Mixed Emotions

Today I was overjoyed.

Today I was over saddened.

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

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

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

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

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

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

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

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

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

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

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

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

A New Language

As you know, Gregory has difficulties with language retrieval as well as generation not to mention connections between words and their meanings and/or associations. When he is focused on an item, no words or pointing can distract him from that focus. So if you say "Give me the fork," often he can. But if he is looking at or thinking about a glass, you can "fork" until you are blue in the face and you'll only get "glassed!" Got it?

Meanwhile, I realized recently that we have been creating a new language that we use more successfully. When he gets undressed at night, I stand at the closet to collect his clothes to be hung up for the next day. Often he puts the item of clothing being taken off on the bed ... or on the bench ... or on the floor. When I say "Hammy" (a verbally joined together combination of "Hand it to me," he seems to understand and hands me the item of clothing.

He will take off most of his clothing but then get distracted or not realize that he still has on his underpants, undershirt, and/or sox. So I say, "Take off more" followed by "Hamme" and he takes off the next item of clothing and gives it to me. I continue this until he is standing there nude. Then I hand him his night clothes and he usually knows what to do with them.

Often he takes the night clothes into the bathroom because it is warmer in there, puts on the top or bottom, depending, and comes out of the bathroom not realizing or knowing that he still has the bottom or top, depending, to put on. I point and say "You stopped!" and he gets it.

Why does this new language work? I do not know, but I will be more aware of it and see how many new words I can add to make our life a little easier.

Painting

Gregory continues to paint almost every Tuesday with Nancy Rosen at her studio in Chicago. He has completed close to 150 paintings (of various sizes) in a little under two years.

I posted the following painting on my Facebook page. It is one of G and my current favorites.

Our friend JY commented: It's like the sunlight filtering through a dense forest. Wow!

I replied: As you know, who knows what if anything the painting symbolizes. I think it is mostly abstraction and enjoying use of color that is rising from deep within Gregory but not necessarily with any connections or associations or at least ones that he could express. I know he did not start out thinking, "Oh I think I'll paint a forest" etc. He probably didn't have those thoughts anytime during the painting and maybe could only see the relationship when someone other mentioned what they saw in his work.

The whole process is, however, wonderful and amazing and I am so pleased that he enjoys the new found hobby so much and that we are fortunate enough to have Nancy Rosen (our Art Angel) support his efforts.

If you get a chance, be sure to visit Nancy's site http://www.nrosen.com  to see some of her amazing work. She is one of the most prolific artists that I know. I will advertise here for her next "Save Me From Myself Sale" which she has every December to move some product at good prices so she can create some space for next year's work!

Also, I will post a link soon so you can see Gregory's 2012-2013 work.

The Scourge of Helpfulness

There is an old story that goes: You can tell the difference between old age and Alzheimer's Disease. In old age you forget where you put your glasses. In Alzheimer's you forget you wear glasses!

This morning Gregory came into the bedroom. Something is wrong. He had been trying to take his morning pills in the kitchen but his glass of water was in the bedroom. Sometimes, when I am in the kitchen with him, I remind, "Your water is in the bedroom." Sometimes this helps, other times it doesn't. Other times I walk him into the bedroom and point at the water. Sometimes this helps, other times it doesn't. Still other times I take him over to the nightstand and hand him his water. Still yet other times I bring the water into the kitchen to avoid all this confusion. Either way, he does not associate having a glass of water with part of the process of taking his pills. At least not all of the time and now-a-days less and less.

Next he was at his table in the living room (which he cannot associate by name as in "Please go put this on your table.") fumbling with his reading glasses. He put them on his glass case, then next to his glass case, then under his glass case. I helped, "Put them IN your glass case." Didn't help so I backed out. This upset him so I explained, "No problem ... I tried to help but it didn't help so I backed off ... No harm done ... No babies are dying ... I love you ... That is all that matters." To which he replied, "OK."

When he sat down to read the newspaper, I realized the problem. He had some vague idea that he needed his reading glasses to read the newspaper but didn't connect the pieces, i.e. get glasses, sit down in front of your newspaper, put glasses on, read the newspaper. Instead, after the previous short circuit, he just sat in front of the newspaper confused. Again, I tried to help. I asked, "Can you read the newspaper?" "What?" "Can you see the newspaper?" "What do you mean?" So I went over and got his glasses and handed them to him. "Yes, I was going to get my glasses," he replied. OK.

