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 …

• Play Video
  

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.

A Dream 03/31/11

There was some kind of catastrophic disaster. Fire was all around. Then there was an explosion or fire and light and on the other side life had changed. Many people including myself were burned beyond recognition but we were alive and functioning. New ways of doing thing had to be developed because people could barely move. A new language formed because people could barely talk. The interesting part is that this was NOT a nightmare. There was no pain, no fear, no depression, no anxiety. People just continued doing the best they could living their lives. Do you see a parallel with being a caregiver for or the person afflicted with Alzheimer's? I do. I also see that something that could have been a catastrophe ended up reflecting the ability of human nature to rise to the occasion.

Why is it?

Why is it that I still have expectatons? Why is it that I still think he can learn? Why is it that I am surprised when he doesn't make connections? Why is it that I still ask him to do things to help me? Why is it that I still reason with him. Why is it that I still discuss things with him? Why is it that I still get angry and frustrated with him?

I guess because it is a measure of my respect for the person he was and is. Should I treat him like an idiot? Should I treat him like a child? Should I treat him as though he doesn't exist, or matter, or have emotions? I don't think I could do that.

So I just have to remind myself that when he doesn't meet my expectations, when he can't learn, when he can't make connections, when he can't help, when he can't be reasoned with ... I need to not get angry or frustrated ... just be patient and compassionate. The choice is mine.

Happy Birthday Michael. March 27, 1945

Adeline Horvich. R.I.P. March 27, 2010

Predictibablity

The green plants are always there,
Sitting on the bedroom bookcase top,
With several other items of interest.

Nothing needs be done,
No decisions made,
It always remains the same.

The living room window sill,
Sports in a row - Buddha, Ganesh,
An African Protection Fetish.

Nothing needs be done.

No decisions made.

It always remains the same.

Each night at bedtime they are tapped lovingly,

One by one in his concentrated way,

Counting on at least one predictable, familiar experience.

Tonight

Tonight he forgot how to put body lotion onto his hand. It hovered above the pump, retreated, approached, retreated, approached. Finally he figured it out.

After reading for awhile, he put his book down on the night table, picked up the case for his reading glasses, opened it, closed it, then realized he still had his reading glasses in his hand. He corrected the situation in silence. Unnoticed I watched.

He fluffed his pillow, laid down, said goodnight to the plants on the bookcase, and turned off the lamp. Some solace in that I guess.

When Teaching and Learning No Longer Work

What happens when teaching and learning no longer work? Think about that one!

Letting Go

After the events, probably usual events, of going to bed this evening upset me I went into the closet, no lights, and cried, no longer productive nor comforting to cry in the arms of my love. And as I cried and realized why I was upset, I whispered over and over, "It is so hard to let go. It is so hard to let go. It is so hard to let go."

Then my mind said to me, "There is power in words. If you say it is hard then it will be hard!"

So I started chanting, "I am letting go. I am letting go. I am letting go." And as I chanted I became more in touch with my emotions, cried harder, cried tears, cried grief.

Maybe I can tell myself to "let go" before I get upset ... "but is is so hard." Maybe that is a good compromise, "I am letting go and it is hard."

Mary's Mother

Received this lovely e-mail this morning and wanted to share it with you.

Michael

I learned to meet my mother, brand new, every time I saw her.... I was always thankful she wasn't in pain and didn't know sorrow... She was like a child. She even forgot that she was once petrified of dogs... how wonderful that she forgot that horror. She did not suffer, she just didn't remember things. Her mental buffers were no longer full, overflowing with useless trivia, data, "to do" lists and reminders. She marveled at life, and loved watching finches fluttering around the bird feeder in the back yard. Her life became simpler each day. I often envied that simplicity and sometimes wish I were so lucky.

I love your sweet blogs. Thanks for sharing your journey.
Aloha from Kauai
Mary

The Journey

This poem was shared with me by my friend Pat. I agree with her comment: "It makes me feel a little breathless."

The Journey

One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice--
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"
each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do--
determined to save
the only life you could save.

Mary Oliver

Only Two

Gregory and I had a long conversation today.

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

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

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

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

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

We laughed.

Me or Him?

After seeing a sign on the elevator and not knowing my opera performance schedule, I said aloud, "I don't know if I will be here to go to the Condo Association meeting."

