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.

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.

Mixed Emotions

Today I was overjoyed.

Today I was over saddened.

OVERJOY: Found out today that in just three short weeks (usually takes 6 months) I was able to get Medicaid approved for Gregory. This means that he will be taken care of for the rest of his life without any fears or doubts over financial matters.

SAD: The difficult part of the day was spent at the Care Conference discussing Gregory's care at Lieberman. To put it succinctly:

1) Physical Therapy & Occupational Therapy will end on March 20. The wonderful practitioners at Lieberman have done as much as they can for Gregory. He is strong and able but his cognition no longer is connected to his abilities and therefore he has not been able to progress with their help.

2) He will probably be in his wheel chair and never walk again. Again, he has the strength but his mental associations and his physical abilities no longer work with each other  and he cannot control the muscles as needed to let him be mobil. Because he is at times stubborn, and strong, and tall ... he is at risk for hurting himself and those trying to help him ... if he looses his balance, or decides to grab on to something while being assisted with walking and cannot be pried loose, or if he just decides to sit down or fight his helper.

3) He continues to have difficulties feeding himself. He cannot control the gross and fine motor skills necessary to use a fork or even to pick up food with his fingers and get it into his mouth.

4) He has what are called "Intentional Tremors." His brain sends a signal to his hand to pick up something and the signal gets lost or jumbled somewhere before the end point. So instead of picking up his glass of juice his hand just tremors or twitches or jumps. He can eat when his hand is guided.

5) He gets stubborn and I call him "My Petulant Seven Year Old." When he grabs onto something he is so strong and you cannot pry the item loose from his hand. He closes his eyes or mouth and won't cooperate. He gets very strongly intent on telling you something almost to the point of being angry: "No, no, now wait. It's just that. Wait this is important. You need to know this." But he is unable to finish the thoughts and the best bet is to agree, "I understand. I know. You are right." And he calms down believing you do.

6) Because his is not mobil, he will not be able to use the bathroom and will have to depend on using what I call his "Paper Pants" and on being changed. He will be lifted for changing with the Hoyer Lift which is a safe way of moving him from the wheel chair to his bed but it continues to frighten him so he fights it and needs to have at least four people helping. I am promised that every two hours he will be "Checked and Changed" and that there will be a computer touch screen program (instead of clipboards) that the assistants will use to chart the "C&C."

7. Because he must depend on messing his pants and being changed, blue jeans are no longer an option because they are just to hard for the RCA's to use (Resident Care Assistant.) So I purchased some nice looking black sweats. At least he can continue to wear his flannel shirts so the "look" will be almost the same.

8) Because of the lack of mobility, I probably will not be able to take him out to dinner, or to the Botanic Garden or Zoo, etc. We can go for a walk in his chair around the building (there is a library and an outside safe garden.) Sad that his world will be so limited but he doesn't seem to notice or care (at least on the surface.)

9) He seems to be more non-communicative, more distant at times. But he is calm and contented.

10) He is happy when people come to visit and usually expresses himself by saying something like, "Oh how wonderful." Then he cries. The tears seem to me to be a combination of joy mingled with grief. When asked if he is OK, through the tears he will tell you, "Wonderful." He then calms down and enjoys spending time with his visitor. Does he know you? Yes. Can he tell your name? Probably not. Can he tell you how he knows you? Probably not. But you can see the love and joy come over him as he hugs you and the tears tell you he is happy you are visiting and that you are loved!

Care Conference February 11

These notes were from the fourth "Care Conference" that took place last week. A number of posts have reflected what has been going on since that meeting.

I find that by keeping running notes on my computer I am able to remember (and address) all of the issues that come up between conferences. I make a copy for each person attending which facilitates the discussion.

Usually attending are the head nurse, social worker. Sometimes attending are dietitian, activities director, physical therapist. At times various building supervisors attend. Each person mentioned above are for the fifth floor and each person has an entire building supervisor.

