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Losing a care
recipient--and you're still a caregiver
Mourning
her mother--and worrying about her husband
By Denise M. Brown
Teri Cox was a
long-distance caregiver to her mother, assisting her for almost 20
years, until her death in November 1998. Three months after her
mother's death, Teri's husband was diagnosed with a B stage of
prostate cancer. Surgery was not able to remove all of the cancer and
his diagnosis has changed to a much more serious D stage.
"I have never
gone through a more difficult and emotionally exhausting time in my
adult life," Teri says. "And, my mother's death makes me
more fearful about losing my husband. I'm devastated by all this. For
a while, it was almost surrealistic. I hurt so much that I couldn't
focus on anything without crying. Then, I became numb. Now, I keep
going. Until the next PSA test results. We're trying to be hopeful
about the future. But it is like a rollercoaster...up and down and up
and down."
Teri and her
husband, Bill, are partners in a public relations firm based in
Lawrenceville, N.J., and started by Teri. We asked Teri to share her
story with you.
Caregiving: Your
husband was diagnosed with a critical illness so soon after your
mother's death. Do you feel you've truly been able to mourn her loss?
How do you still continue to mourn her? What do you miss most about her?
Teri: I had to
compartmentalize mourning my mother's death while focusing on my
husband's illness, treatment options and health care during the day.
I would postpone the mourning until late at night. From about
midnight until 2 or 3 a.m., I would allow myself to cry, look at old
family pictures, re-read the eulogy I said at her funeral, talk to
her, pray to God and listen to her voice on tape (from her message
tape on the phone answering machine from her apartment).
I had great
difficulty sleeping anyway during the first six months. I was angry
that I could not have the same luxury of being able to focus on
mourning my mother's death that I had when my father died on January
25, 1990, after eight to ten years of deteriorating from Alzheimer's
disease. I helped my mother as his long-distance caregiver, too,
during that time. I had just completed my MBA program at NYU in late
1989 and was between jobs. Because of my devastating loss (and relief
for him), I did not take another position until June 1990.
This time,
although I wanted to stop everything, I couldn't. I am not one who is
very good at continuing with life and business as usual when someone
I love dies. I sought therapy to help with all this. Bill and I often
still go together when we need it. It was at the suggestion of our
therapist that maybe I would get some closure on my mother's death if
we took the day off on her one-year anniversary--Nov. 18, 1999--and
went somewhere special to talk about her. So, we did.
We went to a
quaint New Jersey town called Chester that has lovely little shops
and restaurants. We shopped in her memory (she loved to shop and so
do I) and had a relaxing meal in a charming tea house and reminisced
about my mother. It helped a lot.
Since I was also
the executrix of my mother's small estate, I was responsible for
emptying out and cleaning up her apartment. I moved her bedroom
furniture into our guest room and added some of her favorite things
and photos. When I want to talk to her now, I sit on the bed in the
guest room and I can feel her presence. It is a real comfort. For the
longest time, I would shake my head whenever I thought of my mother's
death. It was as if I could not believe it. She was so much a part of
my life that I took for granted that she just would always be there,
no matter how sick she was.
Now, I accept that
she is gone. I miss talking to her about everything in my life--the
good and bad. I spoke with her at least once or twice a week and
sometimes more. If she was not there when I called, I left a message
on her answering machine. She called me back on Saturdays and
Sundays, always in the evening. On weekend evenings, I still
sometimes expect her to call. Or, I want to call her to tell her
something. And, for one second, I forget she is gone as I reach to
pick up the phone. Then, I remember and feel sad for a few minutes.
It has been
particularly tough to go through Bill's illness because this is the
first time in my adult life when I am going through something serious
and important without being able to talk to her about it. She was not
very good with advice. But she did express concern and love.
Caregiving: How
has her death impacted how you care for your husband? How you
interact with your husband in terms of his diagnosis and care needs?
Teri: During the
course of both of my parents' lives and illnesses, I was an assertive
advocate fighting to make sure they received the best health care. In
the case of my father, an overzealous psychiatrist who was
particularly sympathetic to my mother's burden decided that we should
forget about my father ("For all intents and purposes, he was
dead already," he said to us.). He tried to get him
institutionalized against all of my family's wishes, even my
mother's. I had to pull some strings to arrange for a competency
hearing at which he was interviewed. The judge found him competent
enough to help with decisions about his own care.
Another time my
mother was hospitalized for fibrillation of her heart and was under
the care of the chair of the cardiology department of a major
hospital in Pittsburgh. He prescribed a new drug to which she was
seriously allergic. For two weeks, she was taking full doses and
feeling worse and worse (rash, fever, lupus-like symptoms, anorexia,
nausea, etc.) I told her to report these to the doctor. She insisted
that I not call him for fear that he would get angry and not take
care of her anymore.
