Wednesday 9 August 2017

"Just Let Go" Doesn't Work When a Loved One is Medically Complex

Jessica McLean is a writer who cares for her Mom. I asked Jess to write about the challenges of letting go and trusting others with her Mom's care. "Just letting go" doesn't work when a loved one is medically complex, as Jess learned.

A few years ago, my mother ended up in the ICU with sepsis and kidney failure. She spent over 10 days there, and I was trained by nurses before we left the hospital on how to administer IV antibiotics through a port they had inserted into her chest, and how to empty the nephrostomy bag which was connected to a tube that had been inserted into her kidney. It was a scary time, but the doctors felt like I was equipped to manage the rest of Mom’s care from our home, especially with her on the mend and a schedule in place for follow-up appointments and procedures.

Back home, my family came by intermittently to see Mom, including my brother who tried to convince me he could give mom her IV antibiotics if need be. “Oh yeah, I can do that,” he said one afternoon while stopping by with his girlfriend.

I replied “No, it’s much more complicated than that. Nurses had to train me how to do this, the cleaning of the site, heparin shots, saline flushes, how to set up a drip IV and prepare the bag of antibiotics. The only person doing this is me until I can show someone else how it’s done.” Not to mention it was an every-four-hour antibiotic, so we were on a strict schedule including waking up multiple times in the night.

My brother, 24 at the time, simply couldn’t understand that. “Please,” he said, “I work for a medical supply company, I see this stuff all the time.” He was literally convinced in his mind, though he spent little to no time on the actual nursing care Mom needed (even when she wasn’t almost dying), that now in her extremely delicate state, he could step in and have his hand at administering IV antibiotics without any training.

My dad and one of my sisters who was there were able to back me up, but the worst thing about that whole interaction was, in saying ‘No’ to my brother, the conversation transformed from a conversation about Mom’s care to an all too familiar accusation about how I was too controlling and needed to learn to “Let go!”.

Unfortunately, that wasn’t the first or the last time I would become infuriated with the lack of care and understanding the rest of my siblings had for Mom’s needs. Showing them how to clean her properly after a diaper change to prevent UTIs, or what to watch for as far as seizure activity was concerned, or how she needed to sit up right all the way to be able to swallow food correctly - it was extremely hard over the years for the kids (all in their 20s) of a parent to accept that simply being blood related didn’t make them qualified for the skilled nursing care Mom required.

It felt as though they often mistook my hyper-detailed and vigilant instruction for an assumption that they weren’t smart enough to figure it out on their own when in reality, I was deathly afraid and unhealthily anxious that something might happen to Mom and she would end up in the hospital or worse. And their frustration, likely with the whole situation around losing much of Mom at such a young age, and also at not feeling like ‘enough’ to take care of her consistently, bled into a blame game and shame game on me, the caregiver.

A few days after Mom got out of the hospital that time, my now-husband/then-boyfriend flew from Texas to North Carolina to be with me and help me take care of Mom. My boyfriend and I were deeply in love, so naturally as partners I could count on him for everything. He would listen when we would go over directions again and again, I was able to train him on administering the IV antibiotic, he was so sweet to Mom trying to get her to smile and laugh. He helped me feed her, and made her thickened water, and gave her pills, and changed her with me. He listened so intently without retort or ego or blame. He stayed for a couple weeks and it was everything.

The thing is, there was no history with my boyfriend and I concerning my Mom. All he knew was that he loved me, by default loved Mom, and wanted to do everything to help. He didn’t take personal offense at being taught how to do something, he simply said “How can I help?” and “Show me how.” There was no assumption that I thought he was dumb when I would painstakingly explain what to do if Mom had a seizure. It was a completely different experience than that which I shared with my siblings, and truly allowed me to let go (to some extent) - he fed my caregiving soul.

Translating day to day care for a loved one with incredibly special needs (MS, epilepsy, dysphagia, recurring pneumonia, bed sore, and UTIs) doesn’t happen in a matter of 30 minutes, yet at times I was expected to simply “leave a list” for a sister who was planning to show up to help when I had to take a 36 hour trip away for work. A sister who may not have visited Mom in months. This was the version of “letting go” that seemed so popular with those who provided the least amount of care and attention to Mom, and one many caregivers may relate to.
I don’t hold resentment or grudges over my siblings inability to comprehend Mom’s care and what it meant for me to be taking care of her 24/7 while working a full-time job from home. The years have passed, and I made bold choices for myself and for Mom, like moving us to Texas to be with my partner when we got married so we could take care of her together. And overtime, wounds have healed and lessons have been learned, and we’ve all moved forward together. And I know I’m not totally blameless in it all either. Over the years I conveyed frustration, anger, and judgement many times on those who I expected to help care for Mom who I felt fell short of that duty.

When it comes to caregiving, I take a note from Elsa in Frozen: Saying “Let it go” and actually letting go are two very different things! What does help is a deep and selfless understanding on behalf of the outside care network, not just of the care a person needs, but the care a caregiver needs as well. I’m so grateful for my amazing husband and all that he does as we continue to take care of Mom together.

I’ve slowly been able to let go of more responsibilities and even leave Mom fully in his care when I need to travel. Luckily for us, my brother, his fiance, and one of my sister’s are all pitching in to take over for a weekend so my husband and I can go to a friend’s wedding together coming up. The family is spending at least 5 days with us beforehand this time to be with Mom and nail down all the training and care responsibilities they’ll have.

Jess McLean 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.

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