This and That and The Other

I was sitting with Gregory today having brought a bag of chocolate covered mini-donuts as a gift. He ate two of them in bites that I offered. Then he leaned forward and pointed to what I thought was the glass of water on the dresser. "This," he said insistently, "This."

Surprised I said, "Do you want some water?"

He replied, "Yes." So in my amazement I helped him to take a few drinks.

"Do you want more?" I asked.

"No," he calmly said.

Now did I read into the conversation or was he communicating? I know what I would like to think. What do you think?

• • •

Next chapter in the Broda wheelchair fiasco. As you may have read in past posts, Gregory has had over one dozen chairs and maybe one or two of them worked "well enough." Sometimes when it stopped working, Advocare, the chair rental company,  would replace the old chair with one that was worse. How do you figure that?

Lieberman pays for the chair rental as part of the monthly fees. Medicare and/or Medicaid do not pay for chair rental. Go figure. M&M would pay for a custom chair if made for Gregory but not a Broda custom chair. Go figure.

Broda is a really good chair for Gregory, when it works, as he basically lives in the chair. It supports his back and by the nature of its construction has helped his skin from breaking down. Also it can be tilted into a comfortable angle for resting and even further when he wants to take a nap.

So I talked with Broda and got a lot of information about how the whole thing of chair rental works and was given the name of the VP of Advocare who provides the rental chairs to Lieberman. 

Today I called Advocare, under the guise of wanting to find out more information and talked with the VP, dropping the name of the VP of Broda who gave me her name and phone number.

I told her my dilemma and how this has gone on since Gregory started at LIeberman some 18 months ago. I also supportively told her about what seemed like quality control issues and dropped the hint that many family members and RCAs have complained that the chairs just do not work well.

I understand that Advocare has a fleet of chairs that are reconditioned and reissued as residents change. Maybe they are having quality care issues or maybe the reuse life of the chairs is past.

Either way, the VP of Advocare assured me that Gregory would get a perfectly working chair today (which arrived a few hour later as I was leaving) and that they were going to send out a crew to check all of the chairs at Lieberman!

I didn't want to get into trouble by inadvertently overstepping my boundaries, so I let the Nurse Director (who usually orders new chairs) know what happened, and the Assistant Head Nurse for the Building (who previously got involved with the possibility of a custom chair,) and the Director of Facilities.

I explained what had taken place "just because I had inquired about Medicare and wanted to understand how the wheel chair situation worked and that I was thinking of just buying one of the $3,500 chairs brand new for Gregory.

The Director of Facilities laughed when I lovingly told her I was letting her know about what happened because she is in charge of everything that goes on in the building. She replied, "No you are in charge!" I laughed. She continued, "You get things done, and I like that!"

• • •

Sometimes when you are trying to take off a dirty or put on a clean undershirt and/or top shirt; Gregory is resistive. I helped Manny with the task today and it was difficult.

I asked Manny if when he is helping Gregory with his exercises, does Gregory resist, I was just curious if it was because of the changing or that Gregory's arms were somehow in pain? Manny replied that the resistance is usually because of the ordeal of being changed but that usually Gregory is pretty cooperative. 

He added that when they are exercising, "if Gregory resists or 'goes into himself,' I stop what I am doing and let it rest. I go back last when Gregory is present and try again."

How intelligent, aware, caring, and loving is that of Manny? Our Saint Manny or at least a Very Highly Placed Angel. (P.S. Hi Manny! He keeps up with my "ravings" by reading this blog:-)

Hurray It Works

After much "Strum and Drang" Gregory's wheel chair works! I am so pleased. It is a trial Broda 785. After a week or two of trial run, if we feel it makes a difference to Gregory, a representative from the company will come out to measure him for a custom chair.

This chair is easier to move, tilt, and seems more comfortable for Gregory as well. It tilts to an almost flat angle and the information says that it is good for changing a person without having to move them to bed. That would be nice.

Difficult Seder Visit

Yesterday was the first day of passover. Manny had the day off so he could celebrate Good Friday. I had lunch with Gregory and left when he was taken to physical therapy.

I returned to Lieberman at 4:00 to take Gregory down to the Community Seder. After a telephone call, I was excited that Gregory had finally gotten the special wheel chair "Broda" that I had been pushing for and was looking forward to seeing it.

Instead the old, "normal" model had been taken and a new "normal" model had been substituted instead of the "special" model that had been discussed AND the new "normal" one didn't work.

It was impossible to wheel down he hall in any sense of a hoped for direction. I literally kept bouncing off the walls, had to straighten out the chair and push again until it hit the wall again.

Besides my rotator cuffs acting up, and my back a little out making it even more difficult to fight with his new normal chair, I was very disappointed that the correct chair had not been delivered.

