At the age of eighty-eight, mom was no longer able to get around as well, and we were doing the outside work and maintenance to her ranch home. She was still doing what little shopping needed for food and clothing. She was still able to pay her bills and keep her checkbook, but it was time for a change. I was the one who suggested a senior community knowing things were changing.
There were four of us kids, spread out over twelve years of age from the oldest to the youngest. I was the youngest and my daughter and I had been sharing a home with mom for ten years. We had seen her through a hip replacement, a broken leg, and several hospitalizations for ailments. My daughter had left for college now, and I had met a man who would later become my husband. The opportunity had come to move to Texas with this man but it would mean leaving mom to be assisted by my family still in Indiana. Because of this move, mom thought it was time to sell the big house we lived in. She was a realist and that was a blessing. She looked at retirement communities and we agreed on a senior apartment complex with a shared dining and common areas. The move happened quickly and I was in Texas a month later.
It went well for her for three years with me in Texas and the rest of my family in Indiana. She had a small apartment but privacy and could come and go as she pleased. She began falling, and then she took too many of her medications in one day. She was hospitalized, and later found to have a failing heart and kidney failure. She needed heart surgery at 91 years old. It was a risk, but if not done, she would not live long. I came back to take care of her for three weeks after she came out of heart surgery like the strong woman she was.
Strong or not, she was getting older and an assisted living facility was the next big move to assure her medications were controlled and her finances were monitored by my sister since she had a habit of sending money to every cause that called on the phone. I went back to Texas for a year before moving back to Indiana for good. Mom’s vision was slipping away due to glaucoma and she was labeled as having mild Dementia related to age, heart, and kidney disease. She was forgetting what happened yesterday, the day before, and some of the months were running together. She had covered her forgetfulness for several years from what we saw on her finances and closets full of overbuying things she had already purchased only days before at a forgotten grocery store trip.
These were only a few of many signs of rapid decline in my mother’s ability to care for herself that we saw. She could still carry on a conversation, sounding as intelligent as she had always been and covering her forgetfulness blaming age and being tired. For the most part, it was working for her until her health decline made us aware of her ways of hiding things. On top of facing our changing roles between child and parent, we had to become the advocate for her minimum standard of care in the aging long term facility model in the United States.
Long term care should be labeled, “Death by discard”. It may sound harsh, but often elders are left in these homes for the old with few visits by family. It gave me an extreme amount of guilt and depression by committing her to live in a facility because I knew the visits from family would be few. By “few” I mean, once a week for an hour on Sunday afternoon with grandkids in tow kind of “hi Mom-love ya” visits.
I am not dismissing that I did the same type of quick visits while living my life, working, paying bills, and caring for my kids. It’s easy to forget to call mom every day and to make a point to stop in every couple of days just to check up on her. Soon I started to see healthcare from a different perspective. I had lived as a nurse for 30 years with 16 being in long term care. I made excuses of knowing how understaffed facilities were and that it would not change. I tried to take on some of the burden of meeting mom’s needs until I saw an ever narrowing gap between a minimum standard of care teetering on the precipice of neglect. I knew what should be done, what was not being done, and recognized lack of training and care when I saw it because in my day in a facility I was one of those tyrannical nurses that CNAs hated working with. I was demanding to make sure residents received above standard care. I dealt with a lot of families but none ever accused me of not caring for my patients.
I was still hesitant in becoming “that daughter or son” in my mom’s facility. The one was the kid I dreaded dealing with when I was working long term care. The one who came in once a week and thought she knew everything that should be done and how. The one that complains all the time and doesn’t see mom’s confused days and bad days and is on her best behavior on the days of a visit. I get it.
I did become the one. I saw dirty toilets, unchanged linens, trash overflowing, and lack of staff. I heard excuses of trying to meet the needs of so many with so few. I was the one who was not notified when mom fell and I saw her three days later with massive bruising on her right side with dried bandaids over a skin tear which would retear when the bandaid was finally changed. I was the one who worried at night in my bed if she was falling or messing her bed with no one to help because the night shift was short. My parent had become as much a worry for me as I was for her when roles were reversed and I was the sick child in the care of someone else.
As we have moved into the future, my mom is 94 and now in Hospice care. The last three weeks feels more like a year with mismanaged care, agency nurses covering a failing assisted living facility and Covid 19 infection outbreak that has pushed my mom’s health over the precipice. She regains to a coherent state for minutes a day instead of hours, overshadowed by confusion, fear, and a moaning ache of age and discomfort as her days dwindle. My role as her advocate for respectful care has become as a lion over a cub. While others dismiss that she has lived a good life, and some justify that she should be drugged to keep her stoic and safe, I continue to fight for her right to be monitored, respected, and loved for where she is in life and not push her off the cliff to make room for the next one.
This small shriveled woman sleeping her days away is the same woman who sat up nights holding washrags to her kids fevered heads. This is the woman who picks up the falling toddler. She is the woman who hangs sad silly pictures of nondescript animals on our refrigerator and always has a warm meal and seat for a stranger. She is the brunt of dad’s stupid jokes and our pranks. She is the patience blocking dad’s anger and our butts on a bad day. She is the magician who makes a meal for six stretch to eight when dad brings home guests. This is the healer who had endless bottles of mercurochrome and Bactine covered with bandaids. This is the gardener who canned enough food to last all winter from her hard tended garden. This is the dark figure sewing pajamas at 2 am the day before she made Christmas dinner for 35 people by herself. This is the chauffeur, PTA member, seamstress for school plays, church social participant, kleenex holder and carrier of the mom purse of wonders. Her very existence is my inheritance and making a caregiver see that vision of what she has been and what she is to us is hard when they view her now, shriveled up and quiet.
While you never want to face the dilemma of long term care and being a parent to a parent, it may come. If that day comes, never take a backseat. Be that one kid. Be your parents advocate for care and respect. As the roles change, know that you will be in her place some day and pray you will have the same grace of someone loving you so hard that they are the one.
If you are considering long term care for yourself or a loved one, check back on my blog next year. I am working on a book to help families transition and navigate this journey.
sherrystruthtofiction 