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!

"The Cleaner Floor" A book by I. P. Standing

Men are known to stand while peeing. Women are known to sit while peeing. Leaving the toilet lid up ... or down ... has been debated since the beginning of the flush.

Women also squat, especially in public, filthy bathrooms or in the forest preserve (watch out for the Poison Ivy.) Men have it a little easier in that they can aim the hose and avoid such disgusting situations.

But sometimes, men sit. Yes, you read it here. Gregory and I sit when we pee (at least at home we do.) Why you may ask? And why BLOG about it you may wonder?

First, even though you might think it would be easier for a man to take a fast whizz standing, it is actually just as easy to drop trow and sit to pee. Especially in the cleanliness of one's own bathroom. By sitting you can gain a few moments of meditation time and solitude from a busy day. You can catch up on a magazine article if you choose. On an active day, you can get off your feet for a few moments. And the floor definitely stays cleaner.

The real reason I post this is because with Gregory's change in living situation, and during his stay in the hospital, he had urination difficulties. Couldn't pee? No. His caregivers assumed that he stood to pee so would take him to the bathroom and stand him in front of the toilet. With no results.

Eventually he had to be catherized and they found 500 cc of urine in his bladder. Usually when a person gets +/- 250 they begin to feel the need to pee. Gregory was either not able to communicate this, and/or didn't recognize the signals, and/or didn't recognize what he was to do by standing in front of the toilet.

When I found out about his being catheterized,  I realized  I had not mentioned his sitting to pee. I took that minor fact for granted since it is what we have always done for over 38 years! Once it was established, Gregory had no problem with peeing. Problem solved.

Well solved at the hospital but now at the memory care facility, at times Gregory feels stubborn and refuses to sit when asked to. Also, for a while the staff was not taking him to pee every couple of hours so he found a corner in his room and wet his pants. (I found him behind his room door looking very embarrassed and standing in a puddle. Made me cry.) You know I'll be keeping up with staff on this one!

I have found (as I continue to fill in the cross word puzzle that is Gregory's new living situation at a memory care facility) I have to analyze the details of his life so they can provide more accurately for his needs. Especially since he cannot himself instruct the slew of new caregivers (according to the shift, the day of the week, the days off, etc.)

My new role as secondary caregiver continues to develop. At the first Care Conference with the Head Nurse, Dietitian, and Social Worker we focused on medications, eating, toileting, daily routine, personal grooming, etc. At the next one tomorrow, the topics will include a review of how he is settling in; how staff is meeting his needs as discussed as the previous meeting; a closer look at what kind of activities he will be participating in; schedules for shower, haircut, massage, doctors, etc; switching from a large handful of vitamins and minerals (which he has had difficulty swallowing) to a spoonful of liquid supplements; visiting volunteer opportunities for him, and a few others.

He has continued to be calm (without the sedatives needed when he was at the hospital,) happy, and content. He is living in the moment. Not once has he wondered about why he is there or asked about "home at the condo." He doesn't seem to notice the array of patients on his floor: all of them older, most of them with more advanced dementias, many in wheel chairs, many catatonic, many sleeping most of the time, incontinence here and there. In fact when one calls out, Gregory wants to help. As he roams (strolls) the halls, he smiles at them kindly. He has quickly become one of the favorites of the nurses and staff and they comment on what a lovely, kind, gentle man his is.

And since he is content and doesn't notice that being there is like being in a Fellini movie without the background music, I don't mind it either and am able to see the place through Gregory's eyes. Safe, clean, warm, active, happy!

Milestones

Often times milestones mark achievements and celebration. I am sad to report that the milestone Gregory and I reached tonight is not cause for celebration.

We were watching a movie and I noticed that he was becoming agitated. Nothing about the movie would have caused that. I asked, "Are you OK." And he said he was not. "What's the matter?" He didn't know. I made my usual suggestion, "Do you have to go to the bathroom?"

"Maybe," he said and got up. "Where?"

"Go to the bathroom." He left the room while I took a few more seconds to stop the video. I followed him into the bedroom where he was standing holding his penis. "Pull your pants down and go sit down." He didn't know what to do so I moved him into the bathroom and as I started to help him pull down his pants, releasing his penis, he began to pee. On himself. On the floor. On me.

