I'm sad tonight. I just got back from visiting Mom. She seemed content but not herself. Confused. She is not in a rehab facility as originally planned. The rehab programs were much too aggressive for her strength and energy level. The doctors conferred and agreed that hospice home health was appropriate. The hospice folks came and talked with us all in Mom's hospital room and suggested a stop-over at a hospice hospital for a few days - for two reasons: to get a good assessment of her strength and abilities as well as to help me know how to better care for her. The majority of the time at home will be just her and me, home health care providers only coming a certain number of hours a couple times a week.
Her health is in a Catch 22 place: she is weakened from anemia but they can't give her enough blood to solve that problem because it creates a worse problem of increased congestive heart failure. She has never been formally diagnosed with dementia but one of her hospital doctors said he is certain she has it. Her "short term memory issues" are certainly dementia. It's funny how just staving off that label had been a comfort, an island respite of denial. But now that she has experienced such a harrowing health emergency, it is showing itself even more. Some days she is fine; other days she seems more confused, not quite on the right page. It is puzzling to me how one day can be so different from another. Is it rest? Is it nutrition? What makes the difference?
She was transferred to the hospice hospital yesterday at dinner time. She and we are so blessed with the beauty of this place. It is a home in a beautiful neighborhood I am very familiar with. It is the neighborhood of my church and I know a dozen or more people who live within a mile. Our Women's Ministries director lives right next door. The home was donated to Hospice, remodelled and expanded to be a home-hospital.
She is in a room with two other women but you can't really tell from her area. You can hear but you can't see. There are beautifully painted partitions between beds. Pale green backgrounds with big flowers painted on the sections. Not hokey flowers but real flowers with stems and roots - kind of like botanical paintings. They are really very nice. Her bed faces a glass wall that looks out to clinging vines in the eaves, a Spanish tiled patio, lush green grass, and a round swimming pool with a gurgling fountain. (The pool is behind fencing.)
We thought it would be a wonderful transition for her on her way back home. However, her first reaction was discomfort and anxiety. I realized after the fact that her anxiety was probably a result of a number of factors. 1. Despite the fact that we had a good meeting with the doctor and the hospice people the day before and she was very congnizent during it all, when it came to the next day, she didn't remember about it. When reminded of the meetings and the details, she said she remembered. But I had to explain it to her about 4 or 5 times that afternoon before they came to get her. 2. The ride from the hospital to the hospice place was frightening and uncomfortable for her. On top of not remembering why, what and where, it was an unimpressive [euphemism] transport van with a very rough ride. I can see how she'd be frightened. Plus, the strap securing her to the gurney was too tight around her legs and every bump hurt her right shin - and there were a lot of bumps. I went with her and I can't imagine how she would have felt without me. It was a pretty awful ride and she would have been so scared if she was alone.
These two factors together I think set her up to be anxious about even being in this new place. What I thought would be the comforting and comfortable aspects of the place seemed to produce just the opposite in her. The homie-ness of the place, I think, led her to distrust it. We spent a few anxious hours before she relaxed and seemed comfortable enough for me to leave. I had received some calls on my cell phone and spoke with the nurse for a bit, too, so I was out of the room for about half hour. By the time I got back, my brother and sister-in-law had arrived. We walked in together and Mom was much more relaxed. When they commented on some of the nice features of the place, she agreed. She was given something earlier to calm her nerves and I also think the time away from me actually helped, too. Sometimes, fear and anxiety can magnify when we're with someone we think can take it away. I often think of how a child who has hurt himself will sniffle with a quivering lip while in the presence of those leading him to his mom, but the moment he reaches her, it all busts loose and he erupts into full blown crying. It all comes out. We adults do that, too, in more subtle ways.
Today Mom was quiet. I got the sense that she was sad but I didn't get a good chance to come out and ask her during my first visit. When I came back around dinner time she seemed contentedly picking at her plate - she has little appetite. I had all my "stuff" with me, purse, bag of miscellaneous, as well as some food my sister-in-law prepared for Mom. When Mom saw me, she said, "Where are you going?" I explained that I was just coming back after being gone a few hours.
Somewhere during the first few moments of this visit I had wanted to encourage her that this place was only temporary - thinking of her quiet and seeming sadness earlier today - so I explained again that it was just for a few days before getting her home. She asked me where that was. On a couple other occasions when she's been in a confused moment (perhaps it's pain medication moments) I've explained that it's my brother's old house, given her the address and she immediately says, "Oh, yeah" usually followed by a "Geesh! What's the matter with me!?" This time, she just seemed to be thinking about it.
A few moments after I'd been there she looked around the room and, seeing the homelike furnishings in front of the windows, said, "You must have cleaned up the house before you left." It seems she thought she was home. I guess that's a good thing, better than the anxiety and apprehension she felt the night before. But it made me sad. Tomorrow may be completely different. It may not.
When my brother and family came to visit after dinner, they brought their dogs. Mom loves dogs. And she especially loves "her" dogs - the dogs of my brothers' families. When Sparky arrived, she called him Tinker, my brother's similarly sized and shaped (but differently colored) dog of many years ago. As the dogs rested on Mom's bed and my brother's lap, Mom didn't seem very interested. We think she was tired. Still, it made me sad.
The doctor is coming in tomorrow, specifically to see her. Usually the doctor is there two days a week but constantly available by phone to the nurses. I understand this is a very respected hospice doctor who recently received an award for her excellence. Her coming in just to see Mom a day earlier than her scheduled rounds was at first concerning. But then we began to think it's probably to fulfill some insurance requirement regarding the time between admittance and a doctor evaluation. The nurse gave me no specific reason for the visit, but that's our assumption.
Thanks for bearing with me through this long post. I had kind of decided to not get detailed or too personal in any posts about my mom. But tonight I just needed to write about it.