DEAR HELPLINE, My mother has had Alzheimer’s disease for 7 years and has been living with me for the
last four. I’m an only child and her primary caregiver. Mom has a home attendant for 12 hours a day, 5 days a week,
which is great while I’m at work, and I take care of her the rest of the time. I want her to stay at home with me, but
she’s been deteriorating lately and her needs are taking more and more of my time, especially during the night. Her doctor
thinks she needs to be placed in a nursing home, but I promised her I would never put her there. I need her to be safe
and well cared for, and I don’t know what to do. Any ideas? — Torn
It sounds like you have your hands full and are facing
some very tough decisions.
In some cases, people with dementia can remain in
the community for the duration of their illness, most
often when services such as home care are in place. In
other cases, it becomes necessary for the person with
dementia to move to a residential care facility. When
making this decision, the needs of the person with
dementia need to be balanced with the needs of the
primary caregiver, and her ability to provide care. It
sounds like your mother has become more difficult to
manage, especially at night, when you have no assistance.
Increasing home care hours is one possible solution in
keeping your mother at home. You can submit new
paperwork (a new M11Q) requesting an increase in
home care hours, but remember this is a process and
will take time. Not only that, but the outcome may not
guarantee your mother additional hours.
Perhaps nursing home placement is the best way to
ensure your mother is safe and her needs are met. When
trying to decide whether nursing home placement is best,
there are a number of things to consider.
First, it is important to know that you need not
make this decision alone. Speaking with your mother’s
doctor may prove helpful, as he or she will ideally
have experience working with people with dementia
and will understand the myriad of complications the
disease presents as it progresses. Mom’s doctor should
be helpful in assessing her medical needs and her ability
to remain safely at home. The Chapter offers a monthly
meeting called “Easing the Transition,” which walks
people through the process of nursing home placement.
Friends & Relatives of Institutionalized Aged (FRIA) is
an organization that provides information on facilities
which could help you narrow down your search. FRIA
can be reached at 212-732-4455.
Equally as important as ensuring your mother is receiving
adequate care is taking care of yourself. If you are
working all day and coming home and providing care to
your mother for much of the night, where and how are
you building in time for yourself? “Caregiver Burnout”
is very real and could have serious consequences to your
health, such as illness and exhaustion. One way to prevent
burnout is to ensure you provide for yourself, too.
Reconciling your feelings about placing your mom in
a facility can also be a complicated part of the equation.
Sometimes, people let their desire to care for the person
at home — or perhaps their desire to keep a promise
previously made — overshadow the needs of the person
with dementia as well as their own needs. If nursing home
placement is the only way to ensure your mother’s increasing
needs are being met, it is
worth exploring, despite
the feelings it may bring
up for you. It is natural
during this process to
of guilt, sadness and
resentment. That said,
sometimes promises need
to be broken in order to
ensure the person with
dementia receives the care he or she needs, and that you
can continue to manage her care as well as your own.
Also remember that caregiving does not stop at the
nursing home door. While the venue may have changed,
and your role along with it, you will still be an integral
part of Mom’s care. You may feel some relief, no longer
responsible for the day-to-day care, and you will certainly
still be involved in ensuring your mother is taken care of.
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