...The death of a parent
is tough, whether it's sudden or a long time coming. The advantage of a
slower death is that there may have been more time to prepare, however
human nature being what is, often people don't use that time well. Of
course, a sudden death can throw everyone back by the very nature of the
shock. Either way, unless there is a solid reason to do otherwise, it's
generally unwise to make changes too quickly, if they can't easily be
undone.
Our culture has historically been devoted to cure illness at all costs,
and death is often looked at as "failure," no matter the age or
condition of the person being treated. Many other cultures readily
accept death as part of the life cycle. I believe we, as a culture, are
making progress in this direction, but death still tends to be a word
people avoid. If it's up to you to inform a loved one that he or she
would be more comfortable under hospice care – or that a person they
love will be on hospice care – there are steps you can take to get you
through this difficult transition.
Sadly, even after years of work to educate the public about any
illness that affects the brain, a stigma remains. No matter that most if not
all mental illnesses have some biological basis. No matter that people aren’t
any more responsible for a brain illness than they are for other bodily
illnesses. Whether the illness that affects the brain occurs at a younger age
in the form of depression or bi-polar disease or an older age in the form of
Alzheimer’s disease, people with brain illnesses are often reluctant to
acknowledge their illness for fear of being treated differently than others.
People who read my work on a regular basis know
that I am grateful to hospice for the care of both of my parents. Without the
skilled, compassionate care of the hospice staff, both of my parents would have
suffered far more than they did. As it was, they’d both had long, slow declines
and pain had become the focus of their days even though they received excellent
care in the nursing home. When Dad and Mom qualified for hospice care, meaning
that their physician considered their conditions terminal, I filled out the
paperwork for each of them.
A little more than a decade ago, most physicians considered hormone
replacement therapy an important part of treating postmenopausal women
because of its ability to help control hot flashes, maintain bone health
and lower the risk of colorectal cancer.
Their enthusiasm for this treatment came to a halt in July of 2002,
when the same physicians took their patients off HRT nearly across the
board. An article in the New York Times explains what happened. “A rigorous
study found that the [HRT] drugs, a combination of estrogen and
progestin, caused small increases in breast cancer, heart attacks,
strokes and blood clots.”
NOTE: I wrote this article in 2006 when I was quite
new at blogging. It occurred to me that many loyal readers won't have read this
article, and actually nothing about caregiving has significantly changed. We
are still in this together. Since the client for whom I wrote this post is still
one of my major clients (they are now called HealthCentral/Alzheimers), and they
pulled the post up to feature it again, I decided to follow suit. I hope you
enjoy it. Carol
"Torn between love and exhaustion; dedication and guilt."
These words, from the prologue of my caregiving support book, Minding Our Elders: Caregivers Share Their Personal Stories, sum up the emotions that rage through caregivers,
daily. We’re on alert – 24/7. We dread the calls that summon us to
emergency rooms or worse. There never seems to be a moment when we
aren’t worried about someone or something. We love the people we are
caring for, but we sometimes lose ourselves.
Over the course of
two decades, I cared for seven elders. I was raising my own children,
one of whom has chronic health issues. I was a freelance writer. I wrote
Minding Our Elders.
During my first go ‘round with agents,
I’d been told, by many, that they loved the book. They loved the
concept. But who was I? They couldn’t sell the book to a publisher,
because I wasn’t known.
One of the positive parts of being a family caregiver is the
opportunity for emotional growth. We can develop increased compassion,
patience and tolerance, as well as humor. Yes, we often shed tears over
our loved one’s illness and often over our feelings of powerlessness.
But humor may be the saving grace that keeps us from drowning in
sorrow.Some situations, of course, leave no room for laughter. But some
tough times can offer moments of levity if we choose to recognize them.
Dear Readers: While
traditional health care saves lives and cures many illnesses, prescription
drugs and many surgeries also have risks and limitations. Because of this
knowledge, or simply out of the need to take a more active role in their
healthcare and that of their elders, many people are using the Internet and
other resources to research historic, alternative methods of preventing or
controlling illness and pain. According to the National Institutes of Health,
close to 40 percent of the adults in the U.S. use some form of alternative health
care. Alternative health care includes herbs, massage, meditation, acupuncture and
many other techniques that have been used for centuries by other cultures.
One of the positive parts of being a family caregiver is the
opportunity for emotional growth. We can develop increased compassion,
patience and tolerance, as well as humor. Yes, we often shed tears over
our loved one’s illness and often over our feelings of powerlessness.
But humor may be the saving grace that keeps us from drowning in
sorrow. Some situations, of course, leave no room for laughter. But some
tough times can offer moments of levity if we choose to recognize them.
According to Carol Levine of the United Hospital Fund, a longtime
researcher and caregiver herself, and Susan Reinhard of the AARP Public
Policy Institute, few non-caregivers have any real idea of how much care
an in-the-trenches family caregiver provides. In a story by Paula Span on the New Old Age Blog titled “Caregiver, Plus M.D. or R.N.”,
Carol Levine is quoted as saying, “The public perception is what you
see in ads — people sitting by the bedside, holding hands, making lunch,
smiling at one another…It has that glossy look. That’s not the whole
story.”
