I Have Lost Myself

SPOILER: HEAVY READING AHEAD...

In 1996, Dr. Konrad Maurer and his colleagues, Drs. Volk and Gerbaldo, rediscovered the medical record of Auguste Deter. In it Dr. Alzheimer had recorded his examination of his patient,

"What is your name?“

"Auguste.“

"Family name?“

"Auguste.“

"What is your husband's name?“ - she hesitates, finally answers:

"I believe ... Auguste.“

"Your husband?“

"Oh, so!“

"How old are you?“

"Fifty-one.“

"Where do you live?“

"Oh, you have been to our place“

"Are you married?“

"Oh, I am so confused.“

"Where are you right now?“

"Here and everywhere, here and now, you must not think badly of me.“

"Where are you at the moment?“

"This is where I will live.“

"Where is your bed?“

"Where should it be?“

Around midday, Frau Auguste D. ate pork and cauliflower.

"What are you eating?“

"Spinach.“ (She was chewing meat.)

"What are you eating now?“

"First I eat potatoes and then horseradish.“

"Write a '5'."

She writes: "A woman"

"Write an '8'."

She writes: "Auguste" (While she is writing she again says, "It's like I have lost myself.")

Alzheimer concluded that she had no sense of time or place. She could barely remember details of her life and frequently gave answers that had nothing to do with the question and were incoherent. Her moods changed rapidly between anxiety, mistrust, withdrawal and 'whininess'. They could not let her wander around the wards because she would accost other patients who would then assault her. It was not the first time that Alzheimer had seen a complete degeneration of the psyche in patients, but previously the patients had been in their seventies. Deter piqued his curiosity because she was much younger. In the weeks following, he continued to question her and record her responses. She frequently responded, "Oh, God!", and, "I seem to have lost myself". She seemed to be consciously aware of her helplessness. Alzheimer called it the "Disease of Forgetfulness".

CUE THE TEARS ...

25 Word Flash Non-Fiction: Midnight Adventure

Middle of the night. Shit! shit! shit! What is the matter? How did they get in, pointing at a pair of shoes in the corner.

What Goes On In There?

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

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

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

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

Ounce of Prevention

In our condo, we now have Alert 1's medical security system. You've heard the "I've fallen and can't get up!" commercial? Well I decided that for less than a dollar a day it was worth the piece of mind to know that I could get help quickly if I was in trouble.

Did I say I? Well with Gregory's Alzheimer's I realized that I could not depend on him in an emergency. If I need help, unless I am really far gone, I could probably be able to crawl to the station in the bedroom, TV room, or kitchen and push the button for help. If I can not tell the responder what the problem is they will automatically send an ambulance and paramedic.

Then they will notify several people on our emergency list to inform them of what is going on. Our friends can not get to the condo quickly enough to help but they can get here to help Gregory until I return or until other arrangements are made.

So today the system had a test. A fierce storm ripped through Chicago, including Evanston, and over 600,00 people were without power for most of the day. The power went out at 8:00 am, we left the condo at about 10:00 am and by 1:00 pm we received a call first from Jan, and next from Roger, the two first responders on our emergency list.

The Alert 1 unit has a battery back up for short power outages but our outage had spent the battery and the Alert 1 people got a "bad battery" message. They tried calling us but not only were we away from the condo, when the power is out our telephone system doesn't work. So Alert 1 followed through and called the first responders to check up on us.

I called the company back and let them know we were OK. I also added my cell phone number to their information bank with the explanation that our land line does not work when the power is out. While the exercise seemed full of "Strum and Dram" it was good to know that the system worked well.

I called Jan and Roger back and said, "We have not fallen and if we had, we were able to get up!"

Purpose

An interesting observation: When Gregory has a purpose behind what he wants to say, the words just don't come. Sometimes he is able to work out the details of his idea and other times able to hint or dance around the idea. On the other hand, when he just says what he wants to say, without any purpose, the words come easily.

He talks to the cat with no problem. Often he talks to me with no problem: "Do you want music with dinner?" No problem. ""Time for lunch." "I would like a frozen yogurt from Red Mango downstairs." "Bedtime already?" Spontaneous ... no advanced purpose ... no problem.

