I can’t believe it is 2012. Mom had a busy weekend. It started yesterday when her aide took the day off for New Years Eve. We were given two substitute aides who did not know mom or how to work with her. Dad called me to come over but I wasn’t home and I wasn’t close enough to come. I finished up what I was doing and went to see mom. She was still in her pajamas at 10:30. (Dad left when I arrived to go run erransds. It is important that he get out and go places so he isn’t cooped up in the house.) The aide didn’t seem to see any problem with this. I understood that it was going to be a difficult day so I washed and changed mom. I sat in the living room with her and we started to do a crossword puzzle. She was very fidgety and said she couldn’t sit still. I took out her walker and placed it in front of her and had her stand while I counted. She stood for a count of 15. Then she used her arms and her feet to skooch back in the chair. We kept doing the puzzle until she was fidgety again. I took out the bicycle pedal machine and put it on the lap tray. I placed her hands on the pedals and had her pedal with her hands for about 5 minutes. She did well. We finished the puzzle and mom knew a large majority of the answers.
I made mom lunch and she ate well. After lunch we did a worksheet. Dad came back and I left. Mom has continually been inconsistently inconsistent. There are days when she is fine emotionally and times when she cries for a whole day. Yesterday she cried a lot. There are times within a day that she is able to pull herself up and stand at the bar independently nice and straight and then there are times when she is barely able to pull herself up and she is all hunched over. One of the many aides that mom has told the agency that she needs a Sarita lift in the home because she isn’t consistent enough and the aides will get hurt. The PT told us this last week and it was like someone punched us n the stomach. I feel like it is a step back. If she uses the Sarita, she will have to use a commode and I just think of the dignity in that (or the lack of dignity). We are at a stand still right now. I think we are waiting for her doctor to write prescriptions for a Sarita. Well, actually we have to call the doctor first.
Dad bought some treats for him and her to have for New Years. They had their own little party.
I went to dad’s Sunday morning so dad could go to church. Kathy went ot New Jersey to pick up Aunt Sophie. Her aide was back and we gave her a shower. Many of the aides won’t shower her and it is very frustrating. Someone has to be there and force the issue (although, on the weekend the aide always showers her). We set mom up with breakfast and then I left after breakfast. I was called back to help her with the bathroom. She stood great and followed every command. She has issues with sensory input. She can’t tolerate the initial touch – when someone first touches her. If I tell her what I am going to touch and rub the area first she does better.
Speaking of that…She went to the ENT on Friday and Kathy and Dad and I accompanied her. If I rubbed her ears before the doctor put a scope in she did much better. If we gave her explicit directions and there were no surprises, she did better. He sent mom for a CAT scan of her stoma to make sure it is OK for surgery. He suggested we have it closed up surgically. He said she would swallow better, breathe better, cough more productively and be able to blow her nose better. It is also better if it is closed so she wouldn’t be susceptible to infection. He has done these many times and was comfortable suggesting we get it done. Kathy and I had to get her on a CAT scan table and we did it!!! It was not easy.
Today we all went to Café Gio, which is our tradition. We always go there on New Years Day. We had a great time. After, we went back to the house and the kids played football in the yard with Anthony and DAD!!! Dad ran around the yard and even fell at one point. We were flipping out but he got up and went in the house. He laughed, we all laughed! It was a great way to start off the year.
We have a lot to consider in the new year. Do we keep trying to get her to stand and walk? Do we get a Sarita? Do we concede to the aides during the week and what they will do and not do? Do we try to get there in the morning to guide them until they “get it?”
Please pray for our family as we continue our journey in the new year.
Peace and Love in the New Year,
~Claud
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