Be careful what you wish for

There are ordinary days, then there are no turning back moments.

--Am I losing my mind?

The air froze in the room.

I wouldn't exactly put it that way.

The moment I'd been wishing for -- believing if he could just accept what was happening it would get easier for us both.

I'd say it was more of a brain thing than mind. Your brain is making your mind play tricks on you.

He stood in the doorway, his thinning arms propping himself up. This was a no turning back moment.

As I understand it, based on what they can see in your blood and spinal fluid and your eyes, it's a brain thing.

I watched his face for clues that he was ready to hear more. There were none.

--And that's why I'm taking this medicine, this Namenda and Aricept? I don't think it's doing any good.

He walked away.

There are ordinary days, then there are no turning back moments within ordinary days.

As on any ordinary Tuesday night, I was watching TV. He collapsed on the bed beside me and curled himself into the fetal position. I reached out to touch him like it was any ordinary Tuesday.

--I'm sorry things have turned out the way they have. I didn't mean it to be this way.

I heard myself gasp. I grabbed his thinning arm.

Don't even go there, Baby. Don't even go there.

Now I can't stop crying.

Does Alzheimer's short circuit grief or make it worse?

Does AD interrupt normal processing of events, such as grieving a divorce after being married more than 35 years? I grabbed my second husband straight off the courthouse steps, so to speak, and we became a couple before the ink was dry on his divorce papers. In fact, we had met the year before, when he was still married but separated. I, on the other hand, had been divorced 17 years and had already gone through grieving the loss of a life that was not all bad. I had sorted through all the physical, mental and spiritual junk and had moved into another realm.

He hadn’t.

Therefore, it should have been no surprise to me when it hit him; it took me a few months, however, to realize that this was normal grief and not part of the disease.

His divorce is seven years old, where mine is 25 years old. We married less than two years ago. Still honeymooners. If that seems surprising in the face of this horrible disease, just chalk it up to the triumph of the human spirit. Even AD has not wiped out our attraction for one another. Not yet anyway. So when he recently started vocalizing constantly about all the mistakes he has made, I naturally assumed he considered me one of them. But he doesn’t.

What’s happening is a tribute to our love and devotion to one another. He is falling apart, but he’s doing it in a safe place. At some level he trusts my love enough to reveal himself to me. He isn’t grieving the loss of his ex-wife, the person. He’s grieving the loss of that life. It was a life where he was young and healthy, strong and dependable. He knew who he was as well as lifelong friends and neighbors. Now he is in a different state geographically as well as emotionally. His state of mind changes daily. He can no longer trust his own eyes and ears. His feet and legs betray him often. He denies AD as the problem, but he knows his mind is an ever-changing array of confusion. However, deep down in his soul he knows God gave me to him to help him through this. Or maybe that’s my imagination. Even so, I believe it strongly enough for both of us. And at nearly 70 years of age, I have learned to trust my signal that something is right. It is joy.

When I have hit on the truth about something, I feel joy.

Joy is the tipoff.

Now I can listen to him lamenting without feeling sick about it. Yes, in addition to AD, my husband is coming apart. No, I can’t reason with him and make him feel better because his reasoner is broken. But I understand completely because I went through the same thing after my divorce.

I was married to my first husband for 31 years, and believe me it was not all bad. I missed so much about that life when it was over. I had to reinvent myself. And for my new husband to have to reinvent himself now that he has Alzheimer’s? How is that supposed to work?

Since the fall...

As he was getting up off the driveway where he fell when the bees attacked him, he said, "This just cost me two weeks of my life."

He was not wrong. (See the blog of July 1. )We are going into the second week and he has been too sore and worn out to do anything more than water his garden and feed Sally, who we consider to be his dog.

His shoulder may be seriously injured. He won’t get it x-rayed voluntarily, and I haven’t wanted to force a trip to the ER since it has been getting some better day by day. However, a new thing: yesterday he drove with his left arm and his hand started tingling, then went numb. I’m concerned about nerve damage, so now it is time to insist on seeing a doctor.

The worst part though is now he is beginning to lose help that he will ever be better. Without hope his life will seem like an endless stream of doctor appointments and won’t seem like living. He is sensing the passing of time, and he spoke aloud yesterday of giving up:

"If this is the way things are going to be I don’t want to go on. Tony had the right idea."

I wish he wouldn’t say that. Tony is my son who believed he was terminally ill, and ended his life with a shotgun. I don’t need to be reminded; neither do I need to worry about losing another one to suicide. When he talks like that I retreat deep inside myself and start repeating "The Lord’s Prayer." Only I rarely get through it even once before I feel better and reassured —for a time.

Coach Broyle's Playbook for Alzheimer's Caregivers

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.

The difference between Alzheimer's and cancer

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...

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.