The goodbye has not been perfect, but it has not been imperfect either--there have been many warm and sweet moments. I looked back at my notes from the past few weeks and realized this very last leg of my mom's life journey has been longer than I realized. At the beginning of the month, we started a period of breathing struggles, less eating and drinking, more pain medications, and a greater need for care. My dad said early this week, "She's not going to get better."
We've known for a long time that Mom wasn't going to get better, but our focus has been on quality of life for a long, long time. In fact, it has been so long that it's difficult to remember when her dementia started and her other health needs became more intense.
Looking back, there was the botched surgery she had many years ago. During the surgery she was without oxygen for a significant amount of time. She was in the hospital for a very long time, and when she returned home she wasn't the same.
Then there was a long chapter of excruciating back pain and heavy pain medication which limited her ability to fully enjoy many occasions or participate in activities often.
There were signs that her dementia was getting worse. For example, she scraped the edge of her car which led to no more driving. Also, once I lost her in a clothing store and at another time it was clear she was missing the essential ingredients in her wonderful oatmeal cookies that she brought with her so often when she visited. Her conversation became repetitive since should couldn't remember much, and then there was a time that she wanted to visit her parents who were long dead.
After that, she had a stroke. She survived, but spent many weeks in rehab. When she came home the Visiting Nurses would not take her since they felt she was close to death. We signed her up with Hospice who were incredible--they helped us prepare the home and learn how to take care of my mom who could no longer speak, swallow, care for her personal needs or move about as she always did. In time, Mom regained her ability to swallow, speak a few words, and move around, but she could no longer leave her home for any length of time or engage in many activities. She had a simple routine with my Dad, and a significant amount of caregiving by my dad, other family members, Hospice, and other hired help. She retained her sense of gratitude, spunk, and independence throughout this time.
Eventually Mom plateaued demonstrating no more regression, so Hospice "graduated" her. Yet she still needed significant support with regard to her personal needs. A new eldercare agency was identified, and while she went through the sign-up process, the family put together a patchwork schedule of care and caregivers to pick up where Hospice left off. As soon as the new agency started, Mom's condition began to weaken. Her breathing was labored, and she stopped eating. Pain medications were prescribed. And now she is bedridden and seemingly awaiting death. Family members have been with her around the clock. We've been playing beautiful music. The agency staff has come several times a day to make her as comfortable as possible and she sleeps in a a modern hospital bed which is comfortable and covered in smooth, soft sheets and pretty blankets.
Mom is clearly suffering even with the meds prescribed--this is difficult to watch, and many feel a move back to Hospice is the way to go, but there's seemingly little time left. I've been there a lot and while I'd like to be there now, I'm taking a break while other family members say their good byes and have some personal time with Mom. Mom and I have spent many hours in the past two weeks sitting close to one another and listening to mostly hymns and show tunes. I've spoken a few words to mom reminding her that I love her and that's she's lived a wonderful life. In fact, I put together a short video of her life and while working on it, I realized that Mom has had many, many, many good times, good friends, and good family members all throughout her life--it was overall a happy, good life. The sadnesses that occurred now and then all found a meaningful end.
I told Mom we'd take care of Dad and I reminded her that there are many who have gone before her, and relayed the common pleasing image of her large group of family and friends waiting for her in heaven.
I'm not sure what the next days will bring, but I'll be close and help out as I can. I wish Mom a safe and loving journey beyond the life we know here on Earth. She can move on with a clear conscience and the knowledge that she was a loving, good mom who did all she could to love others and promote the good possible. Onward.