Wednesday, 26 June 2019

Care Partner Wednesday--How To Thrive After A Diagnosis of Dementia

"You have dementia, probably Alzheimer's type."

Time stops. None of the rest of the world exists. At this moment, only you, the doctor and this room matter. The walls seem to close in and there is a strange whistling in your ears. Alzheimer's? It's Alzheimer's?

You already strongly suspected, but the seed of hope still sprouted furtively in your soul. Perhaps an underlying cause could be found. Perhaps a medication would take it all away.

With six words, the doctor reached for that seedling of hope, grabbed it out of the soil of your soul and threw it on the ground.

Hope is dead.

Or is it?

For twenty years, I've worked with frail elderly people, many with Alzheimer's or other forms of dementia. They are the kindest, most delightful friends I have, who care, make important contributions and forgive my mistakes in an instant. Although devastating at first, especially to their families, they don't allow their diagnosis to define them.

Last year, I sat in a packed auditorium and listened to a man describe his journey with Alzheimer's. He'd experienced losses, and they weren't all memory. His wife left and took his dog. His children didn't understand. Although supported by friends, his family had all deserted. Yet he spoke to hundreds of people, and said, "I have Alzheimer's but it doesn't have me."

Those words resonated with me. No matter what disease someone is diagnosed with, their personhood remains intact. They will change because we all change and grow until we die. I'm not the same person I was at 20, a fact which gives me joy. I've grown, matured, handled challenges and become a better version of myself. This is possible for anyone, even someone with dementia.

I remember a care conference in January with a husband whose wife had just come to my neighbourhood. He lived independently in our apartments and was worried and weary. He asked many insightful questions as he struggled with understanding. Finally, he said, "I just have one more question. Is she going to get better?"

Time stopped. A breath and then another. I looked into his soft blue eyes and said, "No, she isn't."

He looked at the floor. "Is she going to get worse?"

I love my job, but not at this moment. "Yes, she will get worse." He met my gaze and said, "Thank you for your honesty."

"The thing is," I went on, "we believe people with dementia can live full, even happy lives. We want her to have meaning and purpose in her life, attend activities she enjoys and become part of the community. Our goal is that she will have quality of life and feel fulfilled, even in the later stages of her dementia."

Thursday, 13 June 2019

Care Partner Wednesday--5 Simple Strategies To Care For Yourself When You Don't Know How

Welcome to your flight care partner journey. Fasten your seat belts because it's going to be quite a ride. There are many instructions, but here's the most important one. Put your own oxygen mask on first.

We've all watched or tried not to watch, the boring movie about seat belts, exits by wings and washrooms. The oxygen mask falls from the ceiling for no apparent reason and a mother calmly puts it on her child first.

The picture this paints seems unrealistic. What harried parent wouldn't grab for the mask, screaming, "We're all going to die!" Still, it makes me think.

Why do we have so much trouble putting our own mask on first?

Applied to care partners, why is it so hard to take care of ourselves?

Here are some reasons given:
"I don't have time."
"Compared to my loved one's pain, my complaints are small and unimportant."
"My head is so full of the details of their care, I forget about myself."

These aren't excuses. Each of these and other statements are legitimate. Caring takes gobs of time and heaps of headspace. But consider this:

An oft-cited 1999 study found that caregivers have a 63 percent higher mortality rate than non-caregivers, and according to Sanford University, 40 percent of Alzheimer's caregivers die from stress-related disorders before the patient dies. 1

Sobering, isn't it?

Here's the bottom line:

Look after yourself or you won't be here to look after your loved one.

How do you do it? It's nothing you haven't heard before, but with statistics that high, it bears repeating.

1. Get Enough Sleep

Everyone is different in the amount of sleep they need, but it's a good guess that you aren't getting enough.

