Operator, Give Me Central 220

This image makes a nice metaphor for Dementia/Alzheimer's!

Today Was One of Those Days

My phone ring at 9 o'clock this morning. It was Manny saying he had hurt his foot and was unable to walk. He would not be able to help Gregory today. So I got dressed, had a quick breakfast sandwich, and went to visit Greg knowing I would be helping him with lunch, spending time, and then also helping him with dinner.

In some ways it felt like my day been ruined, in other ways I was excited about spending the entire day with Greg. When I arrived it Lieberman, Greg was already at the table in the dining room with his the food sitting in front of him. I don't think he was confused that Manny wasn't there and he was patiently waiting. He was very happy to see me, we hugged, and I gave him a kiss.

Gregory ate his lunch uneventfully. Table conversation with Batia and Martha was fun and a bit of crazy as usual. We went back to his room where I shaved him and we visited until it was time for his nap. While he was napping I left to run a few errands.

I arrived back from my errands to find Gregory's wing's "living area" filled with people listening to Sharon play the piano. This activity was not taking place in the usual place because two residents were in the final hours/days of their stay at Lieberman so keeping their wing more quiet and peaceful was in order.

Friend Pat had also just arrived and was in with Gregory when she had to leave so the aides could get Gregory up from his nap and into his wheelchair. I saw the aides beginning their task so I stayed out in the hall. Pat and I had visited for a while when the door to Gregory's room opened and one of the aides poked out to say Gregory was having a difficult time.

Both Pat and I went into the room to find Gregory arguing, screaming, swearing, flailing, and kind of being physical with the female aide. He had gripped her by the arm and kept pushing his teddy bear at her saying take this, take this. (Meaning take the teddy bear.) She was struggling with him, saying "I don't want the teddy bear." and finally loosened his grip on  her arm.

I got involved by announcing that I was there, everything was OK now, calm down, calm down. I hugged him. Held him. And struggled physically with him but only a little bit. I told the aides that I could handle it now and they left.

Gregory was still being verbal, shaking all over, and upset. He had me by the arm and each time I carefully pulled myself loose, he would grab me again. Eventually, smothered with kisses, and hugs, and love he did calm down. He was still shaking but by massaging his neck and back he was able to calm down.

Pat and I stayed with him until dinner and by then all difficulties had passed. Pat said goodbye as I took Gregory into the dining room. Dinner was uneventful and by 6:30 I said my goodbyes leaving him parked in front of the main TV with the other residents.

What caused this melt down? Don't know for sure but can surmise. Manny was absent. Gregory's nap had been earlier than usual and/or too long. The aide had put his pants on only half way up in case he peed and his legs felt constrained. Pat's visit ended abruptly when the aides arrived which upset him. Gregory's assigned aide is newer to him and therefore unfamiliar. Maybe he had a bad dream. Maybe the noise from the music out in the hall was confusing. Maybe he was frightened. Maybe he was inadvertently hurt by the lift. Maybe he wasn't in charge of what was going on and it was just the Alzheimer's. Maybe it was just a bad day.

A Turn of Events

As you have been following Gregory's continuing journey with Alzheimer's, you will be aware that within the last few months the journey has been getting increasingly more difficult. This last two weeks has been very difficult with his having crying bouts, major confusion, restless nights of sleep, more difficulties eating, etc.

Up until now the Alzheimer's seems to have provided a buffer allowing him to be shielded from the day to day skills and memory losses and to live a calm, happy, contented life. That has changed during the last two weeks with increased bouts of depression, upset, crying, confusion, aimless wandering, defiance, and some minor aggressiveness.

The last week has seen periods of my not being able to comfort him, calm his upset, direct his activities, etc. It is as if the Alzheimer's has been running out of control. Up until now I have been able to support Gregory is a way that helped him keep calm.

This morning, after three very difficult days; he would not be calmed, was very angry, would not let me help him. For lack of better description he turned his discontent, frustration, and hatred on me, wouldn't let me come near him, didn't think he could trust me, and became fairly violent. (Obviously I did not take this personally knowing what Alzheimer's can do!)

The measure of taking action was "I was afraid for him and myself" so I called 911. Not long after police officers, paramedics, and an ambulance crew were at our door to help. Interestingly enough Gregory was relieved that someone else had come to help protect him from me. He cooperated with them getting him on a gurney, into the ambulance, and off to the emergency room. I followed in my car.

