Forgetting

In response to a recent blog (Click here to read. Opens in a new window.) by fellow blogger Kate Saffer I wrote:

Wow Kate. This blog hit home several times. Forgetting vs Being Forgotten. Anticipatory Grief vs Phobia. During the last very difficult year of transition for Gregory, I never once asked him to tell me my name. I was so afraid he would not remember. Your are right. Anticipatory grief. Eventually, I think I asked for name verification only once and he failed. I refused to ask again because I am terrified of the results.

Recently when I arrive for my daily visits, he will look at me a little longer before recognizing me but then again he has had trouble focusing on things for maybe a year or so. So I stand at what I have learned to be the correct distance, I speak loudly (which I usually do, being used to teaching a classroom of 200 :-), and sometime repeat, “Hi. It’s me! Hey I’m here! I love you! Look at me!” Sometimes I will say “Look at me in the face,” sometimes twice or three times and he will be able to eventually do that and he will smile at my presence.

Sometimes I realize that he is too distant in contemplation and instead of forcing him to respond, I either come back later. Sometimes I shower him with kisses and either he receives them, waves them away, or ignores them. Having acted however, I feel successful in having announced my arrival.

More often than not he gets very exited to see me, he laughs, or reaches out for a kiss and hug. Once in a while (I usually melt when this happens) he will say something like, “Oh my Michael. My Michael.” That is enough for me.

Being a teacher of young children, you get used to not getting reinforcement for the work you do, rarely do you discover what your efforts turned into. So you get used to giving yourself compliments, knowing when you did a good job, sometimes knowing when you failed and trying to learn from it, but basically learning how to self reinforce. You get used to never seeing a finished product in your student. So that ability I have developed helps with Gregory, I do a lot of self reinforcing. In fact when others reflect on “how good I am” I get embarrassed.

Kate's blog was prompted by another Dementia/Alzheimer's blog at https://frangipanisingaporenicum.wordpress.com

Realizing vs Forgetting

I may have blogged this one previously so bare with me:

It is NOT PAINFUL when I wake up in the middle of the night or in the early morning realizing that Gregory is not in bed with me and realizing that he no longer lives at home in the condo with me. I am slowly learning to deal with that.

It IS PAINFUL is when I wake up in the middle of the night or in the early morning forgetting that Gregory is not in bed with me and forgetting that he no longer lives at home in the condo with me.

Changing Changes

The "Pocket Drawer" which was a wonderful invention on my part when we moved into the condo has seen its sunset. The concept no longer works. That makes me sad and I have fought its demise for a month or more but yesterday, finally, I let the Pocket Drawer Credenza take its last breath.

The credenza, which sits by the front door of our condo, is a beautiful piece made of black bamboo. has a long shelf just below the top of the piece and below, three drawers.

The top is for a fast, temporary drop off of cell phone and/or keys, and for holding incoming and outgoing mail. In the center there is our Buddhist Shrine with three singing bowls, Angel cards with motivating words, pewter coins with more words on which to meditate; plates with incense, water, earth, fire (candle,) and food. There are also two gray/green miniature pottery pieces made by our God Son Isaac while he was in Japan. Finally there a Japanese bell that has a sweet ring that sounds for quite a while during which time we pause to meditate on the words selected for the day. Every time we enter or leave the condo we pause at the shrine.

The shelf holds books that have overflowed our other bookshelves and also books that need to be returned to friends. You don't want to see the accumulation of dust on the shelf and books but since it is a narrow shelf, you cannot experience the build up unless you are kneeling on the floor.

The left drawer is Gregory's, the right drawer is mine, and the middle drawer holds our emergency information, a crank-up weather alert radio, several flash lights, and a power bar which receives the plugs of the charging cords that begin in Gregory and my drawers.

In our personal drawers we keep what I call our "Pockets" for overnight storage and charging. They hold our wallet, keys, cell phone, loose change, Chapstick, cough drops, medical alert necklaces, etc. Ironically (or not) my drawer reflects my personality and is chock filled with STUFF. Gregory's is spare and only contains the essentials.