Formulating a thought ... problem! Yesterday we were on Navy Pier, in the beer garden, enjoying live music. Earlier, when we were having coffee and sharing a cookie, he was trying to tell me about something, some building on the Pier. He couldn't get any further so we let it drop.

Usually I sit and attend quietly with eye contact for as long as he needs while he works out his thoughts. This time he announced, "Oh I can't get there. We'll have to ask Roger." This didn't make much sense either at the time but I let it drop.

On our way to the Beer Garden, he even looked at a map of the Pier but to no avail. While in the Garden he was back on the topic of the "building on Navy Pier." I guessed a little: "Michael's Museum?" No. "The Ball Room?" No. "The Winter Garden?" No. Etc.

Finally he said, "You know ... the garden." "Winter Garden?" I repeated. No. "At our condo?" No. "The Shakespeare Garden at Northwestern?" Y  E  S!

I was then able to put the pieces together. There is a Shakespeare Theater on Navy Pier. We have been to a few shows and they are always great. He was thinking that he would like to see one this summer. Apparently Roger had mentioned that he saw the review of the current Shakespeare play in the newspaper. Puzzle solved ... this time.

Gifts

Comments on: ""Accept the Gift" by Jane Hirshfield

In the poem, she discusses dealing with receiving a Bull "from the gods" as a gift. What do you do with it? How do you behave? Although the Bull is frightening, you will come to love it and to understand it as you nurture and take care of it. And when the time comes, you will be able to give it back to the gods freely.

While the subject may give you thought, the message is simple: accept it, take care of it, give it back when asked.

Housden comments: " ... life is a series of present moments rather than a linear progression from past to future, that our one true life can only really take place here where we are, and now .... Each moment comes bearing a gift - or is it a curse? - from the gods .... Someone somewhere will always be the recipient of it." 

It can be dangerous and frightening or loving and comforting. The later is easy to accept. The former arrives when something storms into your life and your "comfortable, protecting circle is suddenly broken."

Hirshfield suggests in her poem that it be accepted as a gift, not a curse, even though it may be a sudden illness or loss, a crisis, a storm or any kind. It is a gift because it is the moment you are in and the only one you have. 

Obviously grief, illness, loss will be heavy and will bring sadness and tears. But in the long term how you welcome it will influence how you come out the other side. Housden says, "Anything that surges out of the unconscious will always be bigger than the ego's drive to shape experience the way it wants to see it." The price of the gift is loss of control and surrender. What you can hold on to, however, is how you deal with it.

Acceptance of the moment as a gift is in essence a reminder that "everything in this world is only on loan to us." This awareness helps us to live each moment as well as we can, not miss it. Even though the moment can be taken away from us, "the essence of it can never be taken away from us, the love that has burst open our heart and ushered in a deeper, more vital way of living will always continue." 

An additional awareness is that everyone, most likely invisibly to us, is involved in and dealing with their own moments.

Ten Poems to Change Your Life Again and Again by Roger Housden. P 36. 2007.In her poem

Happy Birthday

Happy Birthday Gregory! He loves fireworks and his chocolate cake. When asked he will tell you he is 25 years old. Really 63 this year. I love my little boy.

Love

Comments on: "Gate C22" by Ellen Bass

"...often deep, always poignant, frequently woven with threads of grief and loss as well as starlight. And always, always, so achingly human, which is why love is her subject over and again."


Ten Poems to Change Your Life Again and Again by Roger Housden. P 33. 2007.

Overheard

Michael, on seeing a license plate that said REPEET: "Peet and Repeet were sitting on a fence, Peet fell off. Who was left?"

Gregory: "I don't know him."

Michael: Quiet

Change

Comments on  "Sonnets to Orpheus, Part Two, XII" by Rainer Maria Rilke.

