Caregiver Forum:
Coping with Alzheimer’s
Lisa Fuller
 It’s a very traumatic moment when the doctor confirms what
has been feared all along. A diagnosis of Alzheimer’s raises
so many questions and concerns. It can be overwhelming, and it
can be difficult to know what to do first. Some might be tempted
to ignore the doctor’s words and hope it will all go away.
But there it is every day -the memory loss, the confusion, the
tension and the anxiety. Today about 4.5 million Americans suffer
from Alzheimer’s. This number is expected
to grow significantly over the coming years as more people are
living longer. By 2050, it is estimated that 13.2 million Americans
will have Alzheimer’s.
At HomePartners, we frequently meet families who have heard this
painful diagnosis. They come to us during all stages of the disease.
Because we know there are so many more throughout Maine facing
this life-altering event, we are offering some suggestions for
helping those you know and love:
As your role
changes, at times you will feel like you have become the parent.
Even though it might feel like they have become a child, it is
important to remember they are not children. They are adults
who can’t remember. They need to be treated
with the same respect and dignity with which you treat any adult. Joanne
states “even as the memories disappear, it is important to
remember the core of who they are is still there”.
I recommend learning as much about the disease
as you possibly can. A great first step is the Alzheimer’s Association. They
have an assortment of reading materials that will help prepare
you for what may lie ahead. They can also provide a list of services
available in the community. Another excellent resource is the Alzheimer’s
Disease Education and Referral (ADEAR) Center. This center is a
part of the National Institute on Aging. It serves as a clearinghouse
of information and publications about Alzheimer’s and related
dementias. You can access both of these organizations through www.alzheimers.org.
Knowledge of what is to come and how the
disease progresses can be a great help. Joanne Treuhaft, HomePartners’ client
relations manager, has over 12 years of working one on one with
people with Alzheimer’s. She uses the analogy of an onion
to describe the disease to family members. Recent, short
term memories are like the outer layers of an onion. For someone
with Alzheimer’s, the outer layers are peeled off first.
In other words, the first thing people lose is their short term
memory. As time progresses, more and more of the onion is peeled
away. Each time a layer is peeled away, more memories are gone.
However the core stays until the very end. This is why you may
see a person who initially cannot remember what they had yesterday
for dinner but still know their family and past history. Later
on they may not remember their children or spouse, but their memories
of their parents and where they grew up are fresh and vibrant.
Understanding how to react can make a difference
As their caregiver, how should you react
when they have no memory of things you have done together? It
is very important to be where they are now – be present to their reality as they remember
it. It will be stressful and frustrating for you and your loved
one if you try to correct, change or urge them to remember. It
is best to go where they are and just “be” with them.
If they are talking about their parents as if they were alive,
ask them about their parents. Try not to correct them by telling
them their parents died twenty years ago. That will only be upsetting
for your loved one. Treat them with compassion, and when the time
is right, you can divert them to other things.
It is difficult to be a caregiver for a
family member who has this disease. Your loved one will change,
and your relationship with them will change. They will no longer
remember things you hold dear. We always recommend families start
a memory book. This is not only for your loved one. This is for
you, your family and your caregivers. This will help everyone
to better know your loved one by learning about their past. As Joanne tells families “You
are now the keeper of the memories”. It will be up
to you to tell your children how your mother met your dad, or what
happened on their wedding day. You will be the one who remembers.
As your role changes, at times you will
feel like you have become the parent. Even though it might feel
like they have become a child, it is important to remember they
are not children. They are adults who can’t remember. They need to be treated with the same
respect and dignity with which you treat any adult. Joanne
states “even as the memories disappear, it is important to
remember the core of who they are is still there”. A diagnosis
of Alzheimer’s is not a diagnosis of being a child.
Care for the Caregiver
The worst thing you can do is try to do
this alone. Some caregivers suffer from depression caring for
loved ones. Your physical health may also deteriorate. 47% of Alzheimer’s caregivers
report not getting enough sleep. If you are feeling well, then
your loved one will benefit. If you are overworked, stressed or
tired both you and your loved one will suffer. As they always tell
you on airplanes, put the oxygen mask over your mouth first before
you try to help someone else. It is the same with care giving,
especially for someone with Alzheimer’s. You need to take
the time to care for yourself. Only then can you truly be of value
to someone else. There are services that can help. Some to
consider are:
- Support groups – it is very helpful to talk with others
who are dealing with the disease. You won’t feel so all
alone and you can learn from one another as the disease progresses.
- Family members – if other family
members are in the area, have a family meeting and see if everyone
can pitch in to help. We have one client who has six children.
They have arranged for the daughters and daughters-in-law to
each take a day to spend with their mother. Then sons handle
the financial issues and the insurance. The important thing
is they worked out a solution where everyone is contributing.
No one is doing it alone.
- Religious and community organizations – some
nonprofit organizations offer services to family caregivers
on a voluntary basis. You can contact the Southern Maine Agency
on Aging for more information.
- Home care companies – companies can provide resources
to stay with your loved one giving you time for other things
and to care for yourself. It is very important to always ask
if the caregiver has been trained and the number of years experience
they have working with people with Alzheimer’s.
- Adult day services – there are day programs which provide
meals, activities and socialization for people with Alzheimer’s.
If your loved one has always been social this might be a good
solution for both of you. They enjoy themselves being with others
and you have time for your work or other activities. It is very
important to know the backgrounds and training of the people
staffing the center and also the ratio of clients to caregivers.
You do not want a ratio more than 6 to 1.
Although caring for a loved one can be very
difficult, people also find many benefits supporting another
through this disease. Caregivers have reported feeling a strong
sense of purpose and meaning. You may also develop stronger personal
ties with loved ones and feel a strong sense of fulfillment.
In your heart, you will know the difference you are making in
someone’s life.
However the disease progresses for you and your family, there are
always people and services that can help. Take advantage of them
so both you and your loved one can still enjoy the times you have
together.
Lisa Fuller is co-owner
of HomePartners, an elder-care services and solutions company
which offers free counseling and consultation to family members
whose loved one has been diagnosed with Alzheimer’s.
Lisa can be reached at hmeprtners@aol.com
 top
For more Family articles>> |
