This post isn’t on my list of things to do before 50, but I have been feeling nudged by my intuition to write a post on this subject. If you have any form of attachment whatsoever to another human being – Congratulations!!!! YOU WILL BE A CAREGIVER AT SOME POINT IN YOUR LIFE. So, perhaps I can help, if only as a what not to do cautionary tale. My intuition, I call her Gert, can be quite the nag. Gert, has been tickling the back of my brain with thoughts of a little chat about caregiving. In my mind, this is what Gert looks like (below). These are some of the typical faces she gives me as I stumble through life.
Whenever I ignore her, she’s impossible (and yes this is all going on in my head every day). So, to make Gert happy, let’s have our little talk. Oh, one more thing, although we have established that I am a natural caregiver, just because the intention is there doesn’t mean my efforts don’t get screwed up, …often. In preparations for what you are about to read, I want you to know that I checked with the National Disability Abuse and Neglect Hotline (before you try and report me) and they said that while they may consider taking Dennis out of my care, you should know they will be placing him in yours! True, Dennis has a great sense of humor, is easy on the eyes and doesn’t complain much, but are you up to the challenge of full-time care for a person with quadriplegia. Are you prepared to be on call 24/7, can you mix an arctic cold Martini? Can you recognize 11 medications just by their size and shape? Are you willing to cook bacon naked just because it makes him smile? (I think it’s the mixture of danger and sexiness he likes). How much country music can you realistically listen to before going postal???? With that in mind, in the words of Usher, “This is my confession.”
DARK TALES FROM A FULL-TIME CAREGIVER (PLEASE DON’T JUDGE!)
- I sent Dennis out with his shirt on inside out.
- When washing Dennis’ hair, I over did the purple shampoo for grey hair and created a bluish, purply, hue to his hair. Usually, this hair color is only rocked by old ladies who sit in the front pew at church.
- Once shortly after I had helped Dennis on the toilet, Amanda called and asked to be picked up at school. I completely forgot where he was and left for Woodstock High. I had, at least, left him with a cell phone. Dennis called after 20 minutes, wondering when I was coming back and, “Why did it sound like I was driving”?
- After showering Dennis, I used self-tanner moisturizer by accident instead of regular and turned his mustache and “man parts” orange. He is only going to find this out when he reads this, I claimed to not know why this happened. Fun fact: the foreskin on a man’s penis simply doesn’t change with self-tanner. Unfortunately, other parts of the penis do! Who knew?
- Four years ago, we got a Labrador retriever puppy, Daisy. During the early months, we crated her at night, whereas now she sleeps right on top of us. One morning, I let Daisy out and was immediately distracted by the doorbell ringing. Usually, given the time, I would raise Dennis up in the bed with the remote and bring Daisy to give him a few good morning licks. Unattended, Daisy bounded on to the bed, Dennis was completely prone, his good arm trapped under a blanket and entirely at the mercy of a wildly affectionate puppy. When I finally came back to the room, Dennis was covered in dog slobber, and I mean in his ears, nose, and mouth. He was laughing hysterically and the more he laughed the harder she licked! I’m still not sure what the kids these days call “hooking up” entails, but I’m pretty sure by old school standards, Dennis and Daisy went to second base together.
(Gratuitous puppy picture to keep you reading!)
6. I put Dennis’ shoes on the wrong feet and sent him to work. One of his special education students pointed it out. Just last week, I sent him out to the local pub, wearing two different. I don’t feel like that was such a big deal because they were both Converse just different colors. 7. While “helping him” smoke a cigar I singed his mustache and dropped the ashes on his crotch, he shrieked (like a baby). Once, while trying to keep him out of the Andy Rooney look-a-like club, I cut off half his eyebrow while trying to trim them.
8. I mixed up his a.m. and p.m. pills. Taking Ambien at 9 a.m. makes for a looooonnnnnngggg day. I even told him to perk up!
I could go on and on with stories of my screw ups but I think you get the picture. Also, please bear in mind this all happened over a period of 15 years and change. If you’re still with me and aren’t on the phone to the NDA, here are some hard-earned tips on caregiving that may help you in the future.
CAREGIVING for THE CAREGIVER (that’s all of us)
- YOU MUST TAKE CARE OF YOURSELF! After 13 years of many migraines, illness’ and pneumonia, I have realized the world doesn’t need another Martyr. You know why? Martyrs DIE, and you’re no good to anyone dead! Get the help, screw the cost, go for the massage, keep your own doctors in the loop about your situation. Both my general practitioner and my “Lady parts” doctor are aware of my situation and take the time to ask questions and provide help for my situation. If your doctors aren’t that thorough give them the boot.
