Excerpt from the book Caregiving with Strength, written by Eleanor Silverberg
Posting from Gilda Spitz’s blog Sam’s Alzheimer Highway 9/08/2010
Gilda Spitz was a dedicated family caregiver for her beloved father, Sam Schein who passed away January 1, 2010 after a long battle with Alzheimers disease. Following is a posting from her blog that she created in his memory……..
Over the past year, many people have asked me how long my father had suffered from Alzheimer’s Disease. There are actually two answers to that question: almost six years or almost thirteen. Why? Because it depends on whether I count from when he was diagnosed, or when symptoms began to appear.
Little did we know how long the disease had been secretly progressing on Sam’s Alzheimer highway. Just by looking at him, you certainly couldn’t tell.
1997
The first clue occurred seven years before diagnosis and over twelve years before his death.
As I described in an earlier post, in 1997 my friend Karen had asked Sam to officiate at her son and daughter’s combined Bar / Bat Mitzvah, and he had agreed. But when I called him the day before the big event to make arrangements to pick him up, he informed me that he had made other plans – and he really didn’t care that he had left my friend in the lurch or embarrassed me.
I was furious. His lack of courtesy was totally foreign to his normal personality, but it never occurred to me that there was a particular reason for his rudeness. That incident was probably our earliest sign that something was seriously wrong.
But just looking at him, you never would have known. Here’s a photo of Sam with our son Adam around that time, looking perfectly normal.
2000
Three years later, there was a second big sign. Sam was at fault in an automobile accident and was utterly unable to describe what happened. He hadn’t been injured, but he couldn’t remember where the other vehicle came from or which side of his car had been damaged. At the time, I attributed his confusion to simple shock, but I didn’t pick up on the big clue.
Again, it would have been impossible to guess at the true story by looking at him. Here’s a photo of Sam taken that same year with our son Bryan, still looking like his old self.
2005
Even a year after diagnosis in May 2004, Sam still looked like his normal self. True, he was now walking with a walker, and true, he couldn’t tell you what he had for breakfast. But he could still sing all his Hebrew and Yiddish songs, pray at Sabbath services on Friday afternoons, and carry on normal conversations during visits with his family. And he was still his cheerful self in this photo with Peter.
2006
But a year later, the disease that had slowly been wreaking havoc on the inside for almost ten years was starting to make itself visible on the outside. In this photo, there was now a vagueness in his eyes that we had never seen before.
The following summer, the physical changes were even more dramatic. Sam was now refusing to wear his dentures, which significantly changed the shape of his face, and had progressed from walker to wheelchair. And he could not longer respond to requests to smile for, or even look at, the camera.
There’s an old saying that a picture is worth a thousand words. Is it true? With Alzheimer’s Disease, only after many years of stealth attacks behind the scenes.
Caregiving: Grief Work
Words could not have portrayed the disease progression better than Gilda’s portrayal … the pictures are worth more than a thousand words.
While I was assisting Gilda, we had conversations where she expressed the sadness, at times shedding tears, witnessing her father disappearing slowly as the disease progressed. Gilda relayed that her father had lost his ability to express and comprehend language in the latter stage of the disease. During her visits, she would blurt out, ”I miss you!” to receive no response from the man who thought the world of her. Despite his physical presence, the father Gilda knew and loved was not present any longer.
In addition to “feeling” the grief, family members “do” the grief by problem-solving related to the cause. I observed Gilda’s sense of responsibililty and dedication, conscious of her duty as a loving daughter, always wanting to do the ”right” thing. Like so many family members, she took on the caregiving role willingly despite the trials and tribulations encountered along Sam’s Alzheimer Highway.
Gilda’s portrayal also brought to light the reality that in the early to middle stage of the disease, afflicted individuals can live their lives with the illness going undetected and not diagnosed. It is often close family members who first notice and experience the loss due to changes such as forgotten medical appointments, missed medication doses or getting lost in familiar places.
Many family members have experiences similar to Gilda’s with the loss guiding them in a direction towards appropriate problem-solving behavior and responsible caregiving spanning years. Other family members can be struggling in the early stages with the loss that facing the reality and transitioning to the caregiving role is difficult. In the later stages as the demands increase with further cognitive decline, the grief may play havoc with the caregivers energy, mood and decision making, making it more difficult to meet the demands. In her 2007 research, Jacqueline Frank found evidence that grief is a major barrier faced by Alzheimer’s caregivers and suggested interventions be applied to address their grief. The 3-A Approach is a psychosocial intervention that is intended to assist those having difficulty coping, attempting to prevent placing the afflicted individual’s and family member’s well-being and safety at risk.