Before and After

When dealing with Alzheimer's Disease, there are many before and afters. Over the last 11+ years, I know that Gregory and I have experienced many: some good, some difficult, some ugly.

The secret to success, happiness, peace of mind, etc ... I believe ... in dealing with the disease, is being able to be in the present, seeing the person with the disease as a person NOT only as the disease.

It is not easy to do, but I find that if I tuck away the sad feelings until a later date, I can enjoy the joy of the moment and express as well as feel the love that still exists so strongly between Gregory and me.

If I spend too much time thinking about the before's or after's, I loose the precious now's.

Emotions are not bad. Emotions do not have to be "out of control!" My emotions surface as a barometer of where I am currently in my life and of how I am dealing with being alive.

So I feel that emotions are not bad, they can be helpful friends if you allow them to be. I welcome them when they surface, I thank them for the messages they bring, and I sit with them awhile even though they may make me sad and cause me to cry. Better said: As I allow them to make me sad and allow them to make me cry, and that is OK.

But then I thank them again and send them on their way so I can get back to living the joys and blessings of my life, of which there are many.

Another thing I do, if I do not have time to "sit with them awhile" is thank them, send them my love, and tell them "Not now! Please leave! Come back later when I have time to sit with you!"

It usually works for me.

This post of before and after was prompted by two photographs my friend Jan Yourist texted to me as she was helping Gregory with lunch today. Manny, Gregory's helper is on a religious retreat so I asked Jan to cover for today's lunch and I will be with him later in the afternoon, for dinner. and after to watch TV.

The before and after pictured below demonstrate how joy can be found in the present.

Jan's caption for the first photograph was: "I am hungry." Gregory looks good, is finally over his cough and cold, is able to keep his neck strongly straight, is focused, and posed for Jan's iPhone. He may not look happy but Jan interpreted it as, "I am hungry." And that is a fair interpretation.

This "after" photograph shows Gregory happy, smiling, probably chatty, stomach pleasantly full with Lieberman's delicious Kosher cooking (and it is good, I taste it often!) I do not need to add a caption as the photograph speaks for itself!

In closing, I could allow myself to be sad. I could dwell on who Gregory was in the past and who he is now. I could dwell on all he has lost and all I have lost. I could think about his being at Lieberman in his new narrow environment and me being at home in my environment which continues to grow. I could think of what lies ahead for Gregory and what lies ahead for me. While who knows what really will take place and when, most likely my outlook is better than his.

But why do that when I can choose to be happy. Happy to see this lovely photograph, glad he is well taken care of, glad he beat the recent cold, happy that we have such good friends like Jan who will take an afternoon to help out, happy. I just feel happy. The sad is still there but I thank it and tell it that right now I would rather be happy and maybe some other time I will allow myself to sit a while with sad!

This post is dedicated to Jan Yourist (click here to visit her blog) for her support as well as Corinne Peterson (click to see her site), (who hates to be called my Guru but she is) who has helped me to find peace of mind during Gregory and my journey!

Parenthesis

parenthesis |pəˈrenTHəsis|noun ( pl. parentheses |-ˌsēz| ) a word, clause, or sentence inserted as an explanation or afterthought into a passage that is grammatically complete without it, in writing usually marked off by curved brackets, dashes, or commas. 

Gregory has become a parenthesis.

Several years ago, when Aaron (a doctoral candidate to whom we were introduced by our massage therapist Sarah, and whose research we became part of) got to know us, he commented that he was impressed that we still functioned as a "couple." That we were in a relationship that still functioned even though Gregory's Alzheimer's was slowly changing the face of that relationship. 

More accurately, I guess that I would say we functioned with RESPECT for each other. Even though I was "in charge," handled all of our finances, made all of our decisions, took care of all the details, etc; I tried to make sure that Gregory was part of and informed of all the things I was doing. Gregory in turn deferred to me and accepted, with faith in me, my new role.

Slowly, however, he needs to be less part of the decision making process. For example in the beginning he would decide what to order from the menu when we ate out. When he couldn't decide what to order, I began to offer suggestions off the menu. Eventually I narrowed it down to: "Do you want beef or chicken?" Now I just order for him. He is always pleased with my selections and often will reply with, "Oh goodie. This looks really good."

At this point in our relationship, I make all of the decisions in our life. I let Gregory know about activities the day before and again on the day of, but usually do not go into much detail or give too much advance notice because he only forgets or gets agitated about not being able to remember what I told him. This leads to a usually failed guessing game on my part.

