place to live in, arranged a move, and managed investments that helped her to pay for all of it. These are the things my mother never did when my father was alive, but which she felt strongly about and fought to make happen, even when she was sick.
Then came the illness, dementia, which really meant the end. My mother was always most fearful of having an Alzheimer's type of dementia. She valued the intellect, and her intellect in particular, so strongly, but what she feared the most was what she got. At first, the signs were subtle: a little forgetfulness and repeating herself. Soon it became more obvious. My mother stopped doing crossword puzzles. She could not tell what TV program she was watching. She forgot appointments. Even then, my mother was a fighter. She would not go gently into that good night. When she started forgetting who people were, she decided to write down everything. If she spoke to someone, she wrote down that person's name. She might not remember the person the next time she saw her or him, but she could look at her list of names and figure out who it was.
I am grateful to my mother for being so strong, for being a fighter like she was. I believe she passed on that strength to me. The last time I saw her, I told her how I admired her and how grateful I was that she had passed on those qualities to me.
The last time I saw my mother she was not fighting. She recognized me, but I do not think she could connect me with her past. "Did I ever get married?" she asked. Of course, this was very sad, but it was not all bad. There was an acceptance; my mother was not fighting anymore. It was not that she had given up (I do not think), but just that she had accepted where she was in her life and what she was waiting for. And that last time there was nothing difficult with my mother. When one takes away the strength and the fighting, and the anger, the only thing left is love. That is what I felt in that room with my mother: our love for each other. We found things to laugh about, and we hugged. In addition, my mother smiled more than I remember her smiling on any other day of her life. Moreover, for me it is not sad to picture her lying there, even though she was skin and bones, and I knew the end was near. Because in that room, there was a lot of love, and I know that love was there all along. I miss you, Mom; I miss you already.
This essay is just a snapshot. It helped me grieve when I wrote it, and it comforts me now.
Seeking Interesting Manuscripts!!
Home Healthcare Nurse (HHN) welcomes your contributions to the body of literature that improves home care and hospice nursing at home. HHN is a peer-reviewed journal. Author guidelines can be accessed by visiting http://www.homehealthcarenurseonline.com.
We are seeking oncology patient case studies (so that others might learn from your experiences), papers related to performance improvement initiatives, infection control, symptom management, overviews of various facets of care, sexuality and cancer, holistic approaches to cancer care, and aspiring to be a certified oncology nurse (this is a part of the "So You Aspire to Be[horizontal ellipsis]" series, which so far has included certified diabetes educator, transcultural nurse, hospice nurse, and rehabilitation nurse).
The 2007 Editorial Themes for HHN are available on the Web site. Diabetes mellitus, congestive heart failure, and cancer-related articles are so important that they are scheduled as they are accepted.
Other topics we are interested in include
* Caring for the home care patient with a new colostomy
* An overview of caring for the cancer patient with a tracheotomy at home
* Psychosocial aspects of caring for the cancer patient at home
* Numerous aspects of hospice and palliative care at home
* Pediatric cancer care
* Best practices
* Teaching patients/families about medication management at end-of-life
* Aspects of technology related to cancer care
* Skin care considerations for the patient undergoing chemotherapy/radiation
* Your story title/topic here!!
There is also a short column called "Commentary" that runs at the end of most issues. This is "your say": "my best day in hospice/home care," "my funniest home care experience," "if I only knew then," "what I learned from my most difficult patient/family," and so on.
Tina Marrelli, MSN, MA, RN is the nurse editor of HHN. She would love to hear from you. Please contact Tina with your idea/timeline for an article by e-mailing her at [email protected] If you have been in home care or hospice care for many years, you might know some of her authored books, including the Handbook of Home Health Standards and Documentation Guidelines for Reimbursement or Hospice and Palliative Care: Quality, Compliance and Reimbursement. Tina can also be reached by calling (941) 697-2900.