About the series: According to Elisabeth Kübler-Ross’s model, there are five stages of grief: denial, anger, bargaining, depression, and acceptance. While this model explains the grief cycle based on bereavement, we’re going to explore how loved ones and those with Alzheimer’s navigate the cycle as the disease progresses. Last week we talked about depression (click here to find that blog if you missed it), and how it affects not only the caregiver but also the person with Alzheimer’s themselves. This week we are diving into the final stage of the grief cycle: acceptance.
Melanie Williams explained her experience with the grief cycle as an open-ended process. “Today, I am probably a little bit between depression and acceptance. I can be there today, but tomorrow something might come up and throw me right back into denial or right back to anger. There’s no closure with dementia. It’s not like death. Because there’s no closure, you never know when something hits you out of left field and you start grieving again.”
For anyone dealing with the stages of grief, acceptance may not be a stage that you simply walk across or leave behind, but it’s an important stage, nonetheless.
Accepting the New “Them”
In acceptance, you’ll probably continue to move along the grief path, but this is a stage when you can enjoy your loved ones more easily just as they are. You may find better communication practices, and you may have established appropriate caregivers. Perhaps you’ve reduced the caregiving some and returned to your previous role as a family member/loved one. Each moment may not be complete bliss or “the way it was,” but this might be the stage where you just aim for their happiness and comfort.
Maybe the holidays won’t include your loved one making their famous dish, so you make it for them to keep their tradition going. Perhaps your loved one won’t recognize all of your faces, know every word to holiday songs, or take a seat at the piano the way they once did, but you may find yourself celebrating their small wins.
A “win” can be as simple as a smile on your loved one’s face. Maybe they’re still confused and act differently than before, but the smile tells you that they’re still able to experience joy.
Perhaps you’ve stopped being overly emotional that your family celebrations and holidays have changed. Melanie Williams explained, “Lefse was always a huge part of the holidays for us. I remember my mom making lefse and before she got too progressed in the disease, she and I made lefse together so I could learn those little tips and tricks from her.”
“Alzheimer’s is not a Chicken Casserole Disease.”
One of the biggest hurdles with Alzheimer’s is that people don’t understand it like they do other illnesses. Because it’s difficult, Alzheimer’s holds a stigma.
Marty Schreiber provided us with an interview a few years ago in a video you can access here. He described Alzheimer’s in a very unique way. He explained, “This is not a chicken casserole disease.” He went on to clarify that if you’re hospitalized for surgery or another ailment, people might bring you a chicken casserole because they understand you could use the help, but with Alzheimer’s people don’t know how to react. Mr. Schreiber said, “Those people who we’ve relied on before, who you thought would be there, may not because they don’t know what to say. They don’t know what to do. They feel uncomfortable and now we feel more isolated. Therein lies the challenge for us caregivers.”
Through sharing individual testimonies like Melanie Williams’ experience and Marty Schreiber’s amazing insight, along with resources, we hope to end the stigma of Alzheimer’s. If you’ve had experience with it, or you’re in the thick of it, consider contributing to the fight against Alzheimer’s.
Finding Support and Raising Awareness
The Alzheimer’s Association uses donations to fund research into finding a cure for Alzheimer’s disease. Their website contains a wealth of information to help families. You can find stories, remembrances, and a way to help by visiting alz.org. They also have a 24-hour hotline to answer questions about Alzheimer’s disease: 800-272-3900.
The more we all work together, the better the experience may be for ourselves and for others in the future. If you have gained insight and understanding about Alzheimer’s, consider donating your time. Through local support groups or book clubs, sharing your experience could help others.
Edgewood offers hope for those suffering from Alzheimer’s through our memory care communities and adult day services. We’d be happy to talk with you if you’re looking for support in caring for a loved one or planning for yourself. We understand Alzheimer’s and meeting those who have it right where they are. If you’d like to learn more, please connect with us at firstname.lastname@example.org. Wishing you peace and comfort on the Longest Day and always!