As Alzheimer’s disease (AD) progresses, it destroys memories, causes erratic behavior and robs a person of their personality. As a family caregiver, 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 previously gentle, loving spouse who is now bitter, angry and even aggressive. How are you supposed to keep your head up and continue caring for and loving someone who is merely a shell of the person you once knew?
Most people are aware of the prognosis associated with AD and other forms of dementia. Even so, this does not make it any easier to go through the stages of the condition. It is only natural to assume our aging loved ones will share the precious memories that we still hold dear, yet those who suffer from dementia are helpless as their short- and long-term memory slowly fails them.
Family caregivers must stand by and accept that they are powerless to change the course of the disease. In addition to providing hands-on care, witnessing the gradual loss of a loved one’s intelligence, personality and personal history is painful and exhausting. This process is often cited as one of the most devastating aspects of being a dementia caregiver. Nonetheless, we must remember to care for ourselves physically and emotionally. How we handle the most challenging situations throughout this journey can make or break our mental health and ability to continue making positive contributions to our loved ones’ care.
Accepting Alzheimer’s Personality Changes
Cindy Laverty, caregiver advocate and former caregiver to her ex-in-laws, feels that the most difficult part of being a dementia caregiver is letting go of the relationship you once shared with your loved one. “The father who once provided you with strength and comfort is no longer able to do these things,” she explains. “Instead, he needs strength and comfort from you now.”
The relationship you once had still exists in your heart and can be cherished and reflected upon frequently, but you must adjust your expectations to match your loved one’s worsening abilities and changing demeanor. Otherwise, clinging to old expectations will only lead to disappointment and upset.
Laverty recommends that caregivers allow themselves to feel whatever emotions come their way. Giving yourself permission to experience and process anticipatory grief will help you go on to continue caregiving with more purpose and clarity. “Feel the sadness, anger, unfairness and frustration,” she urges. “Allow yourself time to grieve. Try to fully embrace the fact that you can do nothing to bring your loved one’s memory or personality back.”
If you give yourself the time and space to cycle through these difficult emotions, they may be less likely to creep in at inopportune times. Grief is never a neat and convenient process, but it’s important to acknowledge how you are feeling and keep in mind that your attitude can affect your loved one. Dementia may rob seniors of many things, but they are still capable of picking up on their caregivers’ stress level and anxieties.
Loving a Senior with Alzheimer’s Despite Changes in Their Personality
Although dementia can significantly change a senior’s personality and the nature of the relationship you have with them, that doesn’t necessarily mean you love them any less. Dr. Kenneth M. Sakauye, a geriatric psychiatrist at UT Medical Group in Memphis, Tennessee, says, “You may just have to dig a little deeper to find that love.”
On the toughest days, try to remember how your loved one was prior to their diagnosis. If there was once a close, affectionate bond between you, it hasn’t disappeared. “It’s merely changing,” Dr. Sakauye reassures. Reflecting on the past can be an emotional experience but reframing the way you reminisce can be helpful. Mourning the loss of a loved one before they have passed away is a unique and inescapable aspect of dementia caregiving. Grief is to be expected but try not to let it overwhelm you. Strive to focus on the enjoyable moments you had together and how fortunate you were to be able to share them. Things are increasingly complicated now and will likely never be the same moving forward, but there will be other touching moments ahead for both of you—if you keep an open heart and mind.
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 always felt her mother loved her sister more. Yet after her mother was diagnosed with Alzheimer’s, she stopped playing favorites and the caregiving daughter stopped worrying about vying for her approval. She simply focused on enjoying the time they had left together. It created a special bond that actually brought them closer than ever before.
It’s important to understand that no relationship remains the same forever. “As a parent, you loved your children differently when they were two than when they were 20,” Dr. Sakauye points out. “It’s the same as your parent ages.” Spousal relationships change with time, too. Chronic conditions like dementia put families and their relationships through the wringer. No matter how difficult things get, you must remember that the forgetfulness, the difficult personality changes and troubling new behaviors are a result of the disease.
Even in the most advanced cases of Alzheimer’s, your loved one may experience moments of clarity and recognition. They will be fleeting but embrace and treasure them. Your loved one is still there, and your love has not abandoned you. If you’re still struggling to accept all that a dementia diagnosis entails, consider seeking counseling from a mental health professional, joining a local caregiver support group and arranging for respite care so you have time to decompress physically and emotionally. The healthier you are, the more capable you will be of providing quality care and love.