Lin on life in the Alzheimer's multiverse

I Wonder What it Feels Like to be Unable to Remember?

2011-07-03T11:53:00.001-04:00

I Wonder What it Feels Like to be Unable to Remember?

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by Bob DeMarco, The Alzheimer's Reading Room.

Is he sensing the coming of the darkness

2011-07-01T22:34:00.008-04:00

What was it he said today? When you're young and vital, you can go toward the dark and stay gone until just before the light dawns and still make it back in time. But when you're older you can't do that. You don't have the strength to pull away from the dark. Yes, that was it.

I watched him closely for signs of seizure or stroke, as he sat still, in his chair, careful not to bloody the fabric with his bandaged, bleeding elbow. A nest of angry bees had swarmed him out in the driveway as he unrolled some old carpet to check its condition. I had stepped out the front door just in time to see him running backward, tripping, and slamming his shoulder full weight onto the driveway, being covered with bees. His face and lips swelling until I barely knew him, he talked on about the past. But first he reminded me how he'd tried to protect me from the bees. It all happened so fast. All I could see was him sprawled on the ground but before he could shout, "Run!" a bee stung me on the lip.I took off back in the house to grab a box of baking soda to make a paste, and after doctoring us both which included Benedryl and Ativan, and all the excitement started settling down, he reluctantly agreed to sit in his chair and try to relax.

The back story on the ensuing conversation is that God told me right off the git'go that I would be instrumental in bringing peace between him and his family, even if that meant he went back home to them. (That was a big ol' Thy Will Be Done, I can tell you.) I remembered yesterday, when he confessed the reason he wanted to help me around the house was because he never did that before. He was married for 36 years and he never helped around the house? This is disturbing even now, but nothing new.

Neither is his rage.

A year ago, when I let the primary doctor know about the rage, he put him on Seroquel, ostensibly to help him sleep. It helped, but being expensive, every refill caused a new battle. But now the neurologist added Namenda and Aricept to the mix, one at a time, over a period of two months. It seems to be helping.

The neurologist told him it would "help his thinking". So now my beautiful husband with the bee stung lips, bloody elbow and wracked up shoulder is asking quietly, "What else was that Seroquel supposed to do besides help me sleep?"

Rage, I said.

His head nodded knowingly, as he mused that if he wanted to have any kind of life at all, he'd have to stay on Seroquel the rest of his life. "I was born with that rage in me. When I was five or six I had a little wagon, and the handle pinched my thumb and made a blood blister. I beat that wagon until it was torn completely up. Mr. McAllister said it was good to have fire and spirit, but if you couldn't control it, then it was not good at all. I should have been on this stuff all my life," he said.

I felt like saying Who Are You and What Have You Done With My Husband? This is how untypical instrospection is for this man.

Who's Out There? (c) Lin Cochran

This could be the start of something big.

Thy will be done.

The night the moon was closer to the earth than it will be ever in our lifetime, a cloud passed in front of the moon, forming a perfect face looking back at us.

Coach Broyle's Playbook for Alzheimer's Caregivers

2011-07-01T20:57:00.000-04:00

This book comes highly recommended for caregivers. It is downloadable onto Amazon's Free Kindle App for PC's, which keeps it away from the curious at our house. He does not use the computer and we don't use the A word or the C word. I'm his wife, not his caregiver. Lately I've become his friend. He is talking now about way back in the day. I stand as his witness. This man knows exactly what is happening to him. I am attempting to accurately record his shifting perceptions.

To Believe in God

2011-07-01T07:06:00.001-04:00

To Believe

To believe in God is to celebrate
the gift of life in the presence of death.
It is easy to celebrate life on the good days
when the sun is shining and laughter floats
through the air and children play and lovers love.
But life is more than sunshine.
There is also dusk and the starless night
when laughter dies and fear clings to the soul . . .
fear of losing someone dear.

That's when celebration becomes an act of faith.
Not a soft faith full of heavenly promises,
or a bromide faith which dulls the sharp throb of grief,
but an open faith . . . open to the dawn and to the dark.
A faith that reaches up to claim life's highest joys
and kneels down to taste the bitter wine of failure
and disappointment and sadness.
A faith that seeks every mood and in that exposure
grows more sensitive
feels more pain
knows more joy.