Now how to handle all of this may seem obvious to you. And what I should have said, or not said, may be what you are thinking about. And I too, in looking back, realize several different ways I could of handled this. And maybe next time I will be able to handle it differently. At least this time I didn't get angry, or rude, or short, or impatient. But also I wasn't helpful. I also realize that no matter what I do, being helpful most often backfires on me.

And don't judge until you are the one trying to figure out how to go about ANYTHING with a person who is fairly advanced in Alzheimer's.

A final example. This morning he got his undershirt and underpants on correctly but had his sweatshirt on backwards. He realized this and corrected it. Next he got his sweatpants on backwards and corrected it three times only to have them on backward again. I helped, "You keep putting them on the same way. Try turning them around." So he held the pants up in front of himself and turned around. Not the pants but rather his body. Then holding the pants in front of him (oriented incorrectly) he walked forward and then backward and did this two more times. I got up and using his hands, slowly helped him to turn the pants around the correct way, in my mind trying to demonstrate the process. "Now try them on I suggested." He did, they were on the right way, but I don't think he really understood what had happened.

Somehow, I keep going.

Sunday September 15th: So Far A Day Much Like Any Other Day

I would say that in normal conversation, Gregory is missing approximately 80-90% of his language word associations. "Close the DOOR." "Turn off the LIGHT." etc no longer work. "Your newspaper is on your TABLE." ... "on your TABLE." He headed to the front door.

Memory is another thing.

He asked if the pile of clothing on the bench (where I put his underwear and sweats every morning) were mine or his. When I explained that they were his clothes, in the same place every morning, he began getting dressed.

He proceeded to forget the underpants. On being prompted to put them on first, he did not know how to get into them ... beginning with backwards ... followed quickly by both legs in one hole. With help, he figured out what to do.

Sweat pants went on backwards. With help, he figured out what to do.

For the first in a long time he got on his undershirt and sweat shirt correctly the first time.

If he had to name any of these foreign objects, he would not be able to.

He is currently reading his NEWSPAPER at his TABLE wearing his UNDERPANTS, UNDERSHIRT, SWEATPANTS, and SWEATSHIRT.

Lord (if one exists) only knows the comprehension level of his newspaper reading. He cannot answer any questions about it and cannot share any of what he read. Now and then he will bring the paper to me to show me a picture.

I am currently writing this BLOG, flumoxed although calm. The cats are chasing each other around the condo. Our day has begun.

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.

Neurons

Now think about what it must be like when those connections and associations begin to break down. Language no longer works, thoughts exist but expressing them is not possible, memories continue but you can no longer access them, routine is no longer possible. Life goes on but you are slowly not recognizing most of it any more.

Being Aware

I have spent quite a lot of energy trying to explain what it is like to live with and love someone with Alzheimer's. I struggle and struggle to understand it and therefore the subject shows up a lot in my writing. Peter, my therapist says it cannot be explained, and although I know he is right, I keep trying.

I can give examples, of which there have been many in these blogs, but I still cannot put my finger on exactly what I am experiencing during these situations gone awry. Here is one more example. Gregory was sitting in the car and had put a carry bag on the floor between his feet. When we arrived at our destination, he unfastened his seat belt, opened the door, but then had some difficulty getting out of the car because of the carry bag.

He interpreted the difficulty to not having unfastened his seat belt so he began fumbling around to release it. He did find a belt, the one holding up his pants, so he began to take that off. I stopped him, took the bag from between his feet, and instructed "Now you can get out." At this stage of the disease, I don't try to explain to him what went wrong (and maybe I would be better off if I didn't try to explain to myself.)

While spending some time trying to answer this question once more with friend and Alzheimer's researcher Aaron and his wife Brady, I think I came closest to understanding why I am having such a hard time trying to explain what experiencing the disease from the caregiver side is like, what I go through in dealing with some of the "crazy" behaviors and interactions that Alzheimer's brings to our daily life.

What I finally understood is that one can only truly understand something that one can experience. Since I do not have Alzheimer's, I will never truly understand it because I cannot truly experience what it is like to have the disease. I can only experience it from the outside looking in. Also, the nature of Alzheimer's is that it invents itself as it goes along, not based on any rhyme or reason so how can one have a rational, reasonable grip on understanding it.

This nature of thinking and being and feeling takes place through the creation of a millions and millions of interconnected thoughts and experiences which when combined produce language, memory, behaviors, personality, emotions, etc. How any one individual combines those interconnected pieces will be different from the next so that pushes the possible combinations into infinity. One should marvel that communication and interaction between members of the species takes place at all.

