Alzheimer's Disease: Trials and Joy

I am about to add another career to my long list of professional adventures: Caregiver. Next week I begin what I perceive to potentially be my most challenging job yet, caring for an aging couple that has been diagnosed with Alzheimer’s disease. Well, I should clarify. I have already been “caring” for these people, let’s call them Lisa and Joseph, for the last six years. As a matter of fact, I don’t just “care” for them I love them dearly! Starting yesterday, my caring took on a more formal role, as I am now getting paid to sit with them, keep them safe, entertain them and bring moments of meaning and joy to their lives for 60 hours a week. Some will refer to me as a caregiver, the Alzheimer’s community might call me a long-term “activity partner;” I call it a mix between exhilarating and terrifying! I plan to document my weekly triumphs and defeats here with the hopes of normalizing the experiences of anyone who is touched by Alzheimer’s in any way at all.

So, here it goes. Lisa and Joseph (both 85) have both been diagnosed with Alzheimer’s within the last year. Prior to their diagnoses, they were healthy, active, adventurous, intelligent, successful world travelers. They have two children and four grandchildren, and are a very close and loving family. Joseph was diagnosed in February and his progress has seemed somewhat stable. Lisa, on the other hand, was diagnosed in October and her memory and functioning seem to be declining on a daily basis. With Joseph, the most prominent symptom is confusion and anxiety. His long-term memory remains fully in tact, and his short-term memory is fairly good. However, he struggles to reason and complete previously simple tasks such as managing his finances and changing channels on the TV. Joseph, while physically healthy and able, has become mostly inactive and spends the majority of his day watching sports on TV. He is often tentative to leave the house, but still takes pride in his daily drives around town.

Lisa is also relatively physically healthy, but seems to be weakening daily. She complains of difficulty seeing and has gone from religiously walking 3 miles a day to stumbling to the corner and back, then collapsing on the floor of the living room to recover. She has had several frightening falls in the past few months, which have ultimately led to her family insisting on a caregiver. Lisa often cannot remember what you tell her for even a few minutes and frequently forgets whether or not she has eaten. Lisa has a long history of taking care of and supporting herself and therefore does not believe in relaxing and letting others care for her. She is a strong, independent and proud woman and mother. Perhaps the most difficult of Lisa’s symptoms is what is known as anosognosia. Anosognosia is a lack of awareness of impairment and affects up to 81% of Alzheimer’s sufferers. Anosognosia is not denial. There are literally changes in brain cells that result in a loss of the ability to be self-aware and accept new self-images of one’s self. What this means for Lisa is that she still thinks she is walking three miles a day, walking to the grocery store daily to purchase groceries and cooking three meals a day for Joseph and herself. In fact, she is doing none of these tasks anymore. But she denies help because she does not see that she needs any; as far as she is concerned she is more capable than ever. Needless to say, caring for someone who does not understand that they need care is a daunting task!

Given the fact that I am somewhat terrified of my new role, how did I ever stumble into it? Well, very simply, Lisa and Joseph’s children asked me to care for their parents. Both children have become part-time caregivers for their parents, which has led to their own exhaustion and frustration. On top of that, they are witnessing a degeneration in their parents that is difficult to digest and their most recent memories of their parents are filled with constant irritation, arguments and hopelessness. The children have both noticed that I have always been able to make their parents laugh in the most unconventional ways, a characteristic that they consider the key to creating moments of joy (and maintaining safety) in their parents’ lives as well as a means to create a more balanced and fulfilling relationship for them. So, they asked me to be a caregiver. My immediate reaction was that this was a terrible idea and could only lead to more frustration and perhaps even a demise of our own relationships. However, as I have witnessed the children’s struggle with the caring of their parents, I knew I had to accept. If for no other reason than to give the children the respite that they need and to allow them to rekindle the loving relationship they have always had with their parents. These two people and their families have given me so much love and support since I have known them, that I want to give them the gift of precious moments and memories of their parents for as long as they have the privilege of having parents in their lives.

And so it begins. I have had almost two weeks to ruminate over the possibilities – both positive and negative of my newest endeavor. The most frightening fear is that not only will Joseph and Lisa come to despise me and my presence, but their children will blame me for any further falls and/or unhappiness expressed by their parents. I am also slightly apprehensive for fear of developing anxiety and depression as I witness the progression of this terrible disease on a personal level. On the flip side I can see everyone’s relationships improving and abundant moments of joy being created and shared with the entire family. Selfishly, I am looking forward to touching the lives of these two amazing people and their extended families. I know I have a lot to gain from this experience and I am all in!