Dayenu: A Jewish Song

For me, Judaism is more the cultural and traditional foundation of my childhood and therefore my adulthood, than it is a religious calling. But those traditions run deep.

Dyenu (Hebrew:דַּיֵּנוּ) is a song that is part of the Jewish holiday of Passover. The word means approximately "it would have been enough for us", "it would have been sufficient", or "it would have sufficed." This traditional up-beat Passover song is over one thousand years old. The song is about being grateful to God for all of the gifts he gave the Jewish people, such as taking them out of slavery, giving them the Torah and shabbat, and many other blessings he has bestowed on his people and had God only given one of the gifts, it would have still been enough. This is to show much greater appreciation for all of them as a whole.

Often people will offer commiseration at "how horrible Gregory's Dementia/ Alzheimer's must be for you as his life long partner." I agree it is in that I must continue to live my life while my best friend, person I love most in the world, soul mate slowly disappears and is unable to give me the support in the ways that he used to. 

The tradition of singing "Dayenu" humms its melody in my head, when Gregory spontaneously (once in a while) says, "I love you," that is enough for me. 

When I see him smiling, or sleeping, or laughing; that is enough for me. 

When I say, "Gregory, you know what?" And he replies, "What?" And I say, "I love you." And he replies, "I know." This is enough for me.

When we both get the giggles, that is enough.

When I ask for a kiss and have to go in to give the kiss to him or when I ask for a kiss and he leans in to me to give the kiss to me, that is enough.

When he spontaneously reaches for my hand to hold or reaches out and gives me a hug, these are enough.

When I ask, "Are you happy?" "Are you OK?" and he answers, "Yes." Enough.

When we sing together, more than enough.

Caring for and loving someone with Dementia/ Alzheimer's is about being able to grow and change with the times and in knowing how much is enough. Perhaps that is good advice for anyone, with or without having to deal with Dementia/ Alzheimer's ... Knowing how much is enough.

Joyful Heart

Noticed that recently I have been in a good place. Not sure if Gregory has plateaued for the time being or if I have. I have been calm, patient, understanding, respectful. I have felt peaceful at a 9.5 out of 10 level. It feels good to feel good. Few if any apologies necessary, little if any guilt, lots if even abundant amounts of love.

Why? On one hand don't question or analyze the feelings just enjoy them. On the other hand look, learn, and grow.

Maybe things feel good because of how well our "Nobel Experiment" is working with Ken, Gregory's companion, living with us and while not needed all the time, being available 24/7.

Maybe Gregory is at a new plateau and we have learned how to deal with and accept the new challenges.

Maybe I have grown and continue to do so with the progress of my meditation and yoga classes with Corinne.

Maybe it is SPRING and the warmer weather and smell of tulips and hyacinths in the flower market air.

Maybe it is because of the renewed flow of creativity with my new endeavor at The Galleria, belonging to an artist collective, having a space in which to sell the results of my creativity, having fun with marketing and signage and display.

Whatever the reason, it feels good.

The Truth of It

It is difficult for me to talk about all the things that Gregory and I go through. I had to think about what I wanted to say about tonight's experiences, felt a little embarrassed to be talking about them, but decided that in the hopes of sharing everything about our Journey with Alzheimer's I should not hold back.

Gregory forgot to wipe after his bowel movement earlier this evening so his underpants were a mess as was his behind. I started cleaning him up but decided to put him in the shower instead.

He fumbled with turning on the shower so I took over. Once he was in the shower, I pretended to use the toilet, so I could watch to see how much he remembered about taking a shower.

He shampooed his hair and then tried to use the rest of the shampoo on his hands to wash his arm pits, genitals, and behind.

He did not rinse his hair as he continued and got shampoo in his eyes. I told him to rinse. He did.

I asked him to put more soap on his hands to wash but he couldn't remember how to get the soap out of the pump dispenser.

Finally I took off my sleep clothes, got into the shower with him, and took over washing his "privates." I got out to dry myself while he rinsed.

He did not know how to turn of shower but instead turned it to the hottest setting. I intervened.

I gave him his nightly ration of chocolate and began my stretching exercises. I realized why I was angry at him, why I needed to tell him "at this rate diapers are next." Why I had to put into words the things he could not successfully do this evening. Why I had to be abrupt in my helping instead of kind and gentle.

