As Alzheimer's disease (AD) progresses, it destroys memory, brings on erratic behavior and robs a person of their personality. You may find you are caring for a father who no longer recognizes you; a mother with whom you no longer share any emotional connection; or a spouse who does not appreciate, or even want your help. How do you keep caring for and loving someone who is a shell of the person you once knew?
Most people are aware, even if only a little, of the expected prognosis of the disease. Even so, this does not make it easy to go through the stages. It is only natural to assume and expect our parents to share the precious memories that we still hold dear, yet those who suffer from the disease are victims as their memories disappear one by one. As family caregivers stand by helplessly; it is important to remember that we have to care for our mental, physical and emotional wellbeing.
Two experts who work with AD patients and their families spoke with AgingCare.com about this dilemma.
Cindy Laverty , a caregiver advocate, founder of The Care Company and The Cindy Laverty caregiving talk show, and a former caregiver herself, feels the most difficult part is letting go of the relationship you once shared with your loved one. "The father who once provided strength and comfort is no longer able to," she says. "Now, he needs your strength and comfort."
Ms. Laverty recommends that you allow yourself time to feel whatever emotions come your way. Giving yourself permission to grieve will help you go on, to continue caregiving with more purpose and clarity. "Feel the sadness, anger, unfairness and the frustration. Allow yourself time to grieve. Try to fully embrace the fact that you can do nothing to bring your loved's memory or personality one back."
Kenneth M. Sakauye, a geriatric psychiatrist at UT Medical Group in Memphis, Tennessee, says while the disease changes personalities and relationships, "that doesn't mean you stop loving," however, "you may have to dig a little deeper to find that love." On the toughest days, try to remember how your loved one once was. If there was once an affectionate bond, he says, it hasn't disappeared. "It's changing and growing," he says. Adult children who have the opportunity to care for their aging parents experience a part of the natural life cycle as the caregiving roles reverse.
As an example of how relationships evolve, Dr. Sakauye cites a caregiver who spent her entire life seeking her mother's approval and affection. She felt her mother loved her sister more. Yet after her mother was diagnosed with Alzheimer's, she stopped playing favorites – and the daughter stopped caring about being the favorite. She simply enjoyed the time they had left together. It created a special bond that actually brought them closer than ever before.
No relationship remains the same forever. "As a parent, you loved your children differently when they were two than when they were 20," he points out. "It's the same as your parent ages."
Even in the most advanced cases of Alzheimer's, your loved one may have moments of clarity and recognition. They will be fleeting, but embrace, treasure and remember them. Your loved one is still there, and your love has not abandoned you.