Some people, like me, are attracted to those who need a little extra help through life. Some people have the perfect life and in a heartbeat, it all goes terribly wrong. Some people live healthy, long lives and then nurse their spouse through a painful final illness that drags on and on.
Whatever the case, at some point or another, you’ll probably find yourself being a caregiver. It kinda crept up on me until one day I got wise to my sweet self and realized that I wasn’t just a wife anymore. I was a caregiver too.
Here’s nine quirky tips for caregivers I’ve discovered over the past few years. They’re presented as tips for wives who care for their husbands because that’s my situation, but feel free to adapt them to your gender/roles/situation.
Be Flexible! Be Creative!
Caregiving is something you probably didn’t learn at your mother’s knee. If you had healthy parents and siblings, caregiving is new to you. You make it up as you go along as the needs of the one you care for are constantly changing.
So be flexible! Be creative! Be whimsical! Don’t get stuck in One Way of Doing Things. Caregiving is a wild ride as one day your loved one may be able to fix a leaky pipe…and the next, they can’t make a cup of coffee. Your job is to adapt to their changing needs as seamlessly as possible.
For me, that meant becoming as nocturnal as a hedgehog. That’s because Michael’s chronic pain tends to ease a little at night. I’ve switched my sleeping hours to match his so we can enjoy his best times of the day together. My all time record, to date, is serving breakfast at 6 p.m. and supper at 2 a.m.
Your Internal Alarm Clock
In the documentary What Happened to the Children of the Thalidomide Epidemic, Lynette Rowe’s mother comments that when she hears new mothers complain about having to get up at night with their newborns, she responds, “I’ve been doing it for fifty-two years!”
I get up a lot at night too, just to make sure Michael’s still breathing. But there’s a trick to that. Alarm clocks are too harsh. Instead, use your bladder as a gentle internal “alarm clock.”
If you have to get up throughout the night to check on someone, drink as much liquid as you can hold just before going to sleep. Your bladder will wake you up gently so you can go to the bathroom, check on them, down another glass of water and go peacefully back to sleep without ever having quite reached consciousness.
Try it. It works. With a little practice your loved one will probably tell you about the complete conversation you had with them in the middle of the night. A conversation you can’t even recall!
The Power of Junk Food
On really bad days when the tears flow despite pain medication, don’t underestimate the power of junk food to put a smile on the face of the person you love.
Oh, I know they shouldn’t have it. I know their cardiologist would tut-tut-tut…and frankly, he can shove his food shaming the same place as that gastric band he tried to sell me. (Hint: It’s where the sun don’t shine.)
Junk food is a quality of life thing. My Michael has made it very clear that, with one foot already on a banana peel, he’d rather enjoy his bratwurst now rather than suffer in this life for a few years longer. So on good days, I make meat, vegetables…proper healthy foods. And on bad days we have bratwurst, corndogs, homemade French Fries and onion rings, chips, ice cream, pop. It always puts a smile on his face…and another pound on my hips.
But what the heck! It’s so worth it.
Be Their Friend
Sometimes it’s easy to think of the disabled person you care for as A Job. They are the eye of the hurricane and you swirl around them — cleaning, cooking, walking the dogs, fighting with the insurance company, snaking out the drains. Doing all those things they wish they could do but their bodies say “No.”
As you swirl round them, don’t forget to give them a hug and kiss along the way. To sit down and shoot the shit with them for a good, long time.
In the rush of Tasks that Must Be Done, it’s easy to forget to be their friend. It’s hard to let household tasks go undone because your husband is having a bad day and just wants to cuddle in bed with you, watch movies and eat ice cream. You may feel like you’re being hedonistic and not doing anything of value but actually you’re doing the most important thing of all: being his friend, his shoulder to cry on, his cuddle bug, his lover.
And if the dishes stack up in the meantime, you’ve got the rest of your life to wash them. You may not have the rest of his life to cuddle with him.
Cut Yourself Some Slack
This is not a “normal” life so cut yourself some slack. A lot of slack.
A friend of mine wrote an inspired series of articles about this and it was like discovering fire. Especially the “use plastic silverware” thing. That was the Big Slack I cut myself. I don’t mind washing the big dishes, but all that damned silverware…!
Our foremothers’ exacting rules for housekeeping don’t apply anymore. My foremothers all seemed to consider their homes to be showpieces. There was little evidence that any living happened there. Any hobbies their husbands might’ve actually had were banished to the garage, attic or basement…well out of sight.
Disability and caregiving changes all that! Right now Michael has turned 3/4 of the Living Room into a sort-of Star Trek “Conn” of electronics, electronics, electronics and supplement bottles surrounding his recliner on three sides. It ain’t pretty but he’s happy and that’s all that matters. I clean around The Conn.
Grab bars aren’t cute. Walkers aren’t cute. Commodes aren’t cute. Hospital beds aren’t cute. But what’s important? Having a cute house or having a Home where living actually happens.
So cut yourself some slack house-wise. But also cut yourself some slack emotionally. Have your own space where you can have your own world and interests. Whatever mechanisms help you cope with the stress of being a caregiver is okay. For me, I’m either out in my garden or tucked up in bed with my Calms Forte, my cream soda and my chocolate, watching opera and journaling like crazy. It keeps me calm.