The reasons, I realized, are that I do not want him to have to live  like this. I do not want to live like this. I do not want to accept that he will continue to get worse. I do not want to believe that I cannot make it all right, that I cannot make it all better. I do not want to think about not being able to guess what to do next or what he needs at any given moment.

I don't want any of this, but have no choice. I love this man, or at least who this man was once upon a time. I fear what this man will become. And who I will become.

Why?

You are not invited to answer this. Most people do not comment anyway and this time you are off the hook. This is a rhetorical blog.

The question is why am I so angry? Why do I loose my temper? Why am I at times close to raging?

Why can't I just be accepting? Why can't I just be patient? Why can't I just be calm?

Every night G reads three words he asked me to post on his night table: SIMPLICITY, PATIENCE, COMPASSION. G is and has all three. Why can't I master that?

I am forgiving and so is he!

Still I behave...

Still I behave as though Gregory does not have Alzheimer's. I get angry when he gets dumb. I take offense. I refuse to believe. I am rude and disrespectful. Maybe today I will change.

Today he wasn't able to "Please get me a kitchen towel from the guests bathroom." He confused the difference between "Yuck" garbage and "Recyle" garbage again. He tried to grab the hot cookie pan thinking he was helping. Couldn't look at a Lego block pattern, find the piece, and put it in place. Uses "him" when he means "her." Uses his hands more and more to facilitate his knife and fork. He forgot the steps involved in drying the dishes. Etc, etc, etc.

I did two things correctly today.

When he couldn't do the Lego blocks, I sat down next him and did them myself talking through each step. Later he said he had fun helping with the Legos.

We made Gregory's Great Grandma Barbara's Christmas Cookies this afternoon. He  "remembered" them a week or so ago (talking around them until I was able to guess what he was talking about) and asked if we couldn't make them this year.

I bought the ingredients, laid out the cookie trays. I read the recipe and figured out the directions. I measured. I boiled. I sifted. I added ingredients. He mixed the dough. I formed the cookie balls. I pressed them with a glass. I put them in the oven. I timed them. I took them out and let them cool. I put them on the cooling rack. I piled the cool cookies on one tray. I put them in sealed container with sliced apples to cure until Christmas. I cleaned up after. He dried the clean items (after I talked him through how to dry.) WE had a fun time. I am tired. He is happy.

Acceptance

I have previously written a piece about "Acceptance" as it relates to Gregory's dementia. I felt that while I might "get used" to his Alzheimer's diagnosis and the changes and journey we have been on, I would never "accept" it.

Several years after I had written that piece, I looked more closely at "Acceptance" and redefined it for myself. I will post my previous writing again but first wanted to post this one.

It is a look at acceptance from one of the many times that the Daily Word has "spoken" to me with words of wisdom. As usual, I have adjusted it slightly (with cross outs and red additions) to fit my point of view. See what you think.

About Daily Word | Pray | Affirmations | Articles | Search Archives | Subscribe | Shop | Donate Wednesday, November 16, 2011 ACCEPTANCE I accept and bless myself and others. Acceptance is a powerful word, for it implies a willingness to listen and be open. Acceptance does not necessarily mean that I adopt another's point of view; it means I accept the right of another to have views different from my own. I accept people of different faiths, cultures and lifestyles.  (I would add that it deals with acceptance of things one cannot change and learning to live with love and understanding while joining the journey others are on, like Alzheimer's Disease.) Each person is a child of God--divinely created and divinely guided. I accept myself as well. I do not judge harshly my past mistakes or perceived short-comings. I give myself the freedom to make mistakes, to have a unique point of view and to continue to learn and grow as a spiritual being. By accepting myself and others, I embrace differences and celebrate the uniqueness of every individual. (and every situation.) Do not judge, so that you may not be judged.--Matthew 7:11

What if IT happened to me?

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


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


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


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

Let Go

I have mentioned before that I find great solace in Unity Temple's "Daily Word." Not every day speaks to me but most often it does. I also clarify that I am a spiritual person not a religious person and continue to figure out what this thing called "God" is all about. You will note below that often I "alter" the religious overtones and make them my own. I am able to take the daily word at its word level and often the words make sense to me.

I found this entry a good suggestion for dealing with stressful interactions with Gregory. It addresses "one by one each concern for my life and the lives of my loved ones," which comes in handy, but I apply it instead to the difficulty of the moment and find that I am then able to respond calmly, lovingly, helpfully and not angrily or with frustration.