When I got there he was calm, but my arrival excited him again. They gave him a sedative to help calm him down, I left the room (knowing he was in good, caring hands,) and routine blood and other tests were done to rule out extraneous infections and other causes for the spike in "craziness." All of the test results are not yet back.

I am currently back at the condo for a few hours quiet time, Gregory is with his Companion Alaksh and was happy to see him, Gregory isn't as upset with me right now, and he will be in a regular room over night at the hospital with a "sitter" from 11:00-7:00. Further observation and planning will take place tomorrow.

I'll keep you in touch.

Note to Companion

Gregory had a difficult night. We were watching TV and he got very upset. He usually likes the program we were watching, so who knows what upset him. He did let me know he was upset through his gestures and actions, not verbally.

I was unable to figure out why so we stopped watching. He sat with me at the kitchen counter while I folded laundry but he continued to be upset. I tried the usual like having him go to the bathroom, offering him some water, holding his hand. He went on trying to verbalize that something is wrong but couldn't really express that he was upset or what upset him or why. I tried to assured him by covering all bases and telling him that:

EVERYTHING IS OK. THERE IS NOTHING TO WORRY ABOUT. EVERYBODY IS HAPPY. NOTHING IS WRONG. THERE IS NOTHING TO THINK ABOUT. I LOVE YOU. I AM NOT ANGRY. NOBODY IS ANGRY. EVERYTHING IS ALL RIGHT. This helped a little. 

He sat and touched the folded shirts and pushed them around a little. Almost a random involvement with helping me fold. I offered him a shirt to fold but he didn't know what to do with it.

After the folding we had a bowl of cereal and he seemed better. We went to bed early, I read aloud, and he had a good night sleep. Perhaps the comments in CAPITALS above helped cover what was bothering him. Might be a good technique to use. Who knows. 

Helpless Helping

I must supervise you every time you go to the bathroom. I always tell you to use the bathroom before we go out and I suggest you use it after an hour or two has gone by at home. I visually make sure that you pull down not only your pants but also your underpants. Lately you lower yourself with great uncertainty onto the toilet seat.

I listen for "plots" or "tinkles." When you seem done, I tell you to sit for a while and sure enough you do more. You don't know when you have more to do so the waiting works. I can't ask, "Did you shit?" "Did you pee only?" to tell me what kind of help to give so I either have you "wipe" anyway or ask you to stand up so I can see what in in the toilet bowl.

I verbally go thought the steps with you of taking toilet paper, wiping, tossing into bowl and repeating until clean. I tell you to use a wet wipe next and sometimes have to help you open the box they are stored in. I flush in-between wipes if you are using a lot of paper.  Telling you to "Flush" doesn't register and confuses the process so I do it for you.

You are always amazed and sometimes upset when "something is happening down there" as if moving your bowels or urinating is an amazing, unusual event in your life. I used to say something like "taking a dump is good" but have stopped bothering and just say "It's OK. Good job."

You do not know how to use a kleenex to blow your nose but instead use fingers aiming the blow towards the floor. You did OK once I showed the box of tissue but then you did not know where to throw the used tissue. You did not know how to open the garbage can once I showed it to you.

You do not automatically know how to use the knife and fork any longer, and you use your fingers to eat a lot, which I don't mind at all. But now being able to pick up a piece of food in your fingers and biting off a piece is the next skill you are loosing.

You know you want a glass of water, and sometimes can even identify the glass sitting in front of you, but then you stare at it not knowing the next step.

It's hard enough to get you ready to go outside during the winter but even with help putting on your coat, you get your arms all tangled up in the sleeves, untuck the scarf once I have tucked it, stand at such an angle that I have difficulty zipping the coat closed, take your ear muffs off once I have put them on for you, cannot coordinate your fingers and thumb in the correct orientation, as well as closed position to put on your gloves.

When we arrive at our destination and I am helping you take off your coat I unzip the zipper, I tuck your gloves and earmuffs into the coat pockets, I tell you to take off your coat. This causes you to immediately take the gloves and earmuffs out of your pockets.

Fastening and unfastening your seatbelt in the car takes place correctly about fifty percent of the time. One time you got yourself so wrapped up and knotted up in the straps that I didn't know how to get you out. Finally figured it out but had to put you through some contortions. Often you do not know how to open the car door.

About half the time now when you read you forget to put on your glasses and wonder why the reading isn't working. Another half of the time you put on your glasses and wonder why the room is blurry. Sometimes you do OK with your glasses but I have to monitor when they are dirty and clean them for you.

