The following is an article from longtime ACA member, volunteer, and leader Dick Chamberlain. He is the recipient of ACA’s highest honor, the Distinguished Service Award, and served as president of ACA from 1986 to 1988. He is a past president of ACA, New England; a past board member of ACA, New York and New Jersey and ACA, St. Louis; and still serves as a standards visitor, mentor, and instructor. Dick also co-founded the International Camping Fellowship. In late 2011, Chamberlain lost his wife, Ann, to Alzheimer’s Disease. In the spirit of his continued service to ACA and its membership, Chamberlain shares this article in hopes it will be of help and guidance to anyone experiencing a similar circumstance.
It was the greatest emotional jolt in what eventually became our fifty-one years of marriage when Dr. John Growdon of Boston’s Mass General Hospital’s (MGH) Memory Disorders Clinic told Ann and me that Ann had Minimal Cognitive Impairment (MCI) and that it might — or might not — lead to Alzheimer’s.
And it was an even greater jolt a year later when we learned that, indeed, we were on the Alzheimer’s journey . . . a journey that concluded with Ann’s death September 27, 2011 — a year and a half ago.
In some respects, Ann and I were comparatively very fortunate during that Alzheimer’s journey:
- We had wonderful medical support from Ann’s primary care doctor, Jennifer Jameson of Brentwood; from the MGH Memory Disorders Clinic and its Dr.Growdon; from the staff of Seacoast Mental Health Center; from Portsmouth’s Wentworth Connections Day Care Center; from Caregiver Nichole who became part of our family; and eventually from the staff of Seacoast Hospice.
- We had wonderful personal support from family, friends, and the people and minister Kim McKerley of our Pilgrim United Church of Christ, Brentwood-Kingston.
- We were fortunate that Ann did not wander . . . ever . . . and that she did not have any major personality changes such as her wonderful and sweet personality and welcoming smile being replaced by anger and hostility.
- We were fortunate that even three weeks before Ann’s death she knew and enthusiastically related to all twenty family members at a reunion in Ohio . . . a trip that involved four flight segments on Southwest, an airline that knows how to be supportive of a handicapped person’s need for independence. (Ann would become very nervous as she looked way down at the ground when entering the plane. Consistently flight attendants would stand with their backs to the inside of the cabin, take Ann’s hands in their hands, “dance” her into the plane, and sit her in the first row. All with good humor.)
- The one person Ann did not fully know for the last four years of her life was me, her husband. Yet, whoever I was to her, she accepted, and she was thankful for my help. And I was thankful that Ann allowed me to be her loving caregiver.
- Ann’s brother Kurt said that “Ann left a legacy of unconditional love, empathy, and courage.” And I would add that Ann’s inner strength, outgoing personality, and enjoyment of life all helped her to live with Alzheimer’s as well as she did.
- I earlier mentioned Wentworth Connections Day Care Center, where I took Ann two days a week for two years. They had a wonderful staff that Ann came to love, and they sure loved her. A few months after Ann’s death, I asked Amy, the director, if there was anything I could do as a volunteer at the Day Care Center. And Amy asked me if I would be willing to partner with staff member Gail as co-facilitators of an adult support group for Alzheimer’s caregivers twice a month. I have done that now for the past year and will continue. There are up to ten people in the group with some occasionally leaving and new folks arriving.
Gail and I “facilitate” in two ways with the Support Group of Caregivers:
- We ask questions and follow-up questions and affirm individuals to hopefully help their latent strengths come to the surface. This is important as group members return to the never-ending — till institutionalism or death — caregiving of a loved one (spouse, parent, sibling, child, friend). We also hope the sessions allow group members to be a greater help to the person in their care and are enriching and strengthening to the members themselves.
- We “orchestrate” group discussion among participants. Participants are dealing with the full spectrum between Early Onset Alzheimer’s and Hospice, and their discussion of the specific stages with those who are going through the same thing can be helpful.
