Wednesday, 26 March 2014

Caregiver Wednesdays--Top Ten Tips for Speaking Alzheimer's

It's not it's own language, but there's a definite skill in being able to communicate with someone with Alzheimer's. It's not about the words so much as the spirit behind them.

Here are my top ten tips for speaking Alzheimer's

1. Don't try to reason with me. You will only frustrate both of us. (NOT: "Where is my car parked?" "Dad, you haven't had a car for years." INSTEAD: "Where is my car parked?" "I'm not sure where it is right now.")

2. Understand that my reality may be different from yours. I may be in a different time in my life, or a different place. Don't fight me on this, but enter my reality. (NOT: "I need to call my mother. She'll be worried about me." "Mom, you're in your 80's--your mother is long dead" INSTEAD: I need to call my mother. She'll be worried about me." "Tell me what your mother is like. Is she pretty?")

3. Being kind is a lot more important than being right. (NOT: "Someone stole my purse." "You're always losing things. It's probably here somewhere." INSTEAD "Someone stole my purse." "Really? Can I help you look in here first, and then we will report it?")

4. A gentle answer sometimes helps. (NOT: "She's got my pyjamas and she's going to steal them." She's just trying to put them away for the day!"INSTEAD:"She's got my pyjamas and she's going to steal them." "I'm here for you. Why don't we put them away together?")

5. Respect is key. ("What do you think I should do about this?")

6. Alzheimer's is a difficult language, and sometimes it's impossible to speak. There is a time for stepping away, and coming back in a few minutes. Chances are, the source of agitation will be forgotten.

7. There are times when distraction is possible. ("I want to go home." "We can do that after dinner, but everything is ready on the table, so maybe we should have that first.")

8. Meaningful activity is a great distraction. ("I want to go home." "I was wondering if you could help me fold these towels first?")

9. Sometimes I can't find the right words or all the words I need to say what I want to say. Listen carefully. If you can pick up a few words or a phrase, you can usually figure out what I want to say.

10. Don't get impatient with me. I will know it in an instant, and it will make me angry, or afraid anxious. It will not help me to communicate with you.

Saturday, 22 March 2014

The small miracle of trust

I have three buttons in me.

Worry buttons.

Hardly a day goes by, but I have my finger firmly pressed on one of them.

The green one is for silly worries that I know aren't real, but for one brief, breath-holding moment, I believe. Like that moment when you are standing in the grocery check out, and you've just rung through $400. worth of groceries, and you reach in your purse for your wallet, and you think, "What if it's not there?" It's stupid because it's always there. My purse is where I keep my wallet. Always. But for a few seconds, my finger hovers as I push the green worry button. Then I feel my wallet all is well.

The yellow worry button is the one I push most often. It's for real worries that might happen. Worrying about my husband driving in bad weather, or having money left at the end of the month, or a sick grandchild or any number of other everyday issues. Most times, my finger is on the button for hours before I realise it. Holding down this button distracts me, keeps me awake at night and generally disrupts my life.

The red worry button is for the paralysing, stomach-dropping times when the worst has happened and you are coping with it. Having you husband of 30 years die, being in a car accident, being sued--those were all times when I pushed the red button. This button is more than a distraction. It turns me into an emotional quadriplegic. I hold my finger on the button, listen to the frenzied thoughts in my head and worry.

When I was a young girl, and elderly lady gave me a card with the following verse on it:

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will guard your hearts and minds as you live in Christ Jesus." Phil. 4:6-7. 

I can still see the card, with pencil lines to keep her writing straight, which were later rubbed out. It made an enormous impression on me. This lady from church knew me, and knew that this was the verse I needed to take through life.

Obviously, I'm still not good at it.

The challenge is that my finger is on the buttons before I realise it. When I finally think, "Oh yeah, I could pray about that." I've endured hours and hours of worry.

It makes me sad, because I can look back to hundreds of times when God has been with me and helped me through green, yellow and red button kind of worries. He doesn't promise there will be no pain. He knows that there will be. He promises to be with me. And He has been. Every time.

Don't tell me that worry is sin. I know that, and now I feel a heavy weight of guilt on top of my worry. It's not helping.

Tell me what God tells me.