The demise of the "Pocket Table" is taking place in the drawer area. As his Alzheimer's progresses he continues to loose word associations. So when I would say before getting ready to leave the condo, "Fill your pockets" or when getting ready for bed I would say, "Empty your pockets" he used to be able to follow through. No more.

Slowly he lost the "Pockets" associations. He would start, get distracted, and leave most of the items behind. At times he didn't know what I meant by "Pockets." Sometimes I would ask him to put something on the "Pocket Table" and the odds became better that he would not be able to follow through.

I began keeping an eye on his "Filling" and his "Emptying" and would point out when he overlooked a part. Then I started checking and finishing the process for him with or without pointing out the overlooked items. Sometimes when in a hurry, I would just fill or empty his pockets for him.

Recently he has been putting his wallet in the center drawer or in my drawer. He puts the cell phone on the top next to the singing bowls. After realizing that every morning and every evening was a battle, we discussed ways to make it easier. Since he no longer really needs to carry keys because I always have mine, we discontinued that.

Instead of his asking for me to show him how to put on and take off his "Medical Alert Necklace" we resorted to a bracelet (although less stylish) that he keeps on all the time. His comment (while I expected a fight) was, "Oh that will make it easier." He no longer carries loose change.

He still carries his wallet for ID purposes and his cell phone because he can still answer it if he is with his companion and I call him. He can no longer use the phone to call me. When we leave I hand him his phone and wallet and when we come home I take them and put them into the drawer for him. Automatic on my part not depending of the maybe of his.

While I feel bad that I seem to be taking away what little of his independence is left and while I end up having to spend more energy checking on him and waiting until I see that the action is accomplished, it feels good not to have to spend the energy being angry or frustrated and not needing to yet again explain what he needs to do. I just do it for him. I don't mind and apparently he trusts me enough to not mind either.

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.

 

Marbles Anyone

Forgetting the name of an actor, after accumulating 60+ years of facts and figures in one's mind, should only be the worst of Alzheimer's/ Dementia Disease. However, I like that Mr. Reardon ends the article with: "Maybe I should be thankful to the threat of Alzheimer's. It reminds me to live life as fully as I can. Or, as Gwendolyn Brooks writes, "conduct your blooming in the noise and the whip of the whirlwind."

(Tribune illustration by Mike Miner / March 10, 2012

http://www.chicagotribune.com/news/opinion/ct-perspec-0311-alzheimers-20120311,0,6707658.story

Beep Beep Beep

Very often Gregory backs himself cognitively into a corner and once there cannot get out my help.

Very often I back Gregory into a corner and once there he cannot get out by himself or with my help.

I must be more careful to "signal when backing," BEEP BEEP BEEP.

Conversations

Sometimes I will have a conversation with Gregory after a trying exchange. I will explain why I reacted as I did and how I plan to try to react in the future. I explain my rational. Most likely he does not remember the conversation but I cannot say for sure that he doesn't. What I do know is that I cannot bring myself to change my behavior or approach to him without trying to explain it. Possibly it is my way of explaining to myself what I need to do to be a better caregiving partner and possibly my way of holding onto our relationship as a "couple" rather than being an individual making unilateral decisions. Gregory seems to appreciate my sharing my feelings with him.

This is how one such "conversation" went last night. While he was not remembering how to put on his night shirt, brush his teeth, or swallow his pills I held back and said or did nothing. I have found that if I try to anticipate his needs, guess his needs, or intervene too soon ... I only serve as a further distraction. Sometimes given enough time he will solve his own problem. Periodically I tell him that "I am holding back to give you space." He seems to appreciate that.

I have decided (for now) and told him that I do not think it is fair or respectful to him when I take over without being asked. I reviewed that we have talked about previously about my helping often being more of a distraction and hinderance than a help. I told him that if he needed help, he needed to ask for it and I would give it freely, gladly, and supportively.