She kept calling
his office but he was too important to return her calls. I looked up
the drug in the PDR (Physician's Desk Review) and called the
pharmaceutical company that manufactured and marketed the drug. Based
on the information my mother had given me about her symptoms, she had
every allergic reaction listed. Several people who reported similar
symptoms while on the drug had died. I called the doctor's office,
but the nurse told me he was on rounds and would not be able to
return my call. So, I quoted the PDR and everything else I had
learned about the drug and my mother's symptoms and said that if
anything happened to my mother because the doctor was ignoring her
calls about these symptoms, he would be in a great deal of trouble.
Then, I called my
mother right away to let her know about the conversation. I couldn't
reach her because her line was already busy. The doctor had called
her immediately after my call and told her to stop taking the drug.
Within a week, all of her symptoms were gone and she was again stabilized.
I learned from
these kinds of experiences just how assertive and proactive one must
be when advocating about health care. Over time, I became even more
aggressive in my case because, often, she was too weak to ask a
question or follow up after a test result. She felt sometimes like
all she did was go to doctors or wind up in the hospital for
observations and tests. This interfered with her regular hair and
nail appointments at the beauty salon and her social life with her friends.
I got to know all
her doctors and called them regularly after her exams or tests. They
usually respected my involvement and returned my calls, but not
always. I didn't care. This was my mother's life. That is how I feel
about my husband's situation. I speak with the doctors and am with
him for every appointment. As he says, because of me, he knows he
will get the best care possible.
I talk about his
illness more than he would like because it has become priority No. 1
with me. This focus--not obsession--on his illness is stronger
because I feel that I must "save" him and do all I can to
maintain our quality of life. I can't bear the idea of losing him
without doing everything possible. He is 66-years-old and I am 47 (48
in May).
I knew it was
likely that he would die before I did, but I was not prepared for his
cancer at what I consider to be fairly young for middle age these
days. Maybe in his 70s, but now is much too soon. I can't stand the
reality of this sometimes. The idea of life without him is unbearable.
I'm sure I'm more
sensitive to all of this because of losing my mother. I'm also more
interested making sure my husband's quality of life is everything he
wants it to be. I've been wanting to get him a comfortable recliner
chair for our family room. He's been saying that he doesn't need it.
Well, I ordered one that he and I selected together for his birthday
last October. He got it for Christmas/Chanukah (We celebrate both!)
and just loves it. He has needed a new warm casual coat and we just
picked one out and ordered it from the LL Bean catalog. So, we're
being more self-indulgent than we ordinarily would be.
But, why put these
off, when we can enjoy them today? I tried to encourage my mother to
use some of her money for little indulgences, as well as for more
support of her nutritional and health care needs. She wouldn't for
fear that she would not have enough in her savings to cover long-term
care costs if she needed them. We offered to help financially, but
she refused our help. She didn't want to be a burden to us or our families.
So my brother and
I inherited a small amount of money from her estate. I wish she had
used this more for her own needs. That is why I want Bill to have
what he wants to make him more comfortable now. I'm also very
protective of him. I will not let him take on any more new
assignments because we have enough on our plate with our current
client base. He's a workaholic and would say "yes" to every
opportunity for new business.
However, because
we are learning how fleeting life can be, we now are discussing
taking more time for ourselves and semi-retiring next year. Keeping
our hand in the business, but taking more time to do the things that
we said we wanted to do "someday."
His doctor at
Sloan-Kettering also has had discussions with us about this and
encourages us to go forward with these plans while Bill is still
feeling well enough to enjoy these things, such as travel, attending
more cultural events, organizing the house, spending more time with
his children and grandchildren: A daughter: 42; two sons: 40 and 33;
two granddaughers, 5 and 11; and one grandson: 13. We do not have any
children of our own, but have 4 wonderful cats (three females, one male).
My mother's death
reminded us of our own mortality. For most of our lives, we have
worked harder and postponed enjoying life until someday when we are
older. Well, now we feel that "someday" has crept up on us
to the present. I don't think we would feel so strongly about doing
this if we had not had the such a difficult last 15 months.
Caregiving: What
are your major concerns now? What worries you most? How do you calm
your worries?
Teri: My major
concerns now are:
1) How will my husband's
cancer evolve? Will we be able to get him treatment that can prolong
his life without too much pain and suffering?
2) How do we plan for our
future together, as well as my life alone?
3) How do we maintain a
"normal" life as much as possible without the specter of
his cancer constantly haunting us?
4) Can we slow down our
work now to give us more quality downtime together and manage it financially?
What worries me
most is: How do I cope with the ups and downs of my husband's disease
and its impact on our lives when I'm already emotionally exhausted?
How will I be able to bare life without him when we are soul mates
and virtually jointed at the mind, heart and "hip?"
I calm my worries
by keeping busy, trying to keep on top of everything possible for
maintaining our quality of life and treating Bill's cancer. I try to
focus on short-term issues instead of dwelling on what might happen
years from now. When I start a negative-thinking spiral, I tell
myself to stop and try to think positive.