I have learned some enormously important things from Ann and my Alzheimer’s journey and from cofacilitating the Alzheimer’s Support Group for Caregivers. I want to share them with you. Why? Because with an aging population, with six million people currently afflicted with Alzheimer’s, a number that will grow to twenty million in the next few years, most likely every one of us will come in contact with a family member, or friend, or ourselves, who will start wondering: “Is my — is his or her — occasional memory loss a natural aging process or something beyond that?”
What I Have Learned That Might Be of Help to You
- EARLY DENIAL: It takes courage to share your concern with the family member or friend whom you feel has memory loss, and it takes even more courage to avoid denial when family/friends share their concerns with you about your memory difficulties. Two friends took me aside to share their concern about Ann’s memory loss and months later two other friends sat both Ann and me down and shared their concern. And finally a psychologist friend gave Ann a morning’s worth of tests and said, “I’m too subjective as your friend to test any further. I think you should see a neurologist at MGH’s Memory Disorders Center.”
- ADVOCATE: Each of us can enormously benefit from a caring family member or friend being an advocate for us — a person who will help us, when necessary, negotiate life when we can no longer be our full independent self. Who would be YOUR advocate?
- THE 10 WARNING SIGNS OF TYPICAL AGE-RELATED CHANGE OR ALZHEIMER’S:
- Memory loss that disrupts daily life
- Challenges in planning or solving problems
- Difficulty completing familiar tasks at home, work, or leisure
- Confusion with time or place
- Trouble understanding visual images and spatial relationships
- New problems with words in speaking or writing
- Misplacing things and losing the ability to retrace steps
- Decreased or poor judgment
- Withdrawal from work or social activities
- Changes in mood and personality
The Alzheimer’s Association publishes a 5 page paper called “10 EARLY SIGNS AND SYMPTOMS OF ALZHEIMER’S” that SIMPLY contrasts each possible Alzheimer’s “SIGN” with typical “age-related change.” (www.alz.org )
- PRIMARY CARE DOCTOR AND NEUROLOGICAL EXAM: If you have any serious concerns, see your primary care doctor AND a neurologist who specializes in diseases of the brain and nervous system. There can be symptoms that look like Alzheimer’s but are not based on Alzheimer’s!
- THE ALZHEIMER’S ACTION PLAN: This helpful resource is written by P. Murali Doraiswamy, MD, and Lisa P. Gwyther, MSW. They write: “Most of us will either get Alzheimer’s or care for a loved one who has. This action plan can empower you to make a difference.” This can be purchased in paperback online.  It was one of the most helpful written resources I found.
- THE CAREGIVER’S OWN HEALTH: I am so thankful that through our Alzheimer’s journey, my patience and empathy were increased, I learned how to live better in the immediate moment, I learned something about active listening, I learned a little about shifting gears from my typical fast life pace to, on a moment’s notice, gearing-down to where Ann was, that humor could spark Ann’s humor. I learned that I occasionally needed to share the deep grief, the hurt, the anguish I felt as Ann increasingly became less than the Ann I had known, loved, and continued to love for so many years. I am so thankful I could share with friends and professional people and that I could express my feelings. That was of enormous importance to help me hang in there to help Ann and keep myself from getting sick . . . something that happens to many caregivers. Don’t bottle up your feelings!
- YOU! Where can YOU turn, beyond this article, for further information and help?
- The Alzheimer’s Association (www.ALZ.org )
- There are nearly 300 Alzheimer Association support groups for caregivers throughout Massachusetts and New Hampshire. Wentworth Connections in Portsmouth is one.
- Your primary care doctor and a neurologist.
- People such as myself who have lived/walked this Alzheimer’s “journey” and are glad to listen to you and to point toward resources.
In conclusion . . . one can become a different person from participating in this journey of memory loss. Yes, Ann’s death is the greatest loss of my life and her loss will always be with me. But wonderful, wonderful memories of our fifty-one years together will also always be with me. And I believe that I have learned how to be a better friend to my family and my friends for the rest of my life. And for that I am very thankful.