Question About Depression From Blog Reader

Can I ask if depression was part of Gregorys realm early on when he understood what he was facing? Depression has been a huge barrier for A. He's on medication and we have a new psychotherapist and with the weather improving exercise will be a help. I'm just wondering if you have any other ideas on how to keep spirits lifted and positive.

a few seconds ago

Gregory was somewhat lucky in that the Alzheimer's provided a barrier between the disease and his understanding of what was happening to him. Greg has always been a calm, easy going, relaxed, positive person so I think that helped. Friends would ask how things were going and Gregory would reply, "It has been going very well." I, on the other hand, knew that things were getting worse. Gregory just didn't see or know. At times he was aware of his losses but he knew he could trust me, I never made him feel "less than" or diminished and I always kept upbeat, optimistic, and hopeful in front of him. I learned how to cry myself to sleep without waking him. I also couldn't really discuss the changes with him because he was not aware of them and I did not want to burden him with my dealings. That is when I turned to the computer to process, get closure, write about what I was feeling. I would recommend more attention to DRUGS and making sure you get the best balance. They have helped Gregory at Lieberman when he became frustrated, angry, and resistive again. Getting the right balance was difficult, between drugged and sleepy and alert and present, but they are doing really well now. The staff keeps an eye on that with me. I worked very hard at trying to keep our life and our home as "normal" as possible and that meant changing, redefining, revising, and keeping on keeping on no matter how down I might have felt inside. We went out to eat, to the show, to the opera, hosted parties, socialized ... with me continuing to increase my role in helping him be successful in those situations. Hope my talking "around" the topic has helped.

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.

Update on E-Mail Update

My e-mail has been "dinging" off the hook with so many supportive replies to my update broadcast on Gregory and my continued journey with Alzheimer's. Over the next few days, I will be sharing some of the comments (names will be changed to protect the innocent :-)

Meanwhile I am afraid that we might be the closest that we have been to  having to find a Memory Care Home for Gregory. It may or may not be imminent depending on what course the illness next takes. I am still able to keep up and will continue to do what I have to do but at times the presenting situation is so strange that I do not know what to do or what the best course of action is.

For example his recent crying and upset jags. For seemingly no reason he gets upset and is not easily calmed. He does calm down eventually with soothing comments like: Everything is OK ... Everything is good ... love ... happy ... Everybody loves you. etc

One an episode took the direction of his feeling that he was a bad person and/or had done something wrong. I assured him and he perked up. "Really?" he replied. "OK?" "Honest?" etc he was able to get out as he was able to renew his confidence in his worth.

Another episode (and I am trying to guess at meanings here from his "mumblings") had to do with either having (in me) the kind of relationship and love that is very special or needing and hoping to find that kind of social love. Some of the mumblings sounded like him not being gay ("having a love like that.")

Early this morning we spent from 7-8am dealing with something "red" and "people out there"instead of sleeping. I finally got both of us out of bed and we walked around the condo talking about the snow outside the windows and how cold it is. He finally settled down and we went back to sleep.

I am concerned that I do the best for Gregory and am not sure what that might be and/or if my emotions and love for him are getting in the way of intelligent decisions. I would like to believe that I am able to separate my emotional from my intellectual and that the right side will win out. I know I have friends who will "take me in hand" if I loose my perspective!

I will be talking to a Neurological Social Worker in the next few weeks and Gregory is switching to a new neurologist who specializes in Alzheimer's. (I was pissed when I recently learned that his current doctor who was a "replacement" for one who left is a specialist in MS. Good for MS but not for Gregory?)

Meanwhile I am taking a day at a time and surviving. Not necessarily "living" but at least "surviving."

Going, Going, Gone

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

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

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

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

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

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

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

"Yes, out there."

"Yes, out there," I reinforced.

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

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

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

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

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

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

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

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

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

I identify.

Today, this came across my mail: 

Shambhala Publications

SUPPORTING CONDUCT

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

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

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

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

GOING GOING GONE

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

A Guidance System

Emotions are your guidance system, not the cause your problems. Emotions are the response to what is happening in your life. They are an indication of what you are experiencing. Like a thermometer tells you the temperature in a room, your emotions tell you about the state of your life. Therefore, emotions are a good thing that can guide you to making your life what you want it to be.

