I heard noise in the kitchen early the next morning. I found Milford in there trying to make coffee, but instead he had just made a mess. He asked me if I had seen the young people that had spent the night in the living room. He said a young man and two young girls were having sex all night in there on the floor and that is where the puddle of water came from. There was a puddle of water, but to this day I don’t know where it came from. I just cleaned it up. We didn’t go to church that day. I spent most of the day cooking (Milford’s appetite was insatiable) and listening to Marjorie. I felt so sorry for her having to leave her precious Bath, NY. She loved it so much, and she was trying to make conversation to ease her pain of separation from everything that was familiar to her.

That night Larry and I took Milford to the Veteran’s Hospital because we wanted to know if they could help us. They took hours collecting information and examining him, but they sent him home with us, saying there was nothing they could do for him immediately, but now he was in their system as living in Lexington and they would contact us later for an appointment.

Everyone in my life that knew what was going on with my in-laws wondered why Lar and I did not take Milford to a nursing home. Of course, Marjorie did not want him to stay in a nursing home. They had been married 62 years and were dependent on one other. Larry and his brother did not want to take care of him, but they did not necessarily want him to live in a nursing home, either. I did not want him to stay in a nursing home because I knew what nursing homes were like sometimes. Nursing homes, when they function well, are wonderful blessings of modern society for those who are bedridden and in need of 24 hour skilled nursing care. I did not know anything about the nursing homes in Lexington.

I took a job in a nursing home in 1974, after I graduated from high school and enrolled in nursing school. It was a brand new facility, state of the art, with marble floors and chandeliers in the lobby. Two women in their thirties were given the task of training me. That was in the days before nurse aides had to have any formal training, accreditation, or background checks. My mentors were monsters. They swore curse words at the patients and treated them roughly. Very roughly. I quit that job as soon as I started and dropped out of nursing school. My mother was a nurse, my grandmother was a nurse, my step-mother, and my aunt was a nurse. They told me those kinds of aides were common in nursing homes and I would have to work with them if I became a nurse. I wanted no part of that! It was shocking to me that that sort of behavior would be tolerated. There were no elder abuse hotlines in those days, no ombudsman program. Shocking. Sad.

Around that same time I saw my grandmother Gladys, the nurse, care for her mother, my great grandmother Lillie Belle, as she aged.  Gladys had lived with Lillie Belle in a duplex of sorts for twenty years.  When Lillie Belle began to decline in her early nineties, Gladys became her caregiver.  She cooked for her and fed her and changed her soiled clothes and bedding.  She bathed her and washed her clothes and bedding and her dishes.  Taking care of my great grandmother consumed her life.  She slept in the same room because Lillie Belle would awaken in the night and try to get out of bed.  My grandmother Gladys knew that if my great grandmother fell, she might break a bone because Gladys had worked as a nurse for many years and knew how easily the elderly break their bones.  She did not want her mother to suffer any pain, so my grandmother did not sleep well, listening for Lillie Belle all through the night, and awakening when she heard a sound. My great grandmother’s care was accomplished without the use of geriatric chairs, foam or gel pads to prevent pressure sores, pain medication or other drugs, Hoyer lifts (a wonderful invention that elevates patients for changing bedding) adult briefs, or an electric bed that raised and lowered with side rails.

I admired my grandmother so much for her sacrifice and service to her mother.  When people asked her why she did not put her mother in a nursing home, she replied, “Because I love my mother and I know she would not get good care there”. Legal action was the only recourse for a family member harmed by nursing home staff, but legal action only addressed damage that was already done.  Perhaps the less than ideal nursing homes of the past were still better than home care for those without families or for those whose families did not love them or were not capable of caring for them.  Some families neglected their “loved” ones in their time of need, which caused the demise of the “loved” one in filth, pain, and misery. My grandmother told me about some of those.

Almost twenty years later, my beloved grandmother was herself a patient in a nursing home for three grueling years. It was not a good nursing home, unfortunately. It always reeked of urine and filth when we visited her. Every gift I gave her while she was there disappeared. I was not a decision maker for my grandmother and was busy raising three little boys and working full time just to make ends meet at that time. I think she was there because one of my aunts, who had power of attorney, did not want her moved, since it was the only nursing home for many miles in the rural area of one of my other aunts, who wanted to be able to visit my grandmother every day.

And why didn’t my aunts (there were four) show my grandmother the same sacrificial love that their mother had shown her mother? Perhaps because they were not nurses by profession and did not feel confident in that role. I don’t know.

I do know that my grandmother’s wishes were not honored. She had drawn up an “end of life” directive and had shared her wishes with me on several occasions. She and I were very close. When she had her stroke, I rushed to the hospital where she was unconscious and not expected to live. I cried, but knew that at age 89, she had lived a good life. Someone chose to ignore my grandmother’s wishes, and gave permission for a feeding tube to be inserted. My grandmother lived for three more years without being able to talk, walk, eat, drink, or enjoy life. She behaved in a strange manner when we came to visit, and was known to do awful things such as fling feces on the wall. Medicaid paid for a horrible memory that I will carry with me always.

I have a few other nursing home memories, such as the one when I was a Girl Scout and our troop visited a facility for Veteran’s at Christmastime to sing carols. I saw a man’s naked backside as he lay in bed. The accommodations were bleak, ugly, dirty, and depressing. Another from when my mother worked in a nursing home in Florida, and I visited her when I was on break from college. The patients grabbed at me and begged me to help them. My mother said they were short staffed and asked me to pitch in, and I did, but I did not go back. My mother did not work there much longer either.

So, now that Milford and Marjorie were in our home, and a nursing home was not the best choice for us, what was the best choice?

I realized soon after they moved in with us that Marjorie could not be relied upon to make good decisions regarding Milford. We had covered the couch with plastic, and then another slip cover, but Marjorie removed the plastic during my first day back at work, because she said, she didn’t like the crinkling noise it made when she sat down. Milford soaked the couch. Marjorie could not or would not help him to the bathroom, and the adult brief I put on him before I left for work was not enough to last until lunch time, when I came home to check on them.

And so we muddled through the first week. Milford soaked the bed every night, and Marjorie would yell at him for it in the morning. He would say pitifully, “I can’t help it”, but Marjorie insisted that he was a spoiled brat and that is why he wet the bed when they were first married. I tried to explain to Marjorie that he was sick, but she would not listen, so I learned to just change the subject when she yelled at him. I washed and changed the sheets, helped him to the toilet and helped him dress (he would try to put his feet through his shirt sleeves, etc., if I did not help him) and cooked their breakfast before leaving for my job teaching middle school art classes. At noon, I would rush home to check on them and help Milford to the bathroom. I trusted Marjorie to make sandwiches for lunch because I simply did not have time. At night I cooked dinner and got Milford ready for bed. I knew I needed help. But who could help us?

My grandmother had worked as a home health nurse in the sixties. In the summers I would accompany her on her home visits. The people we visited seemed very content to be living in their own homes in the countryside, and were pleased to see my grandmother and I come for a visit. My grandmother also volunteered at the local senior center, where I saw older people gathering for lunch, playing cards and checkers, making garments and crafts for various causes, and just enjoying one another’s company and conversation. Was there a possibility that Milford could spend time at a type of senior center during the day while we were at work and a caregiver could come to our home when we were not there at other times? I knew nothing about what was available for the elderly in Lexington. I did know there was a senior center because I had been there with my students for community service projects. My students and I had also been to an adult day center. I knew nothing about whether those settings were appropriate for Milford (would they take him?) or how much they would cost.

To be continued….