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.

Behind the Door

This is the door to Gregory's room at Lieberman Center. All of the rooms at the center are private which is fortunate for the residents.

When it is time for Gregory to be changed from a poo or pee, two RCAs (Resident Care Associates) bring the Hoyer Lift into his room (he needs to be transferred to the bed by a lift machine) and close the door.

Manny is the third person in the room to provide continuity, a friendly face (not that the RCAs have unfriendly faces,) and to provide a calming influence while the RCAs proceed with the work of changing Gregory.

When I am there, I do not stay in the room but step out and sit in the hall. Sometimes it is all I can do to stay seated and not burst into the room!

Gregory is not completely cooperative with his changing. He is uncomfortable, frightened at times, and possibly in some pain with the lifting and rolling and cleaning of skin. He shouts out loudly, stiffens his body, and at times swears.

His "responsive behaviors" can be frightening to someone listening, often cause the RCAs extra work and care, but must be recognized for what they are: Gregory responding to the experience without the use of language available to him.

How would you like to be hoisted in the air, swung over to the bed, dropped in place, get your wet/dirty clothes pulled off, get rolled this way and that, have many people in the room as you lie there naked, have your privates cleaned, get a new set of "paper pants," have new clean clothes pulled on, get hoisted up again, and dropped back into your wheel chair. YOU WOULD YELL TOO!

According to Manny much of the "noise" Gregory makes is due to what is going on in his head, not necessarily because of pain or discomfort. "OUCH! DAM IT! GET AWAY! NO,NO,NO! OH GOD! I WON'T" are some of the expletives. Now and then Gregory growls and often he laughs as part of the routine.

When it is over and done, and the door is open, I get up and go into the room, thanking the RCAs and renewing with Gregory the knowledge of my presence. "Hi love. I am back. You did a good job."

After a few minutes Gregory is calm and back to "normal." It is as if the ordeal never happened. And that is part of the blessing of dementia, Gregory no longer holds on to the event and gets on with whatever is next, like a drink of water, a piece of chocolate, or turning on the TV.

Care Conference

Gregory has been at Lieberman a little over three months and I have attended six Care Conferences to discuss his progress and needs. That is a meeting twice a month! Every time I take a long list of questions, concerns, and quandaries. 

Every time I come away from the meetings feeling listened to and content with the results. The meetings are always attended by the Head Nurse, the Social Worker, and depending on what we need to discuss, others. 

This time we were joined by the Nutritionist and the Restorative Nurse Supervisor.

• • •

BOLDFACE WAS ON CHECK LIST WHICH I BROUGHT TO MEETING.
Italics is what was discussed at meeting.

• • •

CHECK and CHANGE: How going? Records/regularity? (Being kept by RCAs) Hover over chair or in bed? (Depends on need)  When changed how cleaned? (Warm cloth and special soap) Is special soap used so rinsing doesn't affect his skin? (Yes) Is “tushie cream” used every time? (Yes)

The Restorative Nurse reported that Check and Change is going well.

Use of Urinal Training has not been successful as physically it is difficult to accomplish in time before he "messes" and Gregory is not able to help.

I reported that I am NOT confident that the Check and Change every two hours is going as well as I would like. When Gregory is discovered to be wet there usually is not enough time and/or staff available to get him changed so he ends up "sitting in it" for 3 or 4 hours until they can get to him. Often he sits in his urine and/or feces during meals. Also, from my observations, human nature causes the “check” part to not take place as often as necessary. 

I know that Resident Care Assistants (RCAs) are doing their best, that there are times when changing him is not possible because it takes four people to do so; the nature of scheduling, moving patients, floor needs, etc are getting in the way of Gregory’s care.

I proposed that staff should check for "messes" every hour NOT every two hours. That would not take more time or cause Gregory to "mess" more often but rather might bring his being changed closer to a manageable time through out the day. 

It was agreed that this will be done.

