Invisible Wounds

Invisible wounds are the hardest to heal for their closure depends on the love of others. And patience, and understanding and the tender gift of time.

From Call the Midwife, Season 3, Episode 8

It Was Almost Like Normal

Manny and Gregory had returned from the Sunday entertainment and I found them in Gregory's room. This is the first time in a long time that I was unable to attend the 3:00 program.

Gregory and I hugged. Manny and I caught up on some "housekeeping" like my returning newly laundered pillow cases, checking to make sure there were enough snacks in the fridge, getting feedback on how Gregory was doing with his tush rash, helping Manny with a few pointers on using his new iPhone (which was a gift from Gregory and me.)

Then Manny "disappeared into the hall" and Gregory and I had some alone time. I told Gregory I loved him, that he makes me happy, and that I like being with him.

I leaned into his left shoulder and with some effort helped him lift his right arm and placed his hand on my head. I could feel him slightly stroking my hair and my tears and a few sobs arrived without warning.

Even though I had set it up, it was wonderful being caressed and touched by the person I love most in the world. I am not sure how much Gregory was aware of the situation.

We just sat quietly like this and then at Gregory's gesture, we moved away from each other. I again said, "I love you."

He replied, "I love you."

I asked, "How much do you love me?"

He replied, "Very much."

I said, "I love you very much too."

"Yes," was his response.

"Thank you." I said.

He answered, "You are welcome."

It was almost like a normal communication. In fact it was a normal communication. One learns not to look too deeply in understanding, mindfulness, or intent. One just enjoys the moment.

Sing-A-Long

You had to be Jewish to sing along but the idea was lovely. Some 60 Jewish students entertained some 300 residents at yesterday's Lieberman Sing-A-Long. The event was held in the community room. The music was Passover oriented and while for the most part it was the students singing, the residents did clap and some did rock along to the music.

I will be honest in that I used to think these kind of pretend events were pathetic. Noisy. People not aware of their surroundings. An attempt at bringing life to the dead. I do not mean to be mean, just honest.

Now, I enjoy these event whole heartedly. Each person IS aware in their own way at their own level. The noise is inevitable but does not distract. The music did bring life to the dead and much more.

In the future, I will work at not judging before I am an integrated part of an experience.

https://soundcloud.com/mhorvich/dyano

Many Ahh Ha's

When Gregory is trying to negotiate an activity and I try to explain, he will have an "Ahh Ha" moment. "Oh, I see!" or "OK!" or "I forgot that!"

But then the "Ahh Ha" moment is gone and he has not progressed any further with the activity.

"Get dressed now," I say pointing to his pile of clothes on the bedroom bench.

"OK," he replies starting at said pile but doing nothing.

"There," I point again, "put your clothes on."

"Oh, I see!" standing there doing nothing.

"DO IT! NOW!" I frustrate.

"I will. That is just what I was going to do." Still standing and doing nothing.

Sometimes he will eventually get it and proceed. Often he does not.

There are a number of ways that I can handle this. I put the clothes in his arms. I hand him his shirt. I sit him down and dress him with the result that he finally "gets it" and proceeds. Sometimes I just walk away and tell him, "Do what you need to do." or "Do it the way you want to."

Do you have any idea how aggravating it can be for you when someone behaves like they clearly understand what you are saying or asking and then proceeds to do nothing or something totally different from what you said or asked?

With a three year old, you know there is a learning process. How do you cope when you are involved in a disintegration of learning process? With patience and love and just a little frustration.

How Many Times?

How often can I cry out to the mountains, pleading
When its weight in rocks is my life's daily pain?

Screaming NO NO NO in my sad, lonely silence
Until my throat and breathing cries NO NO NO.

Overwhelmed. Devastated. Exhausted. Sad.
Tears of blood flowing, washing down my face.

With my emotions which are no longer valid to him
But still oh so valid for me, oh so valid, oh so real.

He does not cause this, but I am brutally caused.
He does not control, this but I am cruelly controlled.

Not understanding even the words I very carefully use
Nor the explanations I still try to give, to help, to share.