He was very sorry and very apologetic. I was very soothing and calm and loving. He finished peeing in the toilet and I began to clean up the floor, took his pants and slippers off, and wiped up his leg. He apologized again and I told him it was nothing to be sorry about, just that there were implications involved. "You didn't recognize the "feeling" as an urge to go to the bathroom?" I asked/stated.

"I guess so," he answered. For a while now when I sensed he was upset about something I sent him to the bathroom and he was surprised that he had to take a dump. This is the first time that urination was the culprit. Also he had waited so long that he had the "accident."

The implications are my needing to be more alert to his changing mood, might need to check every hour or so by asking and/or sending him to the bathroom, might need to begin using what I called "Protection Pants." You get the drift of my euphemism.

All I can say, is that reporting this here is helping me get through my numbness, should help you to keep up with our "progress," and is part of my continuing open and honest (if not brutal) documentation of our journey.

Honestly, I am so sad and numb and worried about the future that I don't know what to do.  Tomorrow we are/were excited about a Wagner opera: 1:40 Act 1, 30 minute intermission, 1:05 Act 2, 30 minute intermission, and 1:10 Act 3, then the drive home. There is a handicapped bathroom on the main floor (where we are sitting) so I will just have to be super alert.

Meanwhile, for tonight, maybe a short TV show in favor of abandoning the long movie and some popcorn?

Theater and The Full Disclosure

Yesterday I posted a fantasy about Gregory and me. I thought it would cheer me up to not tell the same old sad story. It did cheer me up for a while thinking about fond memories but the problem with fantasy is that it is NOT reality. And in Alzheimer's case even reality is often NOT real.

Last night we went to the opera "Orpheus and Euridice" by Ricky Ian Gordon which was presented at and in the Eckhart Park Pool. It was given as a free performance by the Chicago Opera Theater (to which we are subscribers) as well as the Chicago Park District and the City of Chicago's Classics in the Parks.

Obviously the swimming pool setting was unusual. And Gregory had a difficult time of it. He kept dozing off and when awake his face was somewhat blank. Possibly he was not registering the action of the opera. I would point his face toward what he should have been watching and I could not tell what his eyes were doing.

I enjoyed the opera but sat there for 70 minutes without an intermission wondering if we would get through it and what would happen if we had to leave since the exit was on the opposite side of where we were sitting. And the action was all around us (including one exciting moment when the dry ice "fog" started filling the entire pool floor area from under our seats. We made it ... but with a mental note to consider future performances and wondering how long we would be able to continue our active theater and opera life.

  

  


FULL DISCLOSURE SECTION

This morning after he took his morning dump (announcing as if it was a miracle) he stood to pull up his pants. No you did not hear me mention the part where one cleans one's ass with toilet paper and then a moist wipe. And one cannot assume that took place.

So I popped up from the computer to check the "pot" and sure enough ... lots of shit but no toilet paper. When I mentioned that he forgot to wipe he did not know what I meant. "You need to clean yourself." Still no comprehension. So I went into my, "Sit back down." Which he did after repeating myself two more times. "Use the paper (pointing.)" Which he did several times and miraculously monitoring how many more wipes he would need.

"OK, how did I do?" he asked.

"OK, I replied," thinking "Sad."

This scenario has repeated itself a number of times recently so I am beginning to think that I need to monitor every time he uses the bathroom. I guess I should be grateful that he recognizes (not always) the urge to visit the bathroom most of the time. Sometimes he will get agitated and his face will tell me something is wrong. I will inquire to no avail and usually then suggest he go to the bathroom and that seems to settle him down. Don't know if in effect he needed to use the bathroom or if the distraction allowed him to forget what was really upsetting him.

I don't even try to figure these things out anymore (except here to process for myself and for your benefit.) A SHITTY story don't you agree :-?

The Long and Short of It

If he can no longer read at bedtime, he will not read at bedtime.
If he can no longer take his vitamins, he will not take vitamins.
If he can no longer floss or brush, he will not floss or brush.
If he can no longer fold the towels, he will not fold towels.

