Form Follows Funcion

Memory doesn't inform.

Telling doesn't inform.
Pointing doesn't inform.
Touching doesn't inform.
Showing doesn't inform.

Only doing for has for m.

Meditation: Round 2: Practice 1

I have begun the next round of seven sessions of Yoga Nidra Mindful Meditation with Corinne Peterson.
http://www.corinnepeterson.com/yoga-therapy/

It felt good to be back for the practice in what Corinne calls the "need to recharge." The session concentrated on the first 5 levels of the yoga practice (as pictured below) and lightly touched on the others.

My intention for the session was just to get back into the practice but also the word PEACE cropped up again.

My heartfelt desire is to be able to find a place where I can get away from yesterday, today, and tomorrow. To get away from myself, my responsibilities, my worries, my concerns. The ability to be in the NOW is so important and I want to be able to do that more often. The need to be at peace with myself and my life is so strong.

For at least one hour a week in Yoga Nidra, I can do just that, work on being able to do it more often on my own,  and as a bonus periodically get in touch with thoughts that I am not otherwise able hear because of all the noise in my head.

I revisited my Inner Resource, the place I have created in my mind where I feel secure, to which I can return at any time during the yoga practice or in my life when feeling over stressed, overwhelmed, or just in need of some peace and quiet.

I previously started out describing my Inner Resource as deep in a mature forest, with a clearing with dappled sunlight and flowers.

Then I added, just across a path, my tiny one room house just big enough for me to live, in my mind, comfortably and simply knowing how much is enough.

Next I added a rustic bench to the garden so I could sit and meditate and enjoy the flowers, the sunlight, and perhaps the mist dripping of the leaves during a rainstorm.

Later I added, about a block away at the edge of the forest, the ocean with waves that can be heard through the house's windows or while sitting in the garden.

Corinne suggested we give our internal resource a name so we can use it as a trigger to the inner peace and safety one feels there. I simply called it, "Peace."

This time while visiting my Inner Resource I added a few more things. First I decided that my RIP cats Mariah and Hoover and Broadway live there. When I visit I know they are asleep under the bed, or playing out in the forest, or whatever I want to imagine them doing.

Then I realized that my mother, the anniversary of her death coming up in less than a month, was there in the house with me. I decided that my "safe place" could also be a place where I could invite in and visit with family and friends who have died but whom I still hold in my heart.

It may feel a little strange to you, my looking forward to talking with the dead, but it makes me feel warm, and loved and will give me the ability to talk about things that I never had the chance to say while they were alive.

So I am well on my way to continued adventures with Yoga Nidra. I am also going to do a few sessions with Gregory which Corinne will tailor to his language abilities (if we can figure out where they lie) and see if he can benefit from just being in a quiet place with himself and no outside world expectations. As you can imagine, I will report back.

Finally I had to think about why I was posting my yoga experiences here on the Alzheimer's BLOG instead of my writer's BLOG. I guess Alzheimer's is such a large part of my life, as is Gregory such a large love of my life, that this was the best place for it.

The Difference Between Old Age and Alzhiemer's

There has been an old joke around: Do you know the difference between Old Age and Alzheimer's? People who are older forget where they put their glasses. People with Alzheimer's forget they wear glasses.

Not funny but to the point. Recently Gregory has been demonstrating the joke. At bedtime, he gets into bed to read and is confused because the words in the book are not clear. "Put on your glasses," I say automatically.

Other times he is in bed ready to read, puts on his reading glasses, looks around the room and says, "Why is the room so blurry?"

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.

