Update

But can you tell me - I'm sorry to ask this - why does he look like he has had a stroke?

A friend asked this question and it certainly is a valid one. I am not really sure of the answer but I can dance around it.


When Gregory ended up in the hospital, close to the beginning of his time at Lieberman, the experience took a large toll on his mobility and general functioning. He fell and gashed open his head. With a knee jerk from that pain, after falling, he to hit his forehead on the bottom of the bed leaving a huge bruise.While the X-Rays showed no broken bones, I think that Gregory did some damage to his back and neck which have always been sensitive areas for him since we met some 39 years ago.

Next he had a major Grand Mal Siezure that put him into the hospital for four days. Research says, I did not know this, that approximately 28% of people with Alzheimer's begin to get seizures at the end stages of the disease.

Gregory began Dilantin to avoid future seizures and the medication took two or more weeks to balance itself, the strength of it causing him to be weak, drowsy, and basically "out of it."

On the last day of the second hospital stay he came down with the flu. It was a mild case because he had had the vaccine in October but non-the-less the effect of the medication for his H1N1 flu was like being hit by a truck.

Over the next weeks at Lieberman Gregory got stronger and stronger and felt better and better but one must be reminded that he is in the last stages of Alzheimer's. The progress of the disease over the last year, and then between Christmas and his moving to Lieberman have been exponential.

At this point, due to the above and the progression of the disease, he is not unable to walk so lives in his wheel chair. He doesn't seem to mind. He is progressing a little with Physical Therapy and over the last four days has been peddling a bicycle from his wheel chair for fifteen minutes at a time and has been walking with the help of two therapists.

Progress may be progress, but with Gregory at this stage, progress needs to be redefined. It is not the kind of progress that you or I might experience after a fall or an illness.

Part of the problem now that he is regaining strength, is that his cognition continues to decline so while he may be strong enough to walk, he no longer knows how to do so cognitively. I.E. the brain sends out the "walking signals" but he legs do not know how to "read them."

The same has happened with his fingers, hands, and arms. The strength is there at times but the signals get scrambled. Due to this disconnect between the cognition and the muscles, he has developed what are called "Intentional Tremors."

When the brain sends a signal to his hand to pick up the fork, the signal is just interpreted in a jerk of the muscles in his arm and hand. The ability to stab or cut or scoop a piece of meat with the fork, let alone get it to his mouth no longer works well.

So this is the long and short of it. He does look at times like he is "out of it" in his awareness and responsiveness. Where he is, who knows. But he does come back.

Also his coordination of muscles due to lack of use, and cognitive disconnect causes him to look like he had a stroke and most of the time his neck needs to rest on a pillow because he cannot hold it up.

So there is your relative answer. Hope this helps you see Gregory in a real light which is also a loving light that continues to bless both Gregory and me.

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!