Usually one hears about guidance systems when referring to airplanes or missiles. With airplanes, the guidance system helps make sure you will safely reach your vacation destination. In shooting a missile, the guidance system helps make sure the missile hits its destination doing the desired damage.

With emotions, the guidance system tells you whether what you are experiencing is making you happy or sad, is right or wrong, is good or bad. So if you are angry or depressed or sad, that is not the problem. That is the measure of your problem. 

To make changes, you must dig deeper than your emotions (or maybe you already have) to find the cause of your anger, your depression, your sadness. It is easy to say, "I am depressed" and to leave it there, being depressed. It is as if labeling the emotion is enough. However, when used as a guidance system, your emotions help you to be armed with a better understanding of the current state of affairs of your life and you can begin to deal with the cause, to correct it if you can. 

As you make these changes, you will feel your emotional barometer change. Most situations can be changed, if not by yourself then with the help of a family member, a friend, or a trained professional. In those situations that cannot be changed, your thinking can be. While it may seem difficult to impossible, one does have that choice and that ability. 

I believe that each one of us is creating for ourselves a life that reflects how we think about things, how we see things, whether we are optimistic or pessimistic. We must remember that our emotions are only the measure your life not the cause. 

If your emotions are telling you that you are happy and that your life is good, keep up the good work. If your emotions are telling you that you are sad, unhappy, lonely, frightened, depressed, etc, then think about how to begin the process of change.

On a day to day basis, you can alter your emotions by how you think about things. If the person in line at the grocery store in front of you is giving the checker a hard time and holding up the line, it is not necessarily about you and your anger at having to wait or your disgust with the woman's rudeness.

Maybe the person can barely afford her groceries, maybe her husband is dying of cancer, maybe she just got a call that her child was in trouble again at school. If you can begin to look at the "maybes," chances are you will not be as angry with this stranger who is holding up the line as you were. Often, a person's problems are invisible, so don't take them for granted.

Even with something as severe as the diagnosis of an incurable disease; a person can change their thinking. He can spend all the time left being depressed, down, and sad or he can make the best of the time left, do those things he has been postponing, make sure he tells those who matter that he loves them, look at those parts of his life for which he should be grateful. He can live life as well as he can, while he can.

While some sayings are trite, like ...  you can change if you want to, it is all in how you think about it, if you change your attitude you can change your life  ...  they are true. Try it, you'll be surprised.

A Reply to the Reply

B,

Hi. Thanks for the speedy reply. I am not really depressed or anxious so at least for now do not feel the need for drugs, although not opposed. I do get down time, have a wonderful therapist that I spend time with every week, and have many supportive friends in the area. I am sleeping well, Gregory is not wandering or violent or angry and knows me and our home and our family and friends (even though he might not be able to call them by name.) He is happy and contented and often tells me so.

The problem is trying to keep some sense of normalcy around here when I never know how he will respond or what he will remember or how much he will understand. For example, I can lay out his clothes, no problem, but then he gets more out of the closet, doesn't know how to put them on, or forgets some combination of them. Even when he comes to me for help, short of sitting him down "old people's home style" and dressing him, he cannot follow simple directions, or pointing, or demonstrating. So helping is NO help. That is really what frustrates me. 

Also, I am learning to follow that he does not always mean what he says, like when I ask "Are your pockets filled?" (wallet, keys, etc) and he says NO but they are. Or I'll tell him to go to the bathroom right before we are leaving and he will say OK but if I don't see him do it, chances are he doesn't and then as we are walking out the door he'll say, "Oh I need to go to the bathroom." 

Honestly don't know what I would do with a companion here 6 days a week. Maybe if we had a larger place, they could be getting dressed while I was in my office or whatever. But it is an intimate condo. When the companions are here I will make a play date with friends, or go shopping, or just be somewhere by myself and work on my poetry at the local Starbucks, or go out to lunch, or go on an adventure. I have a massage once or twice a month. A few times when the weather was still nice, G and the companion would go out and I would stay home by myself which was nice. 

