April 21, 2011
This week has been pure hell. I knew it was going to be bad. I just didn’t know it would be this bad. Mom went into the nursing home on Monday. She hates it. She’s upset. She’s angry. She’s sad. All those fears I’ve lived with for years about institutionalization, I now see happening to my mother. Information is not shared amongst staff. Physicians are uncaring and uninterested. Staff are smiling, spouting warm words of sympathy and understanding, yet quality of care is far below my expectations. I met with the director today. She was full of excuses for the facility and the physician. It didn’t take much effort to shoot those excuses full of holes.
We were required to read and sign over sixty-five pages of documents for my mother to enter this facility. In addition, unsolicited, I provided them with information about my mother presented in the same format as Lauren’s Plan of Care. No one, NO ONE, read it. Yet decisions were made about her care, her medications, and her abilities. Last night I drew up my own documents regarding Mom’s plan of care and medical decisions. I took them to the director today and asked that they be signed by the facility. I presented them to her with a lovely smile and watched hers disappear. “No one has ever done this before!” Gee, where’ve I heard that before? She did not agree to sign them, but Mom’s file got a major overhaul and now includes those documents. If the changes outlined in them do not occur in a timely manner, I will push to get them signed. Right now they’re just threatening reminders in that file.
Every day this week I’ve sat and watched my mother cry. Then I go home and do the same. But I don’t want my father to see how upset I am, so I sit in the bottom of my closet where I know he can’t hear me and sob. My mother is old; she doesn’t have many years left. They are not going to be happy ones. It is not in her nature to make the best out of this situation. I can rationalize that none of this is my fault and in many ways her own actions have resulted in this turn of events, but I still feel guilty.
My thoughts have been turning this week to all of those children over the years whose parents placed them in institutions. I’ve always tried to be sympathetic and nonjudgmental, but this experience is making that harder. I would do just about anything to have prevented my mother from going into long-term care. My brother and I pleaded with my parents for years to make changes in their lives that would have allowed us to help with the declines that their aging would eventually present, but they always refused. So, we found ourselves without choices. I know the lack of services, educational opportunities, and general ignorance motivated families to place their children with developmental disabilities into institutional settings. I just can’t conceive of anything short of uncontrollable violence that would have made that choice acceptable to me.
So, even though I am terribly sad this week, I also feel blessed. If not for self-direction, eventually, I would have been forced by my own aging to place Lauren in some form of institutional setting. I fear not being there to oversee her self-direction for the rest of her life, but, at least, I have the hope that her life will not be controlled by the vagaries and inadequacies of a living situation controlled by strangers. Rather, I pray it will continue to be designed around her specific needs and desires, for as long as possible, by people who love and care for her.