Care Conference

Gregory’s current situation actually consists of two parts: 1) Responsive Behaviors and 2) Permanent RCA (Resident Care Associate)

Everyone seems to be reporting that Gregory has been experiencing an increased agitation in his responsive behavior as well as his every day “at rest” behaviors. This includes RCAs, Nurses, Manny, Hospice, Dr. Barris - Neuroligist, and me. Perhaps it is time to increase as minimally as possible his Risperdal.

According to Dr. Barris, who made it clearer to me, Gregory without language is not able to process or monitor his daily emotions. In many situations he does not know if he is safe or if he is in danger. The purpose of the Risperdal is to help keep him even so he doesn't feel he has to process or monitor, so that he just knows that all is good.

While the initial administration of the drug caused Gregory to be very sleepy, lethargic, and unengaged; he did slowly regain those energies and for quite a few months did very well; both even of mood and alert in demeanor. It looks like Gregory is needing more support either because his condition is advancing or perhaps the drug is loosing its effectiveness.

Lieberman, as it always does, sought my permission for the increase will carefully monitor any changes for better or worse and act accordingly. I believe that the increase is to help Gregory be more comfortable inside himself, not to make anyone's job easier!

A permanent RCA is one who gets to really know Gregory and his needs. They know when Gregory usually needs to be changed. Gregory gets used to that person being by his side more often then the others who support in changing him.

Recently his daytime RCA left to begin nursing school. I am very happy for her but sad for me and for Gregory. Yet again time for adjustments. This issue, however, troubles me a little more. There has been some issues with getting another RCA to take Gregory.

His leaving RCA and his evening RCA report that they do not see Gregory acting much differently than usual and that they feel they are used to working with him. He has the tendency to stiffen when rolled and calls out loudly when uncomfortable, unhappy, and/or frightened.

He does not like his “privates” to be cleaned especially when he has had a bowel movement. But usually Gregory does not physically “fight,” he just resists and gives loud verbal complaint! Because his regular RCAs know him so well, they are able to handle working with Gregory. They are able to anticipate when Gregory needs to be changed and also Manny keeps an eye on this.

Assigning a new daytime RCA is currently under consideration and prospective candidates are worried about how hard it is to change Gregory. They are assisted by one other person so that should not be an issue. Manny will be in the picture assisting so there will always be three people to help change Gregory. Difficult, back pain, and health issues should not be a problem. 

Also, I cannot believe that Gregory is the only “difficult” resident. What causes me concern in that with the attitude that “Gregory is a difficult resident,” the love and human care that needs to go into working with Gregory seems will be missing? 

Which RCA will go out of their way to make sure his needs are being met? Who will make sure the necessary supplies are stocked in his room? Who will really get to know Gregory and support him? Who will be there for him especially on the days Manny and I cannot be there?

In addition, a continuing ”pet peeve” of mine is that I am providing Manny who, not only is a great help to Gregory as well as so many other residents, he takes on many of the responsibilities usually assigned by the RCAs including feeding, shaving, brushing teeth, transporting, hydrating, applying and lotion. He attends him in supervision, etc. Hospice now is giving Gregory his baths which gives back more to the RCAs. I am with Gregory almost very day which makes the RCAs job easier again. Periodically, including this time, I bring up "What 'pay back' is Gregory getting?"

I expressed these concerns at the quarterly Care Conference and believe my concerns were heard. Already the Nurse Director has been working on the situation and she will continue to do so and get back to me as soon as a decision is made as to who Gregory's new RCA will be during the day.

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.

Lie Down and Die or Hunker Down and Keep Living

"Lie Down and Die or Hunker Down and Keep Living." That is a saying that Gregory and I adopted early after his diagnosis with Alzheimer's some 11 years ago. Now it is time for me to renew that saying for myself as Gregory no longer has this fight. He is content. I hope he can continue to be so.