I proposed a way to resume Urinal Training. I purchased specialty pants which zip down both sides to the knee? Sometimes G does give signals that he needs to go and if one can get into his "area" quickly perhaps we can "save the day." 

I also purchased a woman's urinal box which seems to be angled more appropriately thus allowing Gregory to urinate while sitting. Also, we can try  a "penis friendly" urinal which I created using a collapsible, flexible silicone funnel attached to a water bottle. 

Staff will be trained to use the new idea as will Manny, Gregory's private care help.

A change in Gregory’s permanent RCA's for Days and Afternoons was made. Previously I had insisted that the RCA be in Gregory's wing and therefore closer to his needs. "Floating" RCA's have fewer people to take care of. Now that Gregory is not in as much need as he was the first month at Lieberman, proximity of RCA is not as important.

I think the new people will be better suited to meet Gregory's needs.

What kind of Active Assisted Movement will be given now that Gregory is no longer in OT/PT? By whom? When? 

Stand now and then? Sit now and then? Walk now and then?

Active Assisted Movement takes place every morning. Each resident works with a RCA for 15 minutes doing exercises like tossing a ball or leg and arm movement. Also, Manny will be trained so he can provide more activity and exercise throughout the day besides the regularly scheduled times in the morning.

We went back and forth on "standing, sitting, walking" regarding safety for Gregory as well as the staff. I fought for not "giving up" on him yet even though PT/OT thinks he must always be in the wheel chair and moved with the Hoyer lift. We compromised in that there will be a new screening and review by PT/OT. Also a new kind of wheel chair without foot pedals will be tried which might allow Gregory to "walk" himself around the unit.

CONCERN: There are many things that the Private Care Aid I have hired provides for Gregory between 11:30 and 5:30 and which relieves the RCAs of some responsibilities and allows them more time to be with their other duties. Some examples: Need to be shaved, to be transported from place to place, to be fed, to "entertain," calm, or otherwise occupy Gregory's time, Need to be supervised.

I need to feel that some of that time is being given back to helping Gregory. Right now his most important need is with bath rooming and being kept clean since he mostly has to "mess his pants." My concerns were heard and recognized as valid. With the above changes I feel this will be accomplished.

Current doctor reports? podiatrist? eye doctor? 

Any changes are reported, if no change assume everything is OK.

Adhesive on neck has really helped keep Gregory's neck strong.

No need for that now but muscle power in neck will be under observation.

Has he been showered in shower chair? Belly Button is full!
Teeth brushed. When? How often? By whom? Doesn't seem to be happening.

While shower chair discussed previously, not yet acted on. Will begin now. Teeth should be brushed twice a day. With new RCAs should happen now. I made myself available to "help calm" by being available for first few shower times.

More sir! Lunch and dinner, please. Sometimes a "regular" portion is enough for residents but not enough for Gregory. At times Manny or I ask for seconds if there are any left. Also, can he have more fresh fruit and vegetables. When does he get evening snack?

Evening snack consists of apple sauce or ice cream. 

Even before my mention, it was noticed that Gregory has lost some weight and has been put on mealtime "double portion." If Gregory is ever still hungry, Manny should ask for seconds. If none at station on floor, worker will go down to the main kitchen. There is ALWAYS more food available!

We talked about adult life time usual 155lb weight, his recent developing a "little belly" 180lb weight, and his current 167lb weight. Will keep an eye on what his NEW optimum weight might be. 

Will add more fresh fruit and veggies. 

In touch with Psychiatrist who has been following Gregory? Psychiatrist who chatted with Hannah about what to expect in general with Young Onset Alzheimer's patients.

Done.

• • •

It continues to amaze me how wonderful the care and concern for Gregory is. Often the staff is "ahead" of me when a concern develops. They are open and willing to try my suggestions but also know when they need to "educate" me on the realities of Gregory's situation. I cannot say enough about how wonderful each individual person is.