We watch TV together a lot and that is a nice pass time. At times, your responses to my comments make we wonder if  you really understand what you are watching and sometimes the responses make me tip my head and wonder if we are watching the same program.

In our day to day conversation (meaning my talking) I'll point out something through the window of the condo or that we are passing while in the car. I can tell by the focus of your eyes that you are not looking at the same thing I am pointing out. Sometimes I try to directed your gaze and you finally register what I was talking about. Other times it just does't work and the experience has passed. I just say, "Never mind." It sound rude but what can I say. Maybe "Oops we missed it."

So even as I help you, I cannot help you and that makes me sad. And the part that probably makes me the saddest is that we cannot talk about what went wrong or about either of our frustrations. And I am sad that sometimes I do not know how to begin to help or what to do to help. And then there are times I am sad that I am sad and that makes you sad.

I still try to show you, or explain the steps as simply as I can, or demonstrate. I touch, I poke, I push, I suggest physically. Most of the time nothing works. Most of the time I feel so helpless especially as your needs continue to increase and mystify. And most of the time I feel sad.

Christmas Sadness

Today was to be the day for decorating the condo for Christmas but.. ..A
How can one find the love, joy, and magic in things Christmas.............L
When the only feeling available to me is sadness knowing....................Z
That the prospect for the sadness to change doesn't...............................H
Seem to exist any more as his abilities...................................................E
Continue to slowly disintegrate into.......................................................I
Confusion, frustration and finally...........................................................M
As we welcome death as.........................................................................E
A way back to peace................................................................................R
And quiet and.......................................................................................... '
Rest..........................................................................................................S

After a difficult morning,
Gregory asked,
"When will you be able to have a little time to yourself?"
Michael replied,
"Never again, to be honest."

GONE:
•Unable to identify when he needs to go to the bathroom.
•Unable to identify verbally whether he urinated, defecated, both, or neither.
•Unable to clean up after defecating or messing self.
•Unable to shower by himself.
•Setting up tooth brush with tooth paste.
•Unable to navigate a plate of food.
•Unable to automatically identify and use a knife, fork, and/or spoon.
•Ability to pick out clothes.
•Ability to zip up jacket.
•Ability to answer a phone.
•Ability to help make bed.
•Ability to understand the mechanics of reading a book.
•Helping with any household tasks.
•Being by himself outside of the condo.
•Being by himself inside the condo.
...and more

ALMOST GONE:
•Comprehension of all types: TV show, musical, theater, book, verbal exchange.
•Use of fork to scoop, spear, or cut.
•Correct orientation of shirt and pants when getting dressed.
•Putting on belt and hitting all loops.
•Following simple directions of any type.
•Turning on light switch.
•Remembering to put on face cream and deodorant.
•Showering self.
•Follow through when understanding what to do without instant forgetting.
•Folding laundry. No longer can do underpants and nightshirts. Sometimes not undershirts.
•Taking garbage and/or recycle to the room at the end of the common hall.
...and more

STILL PRESENT:
•Saying "I love you."
•Sleeping through the night.
•Brushing teeth when tooth paste is applied to brush for him.
•Doesn't mess pants too often.
•Laughs.
•Enjoys being with friends.
•Seems to enjoy movies, TV, theater, etc.
•Swimming.
•Long walks.
•Socially appropriate behavior.
•Calm and content.
...and more

Going, Going, Gone

Maybe I should just keep record on a separate piece of paper instead of posting it to my BLOG but this way I can: 1) process, 2) share, 3) record, 4) maintain, 5) save, 6) cry.

SO FAR THIS MORNING: Gregory could not take simple directions on how to get his shaver to stop squeaking (at least he did figure out how to plug it in) so he had to wait until I finished my use of the bathroom (read taking a dump) to help him. We are not shy so use the bathroom together. It actually gives me the opportunity to monitor him without seeming like spying. But even my private moments have become his.

Next I had to remind him to put on deodorant and face cream. He could not find them so I opened the medicine chest and pointed. He was able to put the correct product on the correct area of his anatomy so I guess I should be grateful.

Then he put on his underwear (I missed noting if they were right side or backwards but guess that doesn't really matter) and sweats without my help. Fist time this week! So I guess I should be grateful. Doesn't necessarily mean anything for tomorrow.

As he was leaving the bedroom I mentioned, "Your paper is on your desk." 

He headed towards the front door. I called him back and said, "Your (corrected the word) NEWSpaper is on your DESK." 

