Alzheimer’s affects 1 in 10 people aged 65 and older – but it impacts far more family members and loved ones of the patient. The following is an incredible daughter’s perspective of watching her beloved mom slip away. It is a must read to help everyone remember the wrenching effects this disease on the patient’s entire family. By ME Hommell-Chidiac
“Hi, mom! How are you?”
“Who are you?”
“I’m your daughter.”
“My daughter is asleep in her crib.”
The first time I had this conversation with my mother, it broke my heart. When mom was diagnosed with Alzheimer’s six years before, I knew the day might come when she no longer recognized me. I never really imagined that it would be so dramatic. I suppose that I should be grateful that she still remembered having a daughter at all, but looking now into the clueless eyes of the mother who raised me, loved me, doted on me since birth made my heart sink somewhere around my ankles.
Alzheimer’s is often referred to as ‘The Long Goodbye’, and with good reason. From the time of diagnosis until death, this dreaded disease marches forward, sometimes exceptionally slowly. As friends and family, we watch as the person we once knew loses their personality and abilities bit by bit and morphs into an empty vessel of a person. Unlike other incurable diseases whose developments can often be monitored, and timeframes offered, Alzheimer’s is a guessing game. Each person progresses differently. But two things are certain in today’s world – it is irreversible, and it is terminal. I pray the day comes when that is no longer the case.
There are two ways in which the disease takes its toll. One is the decline of the physical aspects of the body which can eventually affect speech, walking, the ability to eat, the digestive process, and other bodily behaviors and functions as the organs degenerate and the body no longer receives the signals from the brain as it once did. The second, and more apparent, is the declination of the mind. Although still not fully understood, researchers believe that the most common cause is the buildup of a harmful protein, called amyloid, which eventually forms plaques and tangles, both obstruct the brain’s processes and kill healthy brain cells. Often, the mental phase progresses much faster than the physical one, although either may seem like an eternity to those who observe its rampage on loved ones. Stages define the Alzheimer’s progress, and these stages may advance from one to another quickly or may take several years to advance at all. While some experts use a three-stage model, most Alzheimer’s researchers recognize seven stages https://www.alzheimers.net/stages-of-alzheimers-disease/ as developed by Dr. Barry Reisberg. In easy-to-read language, the characteristics from Stage 1 with little or no impairment to Stage 7 with a severe decline, are outlined with key indicators for each stage.
Healthcare providers will often counsel the patient’s families and friends that Alzheimer’s can be more difficult for them to cope than the person afflicted. That is especially true in the later stages as the patient may not be aware, or have the ability to be aware, of what is happening. Anyone who has experienced someone with Alzheimer’s can probably attest to the truthfulness of this statement. Sometimes the pain can be too much, and families stop visiting altogether to avoid the emotions, which is even more unfortunate for the victim of this disease.
Visiting with my mother in her Assisted Living Facility, I listened as she recounts her day out shopping, or helping her long since deceased mother, or dealing with her infant children and she is happy. I know none of these activities have occurred that day, but I agree and comment and let her merrily chat away. I know I am providing company and companionship, even though she may not always recognize me. I often take time to observe her before I make my presence known as she sits, wheelchair-bound, appearing as a fraction of the once vibrant person she was staring off into space. I often wonder what, if anything, is going through her mind.
The phrase ‘waiting to die’ has been used to describe these convalescents. I am brought to tears all too often seeing her in this state knowing she’s only going to deteriorate further, both physically and cognitively, and at an undetermined pace. And even though I have educated myself on what is happening to her body and mind as well as what may happen to her, that understanding doesn’t make it any less heartbreaking, nor does time.
One day, I will say the final goodbye to my mother as she passes on. I shall miss the presence of this fun, energetic, strong-willed, confident, independent woman. This pearl-clad woman who was the epitome of Southern gentility and a stickler for manners; this woman who laid the foundations for the person I am today. For now, I’m saying goodbye mentally each time I see her, each month and year that passes as she slips away at a snail’s pace. But I know I that lost her six years ago in actuality. It’s a very long and emotional goodbye.