Lenny began the day with mom. He and the physical therapist did her physical therapy. She lifted her right leg off the bed many times for them but was not yet able to lift her left leg. Anthony came to see mom in the middle of the morning. She was about to be showered but he said that she was really happy today---one of her old day CNAs was with her today and this made her day and lifted her spirits a lot. I can’t get over the difference in her affect since her room was changed. It isn’t so much the physical room or atmosphere because the room is neat and clean, freshly painted and the floors were stripped and rewaxed too. All the staff are different. The staff she had before celebrated her accomplishments with her…they had a history with her…they knew her when she was first there in a coma. They came to visit her and chat with her. These new people don’t know her, nor do they seem to care to know her either. It’s just a shame. As if life isn’t hard enough for her, they change the people who she is most comfortable with and most private with---all new people changing her and dressing her and bathing her. Her whole affect is flat now. It’s like she lost her drive and determination in the move and it is hard, for me anyway, to motivate her to get it back…it is frustrating to see her like this. Some may say that it’s just a room change, no big deal. But I feel that the room she was in was her home for now…a place that was created with and in love for her…surrounded by people who really loved and cared for her. When a family is in a situation like this with a loved one, you feel vulnerable…lost almost. You just lost a family member you love very much and are close to, and then that family member gets to a facility that is supposed to care about healing them and rehabilitating them…but you find out that therapy isn’t available for the most part because your family member doesn’t meet the minimum requirements for personhood. The family member doesn’t count because she can’t communicate verbally and typically…so she gets no help. Our family grouped together and came up with our own plan to help heal mom through reading, researching, asking, investigating…and we accepted that she would receive no help and took the task of helping her heal into our own hands but then, at every turn there is aggravation and frustration over things like keeping bed rails up and not down, getting the right size diaper, making sure the diaper is closed properly and put on properly, getting her off all the medications she was on…and every issue takes so much perseverance and energy along with weeks of advocating in order to effect a change. I suppose I am saying that there is so much that is out of our control---so much that we can’t do anything about---so when you change a room and all the staff that you worked so hard to get on the same page with you and the same team with you, it strips you of the little bit of control and semblance of normalcy that you tried so hard to create. You are left in the hands of the beaurocracy that dictates which room a person is eligible to be in based on the funds the facility receives for that patient… The family is left to feel so out of control, so vulnerable, so helpless. And you have to start all over again…for the 3rd time for us. Then to watch all the hard work you did go down the drain before your eyes…to see mom so depressed and with such a flat affect…it is discouraging and infuriating and depressing to say the least. And to boot, mom turned her face from me when I arrived today and said hello. She wouldn’t look at me when I talked to her either. Mom’s breathing was effected by all this too…her vent went from an 8 back to a 10 last night. It just seems like she just isn’t trying this past week. Whatever. I suppose that it is what it is. Life goes on and so do we.
Back to the mom update. Thanks for allowing me to vent. Ok, so Anthony said that after mom’s shower, she was in the chair and smiling and happy to see him. A first all week. She had her old CNA. He said that they talked and laughed a lot too. And that she linked and unlinked the oversized paperclips for about an hour and a half. She didn’t want to stop. After a while, Anthony showed her the clay Claudia bought in Canada and they both squeezed it and Anthony made things with it that made mom laugh. They talked about the kids and mom smiled at what Anthony was saying. Anthony and dad said that her CNA came in to say good-bye at the end of the day and that mom smiled at her and threw her a kiss!!
Flo and Maureen, mom’s close friends, came to see her in the afternoon today as well. Dad said that she smiled a lot while they were there. She held their hands and looked at them and said yes and no to their questions. It seems like it was a nice visit.
Dad and I visited with mom in the middle of the afternoon. Mom ignored me when I first arrived. She was looking through some magazines and watching the FOOD Channel with dad. Dad had mom putting pegs in and out of the pegboard for a while before her new night CNA came to put her back into bed. When dad and I returned to mom, she was napping so we let her rest for 30 minutes and I did her physical therapy when she woke up. I gave her the scissors and some construction paper next and she cut on the straight lines lickety split!! She even took 2 pieces of paper and cut them at once!! Perfectly too. She took the small squares she cut and layered them and cut them into triangles next. She cut a circle next and did really well. Then I gave her verbal directions to cut the circle into a heart (I drew some lines on it) and she did it! I had her give it to dad! Before we left for dinner, I had mom try the small doubled cloth with lines sewn in it and beans in between the lines. You squeeze and push the beans along the sewn trail. She did it for a few seconds. We put on her classical music and left her with some magazines and the 2 soft, felt balls I bought for her in Canada. We each kissed her and told her we loved her and she told us she loved us too. When dad and I returned, mom was asleep, snuggled in bed. We sat with her a while. She held my hand and slept. Then we tucked her in, prayed over her and set the timer on the TV. We no sooner left the room when we realized we forgot to bring her hearing aids to the nurse to be locked up for the night, so we went back into the room to get them...tip toeing the whole way...and as I glanced at mom laying in bed, one eye was open and looking around!!! She is a character!!! We kissed her again and left.
"For the Lord your God is the one who goes before you...to give you victory." Deuteronomy 20:3-4
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