So when the brain begins to collect plaque, when synapses get tangled, when associations and connections begin to short circuit or disappear, when the complex web that is thinking begins to misfire, when the many parts of what it took to learn have gone missing, when the integration of a person's personality begins to disintegrate ...  there is no way for the outsider (i.e. you or me) to really experience and therefore understand the manifestation of the disease.

With that said, I will probably continue to work at being as articulate and even lyrical as possible in my blog descriptions as I continue to search for understanding. That search will last long after Gregory is gone. Unless I leave first and then maybe I will be at peace in my search.

Lotion Logistics

This morning he was rubbing his chin as though it was irritated from shaving. "Did you put lotion on your face after shaving?" I asked.

Sure enough he hadn't, so he got out the lotion, figured out how to take off the cap, poured a quarter size amount on his hand, spread it on both hands, and proceeded to work the lotion well into his hair.

When I reviewed this with him, he attempted again.

He poured a quarter size amount of lotion on his hand, spread it on both hands, and continued to work it well into his hands, front and back, and each finger until the lotion was completely absorbed.

When I reviewed this next phase with him, he got a little frustrated and confused. So I tried to explain, "The lotion is for your face because it is irritated after shaving."

As I said this I put my hands to my face by way of demonstration while at the same time thinking that I was probably only adding to his confusion by the fact that my face is bearded and his is not.

By now I am thinking that he probably doesn't remember what it is we are trying to do so I started over.

Why don't you put some lotion on your face. He again picked up the lotion bottle, figured again out how to take off the cap, poured a quarter size amount on his hand, spread it on both hands, looked up at me for approval, received it, and then put it on his face and rubbed it in.

Mission accomplished (but not easily and not without a lot of patience - probably on both of our parts.)

Progress or Progress? Mine or Alzheimer's?

Today I was able to automatically say, "If you don't know what to do with the hanger, leave it on the bench. I'll take care of it." I automatically did so in an even, loving manner.

Lately Gregory has been getting "middle age spread." Interesting that he took until 64 to begin. So a lot of his clothes, especially pants, no longer fit. Actually a while back I had though about getting rid of most of his clothes so his choices would be fewer. He is taking care of that himself now.

He will have two pair of kaki's, two pair blue jeans, and two pair of black jeans. One to wear, one in the laundry. One black belt to go with his black shoes, one brown belt to go with his brown belt, one pair of sandals, one pair of gym shoes. Black sox and white sox.  We talked about that today and he seems OK with the changes. He is SO easy going. Amazing how we are learning, through this Alzheimer's Journey, how much is enough.

Now extinct from his associative vocabulary: underpants, undershirt. He recognizes "Blacks" to refer to his morning before getting dressed clothes and "Sleeps" to refer to his shorts and "T" shirt for sleeping. He gets very confused between his WHITE night sleeps shirt and his WHITE daytime undershirt. I am working on that one. Maybe different colors?

Pill Box

My friend Pat send a humorous e-mail that read: 


"Hi. Have you ever verified what day of the week it is by the compartment on your vitamin box?

 P

I just replied with something like: "Sounds like a fun series of silly questions!"


Actually didn't want to go into detail for her (eventually did) but the "daily pillbox" has a sad connotation for me. 


In the beginning, Gregory used to take his pills, then he started using a pillbox and would set four of them up at the beginning of the month (four for AM and four for PM.)


Eventually I had to make a list of what went into the AM's and what went into the PM's.


Then I realized, what he was putting in the pillboxes was not consistent so I took over filling them at the beginning of each month. 


Soon, every morning and every evening he was confirming, "Is today the 'W'?" You can imagine how confusing the "T" and "S" were. After a while of this I figured out that the association with "W" and "Wednesday" (and all the others as well) was gone.


The pillbox, if you can imagine, no longer had a reference or association or connection or purpose in relation to what day of the week it happened to be.


Now we have two bowls. I empty the night's pills out of the pillbox into the small bowl and put it next to the water on his nightstand. I put the next day's pills in another small bowl and put that bowl out by his breakfast area.


For now, at least, the bowls get back to the bathroom to be used the next day. I suspect at some point I will have to begin searching for the bowls.

BECAUSE

Today, surreptitiously observing, I read a cookbook while Gregory was making his breakfast. He was trying to use the "map" I created to help him with the task. It was not a success. On and off he has been able and not able to make his own breakfast. Most often it was 60-75% correct, me helping with the rest. Several times I have decided that it was time for me to take over making his breakfast BECAUSE it was easier to just do it for him compared to trying to explain what he needed to do. Most often the explanations didn't work so I did what needed to be done. Several times without saying anything I let him try again and several times did so BECAUSE he asked to try again.