He headed toward the front door again. "On your desk." "WHERE YOUR NEWSPAPER IS EVERY MORNING! Do you know where your DESK is?" 

"Yes, out there."

"Yes, out there," I reinforced.

Then the numbness, and tears, and confusion, and not knowing how to "fix" this type of interaction, and the fear of the future, and depression (and only a tiny bit of anger) follow. 

Then the processing for the BLOG begins. Luckily I had made my first cup of coffee before all this began.

Simultaneously through all this Emma, my kitty (GiGi is Gregory's kitty,) brings me her Krinkle Ball so we can play fetch. A little bit of unqualified love from my kitty and processing from my BLOG make me feel a little better. 

Perhaps making some signs for important places that Gregory does not seem to be able to make associations between the word and the place would help? Don't feel really optimistic about this but I will try. 

Perhaps I need to make sure that I do not begin to meet my own needs (like taking a dump) until Gregory is finished with all of his and settled. Problem being that often when I think he is settled, a new aspect of getting settled doesn't work for him. But I will try.

At least I was not mean to him. I think I appeared patient on the outside but even feel guilty about what was going on inside, isn't that silly? I will try.

Last night we watched "Call for the Midwives" on PBS, a British program about post WWII and a group of midwives and nuns in England. Excellent second season. 

A baby is born with Spina Biffida. Medical know how will make the baby's life as comfortable as possible but one of the nuns talked about the early days when the best thing to do for the baby was to help it die comfortably. Even in the church, that was acceptable. 

After trying to help the parents but failing to help them deal the diagnosis, the head nun tells the grieving midwife, "Sometimes one has to admit defeat and move on. There is a lot more of life that needs to be lived."

I identify.

Today, this came across my mail: 

Shambhala Publications

SUPPORTING CONDUCT

With regard to one’s behavior, one must relinquish all the limitations implied in subject-object duality (gzung ’dzin gyi la dor ba). One should abandon all ordinary ways of assessing outer and inner phenomena, and the engagement or withdrawal of the mind with regard to “good” and “bad.” One must not, through mindless clinging to sense objects, stray into the five ordinary mental poisons. For when approached with skillful means, all are but the display of the great and perfect equality.

—Jigme Lingpa, from Treasury of Precious Qualities: Book TWO!

So does that mean that what I am experiencing is neither good nor bad? It only is? Is what I am going through bringing me closer to achieving great and perfect equality? And if all of this is true, how am I going to get through this journey to the end? Time will tell, but I will try.

Meanwhile, this is a list I have been keeping for a while.

GOING GOING GONE

Taking pills - comes and goes.
Putting a belt on - usually gone.
Using mouth wash - gone.
Word bathroom - gone.
Understanding most words - almost gone.
Using most words - almost gone.
Brushing teeth - comes and goes
Reading at bedtime - almost gone.
Going for a walk by himself - gone.
Picking out his own clothes - gone.
Getting ready for bed - comes and goes.
Shaving in the morning - comes and goes.
Getting dressed - comes and goes.
Toileting - comes and goes.
Communicating with words - gone.
Using a fork and knife - comes and goes.
Navigating the food on a dinner plate - comes and goes.
Fastening his seatbelt in the car - comes and goes.
Using a urinal when out - comes and goes.
Controlling flatulence - comes and goes.
Comprehension of TV - uncertain.
Helping make the bed - comes and goes.

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?"

Two Second Forgetting

Every evening I pile Gregory's slippers,

Sweats, and underwear on the bench,

So he can get himself going in the morning,

Hopefully without my help, my assistance.

Every morning he asks anyway, "Are these mine."

Two second forgetting isn't his fault.

For a while I resented having to reply, "Yes!"

After having gone to the extra trouble,

Having laid out his stuff ahead of time.

Now I just say, with understanding, "Yes."

That makes it easier, without resentment.

Two second forgetting isn't his fault.

Sometimes he takes part of the pile

into the bathroom and for some reason

gets distracted and leaves it there.

"Something is wrong." he will say.

"Yes," I will say. "Look in the bathroom. 

Two second forgetting isn't his fault.

After thinking a few seconds or minutes

He returns to see what he left behind.

Sometimes he finds what he is missing

Sometimes he cannot see in front of his eyes.

With understanding I will get up to help.

Two second forgetting isn't his fault.

Sometimes the undershirt is on backwards,

Sometimes the sweat pants are inside out.

Sometimes things are in the wrong order,

And sometimes in the wrong place!

So I smile. I didn't always used to smile.

Good for me. Understanding is easier.

