PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Tuesday, March 11, 2014

Mixed Emotions

Today I was overjoyed.

Today I was over saddened.

OVERJOY: Found out today that in just three short weeks (usually takes 6 months) I was able to get Medicaid approved for Gregory. This means that he will be taken care of for the rest of his life without any fears or doubts over financial matters.

SAD: The difficult part of the day was spent at the Care Conference discussing Gregory's care at Lieberman. To put it succinctly:

1) Physical Therapy & Occupational Therapy will end on March 20. The wonderful practitioners at Lieberman have done as much as they can for Gregory. He is strong and able but his cognition no longer is connected to his abilities and therefore he has not been able to progress with their help.

2) He will probably be in his wheel chair and never walk again. Again, he has the strength but his mental associations and his physical abilities no longer work with each other  and he cannot control the muscles as needed to let him be mobil. Because he is at times stubborn, and strong, and tall ... he is at risk for hurting himself and those trying to help him ... if he looses his balance, or decides to grab on to something while being assisted with walking and cannot be pried loose, or if he just decides to sit down or fight his helper.

3) He continues to have difficulties feeding himself. He cannot control the gross and fine motor skills necessary to use a fork or even to pick up food with his fingers and get it into his mouth.

4) He has what are called "Intentional Tremors." His brain sends a signal to his hand to pick up something and the signal gets lost or jumbled somewhere before the end point. So instead of picking up his glass of juice his hand just tremors or twitches or jumps. He can eat when his hand is guided.

5) He gets stubborn and I call him "My Petulant Seven Year Old." When he grabs onto something he is so strong and you cannot pry the item loose from his hand. He closes his eyes or mouth and won't cooperate. He gets very strongly intent on telling you something almost to the point of being angry: "No, no, now wait. It's just that. Wait this is important. You need to know this." But he is unable to finish the thoughts and the best bet is to agree, "I understand. I know. You are right." And he calms down believing you do.

6) Because his is not mobil, he will not be able to use the bathroom and will have to depend on using what I call his "Paper Pants" and on being changed. He will be lifted for changing with the Hoyer Lift which is a safe way of moving him from the wheel chair to his bed but it continues to frighten him so he fights it and needs to have at least four people helping. I am promised that every two hours he will be "Checked and Changed" and that there will be a computer touch screen program (instead of clipboards) that the assistants will use to chart the "C&C."

7. Because he must depend on messing his pants and being changed, blue jeans are no longer an option because they are just to hard for the RCA's to use (Resident Care Assistant.) So I purchased some nice looking black sweats. At least he can continue to wear his flannel shirts so the "look" will be almost the same.

8) Because of the lack of mobility, I probably will not be able to take him out to dinner, or to the Botanic Garden or Zoo, etc. We can go for a walk in his chair around the building (there is a library and an outside safe garden.) Sad that his world will be so limited but he doesn't seem to notice or care (at least on the surface.)

9) He seems to be more non-communicative, more distant at times. But he is calm and contented.

10) He is happy when people come to visit and usually expresses himself by saying something like, "Oh how wonderful." Then he cries. The tears seem to me to be a combination of joy mingled with grief. When asked if he is OK, through the tears he will tell you, "Wonderful." He then calms down and enjoys spending time with his visitor. Does he know you? Yes. Can he tell your name? Probably not. Can he tell you how he knows you? Probably not. But you can see the love and joy come over him as he hugs you and the tears tell you he is happy you are visiting and that you are loved!

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