Jessica and her mom.

Daughters, meet fellow daughter, Jessica McLean.
Jessica is a freelance writer and full-time caregiver to her Mom who has Primary Progressive MS and Epilepsy. She lives Austin, TX with her husband and Mom, and blogs about caregiving tips, ideas, and solutions at Givea.Care. In this week’s blog, Jessica (aka ‘Jess’) shares three significant lessons she’s learned from and about caregiving.
Thanks, Jess for sharing your heart and wisdom!

You know how when you get a new job you might go through a training program, or shadow another employee for a couple weeks until you get the hang of it? If you’re reading this, the most important job you’re taking on or have taken on, is caregiving. Fact of the matter is, there isn’t a lick of training time to prepare you. Most lessons you’ll learn on the job, and some hopefully, from other caregivers. Here are three of my top lessons from going on 10 years of providing full-time care for my mom who has primary progressive MS and epilepsy:

It’s All in the Details

“Caregivers don’t get personal assistants, they do the job of four or five personal assistants…”

One time when Mom had had a seizure and we were in the E.R., I had a nurse ask me what medicines she was on, “if I could remember,” he asked, understandingly. I listed them off from memory, brand and generic names, with dosing and frequency. “Wow,” he said. “We usually have people in here who are like, ‘she takes the pink circle one a couple times a day, and I don’t know what it’s called.’ This is really helpful, thanks.”

To me, this was enlightening. Not to toot my own horn, but it’s vastly difficult to manage all the details of caregiving. Take meds, for example. Simply put, prescription drug names are long, hard, difficult to pronounce, and even more difficult to remember. On top of that, complicated medicine regimens, dosing, and frequencies took me years to memorize. I finally got wise to simply have printed copies ready for when we did need to go to the hospital or doctor’s office, but knowing them by heart helps in a pinch.

Making Notes In An Organizer And Having A Coffee BreakIt’s not just medicines either, but schedules, appointments, refills, tests, lab results, vitals, equipment, bills, invoices, you name it, the list goes on. Caregivers don’t get personal assistants, they do the job of four or five personal assistants (not to mention also doing the job of a nurse, therapist, cook, aide, etc). Hone your memory, get really good at list making, keep written records and schedules – all these minuscule details add up to mountains of knowledge that will save you time and stress down the line.

Don’t Expect Anything ‘Extra Special’ from Specialists

“As a caregiver, it’s important to know that doctors and specialists aren’t the end all, be all of care.”

In all our years with Mom’s neurologist, not once did he ask if Mom was having trouble swallowing, or if we had noticed any changes on her skin from immobility, or if she was experiencing any incontinence. We expected a lot from the specialist who was overseeing the progression of Mom’s MS and the fallout from her frequent epileptic episodes. While I understand specialists are laser-focused on their area of expertise, we expected a doctor like this to fill us in on all the “what could happen” and “here’s what to watch out for” stuff. And in the chaos of caregiving, the stress and tug and pull of it all, you don’t show up to a doctor’s appointment and think to ask all these questions.

So we had to work through things the hard way, and on our own. I didn’t know Mom was aspirating when she swallowed, until she ended up in the hospital and was diagnosed with dysphagia. I didn’t know how to handle incontinence when she stopped being able to ‘hold it’ and was wetting the bed, couches, car seats, you name it. I didn’t know the open skin on her tailbone was a bedsore and needed customized treatment, not just a gauze pad.

I don’t completely blame her neurologist, but he is certainly not without fault. As a caregiver, it’s important to know that doctors and specialists aren’t the end all, be all of care. They won’t have all the answers and may certainly not even offer any up beyond what insurance will pay. The most effective way to manage your loved one’s visit with a specialist is to come prepared with questions – write them down well before an appointment, bring in logs of your loved one’s day to day condition, take pictures and videos on your phone of concerning things like muscle spasms and wounds. Even if the specialist can’t assist you with everything, they can let you know who to talk to or refer you to the right person who can.

You Know Your Loved One the Best

I will say, after years of seeing loads and loads of doctors, nurses, techs, specialists, you name it, for the most part, each one had a good understanding that I knew Mom best and had the best insight into what type of care her condition required. However, it took me some time as a caregiver to master the confidence in knowing that. Medical professionals, especially doctors in hospitals, are quick to breeze by you with a fast update full of medical terms you don’t quite know and like a tazmanian devil, they’re there and then gone again. They might make assumptions about your loved one’s day- to-day living, and it’s then that you have to say, “Stop! What? Why? How? Repeat that? Thanks.”

“You know your loved one best, and the care a doctor orders may not be what is best for your loved one. You know your loved one best, and the way a nurse tries to move them or talk to them may not be the best way to move or talk to them. Never forget, you know your loved one best.

This isn’t to say that the medical knowledge and expertise of medical professionals isn’t correct or acceptable. It absolutely is. But it’s not always the best answer for your loved one. For example, one time Mom was in the hospital for pneumonia and my husband and I had stepped out for fifteen minutes literally to grab dinner after having spent a full 24 hours there. When we got back, they were preparing to put a feeding tube down Mom’s throat so she could take her pills (we had to crush and serve her pills with applesauce). Mom is unable to communicate for herself or move any part of her body, so them asking her about a feeding tube was useless.

Luckily I arrived in time, asked to speak with the doctor, told her that I could help Mom swallow her pills with a little applesauce and that the feeding tube wasn’t necessary. They understood, watched me do a swallow test with mom and some water and said, “Ok no problem, give her her pills.” No one had called me, I was just present at the right time, thank goodness, to prevent a lot of pain and unneeded stress for Mom. The medical team understood then that I knew her best.

Thanks again for sharing your story, Jess. The bottom line is family caregiving is a job. Sometimes it’s a full-time job in addition to another full-time job. It’s often a job you find yourself in without any training. For those of us who have been through the ‘on the job’ training, our mission and hope is to share the lessons we’ve learned and the insights we’ve gained to help our fellow daughters save time, money and their sanity. If you have an ‘on the job training’ story to share, we’d love to hear it. Send us an email to story@daughtersunite.com.

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