"Don't panic. [Get your finger off the button!]
I'm with you. [When have the buttons ever helped you, anyway? Even once?]
There's no need to fear for I'm your God. [I've been there since day one. You know that.]
I'll give you strength, [to pry your finger off that button!]
Keep a firm grip on you." [I always have, even when you're constantly pushing the button. Because I love you. I love you. I love you.]
Is. 41:10

It's all about trust. I know that, which is why I put YOU NEED TO TRUST ME in bold letters on my fridge a few years ago, with trust verses all around.

I'm a slow learner.

My Father smiles and gently nudges my hand away from the button.
"I've got this one, remember?"

Wednesday, 19 March 2014

Caregiver Wednesdays--How much for...

We have a new resident in the Courtyard Community at Christie Gardens.

That, in itself, is not unusual. Because we are a continuum, people come to live in our independent apartments or life lease condominiums. Over the years, as they age, their needs change, and often they move to the Courtyard Community, where full care is provided.

But this resident is different. She has four legs. And fur. And in her quiet way, she's rocked our world.

Opal is an Australian Cattle dog mix who was abandoned and has lived the last seven months at a shelter. She's is a senior--about 10 years old. I haven't heard her bark; she never jumps. She's polite and loves people. It seems her tail is always wagging, and she soaks up the love lavished on her.

Christie Gardens has been home for cats in the past, and presently Lily and Cloe live in separate neighbourhoods, reigning supreme in their respective homes. But everyone knows cats are independent and require a lot less care. A dog is a different story, and taking one into a retirement home is a radical move. Who will look after her at night? On weekends? Staff are busy. Who is going to take on an extra duty?

Tell that to the evening nurses who take her out for walks. The care partners who cuddle her. The receptionist who gives up part of her lunch hour to make sure she's walked. The family member who visits her mother and walks Opal.  It's not that she is a novelty. These people genuinely love her and want to be a part of her care.

It's well documented that pets benefit the elderly. I read scholarly works citing improvement in loneliness, the sundowning that often accompanies Alzheimer's and pain relief. People eat better, get more exercise and are happier. The studies prove it. One study had a control group with no pets, another with pets, and a third with a plant. Even having a plant was better than nothing, but the group with the pets were measurably better in all areas. I have to wonder--how much did they pay to run that study? I mean--duh!

I'm glad the facts are there to support the reality. But when you see the reality, the facts are obvious.

  • A depressed woman whose face is glowing as she comes to visit Opal each day.
  • A man whose usual demeanour is to frown and complain has a grin lighting his face
  • A group of residents with dementia, who are agitated as they experience sundowning after dinner. Opal comes to visit, and they immediately calm and interract with her.
  • A widow from another floor comes each day with dog treats for her.
  • The woman who is often angry, whose face softens as she talks to the dog.
  • Arthritic fingers straining from wheelchairs to reach out and pet her.
  • Innumerable conversations that start with, "We always had dogs…"
How much is that doggie in the window?


Wednesday, 5 March 2014

Caregiver Wednesdays--The Slippery Slope

The first time I experienced it was when my first husband, Bill, was sick.

The first inking was a day when he was in the emergency department of our local hospital. Because we were often there in that last year, I don't remember what precipitated this visit. It wasn't the time he collapsed in Shopper's Drug Mart parking lot, or the time the visiting nurse phoned me at work. Both of those visits resulted in admissions. This time, we saw his cardiologist, who read him the riot act. He had been telling him he needed to stop working for some time, but this time there was a difference.

This time, I was there.

He said, "You need to go on disability. Right now. Today. I will sign the papers." This time he listened.

When we came home, we phoned our three children, and miraculously, they were all able to come over within the hour. We told then what was happening, and we all talked about how life was going to change for us. I remember it being a night when we all felt close to each other, and it ended with our son-in-law praying.

I remember thinking, "I can do this. Life will be different, but different isn't always bad." I didn't know that we were entering the Slippery Slope, Our "new normal" would only last a few weeks.

What does the Slippery Slope look like? In a caregiving situation, it's when your loved ones' status changes drastically. Then it changes again. Then again. As a caregiver, all your time is spent either problem solving, making difficult decisions or trying to adjust to what changes have occurred. You are pulled in every direction. Afraid. Terrified of the repercussions of the difficult choices you are making.

Sadly, the ultimate end to the Slippery Slope is that you realize every change is a step down, and there can be no recovery. The ultimate end of the Slippery Slope is death.

Since Bill's death, I have realized this was happening in other caregiver situations.  Often, it is precipitated by an event such as a stroke. Increased frailty, difficulty with swallowing, skin breakdown, disinterest in food--