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:-)

Care Conference

Gregory’s current situation actually consists of two parts: 1) Responsive Behaviors and 2) Permanent RCA (Resident Care Associate)

Everyone seems to be reporting that Gregory has been experiencing an increased agitation in his responsive behavior as well as his every day “at rest” behaviors. This includes RCAs, Nurses, Manny, Hospice, Dr. Barris - Neuroligist, and me. Perhaps it is time to increase as minimally as possible his Risperdal.

According to Dr. Barris, who made it clearer to me, Gregory without language is not able to process or monitor his daily emotions. In many situations he does not know if he is safe or if he is in danger. The purpose of the Risperdal is to help keep him even so he doesn't feel he has to process or monitor, so that he just knows that all is good.

While the initial administration of the drug caused Gregory to be very sleepy, lethargic, and unengaged; he did slowly regain those energies and for quite a few months did very well; both even of mood and alert in demeanor. It looks like Gregory is needing more support either because his condition is advancing or perhaps the drug is loosing its effectiveness.

Lieberman, as it always does, sought my permission for the increase will carefully monitor any changes for better or worse and act accordingly. I believe that the increase is to help Gregory be more comfortable inside himself, not to make anyone's job easier!

A permanent RCA is one who gets to really know Gregory and his needs. They know when Gregory usually needs to be changed. Gregory gets used to that person being by his side more often then the others who support in changing him.

Recently his daytime RCA left to begin nursing school. I am very happy for her but sad for me and for Gregory. Yet again time for adjustments. This issue, however, troubles me a little more. There has been some issues with getting another RCA to take Gregory.

His leaving RCA and his evening RCA report that they do not see Gregory acting much differently than usual and that they feel they are used to working with him. He has the tendency to stiffen when rolled and calls out loudly when uncomfortable, unhappy, and/or frightened.

He does not like his “privates” to be cleaned especially when he has had a bowel movement. But usually Gregory does not physically “fight,” he just resists and gives loud verbal complaint! Because his regular RCAs know him so well, they are able to handle working with Gregory. They are able to anticipate when Gregory needs to be changed and also Manny keeps an eye on this.

Assigning a new daytime RCA is currently under consideration and prospective candidates are worried about how hard it is to change Gregory. They are assisted by one other person so that should not be an issue. Manny will be in the picture assisting so there will always be three people to help change Gregory. Difficult, back pain, and health issues should not be a problem. 

Also, I cannot believe that Gregory is the only “difficult” resident. What causes me concern in that with the attitude that “Gregory is a difficult resident,” the love and human care that needs to go into working with Gregory seems will be missing? 

Which RCA will go out of their way to make sure his needs are being met? Who will make sure the necessary supplies are stocked in his room? Who will really get to know Gregory and support him? Who will be there for him especially on the days Manny and I cannot be there?

In addition, a continuing ”pet peeve” of mine is that I am providing Manny who, not only is a great help to Gregory as well as so many other residents, he takes on many of the responsibilities usually assigned by the RCAs including feeding, shaving, brushing teeth, transporting, hydrating, applying and lotion. He attends him in supervision, etc. Hospice now is giving Gregory his baths which gives back more to the RCAs. I am with Gregory almost very day which makes the RCAs job easier again. Periodically, including this time, I bring up "What 'pay back' is Gregory getting?"

I expressed these concerns at the quarterly Care Conference and believe my concerns were heard. Already the Nurse Director has been working on the situation and she will continue to do so and get back to me as soon as a decision is made as to who Gregory's new RCA will be during the day.