The Three Hopes of Alzheimer’s
Every September, I (Tom) have the honor of teaching seminarians about Pastoral Counseling at the Pontifical North American College in Rome. This year in Rome was paticularly special as the late Pope Francis had declared 2025 as a Jubilee Year of Hope. In general, a Jubilee year is a period of renewal, grace, and transformation and Pope Francis challenged us for this year to be “Pilgrims of Hope.”
When it comes to caring for someone with Alzheimer’s or other forms of dementia, hope can seem complicated. (Remember that Alzheimer’s Disease is one form of many brain diseases generally referred to as dementia.) Many years ago, when Donna’s mom was first diagnosed with Alzheimer’s and vascular dementia, we wondered what we could hope for her, for ourselves, and for others living the challenges that dementia brings. Looking back, it seems like we experienced three dimensions of hope during our “pilgrimage” as care partners with mom:
Hope for a cure.
Hope that mom wouldn’t suffer.
Hope that we could be good care partners.
Hope for a Cure
We were very aware there was zero history of anyone being “cured” of dementia, yet we hoped for one. Hope in this dimension was our desire for Mom’s disease to be gone. Wasn’t there some treatment out there that could help? We were scared, she was scared, because we knew that medical research and knowledge had not identified a cure.
There are hopeful signs in recent years and the science side of the Alzheimer’s journey continues to learn more that may lead to a cure in the future. The Alzheimer’s Association has actually coined the term the Generation of Hope to capture positive developments in lifestyle changes, diagnosis (e.g., blood tests) and early intervention medications. While lifestyle changes like diet and exercise seem pretty clear in their preventive and symptom-slowing impact, there are still questions to be sorted out with research findings regarding diagnosis and medicines that make it hard to trust that answers have been found. Regardless, all of us are still hoping that clear answers will eventually be discovered.
Hope That Mom Wouldn’t Suffer
One of our fears was that Mom’s experience of dementia would be one of physical and emotional suffering and there wasn’t anything we could do about it. Through other caregivers, dementia educators and health professionals, we learned that there were many things we could do for Mom that could help soften the sense of suffering ahead. Things like helping her stay connected to people and things she valued in life, assembling a dementia-knowledgeable health care team, tuning in to her emotions, responding effectively to her hallucinations and delusions, etc., all helped to address and soften the emotional difficulties that she experienced.
It isn’t reasonable to assume that we can prevent all our loved one’s pain and suffering – or our own – but it helps to remember that the word suffering has roots in the Latin word sufferre, which means to carry or to bear up under something that stresses us. If we can stay focused on our loved one as a person of dignity and value regardless of abilities, we will better carry him or her in ways that bear up under heartbreak and struggle. We often found hope that we might ease Mom’s suffering reinforced by Helen Keller’s quote: “All the world is full of suffering . . . It is also full of overcoming.”
Hope That We Could Be Good Care Partners
A third dimension of hope focused on what we could do within ourselves and for ourselves as care partners for Mom. All of us hope to be good caregivers for our loved ones but sometimes the importance of focusing on ourselves seems counter-intuitive since we assume that we should only be focused on them. We thought that way and had much to learn over the years.
Within Ourselves:
We all need skills for managing the emotions that come with caregiving . Learning tools for realistic thinking, mindfulness, acceptance, controlled breathing, maintaining healthy self-esteem, and recognizing the impact of your past relationship with your loved ones on your caregiving role form a solid foundation for maintaining hope. Upon such a foundation you can construct appreciation of how you and your loved one are gifts to each other, how to treasure simplicity in the present moments of relationship, and how your love for one another provides a living witness to the reality of unconditional love.
For Ourselves:
If we neglect to care for ourselves, caregiving stress intensifies in ways that makes hope very faint. Learning to make choices that lead to your own healthy habits, personally meaningful activities, time management, effective communication, etc., by contrast will bolster hope and build caregiving resilience. Consistent sleep and eating patterns, regular exercise, hobbies, spending time with friends, learning about dementia, joining caregiving support groups, and obtaining in-home or facility-based caregiving assistance are all examples of actions you can take to help manage stress and increase balance in your care partner role.
Hope Is a Verb
In the end, being pilgrims of hope on the journey of caregiving is a blessing to loved ones, to ourselves, to our families and to our communities. No doubt, it is a hard journey, but it is an even harder journey if we believe that hope is just a feeling or desire for something we don’t have. Instead, we can understand hope as a verb – a doing word – than we can see hope as a choice to put our faith in something we haven’t fully experienced yet. Hope is, ultimately, trusting in the power of faith and love to motivate our caregiving actions within ourselves, for ourselves and for our loved ones. When we can embrace this, faith and hope unite illuminating the wisdom of the late Pope Francis who said in his encyclical Lumen Fideli that faith, like hope, “…is not a light that scatters our darkness but a lamp that guides our steps and suffices for the journey.”
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