Two second forgetting isn't his fault.

Two second forgetting isn't his fault.

An E-Mail to C and M, Our Niece and Nephew

C & M

How about a visit Wed August 7 through Sunday August 11? We have theater tickets the next weekend.Want to spend longer so G and I could enjoy the area, spend more time with R & L, and more being with M & D. Of course we can never get enough time with you guys but understand that you'll be working during the week. No expectations for your being available during the week.

Interesting comment on thinking about what is still to come. Do you have any idea of what you might be looking for? You certainly are a success in your personhood, your real estate career, your love relationship, etc But I guess that you are still young enough to aspire to more, bigger, better, different, etc. 

For me, I feel that I can relax on that account because I have achieved much and have what I want (given G's Alzheimer's.) I do not find the need to prove myself or to "earn my keep" in society. Been there done that. While Michael's Museum was great and continues to be a wonderful legacy I am happy it is over. I also recently quit Ragdale because my efforts and volunteerism there began to feel like a job. Feels good to say goodbye to them while I hold on to the fond memories of my residency in 2010.

One continuing desire is to be a published author. Not self-publicaiton but bigger. So I guess I think about that but not obsessively and many not strongly enough to really get it done. 

I have begun my first attempt at writing fiction. Based on my real psychic past life regression experience which I think we have talked about. I am researching the time period of each "life" and trying to flesh out a chapter for each person I have been based on the regressions: Carny, Nun, Farm Wife, Rural Child, and Renaissance Baker. 

Travel might be a possibility but only will happen if I can do it by myself, with G being taken care of, and while OK it is a little lonely to do so without him. P has said it would be fun to travel together. She spent a long weekend with G and I in Mexico and I think we would get along as travel partners. 

But for the most part I am content to be at home with Gregory. I can fantasize about big trips to Europe or Japan etc but don't really believe that I have it in me, even with help. Maybe when the ship comes in and we can take R or P along all expenses paid it would make it easier, or with you and M. Fun to think about.

I would like to have more avenues to express my creativity but that seems back door to getting through each day. Sometimes I think that I can NEVER be creative ENOUGH! 

I find that Gregory and my world continues to narrow and we pull in but that is probably a combination of old age and his illness. We keep busy, see friends, entertain, are entertained, enjoy the movies on DVD and our theater and opera adventures. I do not feel the need to accomplish anything great or volunteer and give give give anymore.

G's birthday party was best attended ever with close to 50 people attending. All had a good time. But I find myself saying I need to cut back, after all planning, executing, and cleaning up after a party like that for a man who is almost 70 years old takes its toll. I am not crying "old man" but am getting older, aren't I? Next year fully catered or just having people in for fireworks, cake, and birthday wishes.

Agreed good and bad are one and both part of being alive. One must take the one with the other.

Regarding your question, we are doing fine. I am feeling a little constricted since we have no companion and I had gotten used to have some freedom and alone time. I expect more students will respond to our notice when they begin returning to campus.

Meanwhile I have enlisted R and J to be with Greg for three times so I can investigate Memory Care Facilities in the area. We are far from that need with many options available but I want to know what is available and get a sense for how it might make me feel to think about having to place Gregory if and when it comes to that.

As far as sad, I am sad but that is part of the "life of good and bad" we spoke of. Some days seem slow and dull and others are more fun. But sadness seems to ride on my shoulders as part of who we are today. If I can get through a day evenly without not to many "confusions" with Gregory, I am content.

As far as Gregory's sad, I think he is just getting more and more tired, a little more withdrawn, and more settled into being "less." But he is happy, appreciative, enjoys his food and TV etc.

All for now.

Love you both lots.

m

Speaking First With Anger and Fear Instead of Love

Besides our difficulties getting started this morning (click here if you haven't read my earlier post) Gregory had a few other disconnects today. I parked in the lot of Office Depot and told him to wait in the car and opened the window. I had something waiting for me at the register and knew it would only take a few minutes.

While I was paying, I looked up and saw Gregory waiting for me by the front of the store. He signaled across the registers to let me know he was there. I got upset because he not only didn't stay in the car, but left it open, walked across the parking lot into the store, and waited to find me there. I was terrified that the situation I thought in hand was not under control at all. I was overwhelmed by all of the things that could have happened go him.

Maybe I should have just been grateful that he was there and I saw him waiting but like the parent who spanks her child for playing in the street and almost getting hit by a car instead of hugging him and telling him you are so happy he is safe and well, I got angry and balled him out.

