Wednesday, 9 January 2019

Care Partner Wednesday--I Am Not My Disease



The first care conference is often long.

Held a few weeks after a resident moves into care, it's the family's chance to meet with the doctor, nurse, physiotherapist, chaplain, dietary department and advocate. Through questions and discussion, the team gets to know the resident better, and a plan of care is worked out. It's fluid, of course, and changes are made as needed, but it's a start.

We'd covered a lot of ground. The husband had given us valuable input as to his wife's character and what activities gave her pleasure. A new patient for the doctor, he learned her medical history. We discussed the transition time and how we hoped to make it as smooth as possible.

As an hour drew to a close, her husband turned to me and said, "I have just one more question. Is she going to get better?"

The room seemed to reverberate as the question bounced off the walls. How long had he held some hope, however faint, that this would pass?

I looked into his soft blue eyes and said, "No, she's not."

His look told me he'd known but needed to hear the words. "Is she going to get worse?"

Most days, I love my job, but right now..."Yes, she will get worse."

He cast his eyes to the floor and replied, "Thank you for your honesty."

"The thing is," I went on, "we believe that people with dementia can live full, even happy lives. We want her to have purpose and meaning in her days. To attend activities she enjoys and to feel as if she is at home here. Our goal is that she will have a quality of life and feel fulfilled, even to the latter stages of dementia. The staff care about her as a person, and the life she lives is important to all of us. She's in a good place."

His eyes returned to mine as what I said resonated with him. "That's reassuring."

It's not about dementia, difficult behaviours, forgetting a family member's name or putting your clothes on backwards. These things happen, but they aren't the focus of our day. It's about respect, family, laughing together, and feeling at home. It's about having a fulfilled life and feeling you still have something to contribute.  I've known elders with no cognitive impairment, but little quality of life, either, as bitterness at the ageing process has stolen their joy.

So my question is...which is worse?

Last May, I sat in a full auditorium listening to a man with Alzheimer's tell of his journey. It wasn't an easy one. His wife left him and wouldn't even let him keep the dog.  His children didn't understand, and aside from the loving support of the Eden Alternative crowd, he stood alone. Alone, but bravely, he said, "I have Alzheimer's, but it doesn't have me."

As care partners, we can enter an overwhelmed mindset. Bad things happen. Sometimes we are torn to the core by the changes we see. It hurts! But know this--the person you love is still there. They can live, and love and make a difference and add to your life. Don't give the disease more power than it should have.

Love them, laugh with them, appreciate them for who they are today. Don't let Alzheimer's--or any disease--have your loved one.

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Care Partner Wednesday--I Am Not My Disease