When I am with him at Lieberman, if I think about the man Gregory used to be as recently as last Christmas, or if I think about Gregory while I am at home and compare that to the man he used to be as recently as last Christmas, or if I spend too much time thinking about what our relationship had been like over most of the last 39 years, or if I by chance catch a photograph of our earlier days; I might as well stop writing this post and sob and scream and dash my body against the walls and  throw myself into bed depressed not to emerge for days or weeks, if ever.

Maybe some day I will be able to think more about Gregory and my past, and revel in the memories of our beautiful time together. But for now I need to focus on the here and now, as Gregory seems to be able to do, and enjoy our beautiful time together now, today, here and now.

It is not easy seeing him in his wheel chair: immobile, unable to toilet himself, unable to feed himself, now and then tremoring, needing to concentrate on how to get the water through a straw or bite a piece of sandwich, not being able to use words to share his thoughts, crying unexpectedly, so focused on some far off object or through that even I cannot get a response; all this surrounded by 70 to 100 year olds who are worst off than Gregory and sometimes in the midst of their cries and shouts and anger and confusion and shit smells and food messes clinging to the napkin tucked around their neck.

But what I am able to see, so this is what I focus on, is a community in which Gregory feels safe, loved, taken care of, provided for, having limited wants and needs. Gregory is past the point of clinging to fears, unnecessary expectations, the past or future, holding on to the need for "things."

What I am able to experience is how he brightens up when he sees me or a visitor, how he is able to smile and tell me he loves me, how he tells Pat, "You are beautiful." or Cheryl, "Oh, it is you!" or Jan, "Oh wonderful." or me when at dinner I told him I needed to talk to the Social Worker and that I would be right back, "Oh that would be lovely."

I look forward to his hugs and with some delay in sound his large smacks of a kiss on my cheek. We can hold hands for hours and watch "South Pacific" over and over again on the TV in his room. I can offer him a piece of chocolate or a cookie and he is delighted. I can take my leave telling him I will see him tomorrow and he will acknowledge with an, "OK."

For now this is all I need and I relish each moment because I know that even these minimal interactions will disappear. But what I can hold onto is our love for each other, maybe at a later date our memories, and to the knowledge that all of his needs are being beautifully taken care of by a huge team of people who care. While Gregory's illness has gotten worse, his situation has gotten better!

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.

A Difficult Episode

After my therapy session, I went to a neighbrohoood restaurant for a sandwich. Alaksh called me to ask me to come home because G was crying uncontrollably and he couldn't settle him down.

Luckily I was at "Pret" which is just downstairs from the condo and got back in 5 minutes. G thought he had done something terrible, was crying and saying in bits and pieces "You are going to hate me, no wait everyone, they were all there. He was very upset but naturally couldn't tell me what it was really about. 

So I got him to lie down in bed, I lay next to him and assured him: "Everything is OK. Everything is good. Everything is calm. Everything is happy. Everybody loves you." etc etc etc adding everything I could think of that was loving, peaceful, happy, and good. 

Both cats came to be with us and helped G get centered again. Gregory dozed for a while and then lie there thinking while I was working at my computer.

I chatted with Alaksh to see what was going on before the episode to see if we could figure out the triggering event but nothing out of the usual had happened. Often things are not what they seem so without needing any logic behind the cause of the episode, the bottom line is that Gregory was upset, had a tough time calming down, finally did calm down.

Moments come and moments pass. I have learned to get over the in-between. Meanwhile I am wondering about the accuracy of my use of lie, lay or should it have been otherwise?

A Play in A Series of Poems

I have written many pieces of poetry chronicling the path which I have traveled with Gregory, my life partner of over 35 years, who was diagnosed with young onset Alzheimer's Disease some ten years ago when he was fifty five years old. For the most part, the feedback on my work has been favorable. 

For a next project, wouldn't it be interesting to try to write a screen play in which the audience would experience what a person with Alzheimer's goes through and what those who love him endure? It probably wouldn't be hard for me to write the screen play because I have so much material from which to draw.