"Change happens in every moment. Not just the events of our lives, but the cells in our bodies, our memories, even our sense of who we are, all shift in a moment, often imperceptibly. We, on the other hand, tend to nurture a fixed idea of who we are and where we are going. We harbor notions of what is good for us and what is not, and try to organize and strategize accordingly. Yet life does what it does with scant concern for our preferences, so the poet is urging us to look beyond the parade of circumstances and events to the fundamental fact of change itself. In wanting the change, we are aligning ourselves with truth, with what is already happening anyway. We flow, rather than self-consciously make our own way. And in that flow sense of who we are and where we are going becomes more malleable and fluid, more responsive to conditions around us instead of bound by fixed beliefs and agendas. In the flow of change, self-forgetting happens, and a deeper remembrance can emerge, the remembrance of being always and ever joined to a greater life - not as another idea or elegant concept, but as a lived experience in the moment."

Ten Poems to Change Your Life Again and Again by Roger Housden. P 21. 2007.

Poetry

In the next few posts, I will be quoting from and/or discussing a few of the ten poems in Roger Housden's Ten Poems to Change Your Life Again and Again 2007.

I have found great delight as well as comfort in poetry as a way of understanding and dealing with my emotional and intellectual reactions to the daily interactions with Gregory's diagnosis of Alzheimer's Disease.

Very often, when I sit down to write about them, my words express themselves poetically. I read somewhere, wish I could acknowledge where, that poetry is as close to truth as one can get. The poet works painstakingly hard to select just the correct words and just the correct number of words to paint, yes paint, a picture of what he wants to express.

As a writer, I too lovingly struggle with this. If you have been following this blog and my writer's blog, you have seem some of my poetry and you might have found also some of my 6, 10, or 25 word stories. Telling a story in so few words, while called "Hint Fiction," is so close to writing poetry.

As a writer, I have become so obviously aware that other writers have written words in ways with which I could do no better. So I find that "quotations" from others are important to me. I mark them with a Post-it while reading then process them in writing (with citations.)

In the next few posts, it looks like I am combining all of this: quotations about poetry from others. Let me know what you think.

Joy

As paraphrased from The Daily Word, Saturday, July 02, 2011.

JOY

I celebrate life with joy and gratitude.

Regardless of my circumstances at the moment, on this blessed summer day, I look for evidence of goodness and take it in with all my senses. I hear the joyful sounds of life--music playing, children laughing, and neighbors chatting outside their homes.
I savor the fragrance from a nearby rose garden or the aroma of dinner cooking on an outdoor grill. The taste of a refreshing glass of iced tea or an ice cream treat brings a smile to my lips. I revel in the warm summer sun or the coolness of an air-conditioned room. Each sensory experience reminds me of the joy of being alive, as joy shines in me and in the world.

Setting Expectations

I am part of an online Alzheimer's Support Group called "Circle of Care" which is sponsored by the Novartis Drug Company. This is a chain of conversation which I recently had with Deborah, one of the facilitators.


INTRODUCTION: Hundreds of years ago, the medicine we have today would have seemed like magic. Today we know that medicine is all about science and each medicine works in very specific ways. How we learn about the ways a medicine might work is varied though – some of us gather information online, some from our MDs and some from friends and family – or maybe a mix of it all. In this discussion, we want you to think back to when your loved one first started their current medication for Alzheimer’s disease or dementia and tell us a bit about your expectations of the medication at that time.


MY REPLY: Right from the beginning the doctors said that Aricept and Namenda would only slow down the disease NOT cure it. We were surprised when Gregory began first Aricept his functioning improved greatly. If he had been functioning at 60%, he shot back up to 80%. Doctors and we were pleased. Then within a few months the functioning was on a downward roller coaster ride so we began Namenda. The same amazing improvement happened and the decline has been very slow since. We still do not expect things to ever be normal again but I do believe the medications have helped. Just recently Aricept has been approved at a little over double the dose and we have begun taking them. Here's hoping for improvement ... certainly NOT cure. P.S. I have always said, "If it would just stop here." But it doesn't. Does it?


DEBORAH'S COMMENTS: But, hope is always there....Michael, before you talked to your doc, did you have expectations of what the Aricept would do? If so, where did the expectations come from? I'm trying to understand how we build our mental map of what we can expect from these medications --where we gather our info to make the mental map. What do you think?


