DIA LO GUE
CAREGIVING IS A PREDICTABLE CRISIS, A LIKELY EVENT SO SCARY THAT WE PREFER TO CONSIDER IT UNLIKELY.
One day you will wonder – why
Start the conversation before the
hadn’t we talked about the inevitable?
crisis. Don’t wait until a crisis adds more tension or when your loved
Who would take care of whom? How
one isn’t well enough to participate.
would we pay for it? We tend to wait until we are too old or too sick to have
As children, we find it difficult to
decent, affordable choices for care in
talk to our parents about their
our rusted-out years.
twilight years and end-of-life issues. However, dealing with
Planning ahead is preferable if you can
these issues before they actually
face it. If you can’t, you risk plunging
happen, while our loved ones are
into confusion when full crisis hits.
still able to provide us with answers can make this difficult life event easier to manage.
There is no escaping this aspect of life, yet no one wants to talk about it.
HAVE THE TALK Caregiving is one of those conversations where you think the other person may not be thrilled to hear what you have to say. They take some amount of courage because you cannot be sure of the reaction and you are guessing that the reaction may involve anger, tears or some other negative emotion. For our parents, these subjects stir up fears of losing autonomy and control. For us, these topics ignite our own sense of vulnerability and sadness.
We stumble through the fog of denial when we see the early signs of deteoriating health in a parent.
Awareness seeps through only slowly, screened by fear and self-protective denial. Only later do we question ourselves: Why didn’t I notice earlier?
IT WAS ONE OF THOSE THINGS THAT HAPPEN TO SOMEBODY ELSE
EVERY STAGE OF CAREGIVING CALLS FOR A NECESSARY CONVERSATION Caregivers commonly go through several transitions as the care recipient’s health deteoriates. Caregivers may experience many challenging emotions, and find the process difficult to handle. Transitions are difficult in many ways, including role changes for both caregiver and care recipient, anticipatory grief, physical and emotional exhaustion, and negative emotions associated with caregiving. It is uncomfortable, but being honest in admitting fears and feelings is the way to open the channels of communication.
One conversation can make all the difference
For those of us who care for the chronically ill, communicating our care to those we work with and for is an ongoing challenge. Unfortunately, thinking about what is "appropriate" to say and trying to determine how much/how little you should disclose to others is a challenge that silences too many of us.
DISCUSS YOUR AND HAVE
OPTIONS A PLAN IN PLACE If you have older parents or a family
Don’t make the discussion about what
member who will seemingly require
you are going to have to do for them
your care any time soon, you need to
since most parents don’t want to feel
schedule this meeting. Approach it as
like a burden. Instead, make the
you would any other serious business
discussion about what they want to
meeting. You need an agenda and you
do and how you might be able to
need to think through all the areas that
help them.
should be discussed. Caregiving and all of its responsibilities Many times, parents are reluctant to
can be so complex and overwhelming.
have this conversation, and finances
Hence, it is important to have the
can be an especially sensitive topic.
necessary information to help your
You may need to be less direct with
loved ones when they need your help
those questions as you start out, but
the most an it often means that you
it is essential for all adult children to
will also be protecting yourself when
open this line of communication.
the time comes.
CON VER SA– TION Most of the times, talking about the needs of our ageing parents gets uncomfortable. Topics such as money, health status and end-of-life care are often emotional land-mines for both parent and child. To deal with the distress, we sometimes revert to childish techniques: we walk on eggshells, beat around the bush, or avoid uncomfortable topics altogether.
If you have siblings, discuss your concerns together before bringing up the subject with your parents. Hear each other's perspectives with an open mind and come up with a plan to hold a family meeting. Agree to communicate as a unified front.
02
01
FORM A TEAM
BE AHEAD OF TIME
Pave the road before you begin your journey. Learn about community resources
SEEK PROFESSIONAL EXPERTISE
If you fear your parents are showing signs of deteoriating health, ensure that they go through a thorough medical evaluation. If you need help sorting out the options for care, seek the expertise of a geriatric care manager (typically a social worker or a
centers, and home care agencies. Research different types, costs and availability of care - be informed about what choices are most realistic for your parents' needs.
04
03
- local area councils on ageing, senior
LEARN TO BACK OFF
nurse), who can help guide you and your
It may be painful to bear witness to your
family through the caregiving process.
parents' bad decisions. But they have the right to make them, unless they are deemed medically incompetent or a danger to others (for example, unsafe driving). Resistance is common, and the best way to address it is through understanding, patience, and sometimes even humour.
Pick a quiet place and time to hold discussions with the care receiver. Arrange a time when fatigue or worry are least intrusive. These factors can disrupt the caregiver's ability to listen and the care receiver's ability to focus on the message. Allow sufficient time for a conversation so you do not feel pressed to hurry on to other commitments.
YOU CANNOT DO IT ALONE You cannot do it alone. You have to
If you ever feel like you are caring in a
create a support circle – a circle of
haze, you are not alone. In fact, you
care. You need to choose doctors and
are in good company. Caregivers are
nurses and social workers who will be
particularly prone to the haze of
your advocates. They are voices of
abstraction because most of the time,
recognised authority who will speak
their care is given in exhaustion,
up for the rights of the patient and
hours on end, where routine
caregiver to determine the best goals
becomes the perfect breeding ground
of treatment.
for thoughts that take them far away from the place their bodies occupy.
You need to grow a network of family and friends to help you understand what you are going through and pitch in whenever they can.
TALKING ABOUT THINGS THAT MATTER WILL ENSURE THAT ALL ELSE WILL BE FORGOTTEN IN THE MIDST OF WHAT HAPPENS BETWEEN YOU AND YOUR LOVED ONES.
HAVE CONVERSATIONS ABOUT THE WHAT-IFS One of the biggest problems is the lack of honest communication. Feelings that we may consider unthinkable or unacceptable usually go unspoken. They fester and may later be expressed in angry outbursts, withdrawal or guilt-tripping, or the slow burn of resentment, creating a division between people who otherwise love each other.
IF YOU ARE A CAREGIVER, YOU ARE ALSO MULTILINGUAL
You are so rare because you speak to those you care for in the language of touch, connect with the dialect of silence, and comfort those most in need using the universally understood vocabulary of presence.
If you examined your hands as closely as you examine the latest smart phones, you'd realise the ultimate tool of connection is touch. No fees. No dropped lines. No overages. No bad internet connection. simply communion.
ASK MORE QUESTIONS WHEN YOU STILL CAN GET THE ANSWERS
IMMINENT F UT U R E
This book is not an exhaustive guide but aims to provide some useful insight to those who may one day be a caregiver.