Letting Go Part 2

And then this shows up in the Daily OM inspiration e-mail:

April 26, 2015 Control Letting the Curves Take You by Madisyn Taylor The answer to control is practicing surrender. Trying to maintain control in this life is a bit like trying to maintain control on a roller coaster. The ride has its own logic and is going to go its own way, regardless of how tightly you grip the bar. There is a thrill and a power in simply surrendering to the ride and fully feeling the ups and downs of it, letting the curves take you rather than fighting them. When you fight the ride, resisting what’s happening at every turn, your whole being becomes tense and anxiety is your close companion. When you go with the ride, accepting what you cannot control, freedom and joy will inevitably arise. As with so many seemingly simple things in life, it is not always easy to let go, even of the things we know we can’t control. Most of us feel a great discomfort with the givens of this life, one of which is the fact that much of the time we have no control over what happens. Sometimes this awareness comes only when we have a stark encounter with this fact, and all our attempts to be in control are revealed to be unnecessary burdens. We can also cultivate this awareness in ourselves gently, by simply making surrender a daily practice. At the end of our meditation, we might bow, saying, “I surrender to this life.” This simple mantra can be repeated as necessary throughout the day, when we find ourselves metaphorically gripping the safety bar. We can give in to our fear and anxiety, or we can surrender to this great mystery with courage. When we see people on a roller coaster, we see that there are those with their faces tight with fear and then there are those that smile broadly, with their hands in the air, carried through the ride on a wave of freedom and joy. This powerful image reminds us that often the only control we have is choosing how we are going to respond to the ride.

How Many Times?

How often can I cry out to the mountains, pleading
When its weight in rocks is my life's daily pain?

Screaming NO NO NO in my sad, lonely silence
Until my throat and breathing cries NO NO NO.

Overwhelmed. Devastated. Exhausted. Sad.
Tears of blood flowing, washing down my face.

With my emotions which are no longer valid to him
But still oh so valid for me, oh so valid, oh so real.

He does not cause this, but I am brutally caused.
He does not control, this but I am cruelly controlled.

Not understanding even the words I very carefully use
Nor the explanations I still try to give, to help, to share.

We sit at the restaurant table with our closest friends
I hold his hand, stroking, trying to help him be involved.

Love cannot describe the immensity or the agony of my love
That no longer soothes but only torments and tortures.

How often can I cry out to the mountains, suffering
When its weight in rocks is my life's daily pain?

.

"Simple Joys" or "More Than You Would Ever Want to Know About Our Bedroom Lights"

As Gregory continues to leave his abilities behind, I continue to creatively compensate. When I am successful I feel very good. When I am not I feel hopeless. How's that for mood swings?

We have always had lamps by our bedside. Perhaps the new condo was a little darker then we were used to, what with the concrete ceilings and all, so we added two "up lights" on top of my computer desk and two on top of the bookcases on the other side of the room.

The switch on the wall controls, as in most modern buildings, one side of each double outlet. So when plugging in your fixtures, use the correct side of the outlet and you can control all of the fixtures in the room with one click.

I used to call them lamps but in the architecture world, lamps refer to bulbs while fixtures refer to lamps. Get it?

Now the switch concept works well but when you are in bed, finished reading, half asleep and ready to call it quits for the evening, getting out of bed is a pain. You could pop out of bed and switch them off individually or at the wall switch by the door to the bedroom.

When the need arises to turn on a light during the middle of the night, one could kill themself  in the darkness on the way to the lamp or wall switch.

Being a creative person, I rigged up the bedroom lighting into two switched extension cords, one of which controls the lights on Gregory's side with the switch at his bed table and the other on my side. This way we could turn off all the lights at bedtime (and on if necessary during the middle of the night.)

In the morning turn them back on at our bedside tables and the entire room of lights can again be controlled by the switch on the wall.

Following all this?

Slowly Gregory could not figure out how to turn off the lights on his side of the room. He could not locate the switch fastened to the back of his table and if he could find it, did not know how to work it. One night he could, the next he couldn't. It was a case of diminishing returns with the "not able" increasing and the "able" decreasing. Finally I would hop out of bed and do the light thing.

Next, I discovered a system at the hardware store whereby the extension cords could be plugged into a remote button. My side worked the same way (since I do not have Alzheimer's) and Gregory got this little box where he just had to push the ON button or the OFF button to control his lights. I was so hopeful.

The new system worked for only a little while and not without confusion. Which one of the buttons was the ON button and which was the OFF button (even though clearly marked.) And, "Where did I put the damned box anyway. Can't find it."

