Caregiving & Family Harmony
Every family has conflicts - that's the nature of human relations.
likely, some form of discord, even if minor, existed in your family before your loved one became ill. After
all, it's not as if the lupus, brain tumor,
(Huntington's) or heart disease simply dropped in on a household that was completely
devoid of problems.
Family disharmony doesn't suddenly disappear with the diagnosis
of a serious illness. Illness and caregiving situation can worsen al already tense situation. Indeed, experts
assert that caregiving often causes family friction and sometimes destroys the very relationship caregivers are trying so
hard to preserve. In some instances, the illness can lead to family disruption, divorce, and alienation.
How does this happen, guilt and anxiety can interfere
between you and your ill family member. You may have been experiencing all of the difficult emotions
but are reluctant to express them for fear of further hurting your loved one. "She/he has enough to deal with",
you may be thinking. "How can I bother him/her with my problems?" And so you keep silent, while your
resentment builds to the boiling point.
For his/her part, the ill one may be envious of your good health
or ashamed that they have brought this problem on the family. They are likely to feel defective or flawed and fear that
no one in the family can every understand them - after all, they're not sick - and so they, too, give no voice to their concerns
and they fester within. With neither of you sharing your innermost thoughts, it easy to see how intimacy and communication
can break down.
You may also experience conflicts that are unique to your particular
situation. If you are caring for a sick spouse, some issues will be different from those you will face if you're caring for
an ailing parent or child. Your family can pull together - or be pulled apart - in many different emotions. Let's
take a closer look at these particular dilemmas and how they can affect the dynamics within your family.
Caring for a Spouse
The long-term illness of a spouse can be devastating to one's marriage.
In her touching book "Mainstay", writer Maggie Strong candidly documents her personal and familial struggles as she
cared for her husband, whose progressively deteriorating multiple sclerosis drove a wedge between them. Not only had
she lost her husband's companionship, his wage-earning capacity, his sexual contact, his cooperation and partnership in the
marriage, but she also believed she had lost her present and her future. She felt herself being swallowed up by her
Strong calls the caregiving experience a "double
whammy". "First you become a superman or superwoman", she writes, "Then you become invisible.
Although you didn't notice when the situation was acute, you now see that the sick person is number one and you are number
two." A shift in the balance of the relationship occurs. The caregiver is at once less important (since all
the attention is focused on the ill spouse) and more important (since the full responsibility for the household, childrearing,
finances, and caregiving now lie squarely on the caregiver's shoulders alone.)
Maintaining Your Marriage
Although Maggie Strong readily admits that some couples' difficulties
simply insolvable (for example, it may be impossible to rekindle sexual
feelings or autonomy if a spouse is completely
dependent physically or
incapacitated), she does make some helpful suggestions based on the work of Dr. Florence Kaslow,
a psychologist and family therapist who directs the Florida Couples and Family Institute in West Palm Beach. Some of
1. Allow the family unit more
breathing room: You may have to give up some of the exclusive relationship you have come to expect with
your spouse. According to Dr. Kaslow, "If the couple clings to each other and one spouse says, "I'll do it all',
they deplete themselves." Be open to others helping, including sitters, other family members, adult day-care centers,
and nurses. You may need a break from caregiving, but your spouse may also need a break from you!
2. Keep the lines of communication
open: If at all possible, share your
feelings with your spouse. Although you may show a strong
face to the world while agonizing inside, your loved one may interpret your silence as a lack of compassion or caring.
This, of course, may be far from the truth. Dr. Kaslow points out, however, that sometimes its' unwise to disclose all
of your feelings, since that might destroy your spouse's equilibrium. Still, she agrees, "it's good to have as much
open communication as you can handle: otherwise the illness controls the couple."
3. Allow yourselves a full range
of emotions: You may find yourself becoming numbed by your experience. If you deny your fears,
guilt, or anger and push them within, you may become depressed. You may also lose touch with your joyful emotions:
how can you be happy when your loved one is suffering so, when you're feeling so burdened? Dr. Kaslow advises that you
give vent to your full range of emotions. "It's important that the couple be sad and grieve and share pleasures."
The ability to move from sadness to joy with each other is an element of a good marriage, in sickness and in health.
4. Encourage independence:
If spouses are no longer able to earn a living, perhaps they can continue to contribute to financial decision making.
If they are wheelchair-bound and unable to do the marketing and cooking, perhaps they can plan the weekly menus and keep track
of supplies. It's vital to allow ill ones to use what capabilities they still possess. Otherwise, you turn them
into children, and consequently, you may feel even more burdened. Sick partners need not be indulged or pampered, but
should be encouraged to function at the highest possible level.
5. Express empathy:
Sometimes, to understand others' behavior, you must see the world through their eyes. Expressing compassion and validating
the emotions of those who are ill with statements such as "I really feel for you. You must be sad/angry/upset about
what's happening to your body" can go a long way in de-escalating potential conflicts. This gives sick ones permission
to share their feelings, without your having to do anything.
6. Seek counseling:
If you feel you and your spouse have reached an impasse, a competent counselor (psychiatrist, psychologist, clinical social
worker, marriage counselor, or clergy) well versed in the issues of family likes yours face can help you sort through your
emotions and concerns. You may find such an individual by asking for a referral from the physicians, nurses, or other
professionals who deal with your partner's problem; other caregivers; or local regional or national illness related societies.
There is no shame in seeking assistance, especially if it helps
you come to
terms with your problems. If your spouse in unwilling or unable to attend the sessions, go on your won.
- provide you with emotional support and a shoulder to cry on, so you
feel less alone
- validate your experience
- help you prioritize your many tasks, thereby relieving stress
- encourage you to seek respite
- furnish you with information about the illness and resources and
referrals for equipment, care alternatives etc.
- enhance the quality of our lives
- enrich your remaining days together.
There is much to be gained by giving it a try. Indeed, counseling
beneficial, whether you're providing care to a spouse, parent or child
From "Helping Yourself Help Others"