The question, however, is who would want to watch it? Who would want to sit through some 90 minutes with one intermission of heaviness, sadness, frustration, confusion, depression and tears even if laced with love, compassion, insight, and humor?

Last Night After Today

Gregory and I discussed the difficult day we/he had. He was calm again and I was able to say, "Well, tomorrow we'll begin again." I found myself thinking not the sad or difficult or hopeless thoughts that often follow bad days but rather ... "I'll try to do better again tomorrow." This was a sign of growth in my thinking. Then today this came across from Abraham: 

Just Checking In

Hi. It's been a while since I've posted so I guess you can assume that for now (how ever long that may last) things have settled down. That either means that Gregory's changes and lapses have slowed down or he has not been challenged or confused recently or it means that I have reached a new level of coping, supporting, anticipating, covering, running interference, etc.


Oh, did I mention that that last Tuesday: 1) He didn't remember how to use his key to get into condo ... but did have sense to get help from management office. 2) Because the ususal “lunch meat” in the refrigerator ran out I left him a tin of tuna for lunch but the change caused him to be totally confused about how to make lunch ... but did have sense to go out to a restaurant. and 3) He forgot how to run DVD again even though it is “one button on” and “the same button off." Then he knew how to turn off the DVD after the movie with the “one button” ... but when I complimented him, he thought he had done it all wrong and apologized.


But you know what, I remained even and that helped both of us.

Unbelievable

Amazing how the human brain works.

Amazing how the human brain doesn't work.

Gregory was beginning to get his breakfast together. I was awake so I offered to make him oatmeal. He liked the idea. I said, "Get everything else ready for your breakfast then I will make the oatmeal. Besides cereal he makes some kind of protein in the way of tinned fish or sausage, fresh fruit, and hot tea. Pretty healthy huh?

To get to the point, my offer to make him oatmeal (to be his cereal for the day,) totally got him off track. He lost all the details of what to do to make his breakfast. Forgot what to do before I made the cereal. Couldn't think about the protein, couldn't figure out the fresh fruit, put the box of tea back in the cabinet, and then stood there, confused.

I repeated, "Do everything you usually do for breakfast, but I'll do the cereal."

Blank.

I took him over to the cabinet where the pictured sign is posted that shows what he needs to do each day for breakfast.

Blank.

I said, "Tell you what. Forget what I said. Make your own breakfast." I put away all the makings for oatmeal. "I'm sorry I confused you. Make your own breakfast. I'll do oatmeal for both of us on another day."

"OK," he replied, "that would probably be better."

At this point in my writing I just asked him if he was back on track and he answered, "Yea."

Meanwhile I am amazed at what does (or doesn't) go on in his brain.

It Becomes Easier as it Becomes Harder

I may have written about this before but I think it is worth my working through again.

It seems that the more Alzheimer's takes away from Gregory the easier it is for me to cope. I become more aware that he is unable to deal with certain situations: language is usually a problem now so I get used to it, he is confused more often than not so confusion is expected, disruptions in his routine always affect his ability to function so I mobilize and help him through the change, when he begins to get frustrated his level of frustration escalates and causes his abilities to decline so I do not give him tasks that would frustrate him, he is able to help less so I do more.

Gregory continues to be happy, content, and to enjoy his life. The difficulties come when I can't cope, get frustrated or angry, loose my temper, get short with him, forget that he is not the person he used to be when we met thirty five years ago. And since I am more aware of his inabilities, I expect less, ask less, do more and feel better. Sounds strange doesn't it?

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

Reality Test

Most often I try to anticipate Gregory's needs, especially as his language and communication abilities continue to disintegrate. Most often I am able to figure out what he wants to say or tell me. As I have written before, its those times that I cannot anticipate or guess that make for difficult interactions and therefore are emotionally heavy situations for both Gregory and me.

