I am an Alzheimer’s caregiver. I didn’t want to be. I was not prepared for the job. I had no idea that the tasks involved would be far more complex, far more difficult than anything I had ever done or attempted to do in my life before Alzheimer’s . I’m not sure I can do it. What if I can’t?

On February 2, 2017 I was delivered a seven page document entitled “Memory Clinic Neuropsychological Evaluation” which had all the warmth of a treatise on How to Skin a Catfish. My eyes teared over as I scanned the charts and graphs looking for the bottom line…because that’s what I did in business. I finally found it in the middle of page five.

“The current set of neurocognitive data was most suggestive of a diagnosis of an early state dementia of primary cortical etiology such as Alzheimer’s disease….Marked reduction in semantic verbal fluency in the presence of intact phonemic verbal fluency further supports a primary cortical etiology.“

Huh? You got that? I didn’t. My mind and time froze at Alzheimer’s. To be perfectly honest, I shouldn’t have been surprised. I had seen it coming even though I couldn’t define what “it” was.

It starts out with small things. You know, forgetting one of the grandkids names. Asking the same question multiple times. Hiding her purse, losing her keys, creeping paranoia and a thousand other small tells that only a spouse would recognize.

I, like most of us, had had little or no exposure to dementia or Alzheimer’s. I didn’t know that Alzheimer’s was only one of a number of diseases that existed under the broad umbrella of dementia. According to to the authorities, there are approximately 400 types of dementia of which Alzheimer’s is the best known and most prevalent, comprising between 60 and 70 per cent of all dementias. Vascular and frontotemporal dementia compose the vast majority of the rest. While there are obvious differences, I would say that these are distinctions without a difference. They are all progressive brain diseases for which there are only palliative treatments, no curative protocols.

My darling wife S, for whom this meeting was held, did not react to what the clinician had just told us. ” Testing data indicates that you have dementia, most likely Alzheimer’s”. I don’t remember with any clarity what followed. There was a brief disjointed discussion of treatment, but it became clear to me even in this fog of grief and partial disbelief, that there was nothing much that could be done. Yes, there there were more tests to insure that she didn’t have one of the other dementias, and there was a medication or two that may or may not slow the progress of the disease, and no, while there were some general guidelines about what to expect in terms of progress of the disease, there was no certain timeline upon which would serve as a foundation for the rest of her life…and mine.

The clinician recommended a couple of books and suggested a follow up meeting with a member of the Alzheimer’s Association who was co-located with the medical staff of the Baylor Memory Center. This was too much coming much too fast. My world had just changed in ways that would be revealed to me in bits and pieces over whatever time we had left.

When she asked me if I was going to be the primary caregiver, I had no idea what to say. And I was too mentally paralyzed to ask what a caregiver had to do. I was to find out soon enough.

I read the books that were recommended, I spent hours on the internet trying to educate myself about what was to come. I scheduled more doctor’s appointments. and ordered the first of many prescriptions of uncertain efficacy. I struggled with whether or what to tell Sandra, and the kids and our friends.

There is much pain to endure when watching a loved one suffer with AD. There is the pain of perpetual grief. There is the raw wound of continual loss. There is the struggle to preserve dignity and the desire to respect the present and cling to the past. However, in the midst of the heartache there is a small glimmer of light that exists to remind us of the things that AD can’t take away…the warmth of a touch, the importance of smiles and laughter, and he knowledge of what it truly means to experience unconditional love and acceptance.

According to data from the Alzheimer’s Organization, the average life expectancy of someone with Alzheimer’s Disease (AD) is four to eight years. But the reality may be far different depending on age at time of diagnosis, general health of the patient, availability of on-going care, access to professional clinical treatment and many other factors. During this period of time, it’s highly unlikely that the patient’s, your loved one, will get better. In fact, I have heard this period between diagnosis and death characterized as “the long goodbye”. There is no one or best way to navigate this painful period as while there are commonalities in symptoms suffered, every person lives it out in their own way with their own set of conditions that must be dealt with. It’s important for a caregiver, in particular a spouse or family member to remember that people living with dementia of any kind are usually capable of more than we can imagine, and the situation will call out for us to learn to live and to show our love in ways that we didn’t know possible.

As a husband and caregiver to my wife, I have struggled to come to grips with our new life situation. I’ve had to learn to deal with a range of emotions ranging from sadness and grief, to frustration and anger. Sadness that, for reasons I could not fathom, my wife and life long partner has become a prisoner of some neuron destroying plaque and tangles in her brain that were progressively destroying not only her memory and thinking skills, but were slowly, but surely negatively changing who she was and what she could be. My frustration and anger was most often stimulated by ignorance. Ignorance of the disease. Ignorance of what to expect, and ignorance of how best to deal with her issues as they arose. Thankfully I’ve had the benefit of loving family and friends, but also the continuous assistance of professional caregivers who are with us 24 hours a day who have not only provided personal care for S., but have educated me on what it means and how to behave as a husband/caregiver. One pivotal bit of advice I was given by them when I was frustrated by what S. was or was not doing was to remember, “it’s the disease, it’s not her, it’s the disease”.

There is no doubt that Alzheimer’s is a devastating condition that currently affects millions of people, and will affect millions more. It is clinically treatable, but not curable. It robs the individual of their memory, their ability to think and reason, and ultimately of how to exist, but most importantly you and I must know and remember that it doesn’t take away their humanity or their personhood.

Some years ago a created a set of “ideal” wedding vows. I repeat them here because, well just because…

“I take you as my wife with all your faults and strengths, as I offer myself to you with my own faults and strengths. I will help you when you need help and turn to you when I need help. I choose you as the person with whom I will spend my life.”

She needs my help and I will give it as best I can.