My dear Caregivers, be forewarned, there is a greater
enemy out there than any you can imagine when you take on this task. You can’t
conceive of how hard it will be to go from a busy, engaged lifestyle to one of
stillness, of sitting patiently nearby so that you can be bedside when you’re
needed, but you come to adjust. You don’t know how little you actually
understand about the processes of decline and the breakdown of the mind and
body, but you will become an expert in learning on the job. You don’t
understand what it’s like to care for an adult who has become, first a toddler,
then an infant, but who still knows that they are older than you and that you
shouldn’t be telling them when to eat or changing their soiled undergarments
and clothing, but you will both get comfortable with the reversal in roles over
time.
“What you don’t know” and “what you don’t understand” are
all enemies that you can overcome with patience, love and time. The real enemy
is the one for which you think you are prepared, but you are not. The real enemy is the sadness, the sorrow
that eats at you slowly in the night or in the quiet moments between your loved
ones breaths, as they start to slow. You tell yourself, that you are not
worried or stressed, that things are going “as expected”, until you realize
that your psoriasis, a stress triggered skin rash, is exploding all over your
body, or until you connect that every meal you eat gives you an acid stomach or
until you realize that, whatever message your body is sending to you, it is
becoming too obvious to write off as something else.
You assure yourself that you are prepared for what is
coming and that you are strong enough to handle it; maybe you’ve lost a loved
one before, so the second time’s gonna be a cakewalk. And you’ll believe that…
right up to the moment when you realize, viscerally, that this is a no win
effort. It doesn’t matter how hard you work, how diligently you have cared for
your loved one, or how much you have studied and put into place all the little
caregiver tips that you’ve found that “should help” your loved one, you are
going to lose this fight. And you are going to lose it Big Time. The game was rigged
against you from the start and you can’t stop it or even delay it beyond it’s
time. You will lose and your loved one, who has been the focus of your ever
shrinking world over the past few years, will leave you forever and you will be
alone. That’s the Sadness. That’s the enemy against which you cannot fully
prepare.
But I am telling you now, when the enemy strikes, you
HAVE TO STRIKE BACK! If the sadness tells you to go get a glass of wine, that you’ll
feel better, go get a cup of tea. You deny it control. If the sadness tells you
to go eat another cookie, you get some fruit or the power bars you got instead
of cookies so you couldn’t give in. You deny it control. If the sadness says
just stay in bed today, someone else will be here to handle things. Then you
get up, you shower, you dress and you Go Somewhere! It doesn’t matter if it’s
just to the store or to the pharmacy to pick up meds or just a walk around the
block, You Go. Or you set an agenda of work that you need to get done and a
timeline to do it and you get to work around the house. Whatever it is that you
can do, you do it and deny the sadness any control over you.
Yes, the sadness will still be there. You may weep all
the way to the store and you my weep all the way back home, but you have gotten
up and you have moved and you have fought off the lethargy and the despair that
the sadness tries to place in you. And don’t you Dare weep in front of your
loved one. They may not remember who you are anymore, but that instinct to
protect you is deeper than the reach of the disease and it will upset them. So
keep it to yourself.
Your friends and family will all say, “What can I do to
help?” And they will mean it. They want to help. They will most likely feel very
helpless themselves, being so far away or working during the day and caring for
families of their own in the evenings, so that they can’t do more for you and
for your dying loved one. They truly want to help, but in this, the hardest
fight for you, they probably can’t help. Let them help in other ways, or, if
they can spell you or “get you out” for a bit, call on them. Remember, however alone you may feel, you are,
most likely, not alone. Reach out; and maybe you can help others, by letting
them help you.
Caregivers, you may not be able to beat the sadness, and
I’m not sure I’d want a caregiver who didn’t feel its touch now and then, but
you can fight it to a stalemate and refuse to let it color your last days with
someone you love so much. Maybe you can find a fun outlet like writing a blog
for family members and fellow caregivers into which you can pour some of your
focus and thus keep the sadness at bay a bit. Whatever outlet you choose,
music, reading, writing, learning a new language, I’m actually considering that as
my “after the fact” distraction, do something that is beneficial and, if
possible, a blessing to your life and, maybe, that of others. You will need a
time to heal after all of this, and I assure you from my own experience, you
won’t recognize that you need it, but from all I’ve read, you will. If there is
any way that you can give yourself that time, take it. And always remember this
line from a favorite show of mine, “You have done the impossible, and that
makes you mighty.” You can put the sadness back in its proper proportion and in
its proper place with time. Until then, treat it as an enemy and contain its
impact on your life and that of your loved one, your family and your friends.
That’s part of the job! Now, chin up and go get ‘em Tiger!!
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