Reply From My Friend

Dearest Michael, I use that term of endearment as a former caregiver to a current caregiver. I just read your blog "Between a rock and a hard place" The rawness of your emotions makes me feel for you so much. I must tell you I "coped" with L's behaviors with the help of antidepressants and Xanax f or anxiety, Also, after I had a stroke in 2010 you may remember he went to a nursing home. There I could still see him and most importantly touch him. Many days I stayed 6-7 hrs but I had a break when I went home. Before the nursing home, I had a companion here 6 days a week. (We were fortunate to have Long Term Car Insurance which covered that) I guess what I'm trying to say is: Are you getting enough downtime.? Are you getting any therapy- talk or Rx's? What happened to me when L died was that I felt so relieved for him that he was no longer so frustrated, but also for me even tho I really missed touching him. It took me months to feel comfortable with groups of other people esp. When there was much jocularity. I was beginning to come out of the fog when I found some old love/sexy letters which just got me way down again. Now I'm volunteering in two places and in two book clubs and I'm doing pretty well. I would love to talk with you whenever you want. Let me know what times are good for you and I'll see when we can connect. Much love and big hugs, B PS My son calls almost every day which helps a lot!

An E-mail to a Friend

Dear B,

Laughs are good. Glad you enjoyed the article I sent.

In response to "How are you doing?" I am hanging in there but currently by the fingernails. G continues to fail, doesn't understand most words, so communication is difficult, so most parts of life don't work smoothly if at all. Yet so many things still do work well. It is a crap shoot and Russian Roulette at the same time as well as an opera and a circus and a freak show.

For the most part I am fine but the small explosions add up, the regrouping takes it toll, and the resilience has its cost. Sometimes I feel that I am not too "nice" to him. My tone of voice is not loving, I am impatient, I am short. I don't know when to help or how to help. I hate letting him struggle by himself but sometimes I think that is the best choice. I keep thinking I'll get the hang of it, but suspect that there is no hang! I'll keep trying.

Someday I would like to talk about what it was like towards the end with your husband, if you are up to it. I so understand how you felt towards the end of his Alzheimer's and how much you must miss him. Just to hear him say, "I love you."

While I find myself wishing Gregory dead so he does not have to face the inevitable (is that too strong a statement?) I know I'll be devastated. 

For details on how we are doing check out http://mhorvichcares.blogspot.com 

m

The Atlantic

In Alzheimer's Disease, Maintaining Connection and 'Saving Face'

RICHARD SENELICK - Richard C. Senelick is a neurologist who serves as medical director of the Rehabilitation Institute of San Antonio. He is also editor in chief of HealthSouth Press.

inShare1NOV 27 2012, 5:35 PM ET

Part one in a series on how people with neurologic disorders open and utilize new channels of expression

uabmagazine/YouTube

I've decided that all older men with gray beards must look alike, because each week I am mistaken for someone else. But, if I were to shave my beard - which I have worn for over 40 years - I believe that my friends and colleagues would fail to recognize me. I would be a different person to them because of this small, physical change. 
If such a small change affects the way people see me, then the larger mental changes that Alzheimer's patients experience must truly and deeply change the way their loved ones see them. Dr. Daniel Potts, a neurologist at the University of Alabama, has begun studying the concept of "saving face" and preserving the "person" in people with dementia.
Dr. Potts' father, Lester Potts, became an acclaimed watercolor artist after his Alzheimer's diagnosis. He had lost his verbal abilities but could express his feelings through his art. This bolstered his retention of self-worth and dignity. His paintbrush let him bypass the part of his brain that Alzheimer's blocked, and communicate in a new way.
But before we find out more about art and Alzheimer's patients, let's go back to the "face" part of saving face for just a moment.

You are always at least a little surprised that, in reality, they have aged. You might recoil at the thought that they must be thinking the exact same thing.

