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Dear Friends,
 Recently, after a meeting with several of my staff, it hit home how truly complicated and
demanding Alzheimer’s disease (AD) and other dementing illnesses are. Loss of memory and
cognitive impairment are bad enough, and changes in ability to do things for one’s self and
behavioral symptoms can be devastating. But this disease does not happen in a vacuum.
It affects many others: daughters, sons, partners, other family members and friends. These
are real people, some of whom are struggling with medical, psychiatric, social and financial
pressures beyond being with and caring for a person with dementia.
Here are a few examples of people the Chapter helps on a daily basis (names and details
have been changed to protect the individual’s privacy):
- Melanie, an adult daughter caring for her mom in the advanced stages of Alzheimer’s
disease, was diagnosed with cancer early in 2007. Melanie died four months later,
leaving her mother virtually alone. She was her mother’s primary source of support
and held power of attorney. Mom’s remaining family had no way of accessing her
social security, her only income, which was deposited directly into her bank account.
We provided some financial support while the family is applying for a guardianship
so that someone can manage Mom’s finances. We also helped the family do some
care planning to arrange for more comprehensive care for Mom.
- George, a man with mid-stage dementia, has a history of mental illness and domestic
violence. In a rage, he hit his wife Loretta on the head with a frying pan. She
was injured, but is recovering, and has an order of protection against him. He is
hospitalized in a forensic unit. We will continue to provide support for Loretta.
- Beatrice, age 92, lives in an apartment in Ridgewood, Queens that was infested
with bedbugs. The apartment had to be treated, and every stick of furniture had
to be replaced. Bea’s only source of income is her modest social security check;
she has no savings. We were able to help her replace her furniture through our
Emergency Special Assistance Fund.
- Beatrice, age 92, lives in an apartment in Ridgewood, Queens that was infested
with bedbugs. The apartment had to be treated, and every stick of furniture had
to be replaced. Bea’s only source of income is her modest social security check;
she has no savings. We were able to help her replace her furniture through our
Emergency Special Assistance Fund.
- Bill is a long time resident of a homeless shelter in the Bronx. He is showing
signs of dementia. The shelter staff is concerned about his safety and their ability
to manage his progressing needs. Other shelter residents steal his money. We
are advising the staff, and working with them to find a more suitable setting.
However, Bill is very happy at the shelter. He has no intention of leaving, and
still has the capacity to make his own decisions.
These are but a few of the many complicated situations that our families—and their
Chapter staff consultants—face every day. Caregivers are often coping not only with the
devastating effects of dementia, but also with terminal illness, poverty, domestic violence,
alcoholism, mental illness, homelessness, and incarceration.
Family caregivers learn from Chapter professionals who do this work day in and day out,
sometimes for years or decades. One of the things our professional staff stresses is the importance
of balancing the challenges of caregiving responsibilities with life-affirming ones. The more we live or work in a situation that is highly charged, where we
are exposed to the extremes of emotion and stress, the more important
it is to live life and do things that restore and renew our soul and
spirit. Whether it is meditating, getting a massage, exercising, going to
the movies, spending time with our friends who make us laugh, or
going to worship service, in order to survive, it is important to develop
and maintain a practice that provides some balance with the
responsibilities of caring for someone with AD.
Speaking of our staff members who are such a wonderful resource
to the Alzheimer’s community, we now must say goodbye and thank
you to two such professionals who are retiring from the Chapter.
Reva Hoffmann, Director of Clinical Services, leaves after seven
years with the Chapter. She has managed the Helpline, supervised the
Helpline volunteers, led a support group, and counseled thousands of
caregivers. She has been a true mentor and outstanding supervisor to
many students. Her finely honed clinical skills, her warmth and
extraordinary ability to be with callers, even those in the deepest pain,
are an example for us all. We will miss Reva, and we thank her for
many years of service.
Willie Senders, Manager of Nursing Home & Residential Care
Affairs, is leaving us after fourteen years of service. Willie brought
endless enthusiasm and optimism to his work improving care for
nursing home residents with dementia. He steadfastly created
relationships with key nursing home staff, building teams to bring
about “culture-change.” In an area where so many professionals feel
discouraged about the possibility of change, I am proud to say that
I witnessed many nursing home residents and staff members who
benefited from Willie’s interventions. He has never wavered in his
belief that systems of care, even those as entrenched as in most nursing
homes, could change for the betterment of all. He also brought his
many years of experience to counseling families seeking residential
care. I am delighted that Willie will continue his work with the
Chapter as a consultant.
Ours is demanding work. Caring for a relative with dementia is
demanding work. You, the caregivers need all the help and support
you can get. A good place to start is by calling the Chapter’s Helpline
at 800-272-3900. Call us. We know dementia and we can help.
— Jed Levine
Executive Vice President,
Director of Programs & Services
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