We sit at the restaurant table with our closest friends
I hold his hand, stroking, trying to help him be involved.

Love cannot describe the immensity or the agony of my love
That no longer soothes but only torments and tortures.

How often can I cry out to the mountains, suffering
When its weight in rocks is my life's daily pain?

.

Retro Normalcy

Besides keeping Gregory safe and happy, I feel my most important role as life partner and caregiver partner is to maintain, for both Gregory and myself, as much of a sense of normalcy as possible. That means daily routines, life skills, meals, entertainment, interactions, social relationships, sense of home, etc.

But I have come to realize that the "normalcy factor" shifts as quickly and as erratically as Gregory's Alzheimer's shifts. What was normal last week, yesterday, earlier today is not necessarily normal this week, today, now.

This realization adds a new understanding of my role and while it doesn't make it any easier, it does create a validity to the roller coaster of my emotions, difficulties of day to day interactions, and sometimes impossibility of providing for Gregory.

P.S. I have recently become Gregory's Bowel Movement Coach. I'll let you decide what that involves but lets just say that I hope it is only the very, very beginning of Gregory's incontinence. Coaching is much easier than changing the whole ball game of bath rooming.

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.

What is Your Name?

Don't read this if you get easily depressed, because I know that after tonight's episode, I am depressed enough for an entire city. Maybe he is loosing more functioning because he is still ill. I do not know what to think.

He was in the bathroom on the toilet. He moved his bowels and wiped himself. I asked about the toilet paper still in his hand and he didn't know what to do with it. I had him stand up so I could see his progress. He had done some wiping after all. He sat back down.

"Throw the paper in your hand into the toilet." He did not know what to do. He looked at the garbage pail next to the toilet and pointed at that. "No," I said, "In the toilet." He continued to look confused. I asked him to stand up again and said, "You throw the shit paper in there." "Oh," he replied.

I explained the process to him again and you would have thought I was speaking in a foreign language. "So it looks like you do not know how to use the toilet anymore, I will have to help you."

He got upset with me and was able to say, "Can't ... you ... just ... tell ... me?"

"Yes," I answered, "but when I tell you you don't understand." He didn't understand. We went through the three or four times. Tell me. But you don't understand. Tell. Understand. Tell? Understand?

Previously we have attributed his problems to Alzheimer's and he is usually the first to tell you he has it. I said, "This is what Alzheimer's is all about isn't it! You know that don't you?"

"No! I have Alzheimer's?" He was incredulous as if he or I had never said or heard this before.

"Yes you do," I answered, "we have talked about this before." So I braved it and asked something I have wanted to ask for a while, "What is my name?" No reply. "Do you know my name?" He stood there silently for quite a while with a look of dread on his face.

Finally he said sadly, "No I don't."

"Michael. Do you know your name?"

He fumbled for words, thought, and finally answered, "I don't have one."

"Your name is Gregory." A light somewhere deep inside seemed to go on, or was I just imagining it.

"Why don't you get ready for bed now" and we had to work through what that meant.

Letting Go

When I run across something that speaks to me, I like to share it here on my Alzheimer's BLOG. Maybe it will speak to you, maybe not.

From: http://www.dailyom.com

March 7, 2013 Letting Go of Understanding Deeper Meaningsby Madisyn Taylor We don't always need to know the deeper meaning of everything that happens in our lives. All of us who seek to be conscious and aware regard our experiences as teachers, and we try to discern what lessons we are learning from the things that happen in our lives. Sometimes the lesson is very clear from the get-go, and other times we have to really search to understand the deeper meaning behind some event. While this search often yields results, there also comes a point in the search where what we really need to do is move forward. It is possible that we are not meant to know the deeper meaning of certain occurrences. Answers may come later in our lives, or they may come as a result of letting go, or they may never come. We are all part of a complex system of being, and things work themselves out in the system as a whole. Sometimes we are just playing a necessary part in that process with a result larger than we can understand. It may have very little to do with us personally, and while that can be hard to understand, it can also free us from overthinking the matter. Sometimes it is best to see it in terms of karma, a past debt we have been able to repay in this way, or as the clearing of energy. We can simply thank the event for being part of our experience and let it go. This completes the process that the occurrence has made possible. To make this letting go official, we can perform a ritual, make a final journal entry on the subject, or sit in meditation with the intention of releasing the event from our consciousness. As we do so, we summon it one last time, honoring it with our attention, thanking it, and saying good-bye. We then let it go out the door, out the window, out the top of our heads, or into the earth through the bottoms of our feet, liberating ourselves from any burden we have carried in association with it.