I felt bad taking over the lamp lighting ceremony but Gregory didn't seem to mind. First  I did my switch then I pushed the buttons on the little box to do his side of the room. "Good Night. Love you."

Next I got to thinking, in my "Control that in life which you can since there is so much you cannot," mood. Wouldn't it be nice if I could control all of the lights, since I was now in control of them, with one switch instead of several plus the little box. In high end homes, often there are additional switches on the wall by each side of the bed in addition to the wall by the door to control the outlets.

Wouldn't that be nice just to roll over and with one flick of a switch control all of our bedroom lights? I had our electrician in for another small job and proposed my plan to put a switch on the wall by my side of the bed. "Can be done he said but you would have to move your computer desk so I can get at the outlets behind and run the new wire."

I was not about to unload the desk and all of its millions of wires for the "wireless" network so I killed the idea. But my mind kept working and eventually I came up with a way of using those same switched extension cords to unite all of our fixtures. It works. All I had to do was plug Gregory's cord (with switch on) into my cord (with me controlling on and off,) attach it to my night table and now I fully am in control. Every night when I say "Good Night and Love You" I feel a little spark of joy at being able to control all fixtures with one flick.

P.S. You may be thinking that the bedroom looks like a wired mess with all these extension cords, which any electrician will tell you can be dangerous. Well no. They are minimally few, encased in wall mounted moulding channel covers, and as safe as can be. My dad would be proud of me (considering he was an electrician.)

Breakfast

POSSIBLE TITLES FOR THIS POST:

"Enough Said ..."

"Thousand Word Pictures"

"And on Sundays Oatmeal"

"I Love To Go A Nurturing" (Sung to the tune of Fanicule Fanicula)

"What I Do For Love" (From A Chorus Line)

"Control Those Things You Can"

Thoughts on a life.

Thoughts on a Life

Perhaps my success is that I have been able to create for Gregory, a life in which he can truly live in the moment, in which his now and his world are all that matter. 

I have organized our life fully and carefully. This gives Gregory a certain sense of consistency  and control and allows me to make sure that what needs to be done gets done, especially because I am the one who has to do it ... all. It allows him to enjoy his life day to day without having to worry about any details.

The purpose of this essay is not to brag about how much I do, to say look at me, but rather to show you what must go on so that Gregory can live in his moment. How often have you stopped to think about all the things you do to run your life and that of your loved ones? These thoughts on what it takes for us are mine, shared.

Gregory wakes up, cleans up, and puts on his morning "Sweats" which I laid out the night before. He has breakfast, which I assemble and put on a tray, including cereal with bran buds, fruit, and soy milk; a glass of orange juice; yogurt; a mug of tea; a few prunes, apricots, and dates; a handful of assorted raw nuts; and on alternating days - sausage, Canadian bacon, or tinned fish on crackers. On the days he can, he cleans up after breakfast but usually leaves several things on the counter, not knowing where they go. On the days he cannot, I take over.

Then Gregory sits at his desk spending several hours with the New York Times, which I have arranged to be delivered every day. My idea to do this was successfully based on the fact that Gregory still reads, likes his news, but is no longer able to navigate his computer (we used to get the newspaper on-line.) I kidding call this concept "using a brand new technology" since we have never had a newspaper delivered to our door before this."

Some days Gregory can select what he wants to wear, other days I have to help. He is not easily able to relate a temperature number to the season to what kind of clothing to put on. Sometimes I have to notice that his underwear is on backwards. Sometimes he attempts to put on two pair of jeans so I help him through. Often he forgets his belt which confuses him about where to hook his cell phone and keys.

So far he can still make a large salad for his lunch. I help when he gets confused and on some days clean up after him. Often we plan a lunch out around our errands. He always goes with me because I cannot leave him home by himself any more but also because we continue to enjoy each other's company. I decide what he will order as well as what I will order for lunch (same for dinner out for that matter.) I used to ask: "Do you feel like having meat, chicken, or fish tonight?" That no longer works so I just decide. Usually he "goes on" about what a good choice I made and that makes me feel good.

Recently I put together a process for "interviewing, letter of applicationing, background checking, and letter of agreementing" a Companion to spend time with Gregory. I created a process for this with which I was comfortable and which insured the Companion's, Gregory's and my "rights and responsibilities." Part of this includes a brief history of Gregory's dealing with Alzheimer's, what the Companion might encounter, and how to deal with it.

I currently have two college students acting as Companion, each of whom spends 4-8 hours a week with Gregory. This enables me to get out for a meeting or appointment when I have to leave Gregory home alone but also gives me some free time away from my 24/7 responsibilities, just to be able to go out and "play" by myself or with friends.

