The Last of Fall

These photos were taken during the last days of Fall at Anixter Park behind and attached to The Lieberman Center. How happy we all look.

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.

Settling In - Not Always A Good Thing

I hope the title of this post confused you. Settling in should sound like a good thing. But they say it takes a while for a new resident to settle into new surroundings on a dementia ward.

It takes time for the workers and nurses to get to know the residents routines and needs, rhythms and patterns. As you know, we have had two Care Conferences dealing with these things. Everyone on the floor is friendly, helpful, and wanting to do the best for Gregory.

So why is it not always a good thing. Would you believe two falls and one fright so far? The day after he was at Lieberman, the nurse called me around 8:00 pm to say Gregory had been sitting on the sofa in front of the TV and when he got up he fell on his knees. No great damage. No broken skin. A little pink. Nothing more. But wanted me to know. I thanked her and it felt good that they were keeping me informed.

Last week, I noticed that Gregory's ankles were swollen and I told the nurse. Later that week I notice that his ankles were very very swollen and mentioned it to the nurse again. At midnight she called at home and told me that she checked and sure enough they were so swollen that she called the doctor. He told her that Gregory could go to the emergency room for a workup or she could order a blood clot scan the next morning.

She and I talked about the implications and I decided that we could wait until morning for the test that would take place at Lieberman instead of putting Gregory though the trauma of a middle of the night emergency room visit. One possibility in waiting was that if he had indeed thrown a blood clot, it could travel to his brain or heart.

I told the nurse that while I hoped that wouldn't happen, we were not afraid of death. It was a hard decision for me to make and I had a hard time falling asleep. Finally, I said out loud, "Universe, if you are ready to take Gregory, please go ahead, I am ready, he is ready, and you have our permission." That said, I fell asleep easily.

Next day the clot scan showed no clots, they put him in special stockings to help with the swelling, and the ankles have looked better each day.

Finally, at seven AM this morning, I got a call from Lieberman that Gregory, after being up and dressed, fell backwards in his room (there by himself) and was found on the floor with a gash in his head, a bruse on his forehead, and in a lot of pain. They had called 911 and the ambulance had just arrived to take him to the hospital (which by the way is just across the parking lot.)

I had my clothes on and was out of the door (without any breakfast and not even one cup of coffee) in five minutes and got to the emergency room less than 10 minutes later. I am grateful that Lieberman Center and the hospital are so close to the condo.

Gregory looked terrible and was moaning with pain but had been able to remain calm throughout the ordeal. He was happy to see me and I soothed, stroked his hand, etc. They did a CAT scan and several X-Rays and found no additional damage. After the blood was cleaned up he didn't look quite so bad (head wounds bleed profusely.) Eight stitches later and a breakfast of oatmeal and pancakes the ambulance picked him up for the trip across the parking lot back to Lieberman.

Gregory after napping on and off in his own bed in his own room back at Lieberman and after a hearty lunch is with Alaksh (who I called for support right away, not knowing how severe the injury had been.) I am at home getting ready for a 90 minute massage and then will go back to sit with Gregory.

While this all might seem difficult, it has been surprisingly easy to get through and to make decisions about. In my role of Secondary Care Giver, which you have already heard about and will probably hear about again, it is good to have so many resources and people supporting me and caring for Gregory.

Besides the people that got him ready for the first ambulance trip, so many people have checked in since our return to his room: head nurse, day nurse, the social worker, his day caregiver, the lunch lady, and various higher level supervisors. Gregory is indeed being well taken care of.

Sorry for the pix but in an effort to fully document ... PS later I will post a photo of  how GOOD Gregory looks after the episode.

A Letter to Gregory's Last Companion

Ken,

Hope all is going well with your studies, and your assistantship. We are doing as well as can be expected. If you've been reading the BLOG (not expecting such) you will know what's going on. G continues to decline but I am continuing to rise above it in his support. We miss you but honestly do not think of you too often if only because we need to let you move on. You were the first companion and not only that you proved to be a special, loving person, so you will always hold special place in our hearts.

Alaksh has settled in and is doing well with Gregory. He is slowly learning how to interact with Gregory and not to read too much into their interactions as the Alzheimer's (as you know) is so completely unpredictable. One of the many good things about Alaksh that is different than you is that he cooks! And he is good at it. We loved your Ramen adventures but I have included Alaksh's cooking as part of our weekly time. Gregory and he go to Whole Foods, and together (as much as possible) decide what we will have for dinner (I just say "Surprise me!) and Gregory helps (as much as possible) with the cooking. And as you know, since Alaksh does the cooking, I have to clean up. But it is nice to be away and come home to dinner on the table. 

I am about to send my second volume of poetry to the publisher. When it is ready, I'll send you a copy. It is called, "Sit With Me A While Longer." It has at least as many if not a few more poems than the first volume and has lots more "chair" pictures. I am pleased with the results and as you can imagine many of the poems are informed by our journey with the big "A."

We are enjoying the beginning of fall, have mums on the balcony, and have been having the windows open more. Our kitties are now cats, continue to develop separate but interesting personalities and while they are the "demons from hell" at times, we love them and they give a lot back to us with their own kind of love.

Take care, I still have your pillow case and will mail it soon.

Fondly,

Michael (and Gregory)