By Sunnyside Community Services, Inc.
Hundreds of thousands of New Yorkers are caregivers and as the population of the United States continues to live longer, more and more people are themselves finding out their loved one has Alzheimer’s.
For those who give care, and care about, someone with Alzheimer’s disease or another form of dementia, the diagnosis can cause a huge amount of uncertainty. Caregivers realize their loved one’s mental capacity will be impaired by the disease, and that the course of the disease may play out over a long period of time.
Caregiving is difficult enough, but fear, guilt, and anguish make it worse. Isabelle Magliore, a social worker from Sunnyside Community Services CARE NYC program—which focuses on providing support for caregivers who care for someone with Alzheimer’s or dementia—mentions that many caregivers she works with came to her with misinformation and misconceptions. In the most tragic cases, Ms. Magliore says, the way caregivers think of themselves and their role can prevent them from reaching out for help.
“I hear many of the same stories from caregivers. It is heartbreaking that people’s assumptions can sometimes make the pain worse for them as they take this journey with their loved ones,” says Ms. Magliore.
Some common misconceptions that caregivers have, include:
“I have to do it alone”
The most common thing Ms. Magliore hears caregivers say is that they thought they had to go it alone.
“The first thing I tell caregivers,” she says, “Is that asking for help is a sign that you really care. It is a sign of love and a sign of appreciation. It is not a sign of weakness.”
Many caregivers incorrectly believe that seeking professional help is admitting defeat. The opposite is true: it is often the best and most compassionate choice.
“Applying for Medicaid is like accepting welfare. I am not looking for a handout.”
It is easy for family members, especially families who may have immigrated from another country, to think of enrolling in social support programs as something shameful, or a sign that families cannot support themselves. Ms. Magloire works with many immigrants, including some among the more than 150,000 Haitians living in New York City, who have reservations about taking any government assistance.
But in fact, she notes, Medicaid is a program designed exactly with elderly and chronically ill people in mind: the idea is to ensure that someone’s illness does not drive their family into financial hardship.
By paying taxes for many years, you and your family have contributed to the Medicaid benefits your family member needs, says Ms. Magliore. Putting Medicaid into place earlier in the diagnosis can ease the burden on the caretaker and permit you to afford the support your loved one needs.
“Alzheimer’s is like a death sentence.”
Caregivers always want to know how their loved one will change with Alzheimer’s, and how long they will live with the disease. People with Alzheimer’s can remain stable at the earliest stage of the disease for years, especially if they were diagnosed early. Alzheimer’s does not mean that your loved one will become unable to function immediately, and the disease itself does not cause death in most cases, but rather complications that arise from the later stages of the illness. Long-range financial and care planning is essential to ensure that your loved one gets the care that will be needed, as well as to give the caregiver peace of mind.
“I can wait until we really need help to inquire about home health care or adult day care.”
Ms. Magliore points out that it can take time to find a home health aide that works for your family, and to get approval from your insurance provider to cover home health aide hours. Don’t wait to inquire about getting help at home. “People do not realize that it may take a few weeks to secure a home health aide. If they need help immediately, they have waited too long.”
If you’d like to know more about supportive services for caregivers of those with Alzheimer’s or dementia, learn more here or call (877) 577-9337.
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