But if he can no longer eat, does that mean we can just starve?
If he can no longer toilet, does that mean we can just stop shitting?
If he can no longer shower, does that mean we can just have B.O.?
If he can no longer use words, does that mean can just live in silence?

He looks and walks and sits and yawns and sleeps like a real person
But he doesn't understand or communicate anymore like a real person.
He doesn't function or think or understand anymore like a real person
He is broken yet refuses to run down and stop trying to be a person.

If we can no longer live, does that mean we can just die?



I know that the recent BLOGs have been down and depressed. Gregory seems to be going through a lot of loss again recently. I hope he will level out soon and hold, so I can figure how to respectfully, lovingly, supportively be there for him. Right now I do not know how to work with these new losses. Give me a few more days or maybe a week, OK?

A Letter To A Friend

S,

I appreciate your comments. I have never entertained the possibility that we get fewer invites. We always enjoy seeing you and being with you (and your and M's making it easier to see B.) As we discussed gearing down G's yearly birthday July 4th party, I certainly understand "little time and less money and energy." 

Our life has become more narrow. We do enjoy our opera, legitimate theater, musicals, NETFLIX, and the movies. I enjoy cooking and experimenting in the kitchen. Having people in now and then is still fun but getting harder. Being with people becomes a little more difficult partly because of Gregory, partly because of the extra energy I have to spend to monitor and provide for G, tell my stories and his, etc.

I am definitely feeling a little older and a little more tired but not to the point that I am "in trouble." Also, when he has had a difficult day and/or I am feeling down it is hard to be with people and keep up the positive front and the running commentary. Being home and alone and quiet works well. We depend on listening to music a lot to disguise the fact that we no longer can have two sided conversations but also because we enjoy the music. It has a calming effect on both of us.

Current changes, for which I am still trying to figure out how to compensate, is his not knowing how a book works, so no bed time reading; increased difficulty dealing with too many items on his dinner plate; perseveration in some minor annoying behaviors; continued loss of even more common word associations;  needing more of my attention as his "Bowel Coach." I'll not go into detail about the later.

Yesterday I fixed G his five o'clock coffee and cookies, placing both on the counter and showing him. He took the cookies to his desk, ate them. Later when I was preparing dinner I saw that he left the coffee behind on the counter, not even realizing there was no coffee with his coffee and cookies. 

Your offer to "be there" and in effect your "being there" is generous and gracious and in itself makes my life nicer/easier. Right now that is about all you can do and should consider it well received. 

I do like the idea of Gregory and I picking you up and driving downtown to a hot dog and movie show with B. The new companion should make it easier so I can get away and have some time to myself and allow me to run errands without having to bring Gregory along all the time. 

Soon. Love to M.

m

It Was Perseveration I Know (Sung to the tune of ...)

Gregory woke at 9:00 and did his morning bath rooming. After "wiping" he pulled up his sleep shorts, stood at the sink, took a "wet wipe" out of the box and didn't know what to do with it. I was still in bed and watched from across the bedroom. First I wanted to see what would happen. Second I knew I couldn't explain the situation to him and probably would have difficulty showing him. Third I didn't want to interfere and as long as he wasn't upset I waited.

For approximately 30 minutes he studied the wet wipe in his hand, studied the box, moved over to the toilet, moved back to the sink. Again and again and again. Finally he threw the unused wet wipe into the garbage can and began setting up his electric shaver, at which he was successful. It is the 30 minutes that amazed me.

A New Day

How do you continue each day when you walk into the bathroom to find your love sitting on the toilet, seeing if he has to go to the bathroom before you go shopping, with his shorts and underpants still up around his waist? How do you continue each day when he doesn't even realize what is wrong and isn't able to respond to your, "Honey, you might want to lower your pants."

According to our niece, you are not supposed to yell at him. She is definitely right. But how do I continue each day? I am kind, I am supportive, and sometimes I yell.

Next major hurdle. Gregory has lost the process involved in reading at bedtime. I've wondered about the comprehension possibilities but now he doesn't know how a book works. He started just closing the book without placing his book mark when he was finished reading  and couldn't show me where he left off. I started prompting him each night before we started reading and he said he understood. Not successful.

