Homecoming

Today I was once again released from the rehab facility. I am so relieved to be free from all of the confines and limitations and difficult conditions. I celebrate my freedom and my overcoming and my accomplishments. I still have a ways to go, but I have gone so much further than I imagined possible. I use adapted tools for now (special dishes and silverware and pens) but will get back to using normal items. I still cannot do buttons or zippers or snaps or tie things but that will come with time. Thank God for pull on pants and super cute Sketchers tie-less shoes. I am able to do so much more than I could at the end of January and it is a blessing to be home. It feels weird to not be confined to such a small space, to be able to get a drink when I am thirsty, to have a choice over what I eat, to not share a bathroom with four strangers, to not have to wait until it is convenient for someone to give me my medicine. It would be better if my mother were not in the hospital right now recovering from a stroke and a serious infection. I am still lonely and still missing someone to talk to and be with.
Yet for so many at that place there will be no homecoming, no new freedoms, no return to family, no return to a "normal" life. That existence is all that they will know from now on and that breaks my heart. In so many ways it is so wrong. It is so neglectful, so undignified, so restrictive, so demeaning, so limited. People become diagnoses become problems. Many workers are there because they care and want to be there, but many are there because it is a job and it pays and they were hired. They do not have any investment in the job, any compassion, any dedication. It is a paycheck. The system is broken and after 3 months living it I can say how it is broken but not clearly how it needs to be fixed. There are so many things to fix and from so many directions - policy, hiring, staff behavior, staff ratio, facilities, etc.
Most of all tonight I am giving thanks for my return home and prayers for those that I left behind.

I get no respect

I am so thankful that I can speak up for myself and fight for my own dignity and respect. Two mornings ago I wanted to eat Breakfast in my room.  I avoid the dining hall like the plague infected chaos that it is. The CNA refused to help me back in bed and forced me to go eat in the dining room. When I got back from therapy, I asked to have help getting back into bed. She did this, not the gentlest but she did help. About 20 minutes later I realized I really had to go to the bathroom. I requested this and she went off. She was in another patient's room and stated screaming "I just put her to bed not 20 minutes ago. She should have gone then. She does nothing but lay around in bed anyway. I am not putting up with this. She is such a pain." Um, no. This is NOT okay with me. I ended up speaking with the nursing director who was as horrified as I was pissed. She took down detailed notes and spoke with the CNA about her behavior. This particular person will no longer provide care for me as I am not comfortable with it. She humiliated me by name in front of other patients and staff. I could hear her down the hall she was so loud.Since then the CNAs have been efficient but very cold and abrupt. I am sure her story was told to them very differently than what happened. Whatever.

A Man is Not an Island

Today was the facility's Christmas party for families and residents. I attempted to go, but when the music started my migraine began to let me know it was not down for a Christmas sing a long. But while I was there waiting for it to start I noticed a huge divide in the patients. It is something I have noticed here before. It is not a divide based on ability, cognitive function, or behaviors. Rather it is a divide based on who has family that visits and who does not. Today the results were about half and half. The families that came were loving and caring and excited to visit. Those without visitors sat quietly at tables with others without visitors, looking around at all the new people in the room. I can't say if they were all sad, but it broke my heart. I cannot receive a visit from my Mom this holiday season, but I am only here temporarily. For those who live here or are here for a long time it must get lonely. I wonder if they feel forgotten, lost. Even if they cannot communicate, who knows how much they can hear and feel and know, My friends have showered me with love and support and that has made a huge difference.

The Sound and the Fury

Many of the residents here have difficulty communicating. There is a sweet old man (I think) who likes to hold my hand and give me high fives but no matter what I do I cannot understand a word he says. I cannot imagine the frustration of trying to talk and having it come out garbled or not at all. Some people here are really patient about speaking with the residents, but others just pretend to listen then nod and carry on with whatever they were doing. I can communicate. I can make my voice heard. I can speak for myself. I can have a mini temper fit like I did this afternoon (long story) and be understood. When someone who cannot speak clearly works so hard and cannot be heard, can not speak for themselves, can not be understood I can only imagine the frustration.The least we can do is try our best to hear them, to give them a voice, and to understand when they get upset over you not understanding them. I pray that i never lose the ability to communicate, but if I do I pray that someone will take the time to hear my voice.