On Living with Dementia

This was taken from an article written by Floyd Skloot who has also written a number of books on his life with Alzheimer's disease. (Thanks to Joan and Robert for sharing this article.)

Something I wrote 15 years ago about living with dementia became a credo for me: 

Since I can't presume I'll remember anything, I must live fully in the present. 

Since I can't presume I'll understand anything, I must experience my life without pressing to formulate ideas about it.

Since I can't escape my altered brain and the limits it has imposed, I must be at home with it. 

And since I can't presume I'll master anthing I do, I must let go of mastery as a goal and seek harmony instead. 

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.

Opera or Circus

There is a life
On the verge of which I seem to sit,

Which I yearn just to feel, to touch,
And not just to ache.


Where there is pain
Just under my emotional haze
That carries my sorrow
On the rounded tip of a perching tear,

There are so many events
Just about to happen or not
Which need written their stories or poems
Desperately couched in words not yet written.

There in my oftentimes desperate need
To fashion a clay understanding
A three dimensional model of my world
So I can see it, touch it,

There is the frustration and drive
To keep up with my speeding self
As a major opera house production but
also as a one ring tented circus.

Conundrum

I don't know what's better...
When Gregory doesn't understand or
When he thinks he does.

Understanding

Lately Gregory has been asking "What?" when I say or ask something.

Today I asked, "Is it because you don't hear me or that you don't understand me?

He replied, "Wow, I don't understand that one."

Without Warning

A great support program for those with and those caring for those with Alzheimer's Disease. The meetings are held in Elmhurst at at St. Peter's Church and is sponsored by the Rush Alzheimer's Disease Center, 600 S. Paulina, Suite 130, Chicago, IL 60612, 312-942-5359.

Click here to see a video about WITHOUT WARNING.

Hearing vs Listening

I have found that The Daily Word from Unity Temple, has been very helpful in my spiritual quest and supporting me as I deal with Gregory's Alzheimer's. Today's passage reads:

"I rely on my ears to hear, but my heart to listen. When someone speaks to me, I not only hear the words, but with focused attention, I truly listen to what they are saying and the feelings they are expressing. I am an active and attentive listener, asking for clarification to help me understand. I listen this way because I know what it means to be heard."

More and more, as Gregory continues to loose words and language, I find myself listening with my heart to his attempts to communicate. I know him and our life well enough, that I am often able to "know" what he is trying to say. Other times I haven't the foggiest. This is when it takes more patience on my part and I really must listen with my heart.

Lately, I find that while I am waiting attentively, with an interested look on my face, while he is trying to formulate his thoughts, in my mind I quietly send LOVE to him. This helps me maintain my patience and calm my frustration and sometimes anger.

So many lessons.

Unity's Daily Word Magazine

Grace

In response to yesterday's post, Lynn commented: "Sometimes the greatest victory is getting through your day with some level of grace, regardless of what is actually accomplished."


Yes Lynn, I agree that one always needs to keep an eye on "Grace." However, sometimes the problem is not a question of "getting things accomplished" but rather "getting through the craziness that is Alzheimer's." 


Metaphorically, the person with Alzheimer's is not "running on all cylinders" so they don't notice how they are running. The caregiver is running on all cylinders and sometimes therefore, the emotions kick in before the intellect. This causes interactions in which love, respect, kindness, patience, understanding, etc suffer.


Then Grace takes the form of apology. I believe the key, as you say Lynn, is "SOME LEVEL" of grace. One cannot always be perfect, even though we try : •)