Forever Changed: Wisdom Gained from Mothers End of Life Journey

judybsn

My mother, an extraordinarily healthy and physically fit little lady of 83, had never had any encounters with the medical system as a patient except for the delivery of her four daughters. She was gaining fluid in her abdomen and that lead us to look for a doctor for her. The diagnosis was grave- stage 4 ovarian cancer with about a 4% chance of survival. Sometimes I wish they would tell people these things so they could make an informed decision but she didn't ask and they didn't say. She had six months of chemo before her CA125 started to rise again, signaling the end of its usefulness.

The one hour drives into the city for chemo were precious times of closeness and conversation. We hadn't been this close for some years. One little routine we enjoyed was eggs benedict from the hospital cafeteria. Normally you would think chemo would make one so nauseated one wouldn't even think of eating, but not for her. This outing always started with eggs benedict. Whenever I think of "eggs benny" I warmly remember these special and unusual times.

Once the chemo stopped working she was at home with oral meds. Her hair, which was just growing back, fell out again and after one dose she decided she was done with chemo and would let nature take its course. She still had lots of energy and was gardening every day. She gave me three large bins of top soil from her fertile garden and put them in my trunk for me. She had always been strong and physically fit from all her outdoor work on her half acre of manicured gardens and even at 83 and 110 pounds could out-lift me. She had some good months of gardening before the inevitable downward slide occurred.

During the last weeks of her life I stayed during the day and my sister came after work and stayed the night. I had attended an inservice at work about terminal patients and the presenter had said that it was meaningful and comforting for people to talk about and review their life as it was coming to a close. As a result we spent hours talking about her childhood, what it was like growing up in the "dirty 30s", nursing in the 40s, and starting a medical practice in a small west coast village with my father. I wouldn't have missed this precious time for anything but might not have gone there, thinking it might be distressing, had I not been encouraged to do so. This was great advice.

A wonderful "coincidence" occurred one day at work, when I was sent as a float to the medical ward. I worked in labor and delivery at the time so this was a somewhat unusual assignment, but off I went. It happened they were not very busy and I spend a good part of the afternoon reading the "log book" where it was recorded how patients had spend their last hours before dying. The purpose of this was to be able to provide families (and staff) with some details, especially if the day nurse happened to have been off duty when they died. Here I read of the final day and hours of some twenty patients. It was so helpful and informative, more than any textbook could have provided! I was stunned by this "gift". At this point in my career I really had never worked with more than a small handful of terminal patients and didn't really know what to expect. That was one of my last shifts before taking a leave to care for my mom.

You see, my mother did not want to go to any hospital or to be cared for by non-family members, which made things a little tricky, since only two daughters lived nearby. She was an extremely private and independent person. It was complicated and difficult and we were in absolutely desperate need of respite as well as understanding from our spouses as time went along. Caregiver fatigue became our very real companion.

Here's a few vital things I learned on the journey:

Don't isolate. Staying in touch with friends, family and community is the healthier way to go. Also friends, family and resources in the community can bring welcome relief if you are creative and open to receiving outside help.
Asking for help doesn't make you a failure. Trying to do it all by one's self is just too hard!
Even things as simple as being able to get out for a walk can be rejuvenating. I found getting out into her yard and soaking up nature for a few minutes several times a day did wonders to lift my spirits.
It is important for caregivers to take care of themselves. Being under this kind of stress can really compromise the immune system, so getting some exercise, getting outdoors, eating good food and getting enough sleep are important. You needs to stay healthy to be of any use as a caregiver. I found the fastest way for me to "go crazy" was lack of sleep, living on junk food and staying indoors all the time.
Getting into a routine helps to create a structure to build the day on.
A baby monitor or call bell system can relieve the fear of leaving the bedside for both parties.
Experts say that people who have an active problem-solving approach do better than those who feel helpless and hopeless in their circumstances. Doing research and gathering info about the disease, caregiver stress, support groups and resources in the community is helpful. The cancer agency has a fabulous library that the public can access and info written specifically for patients. Doctors and experienced nurses can be a good source of information on what to expect regarding the specific disease course.
Keeping the big picture in mind is important too. Asking things like, "What will I do when my caregiving responsibilities are over?" It can really leave you at "loose ends" when the job is done if no thought has been given to this aspect.
If depression hits don't be afraid to admit it. Your doctor might be abe to offer helpful advice or a referral to counseling or other community resources. Try to be lighthearted and focus on the positive, use humor to cope.
Share your thoughts and feelings with at least one other person. Keep a journal to process your feelings and to get perspective.
Pray for strength to continue. Pray about all the little things encountered in a day of caregiving. It helps to feel God there with you, and I found talking to him as I went through the day very therapeutic.
Know you're not alone. Caregiver stress and burnout is a very real danger for longterm caregivers. There are many good resources to access regarding prevention and treatment, even on the internet.

My mother died peacefully at home, as she had wished. After she breathed her last I had a few moments of panic, realizing I was now completely alone in her big house. It was a strange and overwhelming feeling. I could feel the moment everything changed and she left me there alone. It was profound. I wanted to check for an apical pulse to be sure before I called anyone, but realizing I had no stethoscope I just put my ear to her chest and listened- nothing- dead silent. I talked to her and told her I loved her, stroked her brow and then sat down next to the bed to figure out what to do next. Shortly thereafter my husband came through the door, as if sent by an angel, and the phone started ringing, first one sister, then the next and the next. They hadn't "known" she died, just felt prompted to call. I thought, "This is unreal, how do things like this happen!" I do remember one case long ago in the wee hours of the night, where a patient had just been pronounced after an unsuccessful Code when his daughter called from out of state. That seemed coincidental and a bit spooky at the time, but now that I've experienced it first hand I don't think so.

Some experiences in life profoundly affect us and cause us to change directions and search out new paths. Looking after my mother in her final days was one such experience for me. Some time after she died I left labor and delivery and tentatively began to explore hospice, home care and long term care. I was led to a wonderful long term care setting and am now happily nursing there, thanks to my experience at my mother's bedside.

Forever Changed: Wisdom Gained from Mothers End of Life Journey

Here's a few vital things I learned on the journey:

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