FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!
PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.
Monday, December 30, 2013
Recently,I overheard a mother and daughter in their last moments together at the airport as the daughter's departure had been announced. Standing near the security gate, they hugged and the mother said:"I love you and I wish you enough."The daughter replied, "Mom, our life together has been more than enough. Your love is all I ever needed. I wish you enough, too, Mom." They kissed and the daughter left.The mother walked over to the window where I sat. Standing there, I could see she wanted and needed to cry.I tried not to intrude on her privacy but she welcomed me in by asking, "Did you ever say good-bye to someone knowing it would be forever?" "Yes, I have," I replied. "Forgive me for asking but why is this a forever good-bye?""I am old and she lives so far away. I have challenges ahead and the reality is the next trip back will be for my funeral," she said.When you were saying good-bye, I heard you say, "I wish you enough." May I ask what that means?" She began to smile. "That's a wish that has been handed down from other generations. My parents used to say it to everyone." She paused a moment and looked up as if trying to remember it in detail and she smiled even more. "When we said 'I wish you enough' we were wanting the other person to have a life filled with just enough good things to sustain them". Then turning toward me, she shared the following, reciting it from memory,"I wish you enough sun to keep your attitude bright.I wish you enough rain to appreciate the sun more.I wish you enough happiness to keep your spirit alive.I wish you enough pain so that the smallest joys in life appear much bigger.I wish you enough gain to satisfy your wanting.I wish you enough loss to appreciate all that you possess.I wish you enough hellos to get you through the final good-bye."She then began to cry and walked away.They say it takes a minute to find a special person. An hour to appreciate them. A day to love them. And an entire life to forget them.t the airport as the daughter's departure had been announced. Standing near the security gate, they hugged and the mother said:"I love you and I wish you enough."The daughter replied, "Mom, our life together has been more than enough. Your love is all I ever needed. I wish you enough, too, Mom." They kissed and the daughter left.The mother walked over to the window where I sat. Standing there, I could see she wanted and needed to cry.I tried not to intrude on her privacy but she welcomed me in by asking, "Did you ever say good-bye to someone knowing it would be forever?" "Yes, I have," I replied. "Forgive me for asking but why is this a forever good-bye?""I am old and she lives so far away. I have challenges ahead and the reality is the next trip back will be for my funeral," she said.When you were saying good-bye, I heard you say, "I wish you enough." May I ask what that means?" She began to smile. "That's a wish that has been handed down from other generations. My parents used to say it to everyone." She paused a moment and looked up as if trying to remember it in detail and she smiled even more. "When we said 'I wish you enough' we were wanting the other person to have a life filled with just enough good things to sustain them". Then turning toward me, she shared the following, reciting it from memory,"I wish you enough sun to keep your attitude bright.I wish you enough rain to appreciate the sun more.I wish you enough happiness to keep your spirit alive.I wish you enough pain so that the smallest joys in life appear much bigger.I wish you enough gain to satisfy your wanting.I wish you enough loss to appreciate all that you possess.I wish you enough hellos to get you through the final good-bye."She then began to cry and walked away.They say it takes a minute to find a special person.
Saturday, December 28, 2013
Friday, December 27, 2013
Yesterday I sat in a dry sauna and wondered,
if I sat here long enough,
with all my juices running out,
would I disappear?
Would I simply become vapor?
insidiously colonizing his core.
No longer knowing what a fork is
or the function for kinds of his clothing
or even the meaning of words,
he is disappearing.
While his shape is here, his smell and his sound,
he is being swallowed up,
His person is flying away,
slowly dispersing itself into the bone and sinew of others' memories,
leaving all of us,
clutching for each other.
All this was done with love and patience and kindness without making him ask first or struggle trying first. This has always been the conundrum for me, in which if I do it all, he looses the ability more quickly but if I hold back we run the risk of frustration and fear. He has gotten to the point recently that I have just decided to do it all for him because he cannot do it for himself anymore.