I often do not ask his advice because even if he has some, he is unable to communicate it. Now-a-days it sounds more like this. Instead of "What color do you think we should paint the hall?" it is "I was thinking of paining the hall the same shade of white." He will agree. Instead of "When do you want to go visit your family?" it comes out "I think we will go to Michigan to visit your family soon." He will agree. Instead of "Do you want to go to the movies?" it is "We are going to see Batman." 

I still work hard at treating Gregory with respect but the face of it has changed. Here is something I just recently noticed. In the past, I would sign a letter, or birthday card, or e-mail: Love, Gregory and Michael. Based on social convention, the person doing the writing always puts their name last.

Then I began to sign them: Michael and Gregory. Now I have begun to sign some of them: Michael (and Gregory.) I guess I have moved to this format to show that it is a communication from me, not necessary discussed with or part of a decision with Gregory. If I know that Gregory would also send love or a greeting if he could, I leave out the parenthesis: Michael and Gregory.

Interesting. It seems that Gregory has become a parenthesis, inserted as an explanation or afterthought into a passage that is grammatically complete without it. A somewhat fitting description of what our relationship has become.

Managing our Finances

When asked for a survey, 

• What was it that happened that made you realize you needed to take over your loved one’s finances?
  
• What did you expect it would entail? What does it really entail?
  
• If you have been doing this for awhile now, what do you wish you knew then that you have learned now?

This is how I responded. 


I have found that over time I take on more and more of the responsibilities that I used to share with or which used to be done alone by my partner. This "taking over" has become a natural progression of being able to continue dealing with the twists and turns of Alzheimer's. My gradual "taking over" helps both of us feel less frustrated. One does what one has to do. Complaining and fretting doesn't help what is.

I am fortunate in having a well founded, over 35 year committed relationship with Gregory so we are "used to each other," and have build a high level of trust in our love for each other. He continues to be aware of what he is NOT able to do and looks to me for support, which I am able to give gracefully (most of the time.) I read on a web site that Circle of Care recently reviewed that if I am not able to be gracefully caring all of the time ... there is no question that at least I do care all of the time. He has been able to give up his grand piano, driving, cooking, and more with little or no fuss and I have been able to compensate. His quality of life and sense of self continues to be strong. From what I hear, this might be a miracle.

Running our daily financial affairs is no big deal. What was a big deal, especially for a same sex couple without the benefit of being legally married, was: 1) getting our trust in order, 2) getting our power of attorney for property and health care taken care of, 3) arranging for Gregory to receive Social Security Disability and Medicare at 55 when he was diagnosed with Early Onset Alzheimer's. It will become even more difficult when or if he needs to go on Medicaid. We had a wonderful elder care lawyer to help, the State of Illinois Department on Aging (it seems that most states have something like this,) and gratefully I am intelligent enough to figure our what we needed to do.

What do I wish I knew then that I know now? YOU CAN DO IT! The fear and depression can slow you down but YOU CAN DO IT! And there are people and organizations out there for the express purpose of helping you. Don't feel overwhelmed even though it is overwhelming. Take one bite of that elephant at a time, chew, digest  and before you know it that elephant will have turned into dinner. YOU CAN DO IT!

Stress Reliever

This is a retelling of the retelling of a story that my friend Jan told at dinner this evening. I think there is a lesson for Alzheimer's Caregivers here!

A woman is in the grocery store with her young daughter. The daughter is sitting the the grocery cart having a major tantrum. Flailing, screaming, crying. The mother's response is, "Now Jennifer, calm down." "Jennifer, behave." "Jennifer, get yourself under control."

A fellow shopper is watching and listening to the woman's comments. She goes up to the woman and compliments her on how well she is responding to her tantruming daughter.

"I am Jennifer," replies the woman.

Expectations Are What You Expect Them To Be

When you love someone, nothing is impossible. While I am spiritual and NOT religious, I do like the quote from 1 Corinthians 13:7 "Love bears all things, believes all things, hopes all things, endures all things."

I first suspected that Gregory was having problems long before he was aware of them. Eventually we had the doctor run a number of tests (with Gregory's permission.) When we got the verdict of Alzheimer's we were almost relieved because now we understood what he had been going through and why, as well as what we could do to get on with our life.

As Gregory lost abilities, I learned to compensate. As the rules changed, I was able to figure out what the new ones were. As it became evident that there were no rules, I learned to "roll with the punches." I knew that I had to change my behavior, because he couldn't change his.

