It's Your (My) Choice

Advice from "Abraham" doesn't always make sense when it comes to dealing with Alzheimer's Disease. In this case, I think one can attempt to apply the concept. When some activity, interaction, communication, etc goes awry (and I use the word awry alot in my writing) I will try to conscientiously reach for a happier memory or thing I am grateful for today. Maybe that will work. When Gregory forgets how to make the bed, I will think, "At least he knows that bed is where we go to sleep." I'll let you know how this works. When he is fumbling with his fork, I will think, "He is enjoying the food I made for dinner tonight." (He does compliment me about our meals!)

awry |əˈrī| adverb&  adjectiveaway from the appropriate, planned, or expected course; amiss:

http://www.abraham-hicks.com/lawofattractionsource/index.php

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.

No Day But Today (From Rent)

Another song lyrics that put things in perspective when I am feeling down. Makes me cry. Makes me feel better. I love him and he loves me!


NO DAY BUT TODAY
From "Rent"
As Sung by Idena Menzel


There’s only us, there’s only this
Forget, regret, or life is yours to miss
No other path, no other way
No day but today

There’s only us, only tonight
We must let go to know what’s right
No other road, No other way
No day but today

I can’t control my destiny
I trust my soul, my only goal
Is just to be

There’s only now, there’s only here
Give in to love or live in fear
No other path, No other way
No day but today

There’s only us, There’s only this
Forget, regret, or life is your’s to miss
No other road, no other way 
No day but today


No day but today
(No day but today)
No day but today
(No day but today)
No day but today
(No day but today)
No day but today

Caregiver Affirmations

This is taken from the "Fearless Caregiver Newsletter," Thursday, November 18, 2010, Issue #8, www.caregiver.com and was written by "Joe in Illinois."

Caregiver Affirmations

I forgive myself and others, I live in trust for the future and I embrace this moment in life.

I take time to cherish myself, to enjoy life and to accept the support and company of others.

I accept the mystery of life and suffering; I know that the important gift I give is my healing love, and caring, listening presence.

I eat well, I exercise, I get enough sleep and I speak kindly to myself.

I keep a sense of humor and life life in gratefulness for all the small gifts of life, and I am open to my source of power beyond myself.

I set limits with people and make my own needs and feelings known to others.

I am a wonderful source of healing for those that I care for because I first love and care for myself.

Friendship

A small, clear plastic box no larger than 2" x 1" x ¾". Wrapped with a celadon green brocade ribbon. Inside a tiny vial filled with brownish dust and topped with a rubber cap. Also inside  a tightly rolled, wrapped carefully with colored thread piece of paper. Tucked in the back, between the box and the ribbon a tiny note card, folded in two. "MAGICAL DUST (use sparingly) and COMPLEX and SACRED INCANTATIONS." Love Jan & Jake.

This wonderful gift of friendship was created for me based on a comment made to one of my more "difficlt time coping" entries. The comment to my entry said, "I wish there were some magic dust or complex incantation I might use to ease all this pain and sadness. It hurts me to hear you hurting. (I know, I know....it's not all the time.) I love you. I love Greg

CLICK HERE TO GO TO ENTRY

Just a Flash

Last night I had just a flash of how sad and lonely I really am. I was able to swallow it as I fell asleep knowing today I would feel better and I do. We had been watching "The Secret Life of Bees" (DVD) which is quite a powerful movie dealing with childhood, parents, trauma, racial tensions in the 60's, life, love, and death. Apparently the movie affected Gregory quite a bit but it didn't show until he had a "meltdown" when asked, "Why didn't you take my water?" It is his job to fill the water glasses we use in the TV room and put them by our side tables for bedtime. He had refilled his but left mine behind. It was just a question. He got all upset, flustered, couldn't express himself and for some reason blamed me and waved me away.


I took it personally when it was really the big "A" speaking. None-the-less I took it personally. I finished closing up the house and sat, for a while, in the dark living room. I felt myself shutdown as I realized that in spite of our wonderful family, friends, and acquaintances; I feel so alone. Alone as in the end, when you die, you must do it alone. The best I could do was feel numb.


More and more, my conversations, mundane or intellectual, are with myself. Most of the time I keep my observational comments to myself because Gregory will not understand, will have missed the item my observation was based on, will reply in relation to what he was thinking not what I was observing, or I will have to repeat because he wasn't focused and ready to listen.  Again ... and again. 


I continue to take the risk of having conversations and asking him questions. I still ask him for help, to do something for me. Very often it backfires and I have to explain again, remind when he forgets to follow through, correct his misunderstanding, give step by step directions, or take over myself. 


Very often after my reminding or correcting he will reply, "I knew that." When I try step by step directions, he is aware enough that he waits for the rest of the information but when given, gets confused and cannot follow more than one step at a time. When I have to take over, no matter how nicely I do it, it is awkward for both of us.


The alternative is to ask, say, and expect nothing and I cannot believe that is good for Gregory's self confidence. But I have to remind myself that if I believe this is good for him and continue to hold expectations, no matter how minimal, I must also be ready for and risk his meltdown and/or my shutdown. 


I think that I have created a fantasy world in which I feel like I am in a relationship that resembles normal. Every now and then the vail parts and I get a glimpse of reality. It looks much like Hell. I hate to be so hard but I think I might be right about this, dear.

I Choose Joy

"I am an avid reader of "The Daily Word" from Unity Temple, a positive approach to spiritual living. You can find out more at this link: Daily Word, Unity

Most often, the day's reading is exactly what I needed. I have to be honest, I am not sure that I believe in GOD in the religious sense of the concept but think there may be some form of a Spiritual God and therefore Unity has always "spoken" to me. When reading a day's passage I am apt to skim over the references to Jesus, God, etc but the strong message always comes through. See for yourself!

Today is Monday, November 22, 2010. The reading in Daily Word is called: "I choose joy." I have recreated it here with a few changes (mainly omitting references to God.) It was meaningful to me this morning especially after a series of extremely difficult exchanges with Gregory right before bedtime. My loss of patience affected me so that I could not apologize, ignore, or sleep well. I just had to get through the night, which I did. This morning I am back to "normal" or as I like to call it "even" since "normal" will probably never be part of my life again!

"The greatest joy of an abundant life may simply be the ability to choose my responses and create a life of fullness regardless of any outward appearance or situation. In the midst of any circumstance, I can choose to be happy and joyful even as I respond to the needs of the moment.


"I choose to rejoice in the good in my life, giving thanks for a world of plenty. Looking beyond seeming lack and limitation, I recognize the spiritual abundance that is present.


"I choose to express generosity and gratitude towards others, and life becomes more precious and abundant. I choose the joy of living in the fullness of good right now.