Caregiver Insights
Dealing with Challenges
Caregiving Your Parents
Caring for a parent who has Alzheimer’s or dementia is a heartbreaking experience. You have been connected since birth. They are a part of you, and you feel committed and obligated. But you have your own life to live (family, friends, career, financial obligations…). That’s a fulltime job already, and there is not enough time in the day. No matter what you do, it never seems enough, which often leads to feelings of guilt. How can you cope.
Know that you are not alone. Millions of families are forced to deal with this problem. Older parents often want more of your attention than you can provide. Now you need to remember what they told you years ago: life isn’t fair and none of us always get what we want. Aging has taken them to the point in which these truisms are daily realities. Deep inside, your parents have always wanted the best for you, and now your most important commitment is to your own family. Your family is your present and future. Family is a key to long-term happiness and fulfillment.
With that priority fully in mind, you can set out to be as good of a caregiver as time allows. The caregiving expectations you set for yourself may have to be lower than you would prefer, but that is a reality of memory care. Accepting this is necessary for you to find peace of mind as a caregiver.
Realize that you cannot do this alone. People who try are making a big mistake. You are juggling emotional, logistical, and sometimes financial burdens all at once. Your goal is not to achieve perfection; it is sustainability, safety, and connection.
Get help from people who have experience dealing with the memory care process. Family and friends can be helpful, but support groups, social workers, memory care workers, and elder law and medical professionals have the working knowledge about how to deal with the burdensome issues you are now facing, as well as the new issues that will continue to appear. It will be exceptionally helpful if you can connect with a knowledgeable professional who will become your mentor through the process. Technical issues (medications, advance directives, powers of attorney, wills) and potential thorny social issues like differences among family members may require outside help. Advisors are particularly helpful when you need to consider alternative living arrangements.
As your loved one’s world shrinks, you want to help maintain dignity and a sense of self-worth. This becomes increasingly difficult as awareness, independence, and ability to connect fades. But the time you spend with them can still work wonders. As people with dementia lose contact with reality, they become even more sensitive to non-verbal communication – smiles, laughter, touch, and love. You may have less time than you would like, but you can continue to bring comfort and happiness into their lives.
Unfortunately, one inescapable issue brought on by Alzheimer’s and dementia is the possible genetic implications for your generation and beyond. Genetics is not necessarily destiny, but it is a warning. Tremendous steps are being made in research that will likely lead to better outcomes in the future, but all descendants of people with dementia should stay well informed.
In his book, Being Mortal, Dr. Atul Gwande offered some insights that I believe are meaningful for caregivers of elders with Alzheimer’s and dementia. “People with serious illnesses have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete….” The simple truth is that Alzheimer’s and dementia threaten all the concerns the elders identified.
Gwande’s comments may not be welcome, but they resonate with me. It is worthwhile for you to think about what your parents would have wanted for you if they could have foreseen the current situation years ago. Deep down, they have always wanted you to thrive. Regardless of what happens, that dream should live on.
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