Another area of difficulty is Gregory's ability to make connections and associations. I will ask him to get me a new kitchen towel and he will not recognize word "towel." This has been happening more and more as his grasp of the meaning of any particular word continues to fail.

For example, as he is trying to ask me about where his gloves are, he will wiggle his hands but when I ask, "Are you looking for your gloves?" he will reply, "No." Even though it is his gloves he is looking for. Is it the disconnect of the word "No" or the word "Gloves." Sometimes that is clear to me and other times it is not.

Most difficult of all is when I feel that I have to "wait it out" and not help at all. Sometimes I feel the need to do a reality test to see exactly how much Gregory is going to be able to do. Last night I asked him, as I usually do, to set the table for dinner. He got the place mats and napkins done but forgot the silverware. He moved on to fill the water glasses.

He usually stands in front of the open refrigerator thinking about "what's missing." Then he will realize and shut the refrigerator, go to the cabinet, get out two glasses, and put them on the counter. Sometimes I will just say the word "glasses" and he will click in and proceed.

This time he stood in front of the open refrigerator for a long time. He looked over at where the empty glasses usually sit while waiting to be filled but it didn't help this time. Then he closed the refrigerator and opened the freezer. He pulled out the ice drawer and scooped out a handful of ice, turned towards the usual "where the glasses are waiting place" and stood, confused, hands cold with ice, not knowing what to do.

He looked at me several times and I soothingly replied, "I'm just being patient." Sometimes I will say, "I am just giving you space." This is to let him know that I am not upset or angry that he is confused.

Next he returned the ice to the drawer, closed it, and closed the freezer. He turned to me and said, "OK I give." I went to the cabinet hand handed him two glasses. He successfully took over from there. But what an ordeal. And watching the look on his face as he becomes increasingly confused (sometimes embarrassed, sometimes angry, sometimes just confused) is very painful for me.

Reality checks are no fun for me to suffer quietly and probably not easy for Gregory, but they are necessary so I can keep tabs on what he can do and what he cannot do with greater or lesser frequency. When it looks like the skill is really gone, I will not ask him to help with the skill or I will give a lot more support up front. For example, I am about to start handing him two glasses every time I ask him to get our dinner waters. Soon I'll have to put out the place mats, napkins, and silverware and hope he can figure out where it goes. Time will AND DOES tell!

If I haven't already given you an idea...

If I haven't already given you an idea of what it is like to live with someone afflicted by Alzheimer's here is yet another story. (I'm being light with this opening. Don't take offense. It cheers me up and makes me feel like I am "joking" with you.)


After dinner I retired to my computer. Gregory was cleaning up, there wasn't much for him to do as I try to keep up with washing and putting things away as I go along in my cooking. He called me in a short while later saying, "Michael, something is wrong." I stopped what I was doing and went into the kitchen. I have learned not to get too excited or too upset until I know for sure that something IS wrong."

He had finished all the cleanup and was wiping down the sinks. One is a regular sink and the other is a smaller prep sink that houses the garbage disposal. Each drain in both of the sinks is covered with a stainless ringed, rubber holed basket that keeps the garbage from going down the regular drain and from going down the garbage disposal drain until you are ready.

Both sinks were fairly clean, the stainless baskets were on the counter to the left of the sinks. He pointed at the garbage disposal drain opening and said, "Something is wrong with this." I asked what he meant. "I don't know, something is wrong with this." I asked him to try to tell me what he thought the problem was as I didn't see anything wrong. He poked his finger at the disposal hole and said, "This." "This." "This. I am used to it up to here." and he placed his hand at sink level.

I took the stainless basket, put it in place over the drain and asked, "Does this look better."

"Yes, I am home now. Thanks."

