Caregiving for another adult human being is the toughest job
you’ll ever do. It is demanding,
time-consuming, thankless in many instances, and overwhelming. Why do we do it? We do it because we are caring people and want to help our fellow
humans. Usually, caregivers are spouses
or adult children. I have also known of
friends and neighbors stepping into that role and doing extremely well. Caregiving can be exhausting, never-ending
and frustrating. Each situation is
unique because each relationship is different so there are no rules that apply
to every situation.
Caregivers come in assorted sizes, ages, races, or
genders. They may be close family or
hired help. They may have little or no
training or be professionals in health care.
Whatever the situation, caregiving is something that you have to
experience to really understand what people who take on that role are going
through.
I was a caregiver for 4 months. A good friend of mine
suffered a serious stroke and I stepped in to help out. I came away with a new understanding of what
caregiving is all about and deeper insights into what it takes to do it.
Sitting in my office and having worked in a long-term care
facility, I have seen and heard all types of stories of family interactions. I would warn anyone who has aging parents
that they should be prepared to handle some of the issues of caregiving before
they need to so that they can have paperwork done, plans set up and consensus about
decisions that may need to be made. I
have found that at a time of health care crisis of a parent, most adult
children regress to about the ages of 8-12 emotionally. If possible, the ideal scenario would be an inclusive
family meeting with the parents (or without if necessary) to spell out what is
expected of each family member and what needs to be done.
Since most family structures are not ideal, that rarely
happens and instead there is a crisis and the adult
child nearest in location
is the one that usually steps in and handles whatever needs to be handled. Usually, it is a daughter, although lately I
have seen more men stepping up and taking on caregiving duties. What tends to happen is that the other siblings
give verbal support but don’t take much action. After a stressful period of caregiving, the caregiver is either
reduced to the status of a babbling idiot or blows up at the rest of the
siblings and hard feelings are generated which may never be healed.
Many times there are very valid reasons for an adult child’s
reluctance to take on the caregiving role.
Parents are not always perfect.
In fact, some are downright abusive.
Alcohol might have been a family problem. Certainly, there are days when I am sure that dysfunction is
alive and well in most families. In any
case, the important thing to remember is that each situation is unique and
there are no easy answers. This is not
a place or time for judgmental pronouncements – it is a time for complete
honesty about your feelings. If you do
not feel strongly that you can handle the caregiving role, than you need to
acknowledge those feelings and make other arrangements. There is no rule (moral or other) that says
you have to sacrifice your life for your parents if you came out of a difficult
childhood situation. Martyrs do not
make good caregivers.
Fortunately, most families have a stable structure and many
adult children step up and willingly and lovingly take on the role of family
caregiver. It is still a tough role to
fill but with love, patience, a sense of humor and good
support you will make
it through. It is important to remember
that as exasperating as your parent is at this period of his or her life, it is
a time-limited problem. If your parent
is in ill health, they may be fairly close to death. Sometimes remembering that you won’t always have them to care for
may help stretch the patience when it is wearing a bit thin.
Another idea is to be as prepared for the future as
possible. Check out what paperwork is
necessary to cover Advance Directives. Talk to your folks about where they keep
their financial records and what they would want done with their personal
property. I knew one sweet little lady
who had labeled everything with a tag on the bottom of the item. She had 6 sons and wanted to be sure she was
disposing of her possessions fairly.
Reassure them that you don’t want to take over anything, but, in case of
an emergency, you need to be prepared to be able to see that they get proper
care and that their wishes are carried out.
List their insurance policies and who to contact for both health
insurance and life insurance policies.
Look into nursing home placement before you need it. Check out retirement homes. If your parent may need subsidized housing,
it is never too early to find out what is available in the area they expect to
be living in. Most subsidized housing
have long waiting lists – 3-10 years is not unusual. Keep in mind they may have retired to a warmer climate (most are
warmer than Chicago) but, if there is a health crisis, you may want them closer
at hand. Long distance caregiving is
doable but difficult. Keep a list of
their close friends and their phone numbers, organizations they may belong to,
anyone who would want to know about their situation.
If possible, have that family meeting and decide who would
do what if one of your parents became incapacitated. It will save a lot of hard feelings later down the road and may
save your relationships with your siblings.
One adult child may be the consummate caregiver but terrible with finances. One may not be able to handle the day-to-day
stuff but may be thrilled to run errands on the weekend, do research, or other
chores. Find out whom you can count on
for respite time off. Most caregivers
are juggling workloads and family responsibilities besides being the main
caregiver.
Don’t waste time or energy being angry about the situation
or a sibling’s inability or unwillingness to help out. You will need every ounce of energy you have
for your caregiving task. A lot depends
upon relationships between siblings; between child and parent and it
is sometimes
hard to understand that while you may be ready and able to step up and take
care of “Mom” or “Dad”, sister “Sue” or brother “John” is not cooperating. My suggestion is to try to find alternate
ways they can help out. If that doesn’t
work, chalk it off, do what you feel is important and know that at some time in
the future, your siblings will have to resolve their issues with your parents. Having worked a number of years as a Hospice
volunteer, I found that the caregivers usually weathered the death of their
parents better because they had done everything they could to help. The siblings that popped in at the funeral
usually had a more difficult time resolving their grief. This isn’t a provable law but it is an
experienced observation.
Locate the senior resources in their area and find out what
is available. I find that many adult
children who call me think that there is a big universal umbrella that will
cover their parents needs and all they have to do is state what those needs
are. Unfortunately, that isn’t the
reality. However, if you know what is
available, sometimes you can patch together a reasonable support system to
provide what is needed. Again, check
with your senior service providers in your area by calling a local senior
center or Area Agency on Aging.
Lastly, if you do nothing else and find yourself being a
caregiver, take good care of yourself.
You need to survive for the long haul and this is true whether you are a
spouse or an adult child or simply a good neighbor. Treat yourself occasionally.
Learn to deal with the stress involved by meditation, exercise, yoga or
other relaxation techniques. Learn to
say “No” and stick to it. Delegate
duties to people who volunteer. Eat
properly and get enough rest. Don’t be
afraid to ask for help. And, most of
all, be kind to yourself. Stop with the
self-blame, self-criticism and dump the guilt.
Remember, you are doing the best you can and that is all anyone can
expect of you. Good luck and God bless
you. You are very
special!!!
Here are some additional web sites that might prove helpful:
Chicago
Caregiver Caregiving Caregiver Careview