During a time when my father-in-law was ill, I sat with him while my
mother-in-law went to the grocery store. This store was only a few
blocks away from their home and she’d made the trip routinely for years.
Only this time, she was gone so long we were worried. Once she finally
returned she admitted to getting lost and having had trouble finding her
way home. What happened to her is what Alzheimer’s disease experts call
wandering.
What happened to her is what Alzheimer’s disease experts call wandering.
Wandering can occur during nearly any stage of Alzheimer’s, though people in
the later stages of the disease are often the most at risk for a tragic
outcome.
Nearly any family caregiver has felt isolated and alone at one time or
another. For many, that feeling is chronic. Friends don’t understand the
strain we are under. Some people get no support from their extended
family or friends. Where can we turn when there seems to be nowhere to
turn? Believe it or not, many resources are at your fingertips on the Administration on Aging website.
Dear Carol:
Reading your column has helped me care for my 83-year-old mom who has
Alzheimer’s disease. Now, I’m writing with my own question. Mom fell while in
the memory unit of a very good assisted living center. She had a urinary tract
infection and the doctor thinks that’s what caused her fall. The UTI is now
cleared up. When she fell, she cut her head badly, needing several staples to
close the wound. She also suffered a back injury though no broken bones. The
facility couldn’t care for her after she was released from the hospital, so
she’s in a skilled nursing home. It’s been three weeks, yet she’s still
confused and agitated, far worse than before the fall. Mostly she just sleeps,
or sits and stares at nothing. Her physical injuries are healing but she seems
to be getting worse overall. What is going on? – Mary Ann
Dear Mary Ann: Your
mom’s been through significant physical, mental and emotional trauma that would
be tough on someone much younger and not fighting dementia. I think you need to
expect that her current condition is natural considering her age, her dementia
diagnosis and all that she’s been through.
Many of us start our caregiving career by assisting an elder in his or
her home, or we have a spouse who declines and we become the default
caregiver in our own home. This care expands to a point where we need
some type of respite, often in the form of in-home care agency help.
Eventually, the move to assisted living or even a nursing home may
become necessary for everyone's health and wellbeing. Whatever happens,
we remain caregivers. Many of us continue to see our care receiver
daily. Most of us continue to be involved as advocates and support
throughout the time of need. When our loving attention and care is no
longer needed, we can, indeed, feel lost.
Dear Carol: My mom died six months ago and I'm still
having a hard time accepting her death. I keep thinking about what I could or
should have done better when she was still with me. I don't communicate my
grief to my family members because they think I should be over it by now. They
seem to be getting on with their lives just fine, but I’m not. Actually, I’m
getting worse. Maybe it’s the holidays. When I look back, I remember
complaining about being Mom’s primary caregiver and how hard it was. Now I feel
guilty. Mom understood everything about me and I feel like an orphan now with
no one to talk with about my past and childhood. I wish I knew then what I
would feel now. Maybe I’d have been more patient. - Amy
Dear Amy: Please don't feel guilty about the times you
were frustrated with your mother. You are human, caregiving is tough and you
had the bulk of the responsibility. Six months isn't all that long for grieving
such a loss, and everyone grieves differently. Be prepared for tough times
during this first holiday season without her. I remember writing in one column years
ago about how I felt like an orphan after my mother died.
The death of a parent
is tough, whether it's sudden or a long time coming. The advantage of a
slower death is that there may have been more time to prepare, however
human nature being what is, often people don't use that time well. Of
course, a sudden death can throw everyone back by the very nature of the
shock. Either way, unless there is a solid reason to do otherwise, it's
generally unwise to make changes too quickly, if they can't easily be
undone.
Dear Carol: How do
you gently begin to supervise a parent’s health? Our mother is widowed now and
74-years-old. She took care of our dad who had dementia and she seemed to do
okay for awhile after he died. But now she frequently forgets her medications doubles
them up, which she has admitted, and she frequently mixes up names and places.
My nephew lives with her and he’s had to take her to the emergency room a few
times because of kitchen accidents and one bad fall. We don’t want to be hasty
in taking over her health care, but we are afraid for her. She insists she
doesn’t need to have a checkup for cognitive issues. - Joanne
Many of us start our caregiving career by assisting an elder in his or
her home, or we have a spouse who declines and we become the default
caregiver in our own home. This care expands to a point where we need
some type of respite, often in the form of in-home care agency help.
Eventually, the move to assisted living or even a nursing home may
become necessary for everyone's health and wellbeing. Whatever happens,
we remain caregivers. Many of us continue to see our care receiver
daily. Most of us continue to be involved as advocates and support
throughout the time of need. When our loving attention and care is no
longer needed, we can, indeed, feel lost.
One of the positive parts of being a family caregiver is the
opportunity for emotional growth. We can develop increased compassion, patience
and tolerance, as well as humor. Yes, we often shed tears over our loved one’s
illness and often over our feelings of powerlessness. But humor may be the saving grace that keeps
us from drowning in sorrow.
Some situations, of course, leave no room for laughter. But
some tough times can offer moments of levity if we choose to recognize them. My
sister, Beth, and I experienced what to some people may be a rather macabre situation
during the three days our mother was going through the death process. If we
hadn’t maintained our senses of humor, I’m not sure how we would have handled
those sad, seemingly endless days.
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