After we were finished, he held me and cried into my shoulder muttering about how proud he was of himself that he was able to do it all with out help. So my doing it all for him caused the memories of his doing it all for himself to be strong and the ruler of his emotions. A strange lesson for me to learn but a good one.
Thursday, December 26, 2013
Wednesday, December 25, 2013
Tuesday, December 24, 2013
Monday, December 23, 2013
As you know Gregory's recent downhill adventure, along with my journey beside him, has been dramatic.
A month ago, I took him off his meds because it was not obvious that they were doing anything and he was having trouble swallowing pills (a battle every morning and bedtime.) I did this with an OK from his doctors.
I decided that I would observe to see if taking off the meds made a big difference. Well it has. His abilities have been plummeting and all kinds of bizarre behaviors are showing up. It could be just a function of this next stage of his Alzheimer's or it could be because he is off the meds.
The other part of the experiment was that when first put on the meds some ten years ago, his abilities peaked with improvement. The doctors were surprised because the meds are supposed to "slow down loss" not "peak improvement."
I thought that if I took him off meds and watched and then put him back on and watched I might see a difference and thereby proof that the medications were worthwhile.
So we will go back on the meds in January.
Sunday, December 22, 2013
Gregory and I have looked at every Viking River Cruse video sent to us via e-mail and talk about how wonderful the experience would be to travel the rivers of the great cities of the world, using the ship as our hotel and waking up to tour a different city every day or two. No packing and repacking, no busses trains or airplanes. Good food, comfortable travel.
But the reality is that Gregory is past the ability to travel and I am past the ability to support him so he can travel. It is a sad realization but one that I probably need to be honest about.
Even packing and going to visit family in Michigan is full of difficulties in planning, routine, time, and space. Then reentry at home, where you would expect home routine to help, takes its toll.
I am soon to release an update to family and friends and I will post it here as well but things have really been downhill for Gregory the last month or two. Things have been changing so quickly and basic skills have been disappearing so quickly, that I haven't been able to keep up with knowing how to cope with and/or accommodate Gregory with his losses.
Stay tuned ...
Saturday, December 21, 2013
Friday, December 20, 2013
ZERO ability to communicate
ZERO ability to express self (words, gestures, showing)
ZERO ability to engage in time
ZERO ability to engage in activities by self
ZERO ability to dress self
ZERO ability to undress self
ZERO ability to identify bodily function needs (hunger, thirst, elimination)
ZERO ability to identify discomforts (cold, warm, in pain)
ZERO ability to toilet self (urination, defication)
ZERO ability to eat without continued prompting (breakfast, lunch, dinner, coffee & cookies, snack)
ZERO ability to assist with household chores
ZERO tolerance to be by self
Can watch TV
Can thumb through newspaper (not read necessarily)
Can thumb through a book but not read it
Can listen to music
Can pet cat
Can go for a walk
Can say "I love you."
This morning a new development:
"What is the purpose of this?" asked Gregory holding up the undershirt that was waiting for him on the bench in the bedroom as he was getting dressed.
"An undershirt. It goes under your shirt." I replied.
"Isn't that amazing!" he mumbled as he struggled to orient it correctly.
He got his arms through the sleeves but got hung up at that point.
Thursday, December 19, 2013
"Your beard grows all the time," I explain, "That is why you have to shave every mooring."
"How about that," he replies.
Wednesday, December 18, 2013
Tuesday, December 17, 2013
In the past we would cook dinner, slowly moved to ordering out, and now have settled into the typical Jewish Christmas - we go out for Chinese! Pine Yard, a great restaurant is just 2 blocks from the condo and that makes it very convenient and allows for no "dinner clean-up."
The purpose of this e-mail was to provide an update since most of them have not seen or been with Gregory for a couple of months.
Dear J, J, I, C, L, W, and E,
Hi. We are looking forward to Jewish Christmas on Sunday, December 22. Arrival time 5:00 for a glass of wine, dinner at 6:15 at Pine Yard. Back to the condo for cookies, coffee, tea, hot chocolate, hot apple cider.