MY REPLY: I have always believed that the "patient" (or caregiver in this case) has at least as much responsibility for understanding the illness, the medications, the precautions, the prognosis, etc ... as does the doctor. Both must be part of the team that makes the best possible decisions and makes the best possible use of the information available. So many people will reply, "I just do what the doctor told me." I say, "Question and understand. Challenge if necessary. Do not accept blindly." I have also heard, "It is just too confusing so I didn't bother." I say, "Bother! If you don't understand ask again. A good doctor will take the time to help you understand and/or send you in the direction of getting the extra help to understand that you need. Have someone help you understand. Don't just settle."

What I knew about Alzheimer's Drugs came from discussions with our doctors and study online. From the beginning, I knew that Aricept and Namenda would not CURE or REVERSE the dementia. I knew that it would help to slow it down so the quality of life would last for a little longer. I also knew that everyone reacts differently within the general pattern of things. Therefore, I was not so surprised when the medications gave Gregory a jump start of renewed "availability." 

And I agree, Deborah, it doesn't stop but the hope is always there. Even if it is the hope to get through one day, one success, one failure at a time. Hope to be strong, supportive, able for your loved one. And storng, supportive, and able for yourself.

A Day in the Life of a Caregiveer

This morning Gregory told me that he had some blood today while he was getting dressed.

I asked, "Where?"

He replied, "On the bathroom counter."

Not erring on the side of too much information, lets just say I figured out what he needed, took care of it, and got a good laugh out of it as well.

Skip a Beat

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

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

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

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

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

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

Gregory asks, "Are you OK?"

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

Euphemistic But True

euphemism |ˈyoōfəˌmizəm|nouna mild or indirect word or expression substituted for one considered to be too harsh or blunt when referring to something unpleasant or embarrassing.
• • •
Was talking on the telephone with Jr today and he asked how Gregory was doing. I couldn't talk because G was within hearing range. So I just answered, "Right."
Jr continued "feeling out" how G was doing and wondered, "When Gregory seems to be having a period of difficulties, do they get better or stay at the low point?" 
My reply was, "Right."
I was thinking to myself that in the "ebb and flow" of Gregory's cognitive abilities (thank God - if there is one - his physical abilities have not suffered) it is usually "ebb."
Jr then commented that last time he visited, he noticed that, "Gregory wasn't as available as the visit before."
I said, "Right."
Well, without much actual discussion, MJr and I had a nice conversation and two points came out of it for me.
First, while euphemistic, "Not being as available" is a nice way of saying that Gregory's cognitive abilities continue to decline. He still has the cognitive abilities, he just cannot make them available when he need to use them.
Second, I wish that my conversations with Gregory could be as informative as the one I just had with Jr. I am thinking, "Right?"

Balance

I cannot get the balance
For this round
Of when to think for him
Or when to let him think
His own thoughts.

Existence

Yesterday Gregory and I ran an errand at the hardware store. He was at my side as we went from department to department and as the various store personnel helped us fine what we needed. Then we headed for the checkout.

Sometime between the heading and the checking out, Gregory disappeared. I realized it when I had my paid goods in hand and was ready to head for the car. No Gregory. I wasn't really worried and what good would worrying do anyway?

I looked outside to see if he had decided to wait by the car. No Gregory. I went back into the store and one of the clerks (who knows us) pointed towards the back of the store and said, "He went that way."

I walked half way back, called out, and from around the corner came Gregory. "Where were you? I asked.

"Looking for you," he replied.

I took him in hand (literally) and firmly but lovingly (and probably with a little relief, a little fear for the future, and a little anger) told him that he needs to stay with me. "In the few minutes it took for me to pay the cashier, you disappeared! That is wandering. That scares me. That can't happen. If need be I'll just have to keep you in sight at all times like a mother hen does with her chicks."

"I am sorry. I try my best."

"I know, but it is like when I have to deal with the 800 operator at the phone company and they apologize for making you wait and for messing up your bill and for not being able to do anything about it ... apologizing doesn't help!!!"

I became quiet on our way back to the car and stayed quiet once in. Gregory was quiet as well. I knew he felt bad but I just had to take a moment or two to regroup.

Finally I said to him something that surprised me when it came out of my mouth, "You know when things like that happen, I PRETEND I DON"T EXIST." Then I added, "I love you. I know you try. We'll be OK."