So I started marking his place with a post it and a pencil notation so I could help monitor. I would try to see where he was, take the book before he could close it and mark the place. Every night before we began I would remind him, "Don't just close the book, show me where you stop." After he stopped he could not respond to showing me where.

Most recently, he has been on the same few pages for about a week. Out of the corner of my eye, while I was reading, I saw he had progressed two pages and then turned to the next page, turned back, turned ahead again, then turned back. I do not think he knew what to do next or understand the flow of a book. Last night he read about two paragraphs to my ten pages. He announced he was finished but couldn't point to where he left off. I cried myself to sleep.

Right this minute, after a second, this time successful attempt to go to the bathroom with his pants correctly around his ankles, he struggled for quite a while to fasten his belt. Finally accomplishing that I said in a complimentary tone, "I see you got your belt on OK."

He pointed to his Medic Alert bracelet, "This?"

Retro Normalcy

Besides keeping Gregory safe and happy, I feel my most important role as life partner and caregiver partner is to maintain, for both Gregory and myself, as much of a sense of normalcy as possible. That means daily routines, life skills, meals, entertainment, interactions, social relationships, sense of home, etc.

But I have come to realize that the "normalcy factor" shifts as quickly and as erratically as Gregory's Alzheimer's shifts. What was normal last week, yesterday, earlier today is not necessarily normal this week, today, now.

This realization adds a new understanding of my role and while it doesn't make it any easier, it does create a validity to the roller coaster of my emotions, difficulties of day to day interactions, and sometimes impossibility of providing for Gregory.

P.S. I have recently become Gregory's Bowel Movement Coach. I'll let you decide what that involves but lets just say that I hope it is only the very, very beginning of Gregory's incontinence. Coaching is much easier than changing the whole ball game of bath rooming.

Spoiler Alert

Do not read this if you are squeamish about a person shitting their pants or if you have never been a mother or a father having had to change your child's diaper or training pants.

Cleaning up a child's messy butt with moist toilettes and rinsing out a filled diaper is not for the weak at heart.

He came down with a bad cough yesterday and maybe that is why. We were both taking a late morning nap and the bedroom smelled like what a full diaper smells like, if you remember.

While I have never been, am not now, and hope never to be a parent; I do remember from my baby sitting days what that smell is like. It is much more than a fart but and much more than a dump in the appropriate location. And it lingers.

It was not a full load, just a fart's amount gone awry but none the less all the information I needed to inquire and inspect the situation was there.

Since he is not good at communicating, and probably didn't even realize what had happened, I am grateful for my sensitive nose. I used to say that I could smell a batch of cookies in the oven when they were just about ready to be taken out. Sorry for the mixed. chocolate chip cookies metaphor.

I was able to attend to doody or is it duty without making him feel bad and with being able to keep my breakfast down.

Enough said. Or have I said too much already?

What is Your Name?

Don't read this if you get easily depressed, because I know that after tonight's episode, I am depressed enough for an entire city. Maybe he is loosing more functioning because he is still ill. I do not know what to think.

He was in the bathroom on the toilet. He moved his bowels and wiped himself. I asked about the toilet paper still in his hand and he didn't know what to do with it. I had him stand up so I could see his progress. He had done some wiping after all. He sat back down.

"Throw the paper in your hand into the toilet." He did not know what to do. He looked at the garbage pail next to the toilet and pointed at that. "No," I said, "In the toilet." He continued to look confused. I asked him to stand up again and said, "You throw the shit paper in there." "Oh," he replied.

I explained the process to him again and you would have thought I was speaking in a foreign language. "So it looks like you do not know how to use the toilet anymore, I will have to help you."

He got upset with me and was able to say, "Can't ... you ... just ... tell ... me?"

"Yes," I answered, "but when I tell you you don't understand." He didn't understand. We went through the three or four times. Tell me. But you don't understand. Tell. Understand. Tell? Understand?

Previously we have attributed his problems to Alzheimer's and he is usually the first to tell you he has it. I said, "This is what Alzheimer's is all about isn't it! You know that don't you?"

