No caregiver has time for judgement

SOMETHING ON MY MIND . . .

In an earlier edition of Care Fully, I shared Emma Hemming Willis was writing a book about her caregiving journey for Bruce Willis. Recently, those caregiving efforts have been at the center of heated online opinions. Here’s the short version of the story.

Bruce has frontotemporal dementia (FTD). Think of “dementia” as a general term for cognitive issues affecting “memory, language, problem-solving and other thinking abilities severe enough to interfere with daily life.” Alzheimer’s is an example.

Emma and Bruce have two children. As Bruce’s issue became more challenging, Emma relocated Bruce to a nearby home with staff to care for him. Apparently, this decision has led to judgement across the interwebs.

Emma knew the judgement would come. She said, “you know, it’s really not up for a debate. I know Bruce has the best care 100% of the time. His needs are met 100% of the time, as well as our two young daughters.” Good for you Emma.

Click on the image below to hear more from her interview.

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I see you caregiver and I’ve heard the judgement. But, here’s the thing . . .

No two caregiving situations are the same. Cognitive issues don’t just affect moods for those with dementia. Basic tasks such as eating, drinking, and walking become potentially fatal risks when someone has dementia.

I experienced this caring for my Mother. Her needs eventually surpassed my ability to care for her on my own. Sadly, I had to explore a variety of solutions. I would have loved to buy an entire home and staff it with experts to care for her. But, I didn’t have those resources.

Ultimately, given the complexity of her needs, we moved her into a nursing home. It broke my heart. Nursing homes were a “no” in my family, yet here I was doing the thing I was raised to never do.

Everyone (family, “friends,” and acquaintances) had something to say. It was ugly and hurtful. I was surprised by the judgement, not just from family or friends, but from the unlikeliest of places, colleagues.

Without being prompted, one colleague told me I was fortunate. She shared my Mother wasn’t aware of what was happening to her, and I should leave her in the nursing home without worry.

She made a point to state her grandmother’s situation was worse than what was happening with my Mother. Her grandmother suffered with mobility issues and had no cognitive challenges. Apparently, this meant her needs superseded anyone else’s.

🤯 Have you ever felt gutted, yet stunned into silence at the same time? There’s a first for everything, and that was it for me.

When I regained my composure, I kept my comments brief. I let her know everyone’s situation is different. And as a result, you should never discuss another person’s circumstances, especially sensitive topics, such as family.

Caregiving is all encompassing. It will stretch every fiber of your being. You will question everything at all times. You’re already judging yourself (we all do it even though we shouldn’t).

The last thing you need is someone that has no intention of helping you, telling you their perspective, especially if you haven’t asked for it.

You don’t need permission from me, but please stand firm. Don’t entertain unsolicited opinions. They aren’t worth a second of your thoughts. You are doing your best for your loved one. Keep it up.

LINKS OF NOTE

News for you.

• Does your loved one want to age at home? Can Medicare help with retrofits?

• What are other considerations are helpful for those thinking of aging in place?

• I love this story a family supporting their loved one’s dementia journey.