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!

To Every Thing There Is a Season

I have found that with Alzheimer's Disease, to every thing there is NO season. We all have our routines. Most of us circle around our routines with tiny changes here and there. For example, as the seasons change, our routines change. We take longer walks, we dress differently for Summer than we do for Spring. The days are longer, the nights shorter, we sleep differently. We eat differently.

My latest awareness with Gregory and the progress of his dementia is that the seasons will change anyway but he is not be able to change with them. This Spring into Summer he has not been able to gauge what to wear, how to dress based on the temperature outside. The temperature means nothing, the weather forecast means nothing.

Jeans vs shorts, long sleeve vs short sleeve, heavy jacket vs light jacket ... mean nothing. When I suggest he wear an undershirt under his over shirt, the words do not translate. If I try to explain it only complicates things. If I get up and show him, it confuses.

Here I am again at a point where I find myself saying to myself, "I don't know how to do this." The tears are back, the sadness is back, the heaviness is back. I don't know how to do this. There is no answer. I don't know how to do this.

Yesterday, while at a meeting at the museum, I called to see how he was doing. I guess he got through breakfast alright but he answered, "I am not doing well." He sounded like something was terribly wrong. He sounded ill. He sounded distraught. He finally was able to explain (remember language doesn't work too well anymore) that he just didn't know what to put on so he could go out for a walk. I tried to suggest but it only confused. Finally I said, "Honey just put on anything, go outside, and see how it feels."

"I'll figure it out," was his reply. All I could do was tell him I love him, go back to my meeting, and hope for the best.

Just now as I am writing this, he brightly showed up and wished me, "Happy Birthday!"

"Why do you think today is someone's birthday?" I gently asked.

"Did I mess up again?" he wasn't able to explain. 

"What made you think today was a birthday?"

After a thoughtful pause, "Oh, I can't go through all of that."

Turns out he thought it was his birthday (which is 7/4 and today is 6/14) but I am not sure what prompted that.

I think I'll go take a shower and cry.

The lyrics are taken almost verbatim from the Book of Ecclesiastes, as found in the King James Version of the Bible, (Ecclesiastes 3:1) though the sequence of the words was rearranged for the song. Ecclesiastes is traditionally ascribed to King Solomon.

To every thing there is a season, and a time to every purpose under the heaven: A time to be born, and a time to die; a time to plant, a time to reap that which is planted; A time to kill, and a time to heal; a time to break down, and a time to build up; A time to weep, and a time to laugh; a time to mourn, and a time to dance; A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; A time to get, and a time to lose; a time to keep, and a time to cast away; A time to rend, and a time to sew; a time to keep silence, and a time to speak; A time to love, and a time to hate; a time of war, and a time of peace. With Alzheimers's ... there is only time ...

Care Partners

This article was taken from "Perspectives" 

Lisa Snyder, LCSW UCSD Shiley-Marcos Alzheimer’s Research Center 9500 Gilman Drive – 0948 La Jolla, CA 92093 Phone: 858-622-5800 Fax: 858-622-1012 email: lsnyder@ucsd.edu

Creating Caring Partnerships

We frequently hear and read about Alzheimer’s “caregivers.” This word implies that others give care to the person with Alzheimer’s who receives it. In fact, many people with Alzheimer’s or a related dementia are quite capable of being caring to those who are trying to care for them. More recently, the term “care partners” has received some attention as a more descriptive term for the relationships that can occur in the early-stages of a dementia.

We asked people living with Alzheimer’s or a related disorder: What are the qualities of a good care partner?

Their following answers apply to all in- volved in the care partner experience whether you are the person with early- stage dementia or a loved one:

“Don’t gang up on or crowd a care part- ner. It can be overwhelming if too many people are trying to help at once with too many different ideas.”

“The ability to listen and not be talking all of the time is important in a respectful care partnership.”

“A happy person – someone who smiles and tells an occasional joke.”

“It’s good to have things that you enjoy doing together – shared interests and ac- tivities make a more positive care partner- ship.”

The ability to have open communication and say things that are important to you without the other person getting all worked up.”