To believe in God is to celebrate life.
Not a piece of life but all of it . . .
the good and the bad, the happy and the sad.
Because God gave it all
and we live when we receive it all
and love it and use it and live it.

To believe in God is not to deny
the presence of ugliness
but to transform it into beauty;
not to deny the sounds of discord
but to blend them into harmony;
not to deny the confusion of chaos
but to create order.

To believe in God is to take anger
and make it into a sensitizing of the soul;
to take hatred
and transform it into a ministry of love.
To believe in God is to take the broken pieces of life
and fashion them into a cross.

Author Unknown

Learning to live by Alzheimer's rules

2011-06-28T09:50:00.001-04:00

"It takes a lot of energy, learning, and patience to deal with Alzheimer's disease." So says Bob DeMarco, author of the Alzheimer's Reading Room.

No kidding.

One minute I'm his favorite person. The next minute I'm his worst enemy. What did I do wrong?

I left a bottle of water sitting around open.

"I just don't understand why anybody would do that!" he repeats over and over.

As his world becomes more confused, he understands less and less and wails louder and louder about trivial matters until I am agreeing with him that I'm the worst wife in the world and he is absolutely right, I'm just no damn good.

Yet it is way too early in the game to get too frustrated. At least he's not accusing me of stealing his things, or threatening to kill me. Maybe it will never come to that, but for some it does. And worse.

I read of Alzheimer's patients who remain sweet and gentle, never uttering an unkind word. My husband is not one of those.

What I should have done was not leave the bottle there. But I am messy. I am having a devil of a time obeying his new rules. Open bottles of water were not a problem before AD. And they may not be a problem tomorrow. The rules change. Every day there is a new rule.

Caregivers spend a lot of time tap dancing, trying to understand what their loved ones need. We have to hang loose and be ready to shift into their dimension at any minute. For some of them, perfect order would not be enough to allay their fears. So meeting their needs as they arise is about all we can do, while accepting that no matter what we do it will never be enough.

However, at times his dimension becomes a lovely place to be. He apparently feels happy, peaceful, grateful and content for a little while. These are the precious moments to savor. I'm going to remember them later, even though he won't.

Dr. Steve Hume, Alzheimer's patient

2011-06-27T21:38:00.003-04:00

The difference between Alzheimer's and cancer

2011-06-26T19:30:00.000-04:00

When I knew he had Alzheimer's, I wanted to fill his days with memory-makers, just as I would if he had been diagnosed with some type of incurable cancer. The problem is, no matter how unforgettable a day or an hour might be, he's going to forget it. It's the nature of the beast eating his brain. So I slog on, knowing these good days and hours are disappearing behind him, and I'm left to remember alone.

We have a new motto at our house: Just start now...

2011-06-24T22:17:00.000-04:00

Never had much of a heart for service. Self-sacrifice was never my strong suit, especially when it came to men.But the mighty oak bends under a mightier wind. Solid ground gives way to rushing waters and begins anew downstream. At last I loved someone enough to try to adapt to him. Good thing. He couldn't change if he wanted to. Can't reason with him, his reasoner is broken, to quote an expert on the Alzheimer's message board, www.alz.org, my lifeline to sanity and instruction.

Bob DeMarco, author of the Alzheimer's Reading Room www.alzheimersreadingroom.com, and caregiver to his mom, says an alternative universe moves into your house. He calls it Alzheimer’s World. It has a language of its own. The other day he wrote about how when the craziness starts, you just take one step to the left, and you are out of your reality into theirs, where things make sense to both of you, where, if you can remember in time, you say the most comforting thing, which probably has very little resemblance to anything other people would recognize as truth. There is only one truth in Alzheimer's World. Theirs.

However, occasionally their truths become life lessons, such as when he walked into my office and announced he had come up with a new motto.

I started to take one step to the left.

"Well, you know how I have a lot of regrets...well, what if I just start now just being the best I could have always been."

Sometimes his reasoner works just fine.