How is it that most of us instantly recognize someone before they utter a sound? How can we can pick a certain individual out of a large group photo? Large portions of our brain are dedicated to facial recognition and interpretation. What we see may trigger whole sets of emotions, memories, feelings, sounds and even smells. A picture of my grandfather triggers the wonderful aroma of his ever present half-chewed-half-smoked cigar. I can't help but smile when I see his face.
We automatically interpret others' facial expressions, but as people age or develop neurologic disorders like Alzheimer's or Parkinson's disease, they lose their familiar range of facial expression. We look at or talk to our loved one and we no longer see what we saw before. People with Alzheimer's disease not only lose verbal abilities, but also lose the ability to truly express their thoughts and emotions with their faces. In turn, we lose the ability interact with them the way we did in the past. 
So, how can we learn what lies behind their eyes? Has the light gone out? Dr. Potts insists, emphatically, "No." He says, "We have to assure ourselves that our loved one is still with us, even though they don't always act like themselves. We do this by meeting them in their present-day world. We have to be open to their new ways of communicating, and help them find novel avenues for this expression."
We tend to preserve a mental image of the person as they were prior to their illness, the way we've known them our whole lives. Think about when you reunite with someone you haven't seen in 20 years. Before you meet with them, you have an image of them from 20 years ago frozen in your memory. You are always at least a little surprised that, in reality, they have aged. You might recoil at the thought that they must be thinking the exact same thing. As our parents age, we continue to see them as the people that we love and in the roles that they played in our lives in the past -- strong, supportive, and knowledgeable.
On top of these innate feelings, we ground so much of our adult identity in our vocational accomplishments that without them, many of us lose all personal identity. Of course, we don't want to be known only for our prior achievements. We want to be respected and admired for who we are now and what we contribute to our friends, families, and society. Those with Alzheimer's are no different.
Dr. Potts insists that when illness strikes we must validate the person in the present and "learn to love and appreciate who they are in their now." The person with Alzheimer's disease will not return to who they were so we must meet them and accept them in their new role. Dr. Potts tells family members and health care professional that they must:

• Discover who the people were by taking the time to learn their story.
• Appreciate who they are now and see them as more than their illness.
• Demonstrate for them their current worth.
• Help them preserve their personhood and dignity.
• Find channels for expression that bypass those blocked by their disease.
• Help them "save face."

We must develop new "languages" to help those with cognitive disorders communicate with us, for they still have much to say. Dr. Potts asserts that people with Alzheimer's disease are still "rich" with thoughts and ideas, but need new channels to express those thoughts and ideas. His father used water colors while others have used music, poetry or dance. Rather than park them in front of a television, we must explore alternative channels of communication that bypass the blocked channels in their brain. Dr. Potts tell us that we must provide the tools that provide an environment that focuses on the person, not the disease, and offer a variety of opportunities for expression that bypass the person's disability.
When faced with a person with a spinal cord injury or amputation, their doctor or therapist focuses on their strengths and builds upon their "abilities." Unfortunately, in progressive neurologic disorders, like Alzheimer's disease, we are more likely to focus on the eventual outcome of the disease and not on the person's reservoir of abilities. Dr. Potts tells us that we must recognize "that personhood still exists, even in the presence of Alzheimer's disease and assist the person in saving face."

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.

Alzheimer's: Creative Non Fiction Menage a Trois

PROLOGUE

After over thirty five years their relationship was as strong as ever, their love continuing to grow, change, and adjust to the times. Uninvited, a third partner joined the relationship.

It was not fashionable when they first fell in love, let along acceptable for two people of the same sex to do so. But Alzheimer’s does not discriminate nor ask permission and so it became a ménage à trois.

Each one was very much unlike the other. He was tall and he was short. He was fair and he was dark. He was slender and he was bulky. He was a recovering Catholic. He was a recovering Jew. He was calm, thoughtful, and orderly. He was animated, impulsive, and random.

Often he described him as a “stick,” meaning hard, formed, and inflexible. In turn, he described him as a “sponge,” meaning soft, malleable, absorbing. Over time the stick became more sponge-like and the sponge became more stick-like.

Now one was becoming less and one was having to become more. Slowly while one was becoming the back partner in this ménage à trois and while one was becoming the front partner, Alzheimer’s was becoming the dominant partner.