“Compassion is an essential ingredient in a care partnership – trying to understand what the other person may be going through. Alzheimer’s can be hard not just on me but on those around me.”

“Don’t always do things for the other per- son; partner with the other person so you accomplish things together. My wife and I do the bills together now and although she does the cooking, I try to do the dishes.”

“Put on your ‘listening’ ears – it’s not enough to just hear someone. You have to pay attention and listen to their message without a lot of other distractions.”

“Adjust your expectations of each other. Sometimes my wife wants me to try to do something that I just don’t think I can do anymore. And sometimes I ask more of her and expect her to do too much or am not sensitive to everything she already does for me.”

“Try to reduce each other’s stress level. Sometimes small acts of love or kindness go a long way.”

“Look out for each other’s health. I need help with my medications because I forget what I have to take, but my husband needs to exercise so I make sure we walk every day.”

“Good care partners know when to step in and when to back away. Everyone needs a little space and some peace and quiet.”

Hanger Hell

Can you imagine not being able to figure out how to use a hanger? Let alone which hanger to use for a shirt and which to use for a pair of pants? And when the color of a hanger changes, it becomes something else. Can you imagine?

Caregiver Affirmations

Caregiver Affirmations

by: Janet Edmunson

I will hold on to my passions, because they are the essence of who I am

I will give myself credit for staying strong despite being pushed to my limits 

I will give myself grace when I occasionally blow it

It’s perfectly normal to grieve even before my loved one dies

I will explore life’s adventures together

I will look for the gifts that only this type of tragedy can afford

I will let the love flow, even when all else is lost

I will expect that some people will find it difficult to visit my loved one.

That’s okay—it doesn’t mean that they’ve stopped caring.

I will make it easier to get through difficult times by creating traditions to memorialize my loved one

I will make meaning out of this disease

by Janet Edmunson, M.Ed. and author of

Finding Meaning with Charles: Caregiving with Love through a Degenerative Disease

How To Explain

How do I explain the interaction?
I speak with words, but they echo to the wind.
He responds as if my words were never his words.
And my thoughts echo, reverberate as though I was never spoken.

Its the little things...

It is the little things that do matter in helping to keep Gregory active, involved, respected, and loved. Letting him help as often as possible, even in little ways, helps give him purpose and the sense of sharing our daily life. It helps him to depend on me more when he knows I continue to depend on him. Always acknowledging my appreciation and saying "Thank You" even though I am thanking him about the same things each day and sometimes several times a day, gives feelings of love. Keeping an eye on what he still can do ... at least do today, and letting him do it, allows him to keep his self respect. Not correcting but rather "walking behind and fixing" is also helpful. Telling him "I love you" many times a day, touching his face or back, planting a kiss, all tell him that I am here and will be here to support him.

Both Cases: A Poem

"I will miss you." he said.

"Why?" I asked.

"Because I am leaving." he replied.

True in both cases.

He was going for a walk.

He is becoming less with me.

Happy & Coping

I think I have written this before but after responding to a friend who read some of my Alzheimer's Blog and who I used to teach with many, many years ago, I felt it was worth saying again.

Again, thanks for the kind words. I like to say that on a scale of horrible to horrible it is terrible. But as you could tell from my writing, Gregory is happy and content and I am coping. We both seem to have Piece and Peace of Mind. Thus, we are doing well. I also like to say that if it stopped here I would be grateful but... and I try not to dwell too much on the future. We consider ourselves blessed and wake up each morning to face the day with love and joy. Take care.

m

I haven't been writing much as I have told you previously because of all the time, effort, work, joy, and magic of getting Michael's Museum at the Chicago Children's Museum up and running. Gregory took great joy and pride in coming to CCM with me during the month of April and the first half of May to help with the unpacking and installation of the MM exhibit. One morning he commented in the car, "I really like getting up so early and coming with, it is like I have purpose!" That sounded good to me.


Michael's Museum Exhibit Photos - Michael Horvich - Picasa Web Albums

Gingrich on Alzheimer's

AP – In this image released Sunday, May 15, 2011, by NBC News former House Speaker Newt Gingrich is interviewed …

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YOU MIGHT NOT LIKE THE MAN'S POLITICS BUT WHAT HE HAS TO SAY ABOUT ALZHEIMER'S RESEARCH RINGS TRUE!