"No! I have Alzheimer's?" He was incredulous as if he or I had never said or heard this before.

"Yes you do," I answered, "we have talked about this before." So I braved it and asked something I have wanted to ask for a while, "What is my name?" No reply. "Do you know my name?" He stood there silently for quite a while with a look of dread on his face.

Finally he said sadly, "No I don't."

"Michael. Do you know your name?"

He fumbled for words, thought, and finally answered, "I don't have one."

"Your name is Gregory." A light somewhere deep inside seemed to go on, or was I just imagining it.

"Why don't you get ready for bed now" and we had to work through what that meant.

Scatology Part 2

Just when I have gotten over the previous dilemma, disappointment, impasse, lack of communication, misunderstanding, inability to discuss therefore solve or explain ... the SHIT hits the fan again.

Every hour on the hour I have been sending Gregory to sit on the toilet just in case he might need to move his bowels. I have tried to let him be more independent by not supervising. I go in after while, ask him to stand up, so I can check his progress. So far two small liquid movements. Several times nothing and that is good. NO accidents and that is even better.

I have stopped supervising his "wiping" having decided that if he is not as clean as he should be, so be it. We'll shower again tonight.

He just finished his 3:00 attempt in the bathroom. I came in several minutes later to see how he had done. Luckily he had not done anything because he forgot to pull down his underpants. There he was sitting on the toilet, folded toilet paper in hand at the ready, with his underpants full up.

I began to point out the problem but from the look on his face I could tell I was WASTING my breath talking about the situation. So I am writing this instead.

Again, not for your sympathy or your feeling like you want to help but can't.  I am writing this because my BLOG is SOMEONE I can talk to and get some closure and do the theoretical count to ten to calm myself down.

1 ... 2 ... 3 ... 4 ... 5 ... 6 ... 7 ... ... ... ... ...

On Vacation

Time to get up. I stay in bed a little longer because he usually takes about a half an hour to get his bathrooming completed.

He comes back to say, I need help with knobs and things.

You’re not taking a shower now are you? 

No. I need light.

Why don’t you go back and try to figure out how to turn the light on by yourself?

He gets mad. Fuck You! (I think this is a first.) Why are you treating me like this? He goes back into the bathroom, no light, and sits on the toilet to move his bowels. 

Hate talking about this as I have always said that one one way to stay young is to never to talk about your bowels and here I am talking about bowels … well at least not my own. Lately he has begun to forget, while sitting on the pot, if he wee’ed, if he went, if he wiped.

Finally I show him how to turn on the light. Mention that he seems to be at an all time low. Say I hate treating him like an invalid. Say that after four days in the same hotel room I would think he would know how to turn on the light. Say that I can help him brush his teeth if he would like.

He spends an inordinate amount of time showering (after I got the water running,) brushing his teeth, cleaning up. He isn’t able to see the deodorant which is on the counter in front of him. He looks at the travel soap dish and wonders aloud where the top is, until he taps it and realizes that the lid is on, it’s just clear. He is not sure where to rehang his wash cloth.

I help him select his clothes and suggest a few times how to dress. You might want to put your pants on before your shoes. I continue typing a blog avoiding dispair when sitting on the side of the bed he comments, “You know … I think … it has to do … with … fear … or something. 

Of course I melt. I see he is near tears and go over to him and hug him close. He begins to cry. I sing-song to him, “You have nothing to fear. I am here to protect you. I will never let anything happen to you. I will take care of you. But I WILL challenge you now and then and I won’t always be nice to you. And we laugh. And the crisis has passed for both of us. And he says he isn’t afraid anymore. And I hold back tears through most of breakfast. 

My thinking is that he may have been afraid of being in a strange place or at having such problems with everyday activities but I suspect that his fear was at angering me, causing me to be upset, and possibly fearing loss of my love. Perhaps it was fear, very much like a child’s fear when he has upset a parent, of  having love withdrawn as punishment.

Which caused me to be upset. I’ll try harder. This vacation so far has not proved to be a vacation, at least not for me. Welcome to Circle World.