  • Don't stay up to get things accomplished when your loved one goes to sleep.
  • Take a nap when they do.
  • If they wander or are wakeful, hire someone for several nights a week to be with them while you sleep.
2. Drink Enough Water
  • Fill a large water bottle with water and ice and take it with you wherever you go. Flavour it if you have trouble drinking water as I do. 
  • When it's empty, fill a large water bottle...
3. Eat Healthly Food
  • Don't bring junk food into the house, except for a rare treat.
  • Make sure there are healthy options of finger foods available that you can grab on the run.
  • When you are able to cook, make larger batches and divide into meal-sized portions for freezing.
  • When you don't have time to cook, have simple options that are quick to prepare and easy to grab on the run, such as fish sticks, cheese, cut-up fruit etc.
4. Physical Health
  • Keep doctor's appointments for yourself.
  • Deal with any physical issues. Don't put things off.
  • Exercise, even in small increments. Use the stairs instead of an elevator, or park at the far end of the parking lot.
  • If you have a friend or family member staying with your loved one, resist the temptation to run around like a crazy person getting things done. Use the time for you and take a walk. Let nature speak to you.
5. Emotional/Mental Health
  • Acknowledge your feelings. Are you angry? Depressed? Frustrated? Name what it is you are feeling so you can begin to deal with it.
  • Talk to a counsellor. Perhaps a pastor or even a paid counsellor can help you walk through this time. It's always wise to get help.
  • Find a support group. Everyone needs this. Your friends and even your family may be well-meaning, but there's nothing on earth like talking to someone who understands.
  • Be honest with your family. Tell them you need help. If they can't supply it, perhaps they would be willing to help pay for it.
  • Look for community resources--respite care, day programs, special activities.
  • Talk to a friend. Even if they aren't in the same situation and can't totally understand, they cvan provide a listening ear.
  • Keep your sense of humour. It's a key ingredient to keeping your sanity.
  • What gives you a sense of purpose and fulfilment (outside of caring?) Spend some time each week doing that.
Remember--put your own oxygen mask on first!



Wednesday, 5 June 2019

Care Partner Wednesday--The Shocking Truth About Care Partner Trauma

Two flights of stairs stretched below me as I juggled my immense black suitcase, a purse and my lunch bag. So far I'd stuffed the suitcase in my car, drove to the station and hauled my bags on and off the train. But now the staircase loomed. Half my journey still awaited me, my shoulders ached and I wasn't sure if I or the suitcase would bump down the stairs next.

I'm notorious for trundling to work with heavy bags, but the day I packed the entire ingredients for Irish Stew for 50 into my oversized suitcase, I learned a valuable lesson. Streaming sweat and screaming muscles are the results of carrying a massive burden alone. The ensuing trauma is real and damaging.

"An oft-cited 1999 study found that caregivers have a 63 percent higher mortality rate than non-caregivers, and according to Stanford University 40 percent of Alzheimer's caregivers die from stress related disorders before the patient dies." 1
"What's the alternative? I need to care for my loved one."

You can. The key is to share your burden.

What Does the Trauma Look Like? 

Do you consistently feel overwhelmed,  angry, irritated or exhausted? Do you feel isolated by your care role, and have you lost interest in activities that used to excite you? Is sleep elusive and are your physical problems mounting?

You may be experiencing care partner stress.

Stress of any kind which comes from many sources and escalates soon becomes a trauma. What kind of symptoms should you look for?

  • Depression--everyone struggles with grey days, but when they string together into a continuous stormy sky, you need help
  • Continual sickness--Are you always coming down with something, fighting an infection or struggling with an illness?
  • Anxiety--is your "worrier" working overtime, so you never have peace?
  • Are you gaining or losing weight no matter what you do?
  • Stress puts you at higher risk for chronic diseases such as diabetes or heart disease.
  • Trouble focusing. Your thoughts are scattered and you have trouble completing a task because your mind is like a handful of marbles dropped on the floor. You sometimes worry you are developing dementia.
  • Excesses which were never a problem before--overeating, alcohol consumption, smoking etc. Looking for relief from stress in the wrong places.
  • Resentment

 What Is The Answer?

In taking an honest look at the problem, I've painted a bleak picture. If you suffer from several of these symptoms, even if they aren't continual, you need help.

The good news is found in community. You aren't alone. "Tune in" next week as we explore ways to share your burden.


Care Partner Wednesday--The Shocking Truth About Care Partner Trauma