Sweethearts for better or worsePublished 5:53pm Monday, September 16, 2013
“We were college sweethearts and have been lovers and friends for the past 43 years. That hasn’t changed.” But for the past thirteen years, Jean has watched and helped her husband Fred deal with the progressive loss of his vision, his memory, his initiative, independence and identity.
“Our life is constantly changing and becoming more limited. I cannot plan ahead anymore since I don’t know what Fred will be able to do. That has been one of the hardest things to learn,” she said.
Fred was only 54 years old when he began to have trouble “way finding,” turning south away from home instead of turning north correctly, a sign of very early onset of Alzheimer’s disease. He became very aware of his own difficulties as he planned retirement and took up tending a hobby shop with a buddy. He and Jean talked frankly about his difficulties, and ten years ago, he was seen by a neurologist who verified the likelihood of a progressive degenerative brain disease. Fred started Aricept, hoping to delay the progression, and entered a series of research studies seeking answers to Alzheimer’s and similar dementias. As a career educator, he wanted to contribute to the knowledge base in any way he could.
The “sweethearts” initially kept their situation to themselves, sharing it only with their grown son and daughter. They put their affairs in order and set about enjoying life with travel, friends and family. They traveled the road of reluctant acceptance with a belief that “it will be OK.” They joined a couple’s early-dementia support group. Finally when he gave up driving in 2007, he and Jean wrote a letter sharing his situation with friends, extended family and past co-workers.
“This is so terribly sad to live with, but practical needs drive you,” Jean whispers. The lump in her throat is so large! She notes Fred has serious visual limitations because of what the doctors call “Visual Variant Alzheimer’s.” His visual field and depth perception are very limited. He cannot sense whether the floor in front of him is level or a big step; therefore, their split-level home requires a ramp to assure his safety.
Fred needs companionship and socialization. They don’t see their grandchildren as often as they would wish because traveling with Fred, who can get lost on an airplane, is now too difficult. So he goes to a senior center regularly. Just this routine makes life seem “normal.” Such structure and routine are essential to everyone with Alzheimer’s. Fred’s time at the center also allows Jean time to visit with neighbors and friends that she has made through support groups. Weekly respite is critical to HER health.
But home is where the heart is. Fred still has a great sense of humor and a good mastery of language. He loves music and enjoys simple films and stories he can share with Jane. They have had a “partnership” from the very first, and she reminds him that she “loves more than his mind.”
For more information on Alzheimer’s disease, visit the Oct. 12 Alzheimer’s Walk and Education Fair (9 a.m. to noon) at the Redmen’s Lodge.