Many of the items listed in this set of notes were changed drastically or no longer an issue because of Gregory's seizure. For now he is in a wheel chair until (or if) he regains his strength and becomes mobil again. Because he is not mobil he ends up messing his pants and has to be changed with the help of four people, who move him to his bed and clean him up.

He needs help feeding himself and I have hired a man to be with him from 11:30 - 5:30 (which covers both lunch and dinner.) The additional help was requested by Lieberman but I also think it is a good idea. That way someone will be with Gregory on a one to one for at least part of the day helping him, providing activities and distractions. 

I have been visiting for two or three hours a day but once and a while I take the day off. Part of what the following list shows is how helpful Lieberman is, how much I have to communicate in my new role as Secondary Care Giver, how people in Gregory's position need an advocate, and in many ways points out how the situation for me is different but none-the-less difficult.  

MEDICATION
When moved he is in pain?
TED socks/swelling?
More than one pair?
Fall mat?
Plug cover?

Chocolate Pudding
Crushed

Dilantin
Dilantin Levels Test?

Flu Med?
Pain Med?

Fluocinolone Oil?
Tushie Rash Cream?
Cordran Tape (I apply?)

Tumeric
Vitamin E
Ginko Biloba
Namenda 
Aricept (Day Time)?
Liquid Vitamins
Liquid Minerals

PRN Haldol
PRN Xanax (Alprazolam)

TOILETING
Medicine Chest Lock
New toilet bars?
Try every few hours
Before or after meals
Plastic Urinal Box?

Record Keeping

Attempts
Successes & accidents
Bowel movements

Paper pants changed?
Rash/irritated bottom?

RESIDENT CARE AIDE
Eegee only w/ Greg?
Permanent AM/PM?
Non-Floating?

GROOMING
When?
Shaving
Face Moisturizer?
Deodorant?
Body Lotion?

NOURISHMENT
Finger food vs extra help
Fresh vegetables
Fresh fruit
Snack in PM
Prune Juice w/ bkfst

OT / PT (Medicare?)
How often?
Aimed at balance & walking?

SKILLED NURSING (?)
Medicare 100 days?
Continuation determined?

NEW LONGER BED
When?

SLEEP HABITS
Wake
Naps
Bedtime

Fast Seizure Update

Just a fast update. Gregory is doing well and returned to Lieberman on Saturday after three days in the hospital. He ended up being in the hospital for the requisite 3 midnights of Medicare so he will be eligible for up to 100 days of skilled nursing care (read my not having to pay Lieberman) and occupational therapy and physical therapy as well. This should help him get back onto his feet more confidently. It is said that for every day in the hospital, three days are needed to regain your strength!

The care Gregory received at the hospital was stellar however an advocate is always needed, especially when the person cannot advocate for themselves. Turns out he hadn't pooped for two days so Alaksh and the nurse's aid sat him on the toilet and he was successful. Last thing one needs is to be constipated. The hospital was a little hesitant about G's being up in the bathroom but Alaksh convinced them. It isn't that Gregory couldn't walk or be on his feet. It is just that he is unsure on his feet and needs support. Also the verbal communication of expectations takes longer then most people are used to and sometimes doesn't work at all. This makes it look like Gregory cannot get up but also there are the times when Gregory just doesn't know how to "sit!"

Another thing that happened. Gregory's medical records are now on the hospital system's computers. For the most part that is good. But somehow it was assumed that an old, unused prescription for Xanex, an anti-panic medicine was to be administered three times a day. When I found that out I threw a hissy fit! First why? Second don't assume, ask me! Third his doctor has only known Gregory for the three weeks since he was admitted at Lieberman, I have known Gregory for 39 years!

When Gregory got back to Lieberman, the nurse called me early the next day to re-check his medications. I guess they do that every time a resident returns from a hospital visit. Good for them! They put him in a wheel chair to move him about but take him out and help him into a regular chair when they reach their destination. Good for them.

Today or tomorrow we will have another "Care Conference" to discuss Gregory's progress so far at Lieberman, especially with all the "interruptions."