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.

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

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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.

Some Mornings

Some mornings he wakes up and nothing seems to work.

This morning he ran into problems with shaving. Shaver in hand, he called me into the bathroom trying to tell me something, but never was able to get to it. He pointed at the shaver, and then the mirror and said, "There is a little something."

That is as far as we got after his attempting to communicate several times. I waited patiently, guessed at a few things, and finally told him just to shave, which he did.

A little while later he called me again with the "light bulb" having gone on again, he struggled to tell me what he had realized, and failed again ... another dark communication. We have been up for 30 minutes.

He did OK beginning his shower, I was in the bedroom when I heard him shouting "Help! Help!" I came running to find that he was finished showering and had begun to turn the water off but only did so half way and was standing in the cold stream of water still coming out of the shower head.

I turned the water hot again so he could warm up and then we turned it off together. Actually he did so by himself without any help, just my standing there which made it a little more frustrating and confusing.

Next he struggled to put on his sweatshirt, arm through the head hole and out the sleeve. He kept mumbling, "No that's not right" and continued trying to figure out how to put it on. He sat down on the bed for a while seemingly trying to regroup. I held back and he finally did figure out how to put the shirt on.

We have been up for an hour.

While he was reading the newspaper, I set out the cutting board with his bread and honey and announced, "Your bead and honey are ready." He thanked me and came over to begin preparing his first of the morning food. I returned to the bedroom.

Some five or ten minutes later I went out to see how he was doing. He was standing by the toaster, looking back at the cutting board, and back and forth again and again.

He was unable to connect the toast needing to go into the toaster and the button needing to be pressed. We worked through the process together.

When the toaster was finished and his toast popped up, he asked, "Does that turn it off?"

I am grateful that he sought my help, that he was able to begin shaving and then to finish, that he was able to take a dump without my help, that he was able to shower for the most part, that he was finally able to figure out how to get dressed, that he kissed my head as he left the bedroom and said, "I love you," that he was able to read the newspaper, that he was able to eat his toast after putting on the honey, and that he was able to go back to his newspaper.

I am grateful that I was able to keep my patience, not jump in to help too quickly, that I didn't get emotionally involved, that I was able to move from one difficulty to the next without anger, and that he kissed me on the head and said, "I love you."

I am frightened that we are getting closer to my having to more closely supervise his shaving and showering, physically helping him get dressed, and not only making his breakfast but also toasting his first up before breakfast snack because when confused verbal instructions do not work.

We have been up for two hours.