Here is the detail of why I have once again decided that I should make his breakfast. It is somewhat of a complicated job but BECAUSE he likes his breakfast, "throwing some toast" at him would never do. BECAUSE he cannot accomplish the "routine" it is now one more thing I have added to my load. 


Maybe after watching him this time I am ready to accept this next responsibility. I told him that maybe I should take over making his breakfast BECAUSE in watching I noticed that he was having a lot of difficulty and that it was painful for me to watch his suffering through the process. He agreed and said, "Yes maybe it is time." This is the first time that he has agreed with such commitment.


THE DETAIL: Tea
He got out the loose tea but didn't know what to do with it BECAUSE there was no tea ball. He figured out what was wrong, got the tea ball and filled it with the loose tea. It still didn't seem quite right to him BECAUSE he had forgotten to put the usual placemat on his tray. He was still confused about the tea BECAUSE what he was missing was a mug in which to put the tea ball. I gently suggested that he needed a mug for the tea. 


THE DETAIL: Cereal
He got a mug and cereal bowl out of the cabinet and put them on the tray. The tea ball never got into the mug BECAUSE he was distracted when he next got a box of cereal from the cabinet and after studying it for a while, instead of pouring a portion into the bowl, he scooped with his hands.


THE DETAIL: Fruit
He got the cantaloup out of the refrigerator, cut three pieces, cleaned the seeds, and sliced the melon into his cereal. No help need here.


THE DETAIL: Bran Buds
Next he got out the plastic box filled with Bran Buds. He opened the box, handled the scoop, looked at the box, handled the scoop. Tried to scoop the box lid and finally put the box down BECAUSE it wasn't working. Next he noticed the label (which was turned away from him) on the box and commented to himself, "Oh that makes it easier." Maybe he didn't realize that he did in effect have the bran buds in hand? So he picked up the box, put the scoop back into the box, and closed the lid BECAUSE he thought he had added some to his cereal (which he hadn't.) I intervened.


THE DETAIL: Turkey Sausage
Next task was to microwave the turkey sausage. He remembered to get a plate this time, a paper towel, and a package of sausage out of the freezer. He unwrapped the sausage and placed them on the plate. 


It wasn't quite right BECAUSE he had put the paper towel down on the tray and by now had forgotten that it was supposed to be on the plate with the sausage. I mentioned the paper towel, he realized  that it was missing, found it, folded it in half and placed the plate into the fold BECAUSE he really didn't understand the necessary order. 


I helped him place the sausage between the folds of the paper towel and then put the paper towel on the plate. He asked, "How long?" BECAUSE after countless years of making his own breakfast sausage he didn't remember. "Two minutes." He was able to follow through. 


When the sausage had cooked, he took the plate out of the microwave (which is almost but not quite too hot to handle.) He danced around with the hot plate and then, BECAUSE he finally noticed that the placemat was not on the tray, didn't know what to do with the plate. He asked my help but I just watched. After a while of "dancing" he finally placed the plate on the counter. 


THE DETAIL: Putting It All Together
He just stood there not knowing what to do next. I got up and verbalized what I was doing, BECAUSE somehow it seems to defuse the situation, as I fetched the placemat and put it on the try, filled the electric tea kettle (which he had totally overlooked) and turned it on, put his cereal bowl and mug in place, put the tea ball into the mug, put the sausage plate on the tray, got him a spoon and napkin and finally filled his mug with boiling water and replaced the kettle. End of story, beginning of breakfast.


The detail is important to share with you BECAUSE it shows how complicated the task is for Gregory while maybe not so much to you or I, how easily it is for him to get distracted, and how difficult it is for him to follow through with multiple-step processes.  

When Will It End?

I hate my life right about now. I am living with tears. I am lonely. I am confused. I am frightened. I am confused. Do I feel better now that I have gotten that out? No.

I have decided to take over making his breakfast completely every morning for a while (maybe forever.) I nicely told him that he would have to stay in bed until I was ready to help, that unfortunately this is where we are with our life as of now, and that it means more loss of independence for him.


Seeing that he was upset, I told him that I need to talk about it with him and that I know it mades him feel bad and that eventually I  will be able to avoid discussing it. I just don't feel comfortable making unilateral decisions without telling him about it. I am sure that one day soon I will be able to do that as well.


He couldn't find the muffins in the refrigerator this morning, didn't know how to use the butter spray, forgot to warm the muffin up in the microwave and then wondered why it was cold. Instead of just sitting at his place at the counter, he was trying (again) to perch himself on the edge of the stool in a very awkward position in front of the drawers with no knee room because that is where he put down his muffin.