I called the person I had been dealing with and INAPPROPRIATELY read her the riot act. This was at least the third chair that had not worked at all, the one that did work was taken back, and the correct one was not delivered!

I usually do not loose my patience, am gentle and calm in my dealings with Lieberman Staff, and am happy and even tempered in their presence. Not this time, but I learned an important lesson the hard way.

My being upset and bawling out my connection on the phone got Gregory upset. By now we had reached the elevator. My call was complete. But Gregory was very upset and loud and acting out, unfortunately against me! I know he was just reacting but since I caused his upset, I guess he was mad at me.

So there I am in the hall, by the elevators, trying to help Gregory calm down to no avail, with the Social Worker trying to help also, with the head nurse a short distance away observing and probably trying to decide what the outcome will be.

Finally I was able to get Gregory calm, not without a few tears of my own, and I decided that "we" were too upset to try to go down to the community Seder so we stayed up and had dinner at the fifth floor dining room.

It was not as fancy, there was no service or concord wine. I was disappointed that we couldn't go to the seder service but also pleased that I could make a turn around decision, regardless of my disappointment, on Gregory's behalf so quickly.

To add to the drama, the dining room was quite unsettled and uncentered this night.

There have been a lot of new residents joining us on the fifth floor and most of them are going through the transition of being there and not wanting to be there. Two men are plotting together on how to escape.

One thinks he is trapped there having arrived as only a visitor, refuses to use his walker, and argues with everyone!

The other is an "A" type personality who thinks he literally owns the place and expects his "employees" to do his bidding. He is in a wheel chair and demands that everyone in his path help him out of the chair. He is mean, demanding, and absolutely unable to be engaged in a rational, deflecting conversation, like, "You need to have some dinner before you leave," or "The wheel chair is to keep you safe and from falling down."

One woman constantly screams for help and another yells that she is dying, having a heart attack, can't breath etc (all of which have been checked by the nurses but are untrue) and another woman is quite distraught but only speaks a language that none of us understand.

I know things will settle down. The new residents will acclimate, Gregory's new chair will finally arrive, the staff will feel a little less overwhelmed and understaffed. But meanwhile I myself was doing a little crazy thinking wanting to break Gregory out of the place while at the same time knowing that I wouldn't be able to take care of him if I did.

So we watched "Show Boat" for a while, had chocolate cupcakes with butter cream Easter decorations that Manny left as a gift for us, and finally I said my goodbyes and left Gregory to watch TV with the other residents (as unsettled as they may have been.) I was hard for me to leave but Gregory seemed to retreat into himself or was starting to nap and at least he was calm.

The roller coaster I am riding now is a lot less scary and turbulent than the one I used to ride but it is none the less a roller coaster with its ups and downs and one never knows what new adventure is around the bend!

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.

Update

Just realized that I haven't given you an update on Gregory in a while. So first that and then to the post which brought me here so late at night.

Gregory continues to do well after a hectic first month arriving at Lieberman. His strength continues to return, he is more and more alert, he is happy and periodically cries for joy.

Communicative - no. Able to walk on his own - no. Able to feed himself - somewhat as prompted and when able to eat finger food.

Since he is still in a wheel chair, and by the time he notices he has to go to the bathroom, it is too late so we have "accidents." But the staff cleans him up quickly. He gets upset at having to "pee or shit himself" but by the time it is done, it isn't a remembered issue.

He has had many visitors and several repeat visitors. He is always happy to see our friends and family, may not remember your name but certainly KNOWS YOU and feels his love for you.

When reminded (which I try to avoid) of his past he gets a little upset: piano. painting, swimming. etc. He still is very much (fortunately) in the moment, doesn't ask why he is at Lieberman and doesn't ask about going home. He doesn't ask about the past or inquire into the future.

I have hired a helper to be with Gregory from 11:30-5:30, five days a week. Our Northwestern companion spends time with him the other two days a week.

I encourage you to visit Gregory if you are so inclined. I will go on the first visit with you (just to fill you in on the details and to help you acclimate) and then you are welcome to go back whenever you want (or we can go together again if you prefer.)

I would ask you to avoid visiting between 11:30 and 12:30 and 4:30 and 5:30 which are meal times. It gets a little overwhelming to have too many people around at that time. If you arrive and he is an an activity you can join the activity or have the helper take you and Gregory to his room for a visit. The helper will give you and Gregory  your privacy.

There is candy and cookies in his "kitchen corner." There are beverages in the refrigerator. Help yourself. If you want to offer something to Gregory, first get the helper's help.

If Gregory tries to get out of his wheel chair, encourage him not to. If at any time you are uncomfortable with what is going on, ask for help from his private helper or any of the helpers around.

If you do have any questions or concerns, please feel free to give me a call and ask.