The interesting part about having a Companion is that I feel like a mother with a young child having to add to my "duties" scheduling, planning, thinking ahead, dealing with actual and potential Companion late arrivals, illness, cancellations. But it has been working well and Gregory has been enjoying the company of "young blood" which provides a different environment for him than having me around 24/7. So this seems to be working well for both of us.

I plan and prepare dinners at home, set the table, serve the food, dress and salt and sauce whats needs dressing, salting, and saucing. I turn on the music we always have at dinner, deciding Chopin, Beethoven, or Sting. After dinner I clean up, sometimes Gregory will dry, I put things away, wipe and "daily spray" the granite counter.

He will ask, "Can we have a little something?" referring to watching a saved TV show, or a NETFLIX movie. I decide what we will watch and run the TV/DVD controls. I make the popcorn or cut up some fruit to have during intermission. After watching a DVD, I put it back in its envelope returning it to sender.

I select an assortment of chocolates for him to have at bedtime. He loves his chocolates! I suggest when it is time to take a shower. I put out new towels when needed. I point out toothbrush and toothpaste when he gets confused over their use or location. I remind him to put on body lotion and help with the parts he cannot reach. I apply the cortisone treated tape to a few areas on his hand and leg that have begun to show psoriasis.

We turn down the bed together after I have brought our water glasses in from the TV room and put his nighttime meds in a small bowl on his night table as well as putting tomorrows out on the kitchen counter. I pull down the shades, turn off the lights, check the thermostat, make sure the front door is locked, and set the alarm (to wake me in the event of his wandering in the middle of the night.)

We read for a while and then lights out. Sometimes he can figure out how "on/off" works and other times I have to pop out of my side of the bed to go over and turn off his lights. The nice ending to every night is that we fall asleep together holding hands.

Of a day, bills are received, reviewed, and paid. Mail is collected, sorted, and handled. Same with e-mail. Birthdays are remembered as are important anniversaries of family and friends. Great nieces and nephews and God-Children are gifted on their birthdays, at Christmas, on graduation, at confirmation, when bar (or bat) mitzvahed, and eventually will also be gifted if they choose to marry and have children.

Household equipment is maintained, serviced, repaired. Walls are washed, erased, or touched up with paint. Clocks, thermostats, and timers set. Laundry sorted, washed, dryed, folded (sometimes Gregogry helps with the folding but I have to double check because he mixes up the variously sized underwear and sox.) Our housekeeper is instructed, directed, and at times corrected (we are grateful for her help.)

Refrigerator, pantry, and larder are stocked and a running list created so everything needed is remembered. When one thing is used up, another is in waiting, and when taken off the shelf has its name added to the running shopping list. Meals are planned executed and eaten. Dishes are set, cleared, washed, and stored.

Friends are e-mailed, telephoned, chatted with, entertained, joined for dinners out. Parties are planned, invitations sent, R.S.V.P.s received, menus planned, food purchased and prepared, buffets set, food replenished, drinks poured, dessert served, clean up accomplished. When we get together with friends, I tell my stories and I tell Gregory's stories. He enjoys hearing his stories told since he cannot manipulate the words to tell them himself.

A pair of reading glasses has been located in each room, labeled for ease of redistribution when Gregory inadvertently looses or moves them around, and new bedtime books selected when he needs a new one.

Doctor appointments are made, symptoms checked out, lotions applied, cuts covered, bruises watched. Dentist cleanings, eye examinations, skin doctor, neurologist appointments made, driven to. Information is discussed with doctor, results listened to, actions for the future remembered and taken as needed.

Again, the purpose of this essay is not to brag about how much I do, to say look at me, but rather to show you what must go on so that Gregory can live in his moment.

•  •  •  •  •

When he wonders about later today or tomorrow, he asks as well as he can (language difficulties considered,) and I tell him again our plans. He will reply with "Oh Goodie" or the like. Often he asks again or is surprised when the plans take place. This periodic wondering seems to be enough for him when it comes to regarding the future.

The past comes up now and then. It is a little more complicated as usually it causes a guessing game about what he is trying to remember. After thirty five years of living with and knowing him, we usually are successful in remembering. Sometimes, not!

Perhaps my success is that I have been able to create for Gregory a life in which he can truly live in the moment in which his now and his world are all that matter. The problems and confusion of dealing with Alzheimer's Disease/Dementia arise when I ask him to live in my world or our world. Sometimes he tries to live in our world and then stumbles, feels confused, and sometimes gets frustrated when he realizes that he is no longer able to do so. I am continuing to learn how to avoid this but am not always successful. I am continuing to learn how to live in his world but am not always successful.

