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.

Care Partner Wednesday--I Am Not My Disease

Wednesday, 2 January 2019

The Small Miracle of Strength

You face a new year, and perhaps some of the struggles of the last year or two enter into the new year with you. January brings a fresh, unblemished calendar, but you carry your load and who you are with you. Sometimes, the weight of it bites into your shoulder as you try to move forward.

"You are strong."
"You'll be fine."
"Look at all the other hard things you've been through."

Over the last two years, as I struggled through the emotional roller coaster of separation, I heard these words. So many responses coursed through my brain. I am many things, but not strong.

Is it strong when your situation is thrust upon you? I didn't climb a mountain or win a medal. I put one foot in front of the other. Some might consider that strong, but I felt like I had no choice.
I'm told there is always a choice, and I guess that's true, but I couldn't drop out of life. I have to work and make a living. Even working full-time, money was tight, so curling up in bed wasn't a choice I felt I could make.

Strong? Did you see me hide in the bathroom and cry? Sit at my laptop and claim my allergies were bothering me? Bury my face in my dog's fur? Stay home from church for weeks because I couldn't face people? Quake in the lawyer's office? Feel my insides twisting into mush while smiling and dealing with issues at work? Strong?

I know your words are meant to encourage me, to build me up, to help me believe I can come through. The truth is, they invalidate my pain. It's as if you are metaphorically punching my arm and telling me to stand straighter and deal with my situation because I am strong.

I. Am. Not. Strong.

I value courage, and in the past few years, God has been drawing me from a tiny, shrinking life, where fear influenced every decision and I made only safe and easy choices. He showed me the person fear was turning me into, and it shocked me enough to ask Him to help me change. One Sunday in church, the pastor was talking about the new name God gave many of His servants when they chose to follow Him. Abram became Abraham. Jacob became Israel. My friend leaned over and said,
"Your new name is Courage,"


I took faltering steps toward courage. I fell. I turned back and embraced fear. I took a step, rejoiced and fell again. I moved forward by painful inches. You would think that each victory would make the next step easier, but it didn't. Even today, I struggle.

God doesn't tell me I'm strong. He knows me too well for that. He tells me to be strong.

"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." Joshua 1:9 NIV God offers me His strength, which is an unfathomable resource. He takes my quavering efforts and says He will be with me. Holds me. Picks me up if I fall and grabs my shirt if I try to run away. He never gives up on me. Never.

Because of that, I can be strong, even if I'm not strong.

We bring all of our baggage into this new year.  We bring who we are, for better or for worse. We don't know what this new year holds. But you, like me, can be strong.

Listen to what He is saying to you:

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand." Isaiah 41:10 NIV

Be strong, my friend.

The Small Miracle of Strength