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.

Anne Troska

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.

Email newsletter signup

“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.