Bob Raymer – In Memoriam
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My beloved Bob died peacefully at home in the early morning of November 13, 2008.
I miss him more than words can say, and I will love him forever.
Still Here
Comments (8)Sorry it’s been so long since I’ve posted here. So much has happened, and is happening, that I don’t have a whole lot of time for posting or corresponding.
In early March, Bob had a sudden, severe decline, and at the time, his doctor thought he might be nearing his life’s end. But apparently the dip was due to excessive doses of his meds. His anxiety had dramatically diminished, so the dosage of the med for anxiety was cut way down, and another med was stopped entirely, with the result that several days later he had rebounded to almost where he was before the decline. Thank goodness!
However, overall he continues to gradually decline, as is to be expected with this illness. He is becoming weaker in general and is having a harder time getting up from his chair. I placed a raised toilet seat on the toilet that enables him to get up more easily.
A nurse from hospice checks Bob twice a month. Also, we have a friend, John, who has been helping care for Bob virtually every afternoon for several months now. John showers and shaves Bob and also cleans him up after incontinence (when John’s not here, oh my, that’s my job and it’s sure not an easy one; it’s getting harder now, too). John also gets groceries, runs some errands and sits with Bob when I need to go out. John is an ANGEL.
(NOTE to all caregivers of people with Alzheimer’s and other chronic, debilitating illnesses: You WILL reach a point where you can no longer do it by yourself. You WILL need in-home help.)
Both John and I are noticing that Bob’s cognition is worsening. It’s getting harder for him to understand and cooperate with what needs to be done. He is quite a bit less sure of his footing, so, for example, it’s scary for him to step into the bathtub, even with John and me holding onto him. He walks more slowly now and is hunching over a bit. Advancing age and debilitating illness are definitely taking their toll on him.
Although he’s not always sure who I am, when he does seem to know me, he can still tell me he loves me, sometimes even when I haven’t said it first.
And so we go onward day by day, toward the inevitability inherent in this devastating illness, taking some solace in small victories, like the words, “I love you.”
Fly Like An Eagle
Comments (13)The old pilot is heading westward, the glow of the setting sun turning the silver wings of his aircraft to gold, the arc of his life trailing behind him in memories forever lost.
And yet somehow he knows the way like a migrating bird knows the way. It is an instinct above and beyond the damage done to his brain by Alzheimer’s.
He is not yet on final approach, but the time for that will come sooner than later, and in his soul he knows it.
With a deft hand and the light touch borne of years of experience, he aligns his craft with the runway far in the distance. The runway, too, glows gold.
The runway is not an earthly tarmac, it’s a skyway to the stars that flows ever forward to the far reaches of the universe and on past time itself.
Like birds that must answer the call to migrate, we must all answer the call of this journey … from birth to death, from dust to stardust.
The old pilot smiles, his face aglow with the setting sun.
He is finally going home.
Seven Long Years
One chilly morning, seven years ago this month, Bob could not find the drawer in which his underwear had been kept for years. Uh-oh, I thought, this is definitely not good. Then began a series of doctor visits and tests that would culminate in his diagnosis of Alzheimer’s Disease on July 5, 2001.
I’ve read, and had it confirmed by Bob’s neurologist, that the disease typically starts several years before the actual diagnosis. And, sure enough, there were clues along the way, but subtle enough that I didn’t pick up on them, having never before been around anyone with AD.
In February 1995, when Bob and I were first together, one day he told me he could no longer do numbers in his head like he used to be able to do. If I had been wise to Alzheimer’s, I might have picked up on that as an early sign that something wasn’t right, but he was still functioning normally in every other respect, so I didn’t catch that clue.
Of course, getting diagnosed with AD early in the illness does not mean a person will be cured of it. But starting the meds early will slow the progression of the disease, in effect buying time in case more effective meds come down the pike.
At present, although there is no cure, and although there is no firm agreement yet on what causes the disease, there is hope. Research and clinical trials are on-going, and sooner or later, treatments and/or medications will be found to halt the illness, reverse it, or even better, prevent it altogether.
That hope is a tiny light in a long, dark tunnel. But it’s something to hang onto anyway.
Whispers in the Night
Last night I woke to a sound that at first I couldn’t identify, then a split second later I realized Bob was whispering a phrase over and over. Then he switched to another phrase, still whispering. I can’t recall what he was saying, just the sound of his whispers in the night.
He is drifting away into a world of his own, and yet there still are moments of connection with me, such as yesterday evening when I stood by his chair, held his hand and smiled at him. All at once he brightened with recognition and, smiling back, said, “Suzy!” And then he said, “I love you.”
Unplugged
Today I called Dish Network and totally cancelled our account. Several weeks ago I unplugged everything related to the TV, because having it on had become too upsetting for Bob. For some time now, he’s been unable to follow any type of program, even one as simple as the Andy Griffith Show. What happens is that for someone with Alzheimer’s, what’s on TV can appear to be reality. If they see a fire, say, on the news or in a show, they’re likely to think the fire is right there in front of them. As for me, I haven’t even missed watching TV; there are better ways to waste time!
Anxiety/Paranoia — It’s Back
During the past couple of weeks, Bob has had anxiety/paranoia again, pretty much every day, starting in about mid-afternoon or evening. The two usually go together in him. I’m giving him the lowest possible dose of the meds for controlling those symptoms so he doesn’t get too groggy.
When he’s scared, he’ll usually say, “I’m scared.” When he says, “Something’s wrong,” that’s when I know he’s paranoid. When he’s paranoid, he also often says something about someone killing people, or he’ll tell me to be careful, or he’ll say he doesn’t want to hurt anyone. Where all of that comes from, I have no clue. As far as I know, nothing in his life suggests that he witnessed or participated in any violence. So I wonder if it could come from a violent scene in a movie or on TV.
Maybe it’s simply a result of his tangled brain.
At least he’s not seeing anything disturbing on TV now. Our TV has been unplugged for some time, because he couldn’t follow any of the programs, and they just seemed to upset him. I’m finding it easy to live without TV; no withdrawal symptoms.
Haiku
no moon tonight
the path is hard to find
come take my hand
© 2006 Suzanne Raymer
Going Away?
Yesterday afternoon as I sat at the computer writing an e-mail, Bob came into the room and asked, “Are you going away?”
I assured him that, no, I was not going away.
Then he said, “I’m here for you,” which at first seemed an odd response.
I asked if he was worried I might go away.
“Yes,” he said.”
Again I assured him that I would be with him. “I’m sticking with you,” I said.
How scary it must be to think that the one person upon whom you most depend might go away from you. He has become the little child who wants to make sure he’s not abandoned. Somehow he knows he can’t cope on his own anymore, that he will never be able to do so again.
“Are you going away?” is the same as “Don’t leave me.”
“I’m here for you,” is the same as “Be here for me.”
Of course I won’t leave you. Of course I’ll be here for you.
Alzheimer’s … it breaks your heart and warms your heart in one fell swoop.