I cannot say that I ever had expectations (advance ideas) about what caregiving would entail. I just adjusted as it was needed. I chose not to think too much about what future caregiving might bring as I would rather live for today. That does not mean I don't study up on what I might expect to happen but when it gets too depressing, I put the books down.

As we needed to accomodate we accommodated. As our roles needed to change, they changed. I am fortunate that Gregory has always been so good natured and content and calm and that he has been able to hold on to those attributes even as his abilities continued and continue to dessert him. He defers to me, he trust me, he loves me and I love him.

So my expectations are only that I will continue to grow into being the best caregiver I can be, I will make sure I take care of my own health and mental well being, and I will strive to keep Gregory safe, happy, and involved, I will make the right decisions when I need to make them.

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.

Only Two

Gregory and I had a long conversation today.

It was good for me, I am not sure how much of it he was able to follow. But my belief is still that I have two choices when things go wrong: 1) Pretend that nothing is wrong or 2) Discuss it with him.

He always chooses the later when offered the choice so I continue to discuss it with him when things go wrong. Most often the steps are too many and he cannot follow the discussion but we try anyway. If it really doesn't matter, I do pretend.

After our conversation today, Gregory said that he felt bad that his problem might mean that I can no longer be away from him to do the things I like to do.

I replied, "You know there are only two times when I feel bad about our 'situation.'

One is when I loose control and get angry or short or impatient or disrespectful and the other is when you feel bad.

We laughed.

A Recurring Theme

If you have been following this BLOG, or the events in Gregory and my life, you may have noticed that there seems to be a recurring theme: Expect Less, Love More.

As the disease continues to play havoc with Gregory's brain (I can actually picture the cells being destroyed one by one and the brain connections being snuffed out one by one) my learning curve and the progress of Gregory's Alzheimer's continues to present new, and different, and unexpected, and unfathomable experiences for me.

My goals are to do the best I can to keep him content, healthy, and safe. A sub-goal is to help his life be meaningful for him, to help him keep his dignity, to help keep him useful so he knows he is needed.

My goals might also include the same for me, especially keeping my mind and body healthy. I have to admit that while I know the importance of these personal goals about me, and while I do work at them, they do suffer.

As the changes continue to take place, sometimes at an accelerated rate, new levels difficulty in accomplishing my goals for him seem to come into play. For example last night there were several instances in which he was unable to follow very simple, one step directions.

They were based on easy to do (at least in my mind,) basic, up until now successful skills for him. One was to put cup cake papers in the cup cake tin. Another was to fill the dinner water glasses again for use at bedtime. A third was to pick up the cat's food for the evening.

Another example just happened as I was writing this BLOG. While he still seems able to us the computer to read his e-mail, see the day's news, and play an online game with Ken ... the computer and its use entails such a complex set of skills that he usually get confused and comes to me for help.

This time he was looking at the TRASH list of his e-mail, not today's e-mails. He was asking for my help but I didn't know how to help. The possibilities of why he needed help were so numerous that I didn't know where to begin. I didn't know how he ended up being in the TRASH. Explaining what was going on would only serve to confuse him. Asking questions to try to figure out how he got himself "cornered" only serves to confuse him more. Asking what he did just before he asked for the help is no longer part of his memory.

Last night was so frustrating that each time  I just asked him to stop helping and I took over. His feelings were hurt but I knew that if I tried to explain what was expected, or how to do what I requested, he would only get more confused and I would get more frustrated (read angry.) So I just gently said, "Never mind honey, I'll do it." But he got his feeling hurt anyway.

It was then that I realized that currently, in many things, my helping him has  become a choice between hurting his feeling less or hurting his feelings more. Let me repeat: hurting his feelings less or hurting his feelings more. Less is the obvious choice but non-the-less it hurts his feelings. So I cried.

Until now I have held the belief that in an effort to help him keep his dignity and sense of usefulness, it was worth the frustration, aggravation, and sometimes anger that I suffered when he could not follow through.

I no longer believe that it is worth my frustration, aggravaiton, and sometimes anger and especially not my emotional and physical health, when he cannot follow through.

So I will need to analyze each request for help more carefully and judge by his chance of success to determine if I even want to ask for help in the first place.

I will need to ask less, expect less, and love more. Him and myself.

He came to me to sooth my upset and said, "You can't always be perfect. Neither can I." So I cried more.

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!