Things he knew how to do yesterday, he does not necessarily know today, and may or may not remember tomorrow. I never know what to say or not say, to ask or not ask, to wonder or not wonder. I never know if he understands what I mean when I ask him to help me with something. Using words like above, below, in, out, over, under, etc are a crap shoot. As mentioned in a previous post, I do not know which is worse: when he doesn't understand something or when he thinks he understands something. 

Life continues to be a thin, thin line between trying as much as possible to live our life as normally as possible ... or better ...  to help him live his life as it is normal to him. Life continues to be a thin, thin line between treating him like a five year old while at the same time respecting him as the 64 year old adult he is. He senses the difference and when I am able to do so successfully he doesn't mind. When I am a little impatient, he gets a little short with me. Can you blame him?

Every night before he goes to bed, he recites aloud the three words he read in a poem and had me print on a post it to put on the side of his night table drawer: Simplicity, Patience, Compassion. As I hear his repeating his mantra, I recommit myself to being as good of a caregiver partner as I possibly can be.

What I wonder is: "Will I ever again be able to live in the moment in which my now and my world is all that matters?" I dread and yearn for that time!

The Poetry of Alzheimer's

Alzheimers, like poetry, is about words.
Letters combined into words into sentences,
Making up thoughts, and ideas and stories.

A poet searches for just the right word,
To convey meaning, experience, emotions
The essence of the things of life are told.

A person with dementia searches as well,
Through the emptiness, confusion and fear,
Trying to express the simplest of ideas.

At times the poet is can be articulate,
And often times beautifully lyrical,
But always in control of his words.

The person with dementia can be articulate
But at times cannot express himself at all
And over time the control of words escapes.

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,”

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9500 Gilman Drive – 0948 La Jolla, CA 92093  

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.

Alert 1

Well, I've done it. "I've fallen and I can't get up." Read on...

As I have aged, I realize that I pass milestones that place me in my parent's generation. Over the years I would hear them talk about various conditions, changes, ways of looking at things and either I would hear them but not listen or I would write it off to "my parents being my parents." Now I understand.

Like my parents, we've moved to a condo and enjoy not having to maintain the house and grounds. We nap. We like to be at home at night and snuggle in. At restaurants we sometimes share entrees. Entertaining takes a toll so we do it easier or do it less. Pills are organized into our "S M T W T F S" boxes, white for day and blue for night. We do not eat too late at night. Pardon me ... but if we do not move our bowels we are aware of it. And so on...

Dealing with Gregory's Alzheimer's diagnosis has presented many other age related problems with which I have had no experience. But I am learning. For example, this week I ordered a Medical Alert System for the condo. If something was to happen to me (heart attack, crack on the head, broken hip) I am not sure that Gregory would be able to deal with the situation. When he is under stress, he temporarily looses even more of his abilities and I can picture myself laying on the floor trying to give him instructions or worse yet, passed out unable to give him instructions.

So now we have a large white box on my bedroom nightstand with its very loud speaker and bring red button (which lights up) marked EMERGENCY! I have a fob that I can wear around my neck that also has a red emergency button and I have a watchband button as well. Both activate the big box in the bedroom. I haven't taken to wearing the remote buttons when I am at home yet but probably need to get into the habit.

When I tested the system, within a minute of pressing the button someone came on the speaker box and asked (to be heard all through the condo unit) "Are you alright?"

I answered, "Yes I am testing the system."

"Am I speaking to Michael?" (On their records because I am listed as the "primary user."

"Yes."

"Is Gregory alright also?"

"Yes."

"We will mark this as a test of the system. Remember when ever you need help call us by pressing your emergency button. Thanks for using Alert 1."

Last night as I was drifting off I was musing about the service. Peace of mind is good.= but they forgot to ask about Mariah, our cat.

Magic Wands

When asked how I would use my magic wand (Harry Potter Style) for Gregory and me I came up with the following. I do believe in magic but a wand will not really solve our problem unless we do the obvious: wave the wand and remove Dementia and all of its forms. Then while we are waving, lets get rid of all illness for everyone. Then create a world in which people could love rather than hate, help rather than harm, be truthful and loving. At least one more wave so no one has to be hungry, or thirsty, or in pain.  Wave a little more and let death be a natural way of moving on, not one of illness or violence, and make sure that the departure is not long lived (so to speak) and long suffered.

What I noticed in hearing others talk about their dealing with Alzheimer's is the huge amount of sorrow, loss, and frustration over things we cannot control. If I could better deal with those things I cannot control and feel better about those things I can control, I think I would be a better caregiver. So there, Wave ... Wave ... Wave.