Being with a loved one during their last years, months and days was simultaneously the best and worst time of my life. The hardest part was in the beginning when it became clear that their life force was fading. Nothing could be done to reconstitute lungs or heart, to change the course of cancer or ALS. Death was inevitable. Now what? I made the decision to make each day the best it could be for my step-father and mother rather than turn our final time time together into a death watch. And, I did my best to make sure that anything said within their hearing was positive.
I was lucky in that my parents lived across the street from me. I could live in my own home and in two minutes be at their side. I also did not have a 9-5 job, so I could make my own hours and I lived alone. My outside responsibilities were minimal. I took them to doctor's appointments, shopping, lunch and/or dinner and family gatherings. I ultimately did all the cooking and made sure they took their medication and monitored their aides. I learned to take and interpret their vital signs, regulate their oxygen and, basically keep them comfortable. I listened to the rehabilitation specialists and learned how to help my parents sit and stand, use a walker and transfer from chair to transport chair -- without straining my back or putting any of us in jeopardy.
Another very positive influence was family. Two of my three siblings and one of my two step-siblings lived within three hours of my parents. My Florida sibling came up at least once a month. And, my step-brother in New Mexico came several time. However, all were available by phone and spoke with their parents often - sometimes several times a day. My children all lived within 90 minutes and came often, with children in tow.. My neices and nephews both visited and called. The step-grandchilren and relatives lived about three hours away and across the globe. They called, sent pictures and visited. So, my parents had the good fortune to be in constant touch with their families.
The hardest part of all this was helping them keep their dignity and allowing them as much control over what was happening to and around them without jeopardizing their safety or well-being.
As a result, I have wonderful memories. While each death was difficult, on many levels, I knew I had given my time and love while they were alive. No regrets. It definitely made moving on easier.
I wasn't born with all this knowledge. I had to learn the hard way.
In 1988, I had my harshest lesson in patient care, or lack thereof. My husband, Michael, was in the hospital for five months. While I knew he was very ill, I didn't believe he would really die. I visited him in at New York Hospital half the week and worked at home, in Poughkeepsie, the other half. I have to admit I was afraid to interfere with the nursing and believed the doctors knew what they were doing and the nurses were dutifully carrying out their orders.
Then one day, towards the end, I couldn't find a nurse to help Mike with his toileting and he had an accident. I had to clean him up. I did not feel up to the task, but there was no one else. When the nurse finally came, Mike told her to go, his wife was helping him. I will never forget how happy he was to have me helping him and touching him. I didn't "get it" at first, and then it was hard to forgive myself for not "getting it" much, much sooner. And, while it may not have helped Mike, it did help me help everyone since, including a neighbor with ALS, my step-father with heart and lung failure and, most recently, my mother, who I cared for through two strokes and congestive heart failure.
So, now I'm going to share some of the things that I have learned over the years in the hope will help you and other caregivers through the experience.
Of course it would be impossible to create a definitive list, but there is more. And, I'm sure that anyone who has been through patient care could add what they learned -- if you have something to share, let me know and I'll put it up If you would like credit, let me know that too. I will continue to add to the list.
I will end with the concept of time.
Taking care of a parent or parents takes time, more time than you can imagine: either by their side or on the phone explaining why you are not by their side. Then there are calls to care providers, including family, trips to the various stores to "just pick-up this one little thing." It is easy to become frustrated and irritable. Often this is the result of not allotting enough time for your parent(s) and not allotting enough time for you to regenerate your energy. Give Senior Services a call because there is help available.
Time is the most precious gift any of us have. Living in the moment let us focus on what is right now and make the best of it. Looking for possibilities to create interest for both you and your patient makes the time go quicker and more enjoyable for everyone involved. Time with your loved-one/patient can be the most precious time of all. Caring for him/her is an intimate act. Finding ways to maintain everyone's dignity can be difficult but always rewarding, and, can turn out to be the most precious memories of all.