So my thinking goes like this: Is this what he really meant? Did I help him figure out what was troubling him or did my inquiries only confuse him more? Is it because he did not see the stainless basket? Is it because the hole in the disposal is dark and he couldn't tell what was going on down there? Is it because he forgot what the stainless baskets are used for? Will he remember not to put his finger or hand into the disposal while it is running? Will he throw the baskets in the garbage like he has done previously? Will he know how to clean up after dinner tomorrow or will I step in to help. Should we do more things like this together so I can keep an eye out for problems? etc etc etc

To be continued... (I am sure.)

Milestone

I have passed over the next milestone.
Not good nor bad but a relief.
For some reason I am no longer angry when he does
Things that seem so "stupid."

I have passed over the next milestone.
Not good nor bad but a relief.
For some reason I really understand now
That he can't help it, he isn't able.

I have passed over the next milestone.
Not good nor bad but a relief.
Really understand that he can no longer
Make the connections that are needed.

I have passed over the next miestone.
Not good nor bad but a relief.
I seem better able to support him
And to be respectful, loving, and kind.

I have passed over the next milestone.
Not good nor bad but a relief.
He has passed over the next milestone and remains content
and that is good and that is a relief.

Coming Faster

This morning's conversation so far (48 minutes and counting.)

I asked G to bring his computer into my office so I could clean the screen. He did so. As I sprayed the screen and proceeded to wipe it clean, I explained that I had laid the screen flat so the cleaning solution wouldn't run into the computer.
G: "Could you do that for me?"
I look at him inquiringly.
G: "Oh, you are."

He came into the room and asked "What is today about?"
"Did you check the calendar on your computer to see?" I asked.
"No but I will." he replied.
A few minutes later I asked him what he had found out about today.
He thought for a few minutes and replied, "There was a long line of items but nothing I could tell."
We went to look at his computer together. He had been looking at his e-mail.
I showed him how to get to the calendar (again) and we saw together that there is nothing on the schedule for today.

He was pondering the medicine chest.
"Toothbrush?" I answered unasked.
Right. More pondering.
"Toothpaste?" I answered unasked.
Right. Brushing began.

He just tore a page off his "Day-At-A-Glance" calendar and as he was tossing the old page into the garbage commented with amazement, "It's still January?"

"It's 17 out. How should I dress?"

(Yesterday on commenting on the cold and asking a neighbor on the elevator what it was like outside, she answered, "Actually it's great. Sun is shining and its 80 degrees. I wish.

"Wow," G commented, "It has gotten warmer.")

The Semblance of a Tape Measure

I don't know how to measure this. Let it suffice to say, "He is getting worse." But that does not begin to measure the change. Lets just say, "He is getting worse. Has has been getting worse. He will continue to get worse."


When you live with a person who has a Dementia, you slowly acclimate as they slowly deteriorate. This makes it even harder to measure. The changes are slow, moderate, and sometimes fast. Sometimes the changes will work in reverse but it is more like they "pop up" here and there, now and then, but never consistantly. 


This causes difficulty measuring the progress of the Dementia.


Language continues to fail. Most of the time he will begin to say something but after the set up he cannot continue. More and more, if he can't get it and if it isn't obvious to me, we just let it go and don't even try to figure it out. 


This causes not only are difficulty measuring the progress but also difficulty predicting the progress.


Cognition continues to fail. He gets confused over simple operations like buttering his toast or deciding where to put the butter in the first place. He emptied the sink strainer then threw it away with the garbage. He was about to go for a walk and I discovered that he did not have his keys. Then I checked and while he had his cell phone holster on his belt, it was empty. His wallet was still in the drawer. Yet his coat, scarf, gloves, and hat were on and he was ready to leave.


I could not even discuss the messed up situation with him because he could not follow and said something like, "I was going to do that next." However, he didn't really know that he did not have his keys on or his cell phone in. 


Often now, when I ask if he has his cell phone, he does not know where to look for it. He will search one pocket then the other not remembering that the cell phone should be in the holster on his belt. The look on his face tells me that without seeing the object, he may not even understand what the words "CELL PHONE" mean.


