The moment a loved one receives the terrifying diagnosis of Alzheimer’s disease, difficult changes are on the horizon. I can think of nothing more daunting than to be a spouse facing these challenges. The supporting partner must navigate relationship changes, safety issues, as well as medical and financial decisions. At the same time, they are left to grieve the relationship they once knew.
Life will soon be inexplicably changed forever. The partner, now altered by this disease, will likely exhibit challenging behaviors and unpredictable personality changes. It is a difficult road full of unthinkable demands for the one providing care. A new reality requiring a tremendous amount of support. Following are suggestions for those facing this tragedy.
- Seek Knowledge. This strange and difficult process will require an understanding of the disease. Armed with information and insight, the road ahead will be easier to navigate. The Alzheimer’s Association is a good place to start, offering a variety of resources and educational programs.
- Understand Grief. Those affected by Alzheimer’s disease experience personality and behavioral changes. Inevitably, the relationship once enjoyed and the person we once knew disappears, replaced by someone seemingly very different. This loss ushers in the grieving process, a necessary step in facing this tragedy.
- Identify Support. This disease cannot be survived alone. The emotional, financial, and physical challenges are too great. Partner with a trusted family member or friend who is willing to help navigate the decisions and secure the support required.
- Take Safety Precautions. Those affected quickly lose the skills required for sound reasoning. Loss of cognitive function will diminish their ability to drive, safely operate appliances, and function as they once did. It is imperative to place safety considerations above our loved one’s will.
- Learn the Art of Fibbing. Those experiencing cognitive loss will benefit when spared from debating the realities of their world. Necessary absolutes may need to be carried out behind the scenes while maintaining an agreeable front. Redirection and communication skills will be required in order to successfully accomplish this.
- Understand Emotions. Our loved ones have now lost the tools to affectively communicate their feelings. This can result in angry outbursts directed at their caregiver. Understanding everything those with Alzheimer’s do is a form of communication and knowing this disease is responsible for the behavior is essential.
- Accept Help. Others wishing to offer assistance often do not know what is needed. Make a list of things which can no longer be accomplished on your own and be ready with suggestions when offered help. Please ask for help rather than attempting to navigate this impossible road alone.
- Gather Sunshine. It is imperative to continue the process of living. This will require carving out time to pursue interests and activities apart from your spouse. Adult daycares, complimentary companion services, friends, and neighbors are good sources for reprieve. Learn to gather rays of happiness to share with your loved one.
- Make Your Health a Priority. It is common for those providing care to sacrifice their own health to the demands of this disease. It is a valiant gesture which will backfire when failing health no longer allows responsibilities to be carried out. Your loved one will only benefit from your care if you remain healthy enough to do so.
- Reject Feelings of Guilt. This disease is demanding and can be very isolating. It is important to find enjoyment apart from these demands. Understand one person cannot accomplish all that will be required on their own. Refuse to feel guilty and know your best is enough.
Remember you are not alone. Unfortunately, there are many traveling this road. Join a support group where ideas are shared and encouragement is offered. Have grace with yourself and know those on this road understand the enormous challenges you face. May you find strength and encouragement every step of the way.
Judith Ingalsbe is passionate about bringing understanding to those experiencing the effects of dementia. She recently joined other advocates in Washington D.C. to secure funding for research and HOPE for those affected. Judith has gleaned over a decade of caregiving experience with her parents, who were both diagnosed with Alzheimer’s disease and shares these insights in Stone Benches: Understanding the Invisible Footprints of Dementia. For more information visit StoneBenchesJourney.com.