I have described how I will not rush to Gregory's aide immediately but rather let him try to figure out how to do something with which he is having difficulties. This gives him the opportunity to operate in his own time at his own rate and level of understanding. It gives me the opportunity to observe how much he is able to do.
If he does something more often than not, I do not interfere. If he can do something sometimes and not others, I do not interfere unless he really cannot get it this time. When I can tell, or when I think, he has lost the skill, I will help right away and not even ask or assume that he can succeed in the skill. At this point I do not even ask him to do it.
Well as of today:
Recognizing need to use restroom although not incontinent.
Toileting clean up process including wiping and flushing.
Getting into shirt and pants.
Eating a normally served meal.
Helping to cook, set up, or clean up for meals.
Ability to go for a walk in the neighborhood by himself.
Taking pills and medications.
Recognizing thirst and knowing what to do about it.
Following simple, on word directions like: "Sit."
Put on coat and zipping it up.
No help with household chores.
Reading by himself for pleasure.
Recognizing that he needs to take a nap.
Cleaning up bathroom after he shaves.
Showering by himself.
Setting up toothbrush and paste.
Answering the house phone.
Using his cell phone.
COMES AND GOES:
Reading the newspaper.
Eating with knife and fork.
Buckling seat belt in car.
Opening car door.
Answering the door when someone knocks.
Opening a door.
Turning lights on and off.
Staying alone while I run down for the mail.
Taking the trash and/or recycle down the hall.
STAY TUNED FOR MORE (the nature of Alzheimer's, isn't it?)
I say it in an even voice but still, the words are hurtful (at least I think they are to him and I know for sure they are to me.) "Isn't it good that I know how to do this? Sick and dying people need lots of help. I am happy to help."
Monday, December 16, 2013
He spent a little time with the newspaper but then went down for a nap and slept for several hours. Maybe his problem is too much sleep. I'll have to keep an eye on that. Because it was so cold out I (we) didn't want to go out for a walk so it's been a sedentary kind of day.
He sat with me at the kitchen counter while I made Rosemary Cashews, Peanut Butter Cookies, and Oatmeal Raisin Cookies and I kept up the commentary. He sat quietly.
At 5:00 he stared at his mug of coffee and plate of cookies for the longest time. I encouraged but to no avail. I tried to help him lift the coffee mug to his lips but his hand was shaking so badly (history of Familial Tremmors in the Maire family) that he couldn't hold the mug and I didn't trust him to be able to. I transferred the coffee to a starbucks carry cup and he did better.
I put several Christmas cookies on his plate but he again just stared at them as if he didn't know what they were or what to do with them. I tried not to take offense as they were home baked by me and used to be his favorites. I succeeded. I offered him some of his "usual" cookies and he said, "That would be nice." and he proceeded to eat them.
He did take himself to the bathroom but couldn't get settled because the ironing board was set up in there and that made the bathroom a new, strange, foreign place in which he needed my help in lowering his pants and sitting on the pot. He just announced, "Yes!" and I am aware of the "Sweet Smell of Success." :-)
The coffee perked him up a little so I am hopeful that the rest of the evening will be better.
Sunday, December 15, 2013
The fundraiser was for the Greater Ohio Alzheimer's Association who provide support to his mother, diagnosed with Alzheimer's and father. Daryl organized approximately 30 fellow cabaret performers to present one number each for what ended up being a two hour show with one intermission.
As one of the presenters, I volunteered to do a poetry reading which would give the attendees an idea of what it is like to live with and love someone with dementia. I also sold my poetry book with the profits going to the benefit.
Following is the "script" of my presentation:
First Alzheimer’s Disease as it relates to the theater. It is called:
To write a serious drama for the stage
In which the audience would experience
What a person with Alzheimer’s goes through.
And what those who love him endure?