But I just need to stop jumping in too soon (especially if it isn't a matter of safety.) This is a very difficult stance for me because it is very difficult for me to just watch or see him suffer and do nothing. He may or may not remember to ask for help but I will mention this every now and then as a possible reminder. Obviously I will also be monitoring his needs and make changes as needed. For example if he continues having trouble swallowing his medications and vitamins, I have found a liquid substitute. I just don't want to assume that it is needed now.

More lyrics for "Michael's Down Play LIst."


IF YOU GO AWAY
(Ne Me Quitte Pas) (Jacques Brel / Rod McKuen)
Especially as sung by Shirley Horn


If you go away on this summer day Then you might as well take the sun away All the birds that flew in the summer sky When our love was new and our hearts were high When the day was young, and the night was long And the moon stood still for the nightbird's song If you go away, if you go away, if you go away 


But if you stay, I'll make you a day Like no day has been or will be again We'll sail the sun, we'll ride on the rain We'll talk to the trees and worship the wind Then if you go, I'll understand Leave me just enough love to fill up my hand If you go away, if you go away, if you go away


If you go away, as I know you will You must tell the world to stop turning 'til You return again, if you ever do For what good is love without loving you? Can I tell you now, as you turn to go I'll be dying slowly 'til the next hello? If you go away, if you go away, if you go away


But if you stay, I'll make you a night Like no night has been or will be again I'll sail on your smile, I'll ride on your touch I'll talk to your eyes that I love so much But if you go, go! I won't cry Though the good is gone from the word goodbye If you go away, if you go away, if you go away


If you go away, as I know you must There'll be nothing left in the world to trust Just an empty room, full of empty space Like the empty look I see on your face I'd have been the shadow of your shadow If I thought it might have kept me by your side If you go away, if you go away, if you go away

To Every Thing There Is a Season

I have found that with Alzheimer's Disease, to every thing there is NO season. We all have our routines. Most of us circle around our routines with tiny changes here and there. For example, as the seasons change, our routines change. We take longer walks, we dress differently for Summer than we do for Spring. The days are longer, the nights shorter, we sleep differently. We eat differently.

My latest awareness with Gregory and the progress of his dementia is that the seasons will change anyway but he is not be able to change with them. This Spring into Summer he has not been able to gauge what to wear, how to dress based on the temperature outside. The temperature means nothing, the weather forecast means nothing.

Jeans vs shorts, long sleeve vs short sleeve, heavy jacket vs light jacket ... mean nothing. When I suggest he wear an undershirt under his over shirt, the words do not translate. If I try to explain it only complicates things. If I get up and show him, it confuses.

Here I am again at a point where I find myself saying to myself, "I don't know how to do this." The tears are back, the sadness is back, the heaviness is back. I don't know how to do this. There is no answer. I don't know how to do this.

Yesterday, while at a meeting at the museum, I called to see how he was doing. I guess he got through breakfast alright but he answered, "I am not doing well." He sounded like something was terribly wrong. He sounded ill. He sounded distraught. He finally was able to explain (remember language doesn't work too well anymore) that he just didn't know what to put on so he could go out for a walk. I tried to suggest but it only confused. Finally I said, "Honey just put on anything, go outside, and see how it feels."

"I'll figure it out," was his reply. All I could do was tell him I love him, go back to my meeting, and hope for the best.

Just now as I am writing this, he brightly showed up and wished me, "Happy Birthday!"

"Why do you think today is someone's birthday?" I gently asked.

"Did I mess up again?" he wasn't able to explain. 

"What made you think today was a birthday?"

After a thoughtful pause, "Oh, I can't go through all of that."

Turns out he thought it was his birthday (which is 7/4 and today is 6/14) but I am not sure what prompted that.

I think I'll go take a shower and cry.

The lyrics are taken almost verbatim from the Book of Ecclesiastes, as found in the King James Version of the Bible, (Ecclesiastes 3:1) though the sequence of the words was rearranged for the song. Ecclesiastes is traditionally ascribed to King Solomon.