After grocery shopping, we arrived home in the parking garage. There were four heavy shopping bags, two for each of us to take up one flight of stairs to our condo. I took two bags out of the trunk and asked Gregory to get the other two.

He first tried to pick up both by holding one handle from each of the heavy bags. I told him to wait, put my bags down on the ground, and separated the bags still in the trunk hoping it would make how to hold them more obvious for him.

He took one bag and held it to his chest and then didn't know what to do with the other. By now, given the day and the previous disconnects, I knew that it would be easier for me to do the work rather than try to explain or instruct him how to carry two shopping bags by the handles each swinging in a different hand.

I was able to be somewhat kind and not vent my full anger and frustration or worse yet give in to my rage, although my emotions were pumping. After my second trip schlepping the groceries from the parking garage to the condo, I made his coffee, unloaded the groceries, made a cup of coffee for me, and attended to some work waiting for me on my computer. I was, however, somewhat distant and silent, which also sends a message to Gregory.

A short while later, I invited him into the computer room to watch a few TED presentations which are always moving. Afterwards he came back into the computer room and carefully began to apologize for his earlier behavior. I was able to help after asking if he was trying to apologize or was angry with me over my behavior.

I sat him down, took his hand, and said, "I appreciate your apology but I have to apologize to you as well. I know that you did not do anything on purpose today, you did not try to make me angry. We both know that at times your brain plays tricks on you through no fault of your own." At this point he began to cry. I squeezed his and and told him that I loved him.

I continued, speaking very slowly, "What happens in these situations is that I speak first out of anger and fear when I should be speaking out of love. I am working so hard at speaking out of love only but I am not too good at it yet." And I began to cry.

I think Gregory understood what I was trying to say. I reinforced that I love him no matter what, that I am here for him, that nothing that happened today was his fault, and that by now I am over it and not at all angry or frightened anymore. He reaffirmed his love and gratitutde for me.

He felt much better and so did I.

And he did...

We have been up for one hour.

He tried to run his shaver without plugging it in. I did not help but explained matter of factly, "You need to use the cord."

He struggled figuring out how to get the plug prongs correctly oriented into the outlet on the wall as well as into the back of the shaver. "What's wrong with this?" he asked. I did not help but just said matter of factly, "You know how to do that." And he did.

While shaving he was cold and mumbled about this and that. I did not help but just said matter of factly, "You know how to turn on the heater." And he did.

The cat arrived on the sink, as she often does, seeking water. Gregory waved his hands at the faucet. I did not help but just said matter of factly, "You know how to do that." And he did.

After he finished shaving he opened the bathroom door with the "What's next?" look on his face. The what's next is getting dressed, his clothes neatly piled on the bench just outside the bathroom door. "You know what's next." And he did.

He called me into the living room saying, "It's all fuzzy" waving his hands around the room. He pointed to the window shade that was half way up (the way he likes it while sitting at his table over the newspaper.) "That's not right."

I explained that the living room was dark because it was raining out. He wanted the shade up anyway so I opened it fully. "No, it needs to be here," he pointed half way. So I lowered the shade and explained the darkness again.

Sometimes he doesn't.

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 ... ... ... ... ...

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.