Caregiving: What
coping mechanisms help you? Friends? Support groups? Online groups?
Teri: The coping
mechanisms that help me are talking to friends and family, getting
therapy when I need it, exercising, shopping, focusing on our health
and well-being, getting pampered when I need it (massages, manicures,
pedicures, new haircut) and, believe it or not, renting videotapes or
going to the movies. Bill and I are movie fanatics. We don't want to
miss any good movie that comes out.
When I have
administrative work for the business or can't sleep, I will watch one
or two movies that I've rented to help me relax. Movies got me
through the worst period of losing my mother and dealing with the
shock of the diagnosis of my husband's prostate cancer. Movies helped
me cope and escape for periods of time when I was otherwise in great
emotional pain. Being active with the American Cancer Society as an
anti-tobacco advocate and supporter of more research for cancer
treatments and cures also has helped a great deal with resources,
contacts and support.
Caregiving: I
believe your mother's spirit is still with you. What advice/suggestions/insight
does she offer you today?
Teri: No matter
how many illnesses, conditions and malaises afflicted my mother, as
long as she could get together with her friends and family, go to the
beauty salon every Saturday to get her hair done, go shopping, go to
the movies or go out to a restaurant, luncheon or special event, she
just kept going. Almost to a fault. She would postpone a doctor's
appointment or surgery until it was convenient and didn't conflict
with her social life and personal maintenance. Sometimes her priority
choices would drive me crazy because as her long-distance caregiver,
I wanted her to focus more on her health and take care of these needs
before others.
Now I understand
better why she behaved the way she did. Quality of life is becoming
more and more of an issue for me and my husband. Enjoying times
together with friends and family, shopping, movies, beauty salon
pampering (Bill likes to keep his hair coifed, too!), going out to
dinner and getting away to a favorite vacation spot is almost all we
want to think about.
My mother would
applaud me for focusing now on what is really important. I noticed as
she got older, she reminisced more about special family events, like
weddings, bar/bat mitzvahs, the best meals she ever had at fancy
restaurants, birthdays, vacations we had as a family, and special
friends and how they would get together. Those were the memories that
meant the most to her.
She would advise
me today to continue creating these kinds of memories with Bill while
he is still alive and feeling fit, so I can cherish them in the
future. She would yell at me to work less and live and love more
while there is time. I couldn't agree with her more.
Caregiving: What
advice would you offer other family caregivers in similar situations?
What has been helpful to you that you believe may help others?
Teri: My advice to
other family caregivers in similar situations would be the following:
--At the beginning,
expect to feel overwhelmed, confused, sad and in pain. When these
kinds of personal crises happen, when one does not have the time to
handle one crisis before the next one occurs, it's okay to feel out
of control.
It's okay to feel
like the "rug has been pulled out from under you." Over
time, as one begins to focus on the priorities necessary for handling
the crisis, the feeling of control begins to return and one's inner
strength and resources begin to take over. It's not fair for
caregivers who are also dealing with the loss of a loved one to
expect themselves to handle everything as if this is the
"normal" way.
--Seek as much
information and as many resources and referrals to address health
care, and other physical and emotional needs for yourself and for
your family. By being proactive, one feels less victimized by the
situation and more empowered.
--Don't try to hold all
your feelings in or avoid talking about your problems, your loss and
your feelings. Reach out to your family and friends as well as
professionals to get the help and support you need.
--Try to maintain a
healthy diet, get plenty of rest and exercise, even when you don't
feel like it. Otherwise, you'll get sick and won't be able to keep up
with the ongoing demands and stresses of your difficult situation.
--Pamper yourself by
treating yourself to whatever special comforts, services and
activities help you feel better. But, don't turn to overeating,
alcohol or drugs over an extended period as a means of escape. This
will only make things worse.
--Discuss openly with
other family members how you feel and when you need help.
Often, if one only asks,
others are more than happy to help in any way they can. (I was
surprised how many acquaintances offered support and assistance to me
over the past year.)
--Determine what the
priorities are and try to concentrate on them. Less important
commitments, activities and arrangements that can drain your strength
and emotional resources should be cancelled or ignored. (I was told
by close family members, personal friends, and even my therapist, to
focus on our health, our business and our quality of life and, for
now, to forget about other less important things.)
--Don't expect to
function at 100 to 150% everyday. Some days, you'll feel more normal
and productive. Other days, you may not feel like getting out of bed.
All of this is okay and to be expected when one is mourning the loss
of a person for whom one provided care and felt love and affection,
while one is still caring for someone else.
--Commit to giving and
doing the best you can under the circumstances. If you know in your
heart that you've made this commitment and are acting on it, you can
relax more because no one can expect from you more than your best effort.
Before I go to bed
most nights, I say to myself, I know I did the best I could today,
whether I accomplished a lot or not. This helps me get a better
night's sleep.
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