Gregory responded, "If he isn't going, I'm not going."

I smiled.

Conversing With My Love

Like the broken glass of a window pane 

His thoughts are fractured.

‘This’ doesn’t follow ‘that’

And next is nowhere to be seen.

Like flocks of sparrows

Letters organize into words

But without meaning

Without understanding.

Like prisoners escaping into the streets

Sentences break free of logic.

They no longer reach their end

And sometimes start past their beginning.

Like runners passing in leaps and bounds

Time avoids smooth ticks or tocks.

We spend our days together as they come

And as they go or as they have or haven't been.

Just Checking In

Hi. It's been a while since I've posted so I guess you can assume that for now (how ever long that may last) things have settled down. That either means that Gregory's changes and lapses have slowed down or he has not been challenged or confused recently or it means that I have reached a new level of coping, supporting, anticipating, covering, running interference, etc.


Oh, did I mention that that last Tuesday: 1) He didn't remember how to use his key to get into condo ... but did have sense to get help from management office. 2) Because the ususal “lunch meat” in the refrigerator ran out I left him a tin of tuna for lunch but the change caused him to be totally confused about how to make lunch ... but did have sense to go out to a restaurant. and 3) He forgot how to run DVD again even though it is “one button on” and “the same button off." Then he knew how to turn off the DVD after the movie with the “one button” ... but when I complimented him, he thought he had done it all wrong and apologized.


But you know what, I remained even and that helped both of us.

Half Full or Half Empty

Is the glass half full or half empty? At dinner, I usually drink two glasses of water and Gregory usually doesn't drink any of his. The usual routine is that I hand him my empty glass and he gets me a refill from the water tap in the refrigerator. Sometimes he asks if I want more ice.

This evening I handed him my glass and asked for "A little more ice also please." In the time it took for him to put my glass down on his place mat and finish chewing his mouthful, he forgot which glass was mine.

First he picked up his glass but when he got to the refrigerator he realized it was already full. He brought it back. Put it down. Studied the area. Then pointed at the empty glass and said, "This one must be mine." Which confused him more.

"No, mine is the empty one."

"Oh." He picked up the empty one, took it to the refrigerator, filled it half way, and returned it to me. I thanked him, not commenting on the lack of any additional ice.

Now you tell me, half full or half empty?

A Recurring Theme

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Unbelievable

Amazing how the human brain works.

Amazing how the human brain doesn't work.

Gregory was beginning to get his breakfast together. I was awake so I offered to make him oatmeal. He liked the idea. I said, "Get everything else ready for your breakfast then I will make the oatmeal. Besides cereal he makes some kind of protein in the way of tinned fish or sausage, fresh fruit, and hot tea. Pretty healthy huh?

To get to the point, my offer to make him oatmeal (to be his cereal for the day,) totally got him off track. He lost all the details of what to do to make his breakfast. Forgot what to do before I made the cereal. Couldn't think about the protein, couldn't figure out the fresh fruit, put the box of tea back in the cabinet, and then stood there, confused.

I repeated, "Do everything you usually do for breakfast, but I'll do the cereal."

Blank.

I took him over to the cabinet where the pictured sign is posted that shows what he needs to do each day for breakfast.

Blank.

I said, "Tell you what. Forget what I said. Make your own breakfast." I put away all the makings for oatmeal. "I'm sorry I confused you. Make your own breakfast. I'll do oatmeal for both of us on another day."

"OK," he replied, "that would probably be better."

At this point in my writing I just asked him if he was back on track and he answered, "Yea."

Meanwhile I am amazed at what does (or doesn't) go on in his brain.

The Way We Speak Now

This piece was shared with me by my friend Pat. She said, "This is a lovely piece; I think you will enjoy it too. I am not recommending it b/c of Alzheimer’s, but just because it is evocative and strange and imaginative."


I think it is strong for anyone dealing with Alzheimer's as well. Let me know what you think.