Normalcy

How can I describe what it is like to live with someone who has Alzheimer's Disease or any dementia for that matter. I have tried many ways to talk about what I go through on a daily if not hourly basis. I have used metaphor, description, poetry, humor, and tears to try to share with you what it is like. Here is my latest attempt:

Living with and loving someone who has Alzheimer's
Is like orchestrating an improvisational dance with normalcy.
No music, no planned steps, no assigned leading partner.
Not being able to anticipate turns or circling or dips or bends.
Redefining normalcy by the moment.
For him not for me is the key but
My living in his world, makes no sense to either of us!

Gregory: Then and Now

Checking It Out

Periodically I find myself checking out my cognitive abilities. I forgot to flush the toilet? I left the cabinet door open? I didn't start the full dishwasher after I put the soap in? I can't remember that guy's name?

No, that's not Alzheimer's or Dementia of any sort. That is just growing older and trying to do it with grace.

Marbles Anyone

Forgetting the name of an actor, after accumulating 60+ years of facts and figures in one's mind, should only be the worst of Alzheimer's/ Dementia Disease. However, I like that Mr. Reardon ends the article with: "Maybe I should be thankful to the threat of Alzheimer's. It reminds me to live life as fully as I can. Or, as Gwendolyn Brooks writes, "conduct your blooming in the noise and the whip of the whirlwind."

(Tribune illustration by Mike Miner / March 10, 2012

http://www.chicagotribune.com/news/opinion/ct-perspec-0311-alzheimers-20120311,0,6707658.story

Frontal Lobe Dementia

Taken from depression-guide.com this information about Frontal Lobe Dementia seems to describe what I have seen Gregory experiencing rather than the typical Alzheimer's symptoms. I have mentioned this previously but wanted to do so again.

Frontal lobe dementia is the name given to any dementia caused by damage to this part of the brain. It includes Pick's Disease but can also be caused by other diseases. They all have similar symptoms and prognoses.


Pick's Disease (Frontotemporal lobar degeneration)


A progressive dementia occurring in middle life characterised by slowly developing changes in character and social behaviour, or impairment of language, due to degeneration of the frontal and temporal lobes of the brain.
Some dementias, however, do not follow this pattern. Vascular dementias have recently been characterized by specific diagnostic criteria. They can be summarized by sudden onset of dementia and step-wise progression with focal neurological findings and positive brain imaging. Lewy body dementia is characterized by early appearance of symptoms in the course of dementia, accompanied by progression and hallucinations. Primary progressive aphasia includes early dissolution of speech in an otherwise cognitively intact individual. They can become globally aphasic in spite of being able to continue to run a household or even work. Eventually 20% per year progress to dementia, which appears similar in the advanced states to Alzheimer's disease.

Frontal lobe dementias are characterized by early psychiatric symptoms followed later by cognitive impairments. Frontal lobe syndrome is therefore the presenting symptomatology: apathy, poor social judgment, and bizarre behavior. Histologically, the frontal lobe dementias are proven to be characterized by Pick's cells (Pick's disease). At the present time, these diverse histological types are clinically indistinguishable.

Symptoms of Frontal Lobe (aka Frontotemporal) Dementia:

• Impairments in social skills
  - inappropriate or bizarre social behavior (e.g., eating with one's fingers in public, doing sit-ups in a public restroom, being overly familiar with strangers)
  - "loosening" of normal social restraints (e.g., using obscene language or making inappropriate sexual remarks)
• Change in activity level
  - apathy, withdrawal, loss of interest, lack of motivation, and initiative which may appear to be depression but the patient does not experience sad feelings.
  - in some instances there is an increase in purposeless activity (e.g., pacing, constant cleaning) or agitation.
• Decreased Judgment
  - impairments in financial decision- making (e.g., impulsive spending)
  - difficulty recognizing consequences of behavior
  - lack of appreciation for threats to safety (e.g., inviting strangers into home)
• Changes in personal habits
  - lack of concern over personal appearance
  - irresponsibility
  - compulsiveness (need to carry out repeated actions that are inappropriate or not relevant to the situation at hand.
• Alterations in personality and mood
  - increased irritability, decreased ability to tolerate frustration
• Changes is one's customary emotional responsiveness
  - a lack of sympathy or compassion in someone who was typically responsive to others' distress
  - heightened emotionality in someone who was typically less emotionally responsive