This causes not only  difficulty measuring progress but also difficulty predicting the progress and finally difficulty even understanding what form the progress is taking.


Semblance is the word that comes to mind. There is a semblance of order in our life, a semblance of routine, a semblance of a semblance of a life. 


semblance |ˈsembləns|. noun. the outward appearance or apparent form of something, esp. when the reality is different : she tried to force her thoughts back into some semblance of order.

Both Gregory and I "try to force our thoughts back into some semblance of order" all the time. Some days we do well, most days we do not.

Just a Flash

Last night I had just a flash of how sad and lonely I really am. I was able to swallow it as I fell asleep knowing today I would feel better and I do. We had been watching "The Secret Life of Bees" (DVD) which is quite a powerful movie dealing with childhood, parents, trauma, racial tensions in the 60's, life, love, and death. Apparently the movie affected Gregory quite a bit but it didn't show until he had a "meltdown" when asked, "Why didn't you take my water?" It is his job to fill the water glasses we use in the TV room and put them by our side tables for bedtime. He had refilled his but left mine behind. It was just a question. He got all upset, flustered, couldn't express himself and for some reason blamed me and waved me away.


I took it personally when it was really the big "A" speaking. None-the-less I took it personally. I finished closing up the house and sat, for a while, in the dark living room. I felt myself shutdown as I realized that in spite of our wonderful family, friends, and acquaintances; I feel so alone. Alone as in the end, when you die, you must do it alone. The best I could do was feel numb.


More and more, my conversations, mundane or intellectual, are with myself. Most of the time I keep my observational comments to myself because Gregory will not understand, will have missed the item my observation was based on, will reply in relation to what he was thinking not what I was observing, or I will have to repeat because he wasn't focused and ready to listen.  Again ... and again. 


I continue to take the risk of having conversations and asking him questions. I still ask him for help, to do something for me. Very often it backfires and I have to explain again, remind when he forgets to follow through, correct his misunderstanding, give step by step directions, or take over myself. 


Very often after my reminding or correcting he will reply, "I knew that." When I try step by step directions, he is aware enough that he waits for the rest of the information but when given, gets confused and cannot follow more than one step at a time. When I have to take over, no matter how nicely I do it, it is awkward for both of us.


The alternative is to ask, say, and expect nothing and I cannot believe that is good for Gregory's self confidence. But I have to remind myself that if I believe this is good for him and continue to hold expectations, no matter how minimal, I must also be ready for and risk his meltdown and/or my shutdown. 


I think that I have created a fantasy world in which I feel like I am in a relationship that resembles normal. Every now and then the vail parts and I get a glimpse of reality. It looks much like Hell. I hate to be so hard but I think I might be right about this, dear.

Negotiating Dignity

Negotiating Dignity. By Jan Yourist. Click this link to go to a thoughtful, helpful yet painful BLOG on helping one's parents age with dignity.

Gregory is not yet to the point in his Alzheimer's progress that he needs help with his physical needs but I have often thought about the time when he will. As Jan poses at the end of her BLOG, it is even more difficult to have to think of the eventuality of not only needing support with my own physical needs but how that will impact his physical needs being met. Perhaps I should get more involved than I have been in investigating what is out there for when the time comes.

In our case and at this point in time, I am dealing mainly with helping Gregory process, problem solve, make decisions, use language, maintain his heath. In other words, to negotiate his day to day life with dignity. I try to ensure that his life is safe, happy, and dignified emotionally.

This is not always easy especially when I sometimes have to play guessing games to figure out what his needs are. Sometimes he is not sure what his own needs are let alone be able to express them. Other times I am not at my best in dealing with Gregory when my own emotional state is out of balance.

At least both Gregory and I have so far lived our lives with dignity when it comes to family, friends, neighbors, colleagues, business associates, fellow (wo)mankind. Hopefully that should make it easier to live with dignity for ourselves as needs increase.