Conundrum

conundrum |kəˈnəndrəm|noun ( pl. conundrums )a confusing and difficult problem or question: one of the most difficult conundrums for the experts.• a question asked for amusement, typically one with a pun in its answer; a riddle.ORIGIN late 16th cent.: of unknown origin, but first recorded in a work by Thomas Nashe, as a term of abuse for a crank or pedant, later coming to denote a whim or fancy, also a pun. Current senses date from the late 17th cent.While I chose this title to refer to the conundrum I found myself in today, it also fits into what I would call "The Riddle of Alzheimer's."After struggling with helping Gregory to select his clothes every morning for what has been at several months, I came to the conclusion that I should take over the responsibility. Because Gregory has such difficulties with word and item associations, my verbal explanations (although simple) and prompts were not helping. Even taking him into the closet and pointing at an item didn't help.For example this morning he had on undershirt and underpants and was holding his belt, knowing something was wrong. I prompted, "You need pants." He went into the closet, opened his drawer and began taking out a second pair of underpants. "How many pair of underpants do you need?" (Poorly asked question, slap my hand.) So he put back the second pair and began taking off the first pair.By the time I just took a pair of pants off the hanger and handed them to him, he was totally uncertain what he had to do next. "Put these on." That worked. Next, while he knew he needed the belt next, he fumbled with figuring out how to get it on. I had to thread it through the loops for him. I stopped "interfering" to see if he could pick up from here but with sox in hand, he pointed to his feet and said, "Something needs to go here." "Yes, sox." So he got up, went into the closet and got a second pair of sox. Before he could try putting on both pair, I took one and put it back in the drawer. He was able to select his shoes and put them on, today, and successfully after the sox were on. "Would it just be easier if I selected your clothes for you in the morning?" I asked gently. "You have been struggling with this for a long time and when I try to help, it doesn't seem to work."He thought for a short while and replied, "Yes. I think it would make it easier for me." He said this in a docile, earnest way. No anger, no frustration, no resentment, no loss. Obviously it was not the answer I wanted (although I knew it was the right answer) because I still want him to try to work through things. But his answer was much better then one of confusion, anger, frustration.It was the right answer because by now it was more than obvious that we were in a "loose/loose" situation. My help wasn't helping. If my "taking over" made him feel bad, it fit into the "Feel bad now or feel bad later" category. By my taking over, I will not get frustrated or short with him. I will easily be able to avoid snide or negative or resentful remarks (which I try keep to myself anyway but with which I do not always succeed.)The conundrum is that if I decide to "take over" at least there will be a predictability and a follow through for me but with him not having to work through getting dressed, he will loose the skill completely. Feel bad now or feel bad later?I will begin making the bed right when we get up so I can lay his clothes out in the right order without a rumpled bed to confuse him. I have velcroed the closet doors closed so he will not be tempted to dress himself, or get another pair of pants even thought I have put a pair on the bed for him. (Keeping everyone out of the closet but myself will also help with the recent problem of our new kitties chewing up our shoelaces.)As in the past, down the road I will ask Gregory if he would like to try taking the job of selecting his clothes back again. Sometimes he does and is successful. Other times he does and is NOT successful. Sometimes he just relinquishes the job calmly saying, "No thank you."The riddle is that maybe this new procedure will work, maybe not. Maybe it will work today but not tomorrow or maybe tomorrow but not the next. Just laying out his clothes every morning does not insure that he will be able to dress himself, remember to put everything on, and in the correct order. But as in the past, I will be ready to move on to the next conundrum, the next riddle, the next solution, or not.riddle 1 |ˈridl|nouna question or statement intentionally phrased so as to require ingenuity in ascertaining its answer or meaning, typically presented as a game.• a person, event, or fact that is difficult to understand or explain: the riddle of her death.
ORIGIN Old English rǣdels, rǣdelse ‘opinion, conjecture, riddle’; related toDutch raadsel,German Rätsel, also to read.

 

When is Helping Not Helpful?

I still help too much. It is my nature to help. It is my nature to nurture. When confronted by a situation in which someone needs help, I will walk in and do my best to help. I will be sensitive, respectful, and take context as well as gestural cues to moderate and if necessary remove my helpfulness.

For example, walking down the street, woman in front stumbles and falls, purse empties. I will go into immediate action to make sure she is OK while at the same time making sure the content of her purse do not go too far astray. I will offer my handkerchief if her nose is bleeding or her hand got scrapped.

I will not only give physical comfort but also try to make sure she is not too embarrassed. After all accidents are accidental but we still seem to get embarrassed at our behavior. Sometimes people do not want help in situations like this and one must respect that. So after inquiring, I back off.

If someone looks like they are having a hard time, perhaps while sitting on a park bench, I will inquire about their needing help. Shall I sit with you? Shall I call someone? Can I help you home?

When we lived on Roscoe, Mary lived in one of the apartments. She was in her 80's, indigent, as close to being a homeless person as one can get while still having a home. She lived with her adult daughter who was developmentally disabled and prone to alcoholism and violence.

I would always say hi to Mary, who spent a lot of time sitting on the front stoop. Sometimes we would sit and talk. Once she had just returned from a neighborhood church that had free lunch and bingo on Wednesdays. She had won a flowered cup saucer as a prize and offered it to me. I thanked her but figured she could use it more than I, I now wish I had taken it as a memento, maybe that would have made her feel good.

One day, when I was leaving for work, I spotted Mary sitting on the stairs of the back porch. She looked very pale if not white. I sat down next to her and we were silent together for a while. "Are you OK."

"Yes, just a little tired."

"Are you sure. Can I help you?"

"No. Thanks. I'll be OK after I sit here a while." I left for work.

Mary died later that day. At least I was able to offer some comfort, if not unspoken love.