It is the day to day that seems to make me nuts. Like asking him to fill the water pitcher before dinner and sometimes he can do it and other times he cannot. If I try to help, that only complicates and confuses him further so I just hold back and let him struggle, which is very difficult for me and him. I often tell him, "It is a question of feel bad now or feel bad later." 

Instead of accepting it gracefully and calmly I find anger and "hate" in my heart and I know it shows in my voice and gestures. Sometimes he will say something which uses the best words he can get out but it will be insulting or demeaning. I still react to the words used instead of the hidden intent. Even though I am becomming more and more aware of the fact that he can use any words is a blessing and I don't always reinterpret or translate them into a positive, understanding statement before my emotions kick in and I get angry with him and have hurt feelings.

In summary, what is really getting to me is that in the day to day functioning of our (my) live, NOTHING IS WHAT IT SEEMS!

P.S. I am using these correspondences on my blog because I feel they are valuable to my readers. Names are changed to protect the innocent:-)

Fondly,

Michael

P.P.S.S. We are going to Battle Creed to visit G's family this weekend. I'll send them your love.

Meditation

Session 4. The purpose of today's meditation was to bring one closer to one's Essential Nature and to be better able to distinguish it from one's Essential Self. The Essential Nature is the underlying nature of all existence of which each one of us is a part. The Essential Self is what makes each one of us a unique person along with our interpretation of who we are and our self perceptions of the world we live in.

I recently have been reading about this same topic in The Fifth Agreement by Don Miguel Ruiz. He talks about how we, as humans, come to make sense of our world. "We put words together from nowhere; we make them up. Humans invent every sound, every letter, every graphic symbol. We hear a sound like "A" and say, 'This is the symbol for that sound.' We draw a symbol to represent the sound, we put the symbol and the sound together, (use them to create words) and we give it (them) a meaning (s.) Every word in our mind has a meaning, but it's not real, it's not truth. It an agreement with ourselves, and with everybody else who learns the same symbology."

This varies from language to language, from culture to culture, from belief system to belief system. The way we describe ourselves is not the truth, it is an agreement on the understanding of our symbolic language. The truth, or Essential Nature of each one of us is what exists from the day we were born and before we complicated it with our "Agreements."

Besides our creation and agreement with others on language use, we also learn from others as they assign values like good and bad, fat and skinny, beautiful and ugly, etc. These agreements are not truth (Essential Nature) but we come to accept them anyway from the important people in our lives like our parents, siblings, family, friends, teachers, religious leaders based on their agreements (Essential Selves.)

So to bring us back to the session, it was a difficult one for me. For some reason I became frustrated and fearful. I was unable to look closely at my Essential Nature and the Self kept getting in the way. I felt sad, very alone, somewhat depressed, focused on my lacks and faults, and on the continuing and increasing difficulties in being supportive of Gregory. I was quite far from being able to get past that to embrace the true me, with whom at times I am able to visit, but not this time.

Towards the end of the session I became anxious and as suggested early on in the beginning sessions, I visited my Internal Resource where I could feel safe and protected. I hope to write about that later but suffice it to say it exists in my visualization of an old forest, with a small house nestled among the trees, and at the edge forest - the ocean.

It did calm me down but after the session I carried the heaviness with me out to the car where I cried for a while and then went to Pannino's for an Italian Beef Sandwich with lucious hot French Fries. I'll feel better tomorrow.

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?

HINT FICTION: Where to Hide?

Hint Fiction is a story of 25 words or fewer that suggests a larger, more complex story. I have been adding this type of writing to my BLOG  michael a. horvich writes for a while. Tonight a Hint Fiction was motivated by a dinner experience with Gregory so it rightfully belongs here. Hint Fiction can go everywhere I guess.



Where to Hide?

Nowhere to hide. It came out in a punishing sort of way. It caused two-sided tears. Instruct the jury to ignore the previous statement. Can't.