A Daughter’s Journey as Caregiver to Parents with Alzheimer’s Disease

As the impact of Alzheimer’s disease is increasingly felt in families throughout America, the difficult role of caregiver has, at the same time, been brought more into the spotlight. Sandy Siefke is one who found herself in this emerging group of caregivers.

Sandy is a mother of three and a former teacher. She is involved in Assistance League of Victor Valley, St. Mary Hospital Foundation and other community activities. She has lived in Apple Valley for 44 years with husband, Joe, former senior geologist for U.S. Borax.

Sandy has been a caregiver for both of her parents and experienced a poignant, empowering journey that, ultimately, enabled her to help others on a similar road.

Sandy’s father was diagnosed with Alzheimers’s 16 years ago and thus began her journey. She cared for him and her mother while they were in their home, running errands, making meals, taking them to doctor’s appointments and handling finances. She witnessed the slow deterioration of her father’s behavior which escalated to verbal threats and outbursts in which he threated to kill her and others. She was terrified. This was not her father, she thought, but the disease, the demon, of Alzheimer’s.

His personality became bipolar – a teddy bear one minute and a grizzly bear the next. To Sandy, his eyes were the lens to the short-circuiting in his brain. A distant unfocused gaze replaced the clarity and vitality that once existed.

Sandy realized that he was incapable of making decisions for himself. After he suffered a stroke, he deteriorated to the point that it became necessary to place him into a memory care community. The stress took its toll on Sandy’s mother; she started to decline and become ill herself.

When her father passed away, Sandy turned her attention to caring for her mother. She, too, was stricken with Alzheimer’s. “My mother,” Sandy says, “who was once a well-read, talented and recognized artist, and a 5-star Italian Chef, was dying in stages right before my eyes as her memory faded.” Her mother was ensnared in the claws of a disease which robs a person of who they are. It puts those who love them into a position of having to cope with the tortuous withdrawal of their loved one.

Initially, Sandy had difficulty accepting the situation and the new reality of her mother’s disease. She would become impatient asking why her mother couldn’t do simple tasks. She had a difficult time accepting that her mother had this horrible, insidious disease and when she became angry, she was left in a mire of guilt.

As the disease progressed, Sandy continued to care for her mother in her own home. Dealing with her mother left Sandy physically, emotionally, and spiritually drained. She was blind to how gravely it was affecting her. Sandy’s son, a psychologist, ultimately made her aware of the toll caregiving was having on her and that she was ill-equipped and not qualified to continue the role of caregiver.

It was difficult for Sandy to place her mother in assisted-living setting. Sandy, being Italian, meant you care for your parents. However, she was close to having a breakdown. She developed high blood pressure, anxiety, and severe stress. She felt tremendous guilt, as a daughter and a Christian, for placing her mother. It took time, but the power of her faith, and the support of family and friends helped her overcome these travails and let go of personal feelings of guilt.

Sandy’s mother was secure in the assisted-living environment, but the unremitting disease tightened its grip, and her mother’s anger and threats were reminiscent of her father. It was necessary to come to terms, not in an abstract sense, Sandy realized, that the irrational behavior was a reflection of Alzheimer’s and not the person’s individual character.

She learned how to relate to her mother in a different way, that is, to relate to her mother in her mother’s world. Sandy adopted her motto, “Mercy Before Truth”. This meant if her mother became agitated, angry, and combative, she would talk to her about her memories of her childhood, show old photos, or ask about Italian recipes she had made. Sandy learned, and it became her goal, to do or say whatever it took to distract her mother from an agitated or fearful behavior. She found it fruitful to re-direct her to a happy place in her mother’s own world, usually somewhere in the past or a present delusion.

Sandy learned that you can’t reason with Alzheimer’s sufferers, and that facts do not linger with them. Feelings linger, facts disperse. It is necessary “to enter their moment,” Sandy says, to bring happy and peaceful feelings to them. What may work one time may not work another time, but by assessing their condition, you can experiment with what may work at that moment in time. Most of all, Sandy treated her mother with kindness and tried to bring joy and peace to each moment.

Ironically, there are ways that only grief and tribulation can build deep emotional strength in an individual when fragility and vulnerability had taken root. The new strength enabled Sandy to reclaim hope and acquire a profound empathy for others. It compelled her to help those that could benefit from her wisdom.

Sandy continues her journey with Alzheimer’s by helping caregivers, whose loved ones are going through their own unique journeys, by being a facilitator for the Memory Loss Support Group for Sterling Commons Memory Care. Sandy says, “I feel God has gifted me in this journey and taught me so much about how to bring peace to your loved one and accept the grace, peace, and healing to make the journey for the caregiver and their loved one easier”. For one woman, what was her greatest challenge became her greatest gift.

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