Even in very difficult situations, I am able to be strong and helpful. Once while living in New York City, my upstairs neighbor fell down the stairs from her second floor landing. She ended up on my landing with her face caught between the open door and the wall. I heard the crash and went running.

When I saw what had happened I called to Robert, my then lover, bring a blanket! I know you are not supposed to move a person but I did after assessing that she would possibly choke on her blood in this upside down, wounded position. I talked calmly all the time, inquiring about her pain, making sure my moving her wasn't complicating something like a broken neck, wrapped her in a blanket and held her in my arms murmuring comforting sounds while Robert called an ambulance.

We saw her off in the ambulance and waited for an hour until her husband got home (a little drunk on payday) and took him to the hospital. Afterwards I went into a little shock myself, but was OK in a short while. t is my nature to help. It is my nature to nurture. When confronted by a situation in which someone needs help, I will walk in and do my best to help. Interestingly enough, from that day on, the neighbor woman never spoke to me. If she saw me coming she would cross the street. Too embarrassed? Indebted? Never will know.

So all this "about me" and how good I am, is not to brag but brings me to my current topic. I help Gregory too much. If only I could wait and not rush in to help him, to lessen his frustration, to ameliorate his pain. For example, this morning he was getting dressed, I was at my computer, and he comes out of the closet carrying two shirts. One of them is mine. Often he forgets which side of the closet is his.

So I gently say, pointing, "That shirt is mine," trying to anticipate his actions.

To which he replies, "I know."

"Then why are you carrying it?"

"It was just there."

I might mention that he has problems getting dressed. Often he doesn't know the names of underpants or undershirt let alone which is the front. Once in a while he will forget he has one or the other on already and ends up wearing two or three undershirts or underpants.

When he comes out of the closet nude, not sure of what to do, I say, "You need to put on your underpants and an undershirt." Often I just say, "Underpants!" More often, I get up and point in the drawer where they are stored.

Even when I lay out his clothes, he doesn't always see them, or gets fixated on one or the other, or is thinking, "I need a shirt" so he goes back into the closet looking for a shirt, with the one I laid out still sitting on the bed, and can't find a shirt while looking through the area where the pants are hung.

So when I see him going off in these erroneous directions, I jump in with a suggestion for the correct action or behavior. This often serves to confuse him and then with his lack of active and/or passive language, i.e. speaking and/or understanding, we are not able to solve or explain the situation. Intermittently, my advanced comments do help, which serves to frustrate me more.

I get frustrated, he gets more confused. I get angry, he goes quiet. Sometimes, if I am tired, I get rude and very infrequently I "rage." My teacher self feels the failure. I want to disappear and my guilt sets in. One thing in my favor is that I am able to apologize pretty quickly.

So I berate myself with, "When am I going to learn. Why do I always jump in too soon. Why can't I just wait until he does wrong and then help. No babies are dying here so why not just chill and wait it out?" But I am helpful. That is my nature. Maybe next time I will be able to hold back and follow my new self instructions. I'll let you know if I get there!

Post Script (Disclaimer: Sometimes my assistance has to be very basic.)

In the middle of proof reading this post, Gregory was sitting on the "pot" making pain type noises. I asked, "Are you OK?"

He replied, "No. I think you might need to poke my butt." This is his way of saying that either his hemorrhoids are acting up or his anus area is irritated and sore because he is not always methodical in cleaning himself after a bowel movement. I check it out and if necessary begin a regime of putting cream on the affected area. I don't mind doing these personal things but try not to worry too much about the day when he becomes incontinent.

On checking this time, he had totally forgotten to wipe. So I cleaned him up and put on the cream. Then I had him sit on the toilet and asked him to kick off his shoes. He knew how to do it (this time.) Then I had to help him take off his jeans because he got confused. I also took off his underpants and showed him the mess, saying, "Looks like to forgot to wipe altogether." ME: Neutral, non-judgemental voice, he didn't feel too bad. HIM: "I can't imagine."

While I was away getting a clean pair of underpants, he decided to wipe. But he was wiping a clean ass on which I had applied healing cream, so I had to do it again. Because he already had on his sox, he didn't know how to put on a fresh pair of underpants. The order was wrong. I assisted. He was able to get his jeans and shoes back on. He thanked me, apologized for my having to do that. I assured him, "No problem. Happy to help"

So you see, sometimes it is obvious when and how to help. Other times it is not. Do you blame me (even though I blame myself) for getting confused, frustrated, angry, guilty, etc.