Try it...

About Daily Word | Pray | Affirmations | Articles | Search Archives | Subscribe | Shop | Donate Monday, August 22, 2011 LET GO of the moment , LET GOD I release my concerns, certain of God's good. Release is an act of confidence, not failure. In times of stress, I take a moment to find the gentle rhythm of my breath. If I feel tension, I relax my body and allow my mind to experience a moment of peace. I breathe in and out with quiet awareness. On my outward breaths, I release one by one each concern for my life and the lives of my loved ones. On my inward breaths, I accept the assurance of right outcomes. I let go of my need to control and to know how everything will unfold. New ideas and insights are revealed in divine time and order. I trust myself. I trust in God--the Infinite Source of healing and resolution. I will know what is mine to do, when it is time. The Lord is good to all, and his compassion is over all that he has made. --Psalm 145:9

Helpful Hints

These hints were taken from Perspectives: A Newsletter for Individuals with Alzheimer's or a Related Disorder. They were told by the person diagnosed with the cognitive imparement. See ordering information at the end of this post.

1) If someone puts me under pressure to remember an appointment, issue, or location of an item, it can almost become impossible to re- trieve the information. I will ask the person to give me some time (not under pressure) and then I can generally respond rather quickly.



2) Friends of the person with memory loss should be encouraged to give their name when they make a phone call or meet on the street because the person with memory loss may not be able to re- member your name.


3) Friends and family need to recognize that they can’t control the course of our memory condition, but they can team with us rather than attempting to control us.


4)"I find memory loss is in some way very freeing. You don't have to remember yesterday or tomorrow, you just live to- day,”

SUBSCRIBE TO Perspectives
The annual cost of four issues of Perspectives by surface mail is a suggested $20.00 donation or FREE by email. Please complete and mail the information below to begin a print subscription, or email lsnyder@ucsd.edu to request an electronic subscription.
Name____________________________________________ Address__________________________________________ ________________________________________________ Phone/Email_____________________________________
For surface mail, prepaid orders by check or money order only (payable to UCSD ADRC). International orders must be received payable in U.S. dollars on a U.S. affiliated bank. Please add $2.00 for postage for international subscribers. Mail to:
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

9500 Gilman Drive – 0948 La Jolla, CA 92093  

Without Warning

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

Click here to see a video about WITHOUT WARNING.

Hearing vs Listening

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

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

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

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

So many lessons.

Unity's Daily Word Magazine

Escape

When I tell my therapist that sometimes I feel like I cannot ESCAPE the 360 of caregiving for Gregory, he helps me reword it. He says that if I was trying to escape I wouldn't be sticking it out and I wouldn't be giving my all to keep Gregory safe, content, and to maintain purpose in his life.

Perhaps what I am looking for is just a "little time away" without the caregiving sitting in a little corner of my mind needing attention. I have slowly learned to find those free moments and recognize them when they do arrive. More later.

When I leave him alone I trust he will do well (and I will continue to leave him until he does not do well) but I call in to see how he's doing. Or he can still call me when he gets into trouble. Before I leave I have to set up his meal.

When he is with me I monitor his whereabouts and sometimes have to coach his behavior. I help him choose clothes and notice the weather. I double check that his cell phone is on and that his pockets are filled. We bring water for the car. I make sure a jacket is with us if it might be cool or air conditioned. I order for him at the restaurant, 

When we are fast asleep, like the good mother who knows when the new baby needs her, I am instantly awake when he needs me. Through my own exhaustion I soothe his nightmares, help calm his hallucinations, double check to make sure he is just up to the bathroom or that he does get up to the bathroom so as not to wet the bed.

I organize outings with friends and organize parties in our home because he thrives on being with people. I do all the planning, the work, and the clean up. But worth it because he loves it. We also go to movies, theater, field trips, museums, etc.

I have learned to search out those "time away" moments and to see them when they do arrive. When he is fast asleep, I am free. When he is reading in the living room, I am free. When I get involved in a good book or movie, I am free. When I go for a walk by myself and notice the flowers, I am free. When I get an hour massage, I am free. When I am holding his hand, I am free. When I remember that I do all of this out of love, I AM FREE!

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.

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

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."

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."

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."

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.

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.