Until now he has been making his own breakfast but only at 70-80% success since returning from Mexico. Then I have to intervene or explain with explanations that are not understood. Taking over completely will be easier ... at least for me.


I will also begin to lay out his clothes every day because he not only cannot do this easily but also cannot judge what to wear based on the weather. Yesterday it was 90 out and he said he wanted a light shirt. I put a short sleeved polo out for him. As we were about to leave, he had on a long sleeve shirt and I questioned him about the short sleeve one. He said this was the one he wanted. I come to find out that he had on both shirts, thinking the Polo was an undershirt, however, when I named the "undershirt" he is not able to make an association with the item.

Until now he has been getting dressed on his own but only at 70-80% success. Then I have to intervene, or explain with explanations that are not understood. Taking over completely will be easier ... at least for me.

I have been handing him his night time sleepwear and laying out his morning sweats. Easier for him and for me.

I have decided to take over fully for breakfast and getting dressed because these skills come and go and get scrambled so frequently that it must be proof that he can no longer handle them. I get frustrated with giving instructions that cannot be followed or do no get followed or get followed incorrectly. 


In my life, I am used to telling or asking someone for something and then letting go knowing it will be done. Not so anymore with Gregory. So metaphorically, like the nurse in the old people's home, I will hand him his meds and stand there while he puts them in his mouth and swallows. Hope I do not have to start checking under his tongue to make sure he isn't spitting them out later.


Did I mention that last night at bedtime he was trying to read and again forgot that he needed his glasses.

 

Tab "A" Slot "B"

Often in a conversation with Gregory he will make "Comment A" and I will respond with "Comment B" by which time he has lost its association with "Comment A" and therefore "Comment B" is confusing to him. Frustrating to me is not only having to go though this line of thought but having no possible way to get it back on track.

A variation is my making "Comment A" and Gregory showing having understood my comment.  I move on to related "Comment B" which makes no sense to him. Again frustrating. Again, no way to straighten it out.

What Goes On In There?

I feel that I have a really good understanding of WHAT happens (or doesn't happen) in Gregory's brain that causes his outward appearances of Alzheimer's/Dementia. I have learned a lot by reading and on the Alzheimer's Association website including several on-line workshops provided there. I also have learned a lot from our neurologist and from a close family friend whose husband was diagnosed with ALZ about ten years earlier than Gregory.

What I have no grasp on is HOW at times the behaviors, actions, communications manifest themselves. I have put together the following way of describing it to those who ask. 

"At times I have absolutely no framework what-so-ever on which to hang an understanding of what took place during an interaction between Gregory and myself. Therefore I have no way of figuring out how to react or reply. This causes my confusion to compound his confusion and at times causes my response to be less than graciously caring. The caring is always there, but sometimes it is not as gracious as I would like it to be." 

Putting my feelings into words helps me better deal with the reality of any particular situation/or interaction and helps improve the response to any particular situation/interaction. Sometimes blinking and shaking my head in amazement helps me get through one of those types of interactions.

Skip a Beat

Gregory and I were sitting out on the balcony after lunch. It was quiet and peaceful. Just below is the roof top garden and terrace. Flowers, trees, bushes, grass, and lawn furniture. No one was using the garden or terrace just then and it was pleasant to consider it our own.

I comment, "I am glad that there isn't an outdoor pool down there with people screaming and splashing about right under our window."

"Yes," Gregory replies, "And Chuck and John's."

Naturally, the conversation confuses me. So I ask for clarification, "Chuck and John don't have a pool?"

"I know, but I miss visiting with them."

I just sat there bewildered for a moment. I am beginning to think "Foolish Me," I should have just smiled and nodded.

Gregory asks, "Are you OK?"

"Yes, it is just that you need to skip a beat before you go on to the next subject. It confuses me."

Why is it?

Why is it that I still have expectatons? Why is it that I still think he can learn? Why is it that I am surprised when he doesn't make connections? Why is it that I still ask him to do things to help me? Why is it that I still reason with him. Why is it that I still discuss things with him? Why is it that I still get angry and frustrated with him?

I guess because it is a measure of my respect for the person he was and is. Should I treat him like an idiot? Should I treat him like a child? Should I treat him as though he doesn't exist, or matter, or have emotions? I don't think I could do that.

So I just have to remind myself that when he doesn't meet my expectations, when he can't learn, when he can't make connections, when he can't help, when he can't be reasoned with ... I need to not get angry or frustrated ... just be patient and compassionate. The choice is mine.

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.

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!