Because I have so much material from which to draw.
The question is, however, who would want to
pay the ticket price and attend an evening of theater to watch it?
Of heaviness, sadness, frustration, confusion, depression, tears and at times desperation?
Who would want to pay?
Who would pay?
Is like orchestrating an improvisational dance with normalcy.
Not being able to anticipate turns or circles, or dips or bends.
Normalcy for his dance, not mine being the key,
Neither one making sense to the other
And each day … I die.
Would I be insulting your intelligence to tell you that Ménage à trois is a French term which originally described a domestic arrangement, in which three people having sexual relations occupy the same household? The phrase literally translates as "household of three.” This poem is called:
Their love continuing to grow, change, and adjust to the times.
It was known as the love that dare not speak its name.
Slowly society has acknowledged it out loud
But for the most part still in whispers.
Each partner was very much unlike the other.
He was tall and he was short. He was fair and he was dark.
He was a recovering Catholic. He was a recovering Jew.
He was animated, impulsive, and random.
In turn, he described him as a “sponge:” meaning soft, malleable, absorbing.
And the sponge became more stick-like.
Unasked, a third partner joined the relationship.
Nor seek permission to join the party.
Three entities occupying the same household.
Now he has difficulty communicating, and he has to tell both of their stories.
And while he has been becoming the forward partner …
Fourth, I have been told that it is a brave thing … for a caregiver to admit that:
I am his memories
I listen to his needs
I learn to accept less
I learn to go where he leads
I try not to anticipate
I respond when I am asked
I respond, or sometimes I wait
I understand his state
I leave the rest to who knows what
I leave the rest to fate
I know he’s doing his best
I will do whatever I have to do
I will put myself to the test
I cry silently within my soul
I feel so very sad and alone
I feel such a deep, empty hole
I live from day to day
I yearn for what used to be
I yearn for yesterday
I promised until death do we part
I will hold him close while he knows me
I will hold him always in my heart
I am his memories
Sit on garden seats.
We walk in narrow country paths,
Traverse the city streets.
Witnessing hand in hand.
We venture to places unknown,
Revisit those we had planned.
It is at rare intersections that we meet.
The words just don’t exist anymore,
But with memories and our love, we are replete.
Saturday, December 14, 2013
When they say they are praying for us, I appreciate the love and understanding they are showing us. When asking us to pray for them, I appreciate the love and support for which they are asking.
We are not religious, we consider ourselves spiritual. We do not embrace any particular religion, Possibly Buddhism, which is more a belief system, is closer to what we do believe in. We do not pray or believe in some outside power taking care of us, we believe that God is within us, is us! I have written about this before.
My usual Facebook response to prayer, which I think serves the same purpose of making someone who has asked for our prayers feel heard is to say, "Sending positive healing thoughts to you and yours."
Recently this request was met by my further thoughts. Perhaps prayer is a way of centering oneself and focusing one's attention so action and/or thoughts can be directed towards new solutions, understandings, actions. I believe that the answer is within a person, not manifested in some outward diety or entity sitting on a throne in judgement of me.
I do not believe that begging, or bargaining, or feeling guilty is what a God would want from us. I think he/she would want us to have confidence in ourselves and know that we have all we need to make good decisions, come to good conclusions, take appropriate actions to solve our problems, to be good people ... or at least to be at peace if the difficulties cannot be solved/changed. And the courage to know and accept the difference?
Friday, December 13, 2013
Age Matters memory and aging clinic in Toronto helps individuals and their families deal with Alzheimer's disease and memory loss. Our goal is to treat individuals who are experiencing memory impairment as they age, and to address the concerns of family members who are coping with symptoms of memory loss in a loved one.
Dr. David Tal is a specialist in Geriatric Medicine, a fellow of the Royal College of Physicians of Canada and a member of the American College of Physicians. Dr. Tal served 4 years on the board of Alzheimer Society of Toronto, http://www.alzheimertoronto.org.