Today 5.7 million Americans are living with Alzheimer’s and related dementias, diseases that are blind to gender, ethnicity, political party and faith. By 2050 the number of those “living with” is projected to rise to nearly 14 million. Standing alongside those living with these brain diseases are millions of family and friends affected as well.
I think about the arc of my mother’s life as college sorority sister; to wife, mother and career; then my father’s passing; through the whimsical and friendly hallucinations she initially experienced; to the terrifying delusions that caused despair and injury; then the decline of advanced dementia and death.
The staff of the Memory Center asked me to thin out her closet because too many clothes only confused my once stylish mother. It reminded me how impeccably she would dress. Nothing clashed, not even the things you couldn’t see. However, in her illness she’d mix together outfits of plaids, prints and stripes.
In her late stages I’d drive to the side entrance of the memory center. From that vantage point I could see my mother’s window. I could see the outline of her heavy wooden dresser and the blue lamp, a treasured gift from my father. I could see the television she no longer watched, but I couldn’t see her. Some days I’d park and go in for a visit. Other days, sliding my foot to the accelerator I’d shudder from the intensity of my tears while biting back a scream from the center of my soul.
Dementia took so much from both of us.
How do you keep yourself grounded while living through the decline of a loved one with a debilitating illness? The simple answer: it’s not easy. We all know the statistics around stress leading to higher mortality rates in caregivers than non-caregivers of the same age. But there are options to consider:
Keep hope alive, give back together. Find inspiration from those living with brain disease and their care partners who muster the strength to speak out loud about this frightening illness in order to educate us all. There are ways for you and your loved one to be advocates at all stages of brain disease. You could support others beginning their journey by sharing your expertise and experience. Or you could further the advancement of science in finding a cure, a prevention or a treatment. Greg O’Brien is living with Alzheimer’s disease and as an acclaimed author of “On Pluto, Inside the Mind of Alzheimer’s,” he recently published an article in Psychology Today about our friends Steve and Judy Johanson and their gift of giving back through this debilitating illness.
Accept reality, you aren’t a superhero. No matter how much energy you put in, today you cannot stop the ultimate decline of a loved one after a diagnosis of dementia or Alzheimer’s. The time you have together may be short or long, science currently gives us no clear answer. Live your life together, fully. The best you can do as a care partner is to emotionally support your loved one in living a quality of life that matters while practicing proactive self-care for YOURSELF.
Don’t give into guilt, it’s a trap. Science teaches us that no progression is ever completely linear. The trajectory of Alzheimer’s for those living with brain disease and their care partners is a complicated emotional inverse of most progressions: As one declines, the other must advance.
Lisa B Capp
Lisa B Capp is a blogger, an activist and a dementia caregiving survivor. As a High Tech Change Consultant, Lisa worked with leaders of global business, governments and non-profits. Her passion for empowering strength through transition in her professional work is now focused on those living a care partner life. Connect on Twitter @lisabcapp and LinkedIn: Lisa B Capp.