The Way We Speak Now
by Angi Becker Stevens

art by Gay Degani

The first word we lost was the name of that thing with the buttons, the one you speak into to talk to someone who is far away or at least not in the same room. The thing you call people with. We woke up one day and the word was just gone, no one anywhere could remember it. It even vanished from dictionaries, as far as we knew, though in all fairness no one could recall how to spell it to look it up. At first we thought it might just be a fluke, but a few days later another word went missing, this time the word for those gray strips of pavement—not roads, but the ones for walking. After a few more words had disappeared, we realized it was just going to keep on that way. There didn't seem to be any connection between the things that no longer had names; some were objects and some were places and some were feelings or foods or parts of the body. The tall things with leaves that grow out of the ground and up toward the sky, those things we get wood from. The things we put on our feet before we go outside. The joint where our legs bend. The specific emptiness we feel when we need to be fed.

Some people have had the idea to try to come up with replacements, but the new words just won't stick, as if this is not really a matter of words abandoning us, but of things that refuse to be named.

At some point we lost track of how many words have gone. There's no doubt anymore whether they have been vanishing from dictionaries as well—dictionaries are getting thinner. Other books are not getting thinner, but are merely developing empty spaces. I wonder how long it will be before they are filled with blank pages, every last one turned into a sketch pad, or a journal if there's anything left to write.

So far, we have managed to adapt. There are ways to describe almost anything. Sometimes I think about this game we used to play when I was a kid, where you tried to make your teammates guess a word without using a certain list of closely related words, like you would not be able to use the word "orange" if you were trying to make someone guess "carrot." When we lost the word for the color of the sky, I thought about how maybe playing that game was good practice. I can't remember the name of the game, but I don't think it's a vanished word. I think it's something I just forgot on my own.

The words that are gone are like hundreds of tiny phantom limbs. They feel constantly like they are on the tip of my tongue. The sensation reminds me of the way I felt during the final few months my lover and I spent together, like I always had a mouthful of words I could not form the right shape for no matter how many ways I tried to arrange my lips and my tongue and my teeth. It was like waking up on the very edge of remembering a dream, that feeling of being so goddamn close to something but still so far away it was useless, might as well have been on the other side of the universe.

Sometimes I wonder how many words have disappeared that I have not even noticed because they are words I seldom ever use. It would probably take me a long time to realize, for example, if "horticulture" or "uvula" or "bismuth" went away. Every once in a while I flip through the dictionary, just to remind myself of how much is still left.

The way we speak now: like we are always trying to explain things to visitors here who barely speak our language. We say: the clear smooth stuff that you look through to see outside if you are indoors. We say: the box with the moving pictures on it that we watch to forget real life. We say: the buildings we live in. The animals with feathers that can usually fly but sometimes cannot. The specific injury when you touch something too hot or stay too long in the sun. Sometimes I think it sounds like a kind of poetry, and other times I just think we all sound simple-minded and slow. We are all like visitors here now.

It didn't bother me when we lost the word for the metal things we ride in to get from one place to the next. But I cried when I realized we'd lost the name for the tiny dots of light you can see up in the sky in the nighttime. I can't explain why, but that was the only word I really mourned, a loss that ached like a small death.

I think about how my lover and I were always trying to find more words, as if language was the thing that could put us back together again. But maybe what we needed all along was to say less. When I think of him now, what I remember is not anything he ever said. I remember breathing into his neck, and the way I would slide my arms up inside of his jacket not for warmth but because I could never figure out how to feel close enough to him. What I felt was always a wanting—I wanted him even when I was with him, a longing lodged squarely beneath my breastbone, inside some dull-thumping muscle I used to have a name for. And I wonder sometimes what would happen now if I called him and said nothing at all, if it's possible somehow for the mere sound of my breath to release all those ghosts of words trapped inside my throat, to tell him all the things that have become unspeakable.

"http://www.smokelong.com/flash/angibeckerstevens31.asp

All content in SmokeLong Quarterly copyright 2003-2011 by its authors.

Angi Becker Stevens' stories have appeared in a variety of publications, including The Collagist, Pank, Monkeybicycle, Wigleaf, and Best of the Web 2010. She lives in Michigan and has one daughter, two partners, and a small assortment of oddly-sized pets.

Nominated for a Pushcart, Gay Degani has published in journals, anthologies, and her own collection, Pomegranate Stories. A list of her online writing can be found at Words in Place. Her artwork has been featured at Faraway Journal, 3 A.M, and Smokelong Quarterly. She’s a staff editor at SmokeLong and managing editor of EDF’s Flash Fiction Chronicles.