Michael

By PHILIP ELLIOTT, Associated Press –2 hrs 15 mins ago

WASHINGTON – Republican presidential contender Newt Gingrich on Monday said Alzheimer's disease is on pace to cost the government some $20 trillion over the next four decades and said boosting federal research money would be a wise investment.

Gingrich, the top Republican in the House during the 1990s, is mounting a presidential campaign on the premise he is a policy heavyweight who can lead a fractured GOP field. His speech to Alzheimer's advocates meeting in the capital largely eschewed politics but made clear his hopes to run as an idea man.

"I want to know, not what we can afford in the federal budget. I what to know what (researchers) can do if they have the resources they need to accelerate the breakthroughs to save lives and to save money," Gingrich said.

"We are grotesquely underfunded," the former House speaker said flatly of health research dollars.

Gingrich, a former Georgia lawmaker, proposed selling U.S. bonds to raise money for Alzheimer's research, which would take federal research dollars out of the political competition for a share of the federal budget.

Gingrich cited figures from an Alzheimer's Association study — conducted by a subsidiary of insurer United HealthCare — which projected the total cost to the U.S. economy of the disease at $20 trillion through 2050.

Another study projected that Medicare and Medicaid spending to care for those with Alzheimer's would reach $800 billion annually, adjusted for inflation, by mid-century. Current spending is $130 billion annually. In terms of costs, the study suggests actual spending of $1.1 trillion through 2050 with the balance of the $20 trillion cost involving lost wages and worker productivity.

The industry-funded study also suggested that a drug that could delay the onset of Alzheimer's by five years could cut government spending by half in 2050.

Gingrich pitched the spending — with a bottom line undefined — as a way to shave the budget. He said that scientific research should be above politics.

"Alzheimer's should be a totally nonpartisan issues because Alzheimer's doesn't' respect Republican or Democrat, it doesn't respect liberal or conservative," Gingrich said. "Alzheimer's affects everybody at every part of American life. Therefore, we should be able to come together as Americans to have a health conversation with no partisanship."

Breakfast Tea

Every now and then something happens that moves me to tears. Every morning Gregory makes his own breakfast. Every now and then Gregory gets confused in the process. This morning such an occurrence has moved me to tears.

"Oh shit!" comes Gregory from the kitchen.

"What's the problem?" I inquire sitting at my computer in the bedroom.

"My tea," comes the answer.

I go into the kitchen to see how I can help. Turns out he forgets to put a tea bag in his mug and this stops him cold. He remembers to set up his breakfast tray, his cereal and fruit are ready, the green mug sitting on the tray. He fills the electric kettle with water and switches it on. Boiling, the kettle turns itself off. This is where the confusion begins. Such confusion that I am not really sure myself what is going on.

"I forgot my tea. I guess I'll have to start over."

"But you just forgot to put a tea bag in you mug." He looks into the cereal cabinet for the answer. I open the tea cabinet, taking out a tea bag and putting it into his mug. I pick up the kettle, pouring the hot water into the mug. Explaining as I proceed.

"That's all there is to it. You don't have to start over. You just forgot to put the tea bag in your mug."

"Oh. OK. Thank you."

Every now and then something happens that moves me to tears. Every morning Gregory makes his own breakfast. Every now and then Gregory gets confused in the process. This morning such an occurrence has moved me to tears.

Gregory doesn't seem too upset by all this. Then why am I moved to tears? At the loss? At his confusion although he doesn't seem too bothered by it? At what it must feel like for him but in my imagination not his? At my fear? Tears are gone now. The day continues.

Hiatus

hiatusnounthe spring hiatus gave us time to rethink our next project: pause, break, gap,lacuna, interval, intermission, interlude, interruption, suspension, lull,respite, time out, time off, recess; informal breather, letup.
Check out michaelcollects.blogspot.com as the opening of Michael's Museum at The Chicago Children's Museum on Navy Pier gets closer: Friday, May 13, 2011.