Persons with this form of dementia may look like they have problems in almost all areas of mental function. This is because all mental activity requires attention, concentration and the ability to organize information, all of which are impaired in frontal lobe dementia. Careful testing, however, usually shows that most of the problems stem from a lack of persistence and increased inertia.


What are the differences between Pick's disease and Alzheimer's disease?
The main difference between Pick's disease and Alzheimer's disease is that the damage occurs in different areas of the brain, at least in the early stages. In most cases of Pick's disease, the frontal and temporal lobes of the brain are the areas affected and with Alzheimer's disease, the temporal and parietal lobes are affected.

Who gets frontal lobe dementia?

Frontal lobe dementia, including Pick's disease, can affect both men and women. Although it can affect people at any age, it usually begins between 40 to 65 years of age.

Duration and Treatment of Frontal Lobe Dementia - FLD

The length of FTD varies, with some patients declining rapidly over two to three years and others showing only minimal changes over a decade. Studies have shown persons with FTD to live with the disease an average of eight years, with a range from three years to 17 years.


No medications are known currently to treat or prevent FTD. Serotonin-boosting medications may alleviate some behaviors.

Facts and Tips about Frontal Lobe dementia

• Frontal lobe dementia is the form of dementia. It is degenerative disease which mainly affects frontal lobe of the brain.
• Change in personality, loss of language skills, ability to carry out difficult tasks are other features of frontal lobe dementia.
• Clinically, Pick disease may be identical or very similar to frontal lobe degeneration. 
• Persons having age between 40 to 65 years are mostly affected by frontal lobe dementia.
• Frontal lobe dementia causes slow decline in behavior and judgment. 
• Symptoms of frontal lobe dementia are very similar to vascular dementia and only brain image can make a distinction between them.

Iron Lady Continued

Chatted with G after dinner about "The Iron Lady" but not really sure he realized until I mentioned it that Margaret Thatcher has Alzheimer's Disease. The movie, however, really affected him. (I think the movie and Ms. Streep did a really good job of portraying what it is like to live with the BIG A.)

In the past (B.A. = Before Alzheimer's) when he got really involved in a "heavy" movie he would be distracted and "lost in it" for a while after (hours at least.) This time his distraction via Alzheimer's showed up during dinner when he didn't know how to cut the peach in his peaches and cottage cheese, started to pull it apart with his fingers, so I cut up his food for him. He was quite confused between his knife and spoon, when he did figure out that the knife was to spread jam on his English muffin he did not really understand the principal of how a knife carries the jam and spreads it.

After his muffin was gone, he loaded up his knife with more jam, "Where am I supposed to put this?" he asked. "Back in the jar," I replied, "you have no more muffin to put it on."

He was aware of how confused he was and (in his few-ly worded way) recognized "How I am after a movie."

What if IT happened to me?

Of course dementia can happen to anyone so yes I have thought about it. I am not sure that there is anything I could do to "prevent" it in addition to what I already do to live a healthy, active, productive life.


I have prepared our finances in a way that the next in line trustee would take control of Gregory and my personal and medical lives and decisions if I couldn't whether due to a form of dementia or something like a stroke or heart attack. 


If I began to feel dementia creeping in I hope I would recognize it, as least in the early stages, and take action. We have a large enough support group that someone would let me know if they thought I needed a "look see."


It would be very important to me then, as we did in the past for Gregory, to control all those things I can and provide for the future of those which I may not be able. Never easy but as I have written before, can't spend (waste) too much time anticipating what MIGHT be at the risk of missing the wonderful that still is.