Farmington Square

Wow...it's been about 10 months since I've last posted. As it turned out, the neurologist in Salem refused to see Mom. He said she's not his patient anymore, and Dr. Quinn's "referral" wasn't worded in such a way that he was willing to see her. I tried to get that cleared up through Dr. Quinn's office, but it was to no avail. Before long, however, she began to show more signs of Lewy Body, so we accepted the diagnosis and gave up the idea that it was NPH. Even if it was NPH, her progression became so swift that we felt the damage was probably irreversible, anyway.

In March 2011 Mom began to have what we assume are hallucinations. Thank goodness they don't seem to be scary ones like many LBD patients have. Unfortunately, with the hallucinations came increased wandering. Especially troubling was that she would leave the house during the night. It was only into the back yard, but it was only a matter of time before she attempted to go out in the front. Additionally, she would often fall. The first time this happened was in the afternoon. Dad had been in the back room and went to check on her, but she was nowhere to be found. After looking through the house, he began to check the backyard. He has two sheds and a lean-to in the back. He finally found her in one of the sheds. She had fallen and couldn't get back up by herself. When questioned, she said she was looking for her "conscience."  That night he found her outside in the shed at 4:00 in the morning. The next day, she headed out there after her bath in the evening. It was late enough to be dark outside. The next morning, Dad showed her every item in the shed, trying to help her identify what she was looking for. She just kept saying she was looking for her conscience.

This sort of thing continued and increased as the months passed. She became unable to walk without assistance as her falls became more frequent. She began to lose control of her bladder and bowels, especially when she fell. There was no way to reason with her to stay seated until she had someone to help her. Her ability to communicate became severaly impaired. The strain on dad was enormous. In June my sister and her daughters moved in for about 10 days while their house was renovated. During that time, my sister caught my mom trying to get out the front door "to see the midgets." Dad set up an alarm system to alert him when Mom tried to get out, but it was becoming increasingly apparent that Mom was no longer safe in her own home.

On Labor Day Weekend 2011, Mom moved to Farmington Square. She now is in a wheelchair much of the time and often needs help getting food to her mouth. She has good days where she'll repeat some words and phrases and bad days where she barely talks at all or slurs her speech when she does try to talk. She is unable to compose independent thoughts that make sense. I go see her every weekend and every Wednesday. I enjoy my time with her and never want to leave. The other residents are quite entertaining, but those are stories for another post.

Just One Good Day

Today was another trip to OHSU. My dad brought up normal pressure hydrocephalus (NPH) again. I've been frustrated before that he keeps bringing it up because I just want the whole diagnosis process to be over so that we can move forward. Dad wants another spinal tap. I admitted to him that I couldn't get the idea out of my head, either. It's our only chance to bring Mom back. The neurologist at OHSU doesn't think that's it at all. Bottom line, though, is that a spinal tap can't do any damage. The "cure" for NPH is a brain shunt. THAT is what could do more damage if she doesn't have NPH. But we won't do a brain shunt unless the spinal taps show definitive improvement. I'm asking for two, even three spinal taps. The neurologist advised us not to do it but agreed to refer us to the neurologist in Salem for this procedure. I told him we would not have peace in our hearts until we tried. I don't think my dad will be able to accept Mom's decline and impending death unless we rule NPH out entirely first. The neurologist has been giving her these little brain functioning tests. I don't know what a perfect score is, but in May she scored 27. In August she scored 25. Today she scored 20.  On this test 15 and below is considered moderate to severe dementia. She's still considered mild to moderate. She said the date was January 2012 today. It's February 8, 2011. She said it's fall now.

On the way home, dad asked her if she felt satisfied with the appointment and how the neurologist is treating her condition. I get annoyed when people ask her how she feels about anything because her answer nine times out of ten is "I don't know." Today, however, after a long pause, she answered, "I wish he would give me just one good day." Just one good day. That's all she wants. I asked her what she would do with that day. She said, "I dont' know." I know what I would do with that day. I'd hold her and tell her how much I love her and miss her and beg her to stay with me.