What's In A Word?

On the way home from the Chicago Children's Museum today, where Gregory was helping me with preparation for the opening of Michael's Museum, it was raining.

I commented, "What a lot of rain we have had so far this Spring."

Gregory replied, "Yes. That's probably why I am feeling so EARIE."

The sky was very interesting with heavy dark clouds as well as white billowy clouds and spots of sunshine.

Gregory commented, "Look at those dark clouds, they are so BLUNDERY."

I kind of knew what he meant. In trying to "live in his world," I replied, "Uh huh."

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.

Generation Alzheimer's: The Defining Disease of the Baby Boomers.

Received this from Diane Wright in an e-mail and wanted to share the important information with you!


Hi. The good news is that death rates for many major diseases - HIV, stroke, heart disease, prostate cancer, and breast cancer - are declining. Sadly, we can't yet say the same about Alzheimer's. This year, the first of the Boomer Generation turns 65. To bring urgently-needed attention to the risk facing the Boomers, Alzheimer's Association recently released a groundbreaking study Generation Alzheimer's: The Defining Disease of the Baby Boomers.

We'd love your help in getting the word out on Michael A. Horvich Cares About People Who Care About Alzheimer's Disease about the important information in Generation Alzheimer's, so we can make sure the public understands what can be done to conquer this devastating disease. I've put together a microsite, making it really easy to grab banners, video, text -- anything you think you can use -- so we can make sure as many people as possible have access to this information:

http://alz-news.org

Thank you so much,
Diane
--
Diane Wright
dianew@alz-news.org
Facebook.com/actionalz
twitter.com/alzassociation

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 : •)

THINGS ARE EVEN

When things are "even," meaning going well, I neglect writing here. Then I feel guilty about not writing since April 11 (that's 6 days) so I have to be careful not to attach that guilt to when things are going well. Get my point? Meanwhile Gregory continues to "progress" and I continue to "cope." But life is good, love is good, and its beginning to look a lot like SUMMER!

Making Up Words

I was helping Gregory with some grooming using a barber's scissors to trim the hair around his neckline. "Wait!" he blurted. "I have to get stattle."

I lost it and began a fit of giggling, he joined in. "I know, I know," he said, "that's just my version."

When I regained my control, I was able to say, "Yes, a combination of steady and stable equals stattle."

How am I able to figure these things out?

Frustration Time Two

Today G and I had another one of our talks. He may or may not remember the talk but it helps me to process and it feels like we are sharing the dilemma of Alzheimer's. He is living it and I am feeling the repercussions of protecting him while dealing with my emotions as I watch his decline.

Today's talk centered around a number of events that took place this weekend. He was having trouble with doing something. I had to step in to help and this made him a little angry and short with me.

In a previous BLOG we came to the conclusion that: "...my helping him has  become a choice between hurting his feeling less or hurting his feelings more. "


This time we came came to the conclusion that sometimes it seems like our choice is his being frustrated when he cannot do something or his frustration when I have step in to help. Either way ... FRUSTRATION.


Luckily (others would say Thank God) the frustration and anger is short lived and we just get on with living our life the best we can. He will usually end with, "I love you very much." I will reply, "That was never in question! I love you too."

Grace

I was watching a series of three short videos for an Alzheimer's drug company that was conducting a survey as to the effectiveness of the videos in relating to caregivers. Two of the videos didn't really appeal to me. One was about a man talking about his father getting used to living with him. Wasn't much emotion there. Another one was about a woman who takes care of her mom now like her mom used to take care of her. Emotional but not my style.

The third I could relate to. The woman was saying that she was better able to have a good day with her mother when she herself was well rested, had a chance to exercise, and didn't feel rushed. I could relate to that. Then she quoted a friend of hers and I could really relate to the quote: "You do not have to care graciously, you just have to care." She responded saying, "I am not always gracious, but I do care!" I could identify with that.

My final comments to the drug company is that very few pictures and/or advertisements talking about dementia did they show married couples, usually it is a child taking care of a parent. And NEVER did I see a situation in which same sex partners were involved in this Alzheimer's journey.

Alzhemer's does not discriminate, it affects all people equally.