- Make your home a cozy haven for you both. Get it decorated just how you want it and make sure to have a spot set out just for your relaxation, with no visible signs of illness like equipment or medications. Buy the good scented candles and invest in a great sound system to play your favorite music. During a hospital stay when Dennis was dangerously septic, I told him, “When we get out of here I’m buying a hot tub”. He was completely supportive (true, he had a temperature of 104 and thought his black nurse was his (very Caucasian) Aunt Ninny, who had passed away a year earlier, but I just knew he was totally on board! It helped me to visualize something positive for the future while trying to sleep on what the hospital refers to as a “bed” but what felt like a very large, hard maxi-pad. I can sit like a Queen and gaze at the stars. *Side note – Dibbuns, did you know that stars live about ten billion years, and the earth was formed approximately 4.5 billion years ago. I think of all the things that have gone on on this planet under those stars and my trials seem small and fleeting. I mean, in comparison to stars my life has the briefness of the light from a sparkler. I’m just trying to sparkle as brightly as I can for my brief moment of illumination.
- Get a hobby you can do at home as well as at the doctor’s office or hospital. Knitting, crosswords, reading or write a blog you force your children to read and get excited about. Become a pen pal for someone who is in jail! Wait, scratch that I’ve heard that sometimes leads to weird romances. Find anything to do while waiting, besides scrolling your social media staring at pictures of your friends at Oktoberfest with their panties on their heads and their Lederhosen unlaced. Even worse are other peoples vacation pictures on Bragbook. Dennis and I stopped being able to travel several years ago, it’s just way too complicated and tiring. I am truly happy for my friends being able to go on vacation but there is no point in torturing myself with what’s been lost.
- Remember the person you are taking care of is not their disease. When Dennis has symptoms like double vision, fatigue, or pain, that affects my quality of life and prevents me from doing things, I curse the disease not him. I have named his Multiple Sclerosis, Mark Scott and there are times when I curse the f****** bastard like a prostitute in prison. It helps me remember Dennis isn’t trying to make my life miserable, the disease that occupies his body is making US miserable at the moment.
- Nurture friendships with people you can be unflinchingly honest with. I cannot stress this enough! You need people who will encourage you and listen without judgment.
Now kids listen up, this is the most important one, it’s not your thoughts that matter it’s your actions. Kyle, I really, really, didn’t want to clean you up when you pooped in your snowsuit and then hid in the closet. You told me you were “busy think, think, thinking like Winnie the Pooh” but you were making a mess of epic proportions! I am your mother and I love you, so I did it. Human nature is selfish and our mind almost always wants to default to what is comfortable for us. When we choose to care, when we choose to be patient, loving and understanding with someone who is ill (I promise I fail at this more than you think) and maybe being annoying and difficult, that’s where the magic happens!
I have a dear friend who had a crappy dad. He left her mom and her when she was small and never fulfilled his role as her father her whole life. Fast forward, he’s dying of cancer and guess who gets to take care of the unrepentant, grumpy dying old man? Bingo, his daughter, who turned out absolutely fabulous despite his neglect. She didn’t have to, but she did it anyway. My friend moved him in until he got very close to death and did her very best to make him comfortable.
I met with her for a glass of wine in the middle of all this, she was exhausted, frustrated, and bitter. I told her I was proud of her for doing the right thing and with tears in her eyes she said: “But does it count if I don’t want to?” YES, YES, YES it does because you’re making the choice. There is a poem by Mother Theresa that sums it up far more eloquently than I ever could. It’s no wonder that super awesome gal was named a Saint! It usually doesn’t seem like it at the time, but from personal experience I can tell you that when you can push through the feelings of frustration and anger (sometimes Gert practically has to hit me on the head with her enormous handbag to recognize the right thing to do), the entire universe takes on a new level of meaning. The only way I can put it is, I have felt my soul evolving during this season of intense caregiving, much like it did when I became a mother. This may not be your experience, caregiving may always feel for you like having someone salt your eyeballs, and that’s ok, but doing it anyway will let you lay your head on your pillow and rest the ethereal slumber of the purposeful heart.
So my dear Dibbuns, as we head towards the holiday season of Thanksgiving (apologizes Canadians I missed yours in October) and Christmas. Take Care. Take care of each other and take care of yourself, even when you don’t feel like it and even when you’re not sure how to. Put away your phones and talk to your grandparents and don’t remind them they have told you the story of Uncle Bernard getting stuck in the outhouse with chickens, like a thousand times. Ignore Aunt Velma’s lack of tact, when fresh out of the nursing home for the holidays, she tells you, “You look thicker”. Sit down, ask her about her childhood, hug her, and honor her for merely being a fellow human being. Do your best at caring and rest assured you will enter the never-ending circle of care that goes around and around and gives our hearts courage for the journey!
Goodbye, for now, dear ones, I will be frolicking again soon!
Happy Happy Holidays, Mummy (aka Auntie Lee-Lee)