Who Are You to Speak

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Lely Palms Retirement Community

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Posted on

Jul 21, 2023

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Florida - Southwest

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One of the most difficult aspects of being a caregiver for someone living with dementia has nothing to do with their actual daily care.

The challenge involves acting as a loved one’s advocate, speaking up for their needs when they can no longer formulate what is best for themselves. This situation is most difficult when physical challenges arise, such as the need for surgery or rehabilitation.

These situations also occur daily. There were times I wanted to act as my mother’s bodyguard, her protector, to the outside world. It was my job, in a way, to speak the unspoken. To say the unarticulated. I couldn’t be there all the time. There had to be other ways.

Being Named “Caregiver”

When my first husband was scheduled to receive a bone marrow transplant, I was assigned the duty and title of caregiver. I had already been his unofficial one, but agreement to this designation was required for entrance to the program. I felt important. He and I were now on equal footing. I had as much to say as he did in this quest.

Not everyone has the flexibility to be a caregiver, to be the point person, at those important junctions. However, there are certain approaches one can take or learn from, to become the advocate when necessary.

Before someone enters a hospital care setting, it’s important to establish a line of communication and a routine amongst yourself and your loved one. Just as one might do when pregnant, always carry a bag of essentials. This might include copies of living wills, snacks for your loved one (my mother loved Sandies cookies), a notebook, lavender lotion, a book for yourself or a volume of poetry to read and maintain calm. While we all carry technology in our pockets to keep us connected to the outside world, consider books or magazines to keep your eyes from tiring and your focus on what’s important. 

Consider making a homemade sign to leave in the loved one’s room. Words to remind those attending to a loved one of your loved one’s name, a few tidbits about them, and a reminder, if necessary, this person experiences memory loss, etc. Some care communities will also send along paperwork which might also include a type of greeting card for the doctors. A way of saying, thank you for attending to me - and it’s important you know the real me.

Is this necessary? I’ve spent many hours in hospital and care home settings. My husband works in a hospital. We’re familiar with the demands on both sides of the patient bed. The pressure for everyone to perform admirably for the sake of someone they don’t know, and someone you love intensely, is real. The stakes are high. Eliminate the stress and tension whenever possible.

Become a Manager

“As your care recipient’s advocate, be involved, don’t accept the status quo, and don’t be afraid to voice your concerns,” writes Nancy L. Kriseman, in Mindful Caregiver: Finding Ease in the Caregiving Journey.

It’s okay to challenge what some might view as norms. Our loved ones are individuals. It only makes sense they would not fall into the “norm.” The challenge is in the communication style which we choose to adopt when speaking for our loved one.

When my mother was dying, family members wanted to come to town and visit one final time. As her ongoing caregiver for over six years, I didn’t want to leave her side. I had to trust in those members, and in the staff. However, there was an issue with one family member. Given the personality of this person, I fully expected them to walk into the care home and make demands, despite the groundwork I had laid for my mother’s peaceful goodbyes. The staff understood. They had, after all, understood my mother’s needs sometimes or anticipated them better than I could. I had been correct. That person did make demands. With a kind heart, the staff convinced that person they would ensure my mother’s needs were being met.

In the end, I didn’t have to be concerned so much about my communication style, but that of the trained staff. The most important aspect is that one remains committed to the values you believe are important to uphold.

The secret to caregiving is understanding there will be days when you feel you are advocating alone and recognizing there are always ways to give yourself some backup by being prepared.

Annette Januzzi Wick is a writer, speaker, and author of I’ll Have Some of Yours, a journey of cookies and caregiving. (Three Arch Press). A frequent contributor to Cincinnati.com, her work has appeared in Cincinnati Magazine, nextavenue.com, Still Point Arts, 3rd Act MagazineBelt Magazine (forthcoming) and others. Visit annettejwick.com to learn more.

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