To every thing there is a season, and a time to every purpose under the heaven: A time to be born, and a time to die; a time to plant, a time to reap that which is planted; A time to kill, and a time to heal; a time to break down, and a time to build up; A time to weep, and a time to laugh; a time to mourn, and a time to dance; A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; A time to get, and a time to lose; a time to keep, and a time to cast away; A time to rend, and a time to sew; a time to keep silence, and a time to speak; A time to love, and a time to hate; a time of war, and a time of peace. With Alzheimers's ... there is only time ...

Not All of One Part: In Four Acts with One Intermission

This has been a new adventure. Suddenly items with more than one part are causing Gregory some confusion. I will have to keep an eye on this.

ACT ONE:
Scene One: Book Mark
Scene Two: Book

Last night as we were finishing up reading, Gregory seemed to be having some trouble with his plastic, clip type bookmark. He asked me if I had another one like it and I asked why. "This just doesn't seem to work," he replied. Then after looking at the bookmark, this way and that, he said, "This may seem foolish, but I do not know how to make this work."

I demonstrated, two times on my book but and he still didn't get it. Then he realized that the reason he didn't understand how to use the bookmark is that he had put his book away and the bookmark by itself didn't make sense. Once he had his book in hand again, he was on the track.

ACT TWO:
Scene One: Electric Kettle
Scene Two: Electric Kettle Base

This morning a similar event took place. He came into the bedroom where I was working on my computer and while he couldn't explain in detail, he said something was wrong in the kitchen. I followed him in and he pointed to the electric tea kettle and said, "It doesn't seem to be working. I have the water but."

He had filled the kettle with water but it wasn't heating up. The reason it wasn't heating up is that he had placed the kettle on the counter next to the base but not ON the base. Obvious to me but not to him. Once he realized that one needed the water in the kettle AND the kettle needed to be on the base to heat the water, he was back on track.

INTERMISSION:

You may have noticed that a lot of these recent BLOG entries have been describing new things that have been going wrong, misfiring, short circuiting, causing me anguish. I feel like I have been spending a lot of time detailing Gregory's progression (regression?) and that the BLOG may seem like so much complaining. But things seem to be progressing (regressing?) at a faster rate. Hopefully it will slow down after a while.

Certainly the BLOG is one way of my dealing with our life and also a way of sharing our life with people who care and need to know. Right now, however, I am not sure how helpful this is being to other people dealing with Alzheimer's and other dementias. Let me just say that perhaps my experiences will help if only to show you that you are not alone. Hang in there. It will get worse. You will get better at dealing with the details.

ACT THREE:
Scene One: Water
Scene Two: Glass

Just now Gregory is a little distracted because the plumber is working on the kitchen sink. He asked me, pointing to the bathroom, "Can I get water in here?"

"Yes," I replied. He stood in the bathroom doorway not knowing what to do. His hand kept taking the shape of holding a glass but he looked around getting more confused. He left the room and paused in the hallway.

"Do you need a glass?" I asked.

"Yes."

"Here use this one." He came back taking the glass I had on my desk which was half filled with water. He wanted to fill it with more water but already forgot that he could get water in the bathroom so he headed for the kitchen where the plumber was working. I called him back and said, "You can get water in there," pointing towards the bathroom.

"Right," he said. Once in the bathroom however he did not know how to 'get water." It took him a real conscientious effort, thinking out loud, and finally he figured it out saying, "Of course!"

ACT FOUR:
Scene One: Helping
Scene Two: Typing
Scene Three: Worrying

Meanwhile I am being distracted helping Gregory, typing this BLOG, and wondering how much this plumber visit is going to cost me. Life goes on.

CURTAIN

Remembering the Forgetting

Sometimes forgetting is good. Like this morning when Gregory asked me, "It needs to be fixed?"

I didn't remember that last night the TV and Cable Box were not communicating. He stood by my computer as I stopped working to listen while he tried to compose his thoughts.

I finally asked, "Can you show me?"

He said, "Yes" and I followed him into the TV room where he stood trying to remember what he wanted to tell me about.

Then I remembered the TV and all was well. "The TV?"

"Yes," he glowed!

I thanked him for reminding me and he felt good. All was well ... including my smiling loving face and my breaking heart.