Be sure to thank a Parkinson’s caregiver
Published 5:17 am Sunday, November 11, 2012
Column: Guest Column, by Anne Troska
The National Parkinson’s Foundation has declared the week of Nov. 4-10 as Thank a Caregiver Week. All of my information is slanted particularly toward those people who are caring for a loved one with Parkinson’s disease, but the same thing applies to anyone who is devoting their life to the care and welfare of another. This includes those persons who have a loved one in a nursing home, but are making that daily trip to eat with or just sit with someone dear to them.
Of course this situation is quite familiar to me. I have been a full-time caregiver to my husband for several years. I do it because I love him, and because we have a partnership where we look out for each other. That does not mean that there are not some changes have to be made in our lifestyle, and some sacrifices that are necessary to adapt. The important thing is for the caregiver to take some much needed time for themselves. Complete immersion of the self into a situation can result in depression and burnout.
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“How am I supposed to do this?” you may ask. “My mother (father, husband, wife) needs me 24/7. I don’t have time to do anything just for me.”
That is where you are wrong. It is important to reach out to the community for help. Let a friend or someone from a respite care organization stay with your loved one for a couple of hours every week while you do whatever you want to do. Maybe you just want to go into your bedroom and take a nap, or maybe you might want to join some friends for coffee or play a game of cards; anything that takes your mind off of caregiving for just a little bit helps. Look into transportation resources and home health services that can lighten your load.
Search out any support groups that may be available in your community. We at Southern Minnesota Parkinson’s Support Group strive to reach out to not only people suffering with Parkinson’s, but also the people that are providing the care in their lives. We try to provide informative speakers and programs but more importantly, we want to allow our members to share experiences and support one another. I know that there are also other support groups in the community for those who have suffered a stroke or have cancer. Senior Resources offers the Family Caregivers Network that meets the third Thursday of every month at Thorne Crest Apartments. I have not checked this out personally, but I may do so in the future. The important thing to remember is that you, as a caregiver, are only as effective as your own health allows. Taking care of yourself has to be No. 1 in order to keep on with the task you have before you.
As for the rest of you that are not involved in a caregiver situation, take the time to give someone a break if you can. And appreciate the thousands of people who are providing a much needed service for free, right in their homes. Caregivers of America, we salute you!
I am closing with a rather heart-wrenching poem written by Galway Kinnell about caring for an aging father.
While spoon-feeding him with one hand
she holds his hand with her other hand,
or rather lets it rest on top of his,
which is permanently clenched shut.
When he turns his head away, she reaches
around and puts in the spoonful blind.
He will not accept the next morsel
until he has completely chewed this one.
His bright squint tells her he finds
the shrimp she has just put in delicious.
Next to the voice and touch of those we love,
food may be our last pleasure on earth—
a man on death row takes his T-bone
in small bites and swishes each sip
of the jug wine around in his mouth,
tomorrow will be too late for them to jolt
this supper out of him. She strokes
his head very slowly, as if to cheer up
each separate discomfited hair sticking up
from its root in his stricken brain.
Standing behind him, she presses
her cheek to his, kisses his jowl,
and his eyes seem to stop seeing
and do nothing but emit light.
Could heaven be a time, after we are dead,
of remembering the knowledge
flesh had from flesh? The flesh
of his face is hard, perhaps
from years spent facing down others
until they fell back, and harder
from years of being himself faced down
and falling back in his turn, and harder still
from all the while frowning
and beaming and worrying and shouting
and probably letting go in rages.
His face softens into a kind
of quizzical wince, as if one
of the other animals were working at
getting the knack of the human smile.
When picking up a cookie he uses
both thumbtips to grip it
and push it against an index finger
to secure it so that he can lift it.
She takes him then to the bathroom,
where she lowers his pants and removes the wet diaper
then puts on the fresh diaper and pulls up his pants.
When they come out, she is facing him,
walking backwards in front of him
and holding his hands, pulling him
when he stops, reminding him to step
when he forgets and starts to pitch forward.
She is leading her old father into the future
as far as they can go, and she is walking
him back into her childhood, where she stood
in bare feet on the toes of his shoes
and they foxtrotted on this same rug.
I watch them closely: she could be teaching him
the last steps that one day she may teach me.
At this moment, he glints and shines,
as if it will be only a small dislocation
for him to pass from this paradise into the next.
Alden resident Anne Troska leads the Southern Minnesota Parkinson’s Support Group.