2015-01/17 –
I spent all day every day in the hospital with my mom. The doctors were pressuring me very quickly about discharging her. I had learned that she had taken the car out to find the moon one night since it was “just so pretty” and my heart skipped a beat at the thought of how easily I could have lost her. She went on and on about how she would go to San Francisco. She wanted to drive over the Golden Gate Bridge as many times as possible.
I had a huge decision to make. There was no way she could go home alone in her condition. The doctors had put her on some meds at this point. She was taking Donezepil (Aricept) daily now for the dementia. She was taking Trazodone (an antidepressant) as needed for anxiety and for sleep and she was taking Lisinopril for the hypertension they had discovered when they did her initial tests.
Her chosen medical proxy had been my stepdad but he was incapacitated. Her backup health care proxy was his daughter-in-law. I would be lying if I said it didn’t hurt me when I found this out. However, My step dad’s daughter-in-law did not want that responsibility and relinquished it. She passed that responsibility on to me. That meant that I needed to make all the decisions about my mom’s care at this point. Being responsible for your children is one thing. Being responsible for your parent is something on a whole different level. My mother was someone who passed judgement on me my whole life, and the scars from that re-opened as this all unfolded. I felt judged even though she was not in her right mind. I was so terrified of making the wrong choice. I was truly a mess.
The doctors were getting impatient and I needed to make this decision very quickly. I lived in a tiny little one bedroom apartment on the ocean. I didn’t have space for her to come and live with me, and didn’t have the disposable income to give up my work to provide around the clock care and supervision for her. The home she had been living in belonged to my stepdad. It was not her home so that would not be an option either.
I looked at her medical records. They had done a lot of tests. Her cholesterol was high, her blood pressure was high, but she had nothing that explained her mental status except the vascular dementia that they had just diagnosed. They did a brain MRI, they did a chest CT, they did a chest Xray, they did a head CT. We talked about her history and the family history. There was a long family history of dementia and heart disease. She apparently had both at this point. She was a long time heavy smoker. Somehow, if I were to look for a silver lining, in her delirium she had forgotten that she smoked. They had found lung nodules on the chest CT, but that wa the least of the problems at this point.
My decision needed to be made. The hospital staff and social worker talked about the option of placing her in assisted living since she was still mobile or a nursing home, but stressed that she needed to be in a secure facility because she was desperate to get out and drive. I told them I would go look at some facilities and make a decision.
That night I looked at her insurance and realized that she had no long term care insurance. This meant that any assisted living would be out of the question. I would have to apply for state assistance for her care, which limited my options of where I could place her substantially. I did a lot of research that night and came up with a list of places. I called them all first thing in the morning and made a list of places I could visit. The hospital had put a 24-48 hour hold on her discharge so that I could make arrangements. I was in no way prepared for what lie ahead of me when touring these facilities. I didn’t know how I was ever going to be at peace with this decision at all.