Caregivers of those with early-onset Alzheimer’s find support
It could have been a meeting about refurbishing the church or a group of neighbors gathered to plan an upcoming fund-raiser. But these 12 people at the Norwalk Congregational Church are in a caregivers support group sponsored by the Connecticut chapter of the Alzheimer’s Association. They are sharing the difficult behavior of a wife or husband recently diagnosed with early onset Alzheimer’s. The words heard most often were, “I don’t know what to do.”
“My wife keeps asking me to take her to her mother’s house. She wants me to call and tell her we’re coming to visit. But her mother’s been dead for 12 years. She gets very angry at me. Honestly, sometimes I just don’t know what to do.”
There are suggestions. There are descriptions of the same sort of behavior experienced by others in the group. Most of all, there is attentive, non-judgmental listening and the security of total confidentiality.
From a wife: “My husband seems quite all right some days and then just yesterday I saw him walking down the street in his pajamas.”
From a husband: “My wife won’t eat what I’ve prepared for her. I take it away and bring it back in 10 minutes and she has no objection and eats it all. It doesn’t make sense.”
The husbands and wives of those living with Alzheimer’s are truly frustrated. They don’t know what’s going to happen next. Sharing problems freely that they could never talk about with friends or relatives is salvation. The ups and downs, the unpredictable moods of early onset Alzheimer’s is being recognized and understood. Normalcy followed by irrational actions make caregiving at this early stage exhausting. Fearing what’s to come is a constant worry.
“What’s most important is knowing that there is help, there are specific actions to take that can be lifesavers,” said Eleonora Tornatore-Mikesh, executive director of the Connecticut chapter of the Alzheimer’s Association.
“Probably the most helpful, most reassuring first step is to find and join a support group,” she said. “We have groups throughout the state, led by professionally trained people who are usually in the same boat as those attending. For an hour or two, caregivers can be totally free to describe, complain, vent anger and helplessness, knowing they are being listened to with the most concerned attention, feeling a burden lifted by confiding their situations to others, with total trust.”
Support group members say it’s a relief to be able to be so open and honest. “Otherwise, I’d have no one to talk to. None of the neighbors know,” said one wife. “I don’t think I could be as open and honest with my family as I am with the people in my support group, who I know are going through what I’m going through.”
There is also a helpline that can provide assistance 24/7. A call to 1-800-272-3900 connects anyone to an experienced, knowledgeable person, anytime, day or night.
Much more attention is now being paid to younger/early onset Alzheimer’s (diagnosed under the age of 65). There are more comprehensive professional assessments available. There is more research and more targeted clinical trials. There are more fund-raising events and determination to ultimately make Alzheimer’s a disease of the past. There is help with identifying and treating early symptoms: serious forgetfulness, unnecessary repetition, vagueness about time and place, inability to do basic tasks.
Younger/early onset Alzheimer’s has no age limit. Symptoms are appearing at much younger ages. Detecting these signs — the earlier the better — can give caregivers more control by providing more treatment options.
Little by little, more funding for research is making Alzheimer’s less hopeless.
“New insights and advances are occurring every day,” said Kristen Cusato, southwestern regional director of the Connecticut chapter of the Alzheimer’s Association. “Here at the Connecticut chapter, we are ready to help reduce the stress, answer the questions and empower caregivers.”