Bring the Outdoors Inside To Them
When Mary Ingalls lost her eyesight, Pa told Laura she would be Mary’s eyes. That’s why the Little House on the Prairie books are so rich in description, you can see, taste and smell every detail.
If your loved one can’t walk all the way out to sniff the lilac bushes, then snip! snip! Bring lilac cuttings indoors to them.
Make your home a feast for their senses. Arrange bouquets of flowers (or pretty weeds.) Hang great art and loops of Christmas lights. Open windows so they can hear the robins sing Vespers and laugh as the finches fight over the nyjer seed feeder. Have pets (cats are easier than dogs, bless their fuzzy hearts.)
They probably can’t travel so bring the world to them. Travel documentaries. Foreign films with subtitles. Try recipes from the other side of the world. I’m partial to ordering European charcuterie and cheeses from iGourmet, when we can afford it. (Yeah, that goat cheese was a big mistake! But it was still an experience!)
Balancing Responsibility with Emasculation
If your husband is disabled, chances are he still wants desperately to be the Man of the House. If you have traditional gender roles (as we have), it’s integral to his self esteem as a man to wield a wrench, mow the lawn, change oil on the car or snake out a blocked drain.
The problem comes when in his mind he can do everything but his body says, “Fuggetabout it, Buddy.” As St. Paul wrote, “The spirit is willing but the flesh is weak.”
It’s really, really tough to balance keeping the household running without emasculating your man. It’s a tightrope act I walk every day.
I was raised with carved-in-granite gender roles. Mom did girl things. Dad did boy things. Luckily, as an only child, I was taught how to sew a dress and change a tire. But Mom and I were to be submissive to Dad as head of the house. So I went into marriage looking for Michael to lead in all areas.
About three years after we were married, Michael’s physical condition worsened. Yet I still waited, looking to him to do all the Boy Projects. It took about four months before I figured out that I would have to step up to the plate…hopefully without treading on his self-esteem as a man too much. Michael was an engineer so he can invent or fix anything. But his mind doesn’t always realize that his body can’t keep up.
Sometimes, God forgive me, I go directly against my husband’s wishes. Take last week for example. It was hot, humid and the fakakta dehumidifier chose that exact moment to seize up and die. “Don’t worry,” Michael said, “I can fix it. Don’t buy a dehumidifier. They’re too expensive…” and drifted back into a low oxygen-induced sleep.
For hours I sat there comparison shopping and debating whether to go against his express wishes. But a man with 91% bloody oxygen can’t fix a damn anything! So I bought a dehumidifier.
And he was glad. He met me halfway. I did my best not to emasculate him; he did his best to swallow his male pride.
Being a caregiver means that we ladies have to put on our lipstick, roll up our sleeves and go all Rosie the Riveter. We may do things in unconventional ways that make our husbands roll their eyes. We’ve got broad shoulders. Let his self esteem have an eye roll.
FYI – Drano Max Gel is your best friend!
Swallow Your Pride
If you’re anything like me, you were raised to never ask anyone for anything. Be independent! Earn your own way! Don’t beg!
That’s laudable…but it doesn’t go well with disability. The best thing you can do for your disabled loved one is swallow that damn lump of pride in your gullet. As I see it, especially if your husband was harmed while in the service of his country (deployed or not), he earned everything you may ask for. And you, my dear, are just as much of a veteran for caring for him, as he is by taking the oath.
I remember when I learned to swallow my pride. Our city had just taken away the dear old 50 gallon drum that held all of our mailboxes and installed proper posts for our mailboxes. All our neighbors rushed to install their boxes atop the posts…and ours sat on the ground. Michael had just come home from heart surgery. He couldn’t. I couldn’t.
So our neighbors very kindly asked, “Do you want us to install yours?”
And I couldn’t speak. Literally, could not pronounce the words, “Yes, please.” I just stood there, my mouth opening and closing like an idiot. Heaven knows what expressions were flitting across my face. But I couldn’t ask for anything.
So they just went ahead and did it for us. After that I learned that people want to help. They want the warm, fuzzy feeling of doing a good deed. The same neighbors told me, “If you ever need any medical gear, just call us.” Then they opened the door of their shed and blimey! It was a veritable Aladdin’s Cave of every medical apparatus you would ever need.
There is a lot of help available for the disabled. It can be hard to find. I’m still learning. A lot of hospitals will write-off co-pays. Facebook is wonderful for placing ISO ads. eBay and Craigslist have lots of “used” medical equipment. And don’t be afraid to put up a “Go Fund Me,” even for yourself.
And last, but not least…
Don’t Lose Your Keys!
Long, long story. Just…don’t lose your house keys!
And In Conclusion…
I hope these tips have been entertaining and beneficial for you.
We all have those I-want-to-scream days just as your loved one has their cranky days. Try not to take it out on each other and, if you do, don’t take it seriously. Give each other Grace. It’s just a blip in what is hopefully an otherwise happy relationship.
Caregiving is not who you are. It’s just one of the many hats you wear.
They are not their disability. They’re a person.
Try not to let their chronic pain drive you and your big heart bonkers. I learned the hard way that pain is merely a stupid, senseless sensation. “Pain lets me know I’m still alive,” Michael says.
Caregiving isn’t easy but it is tremendously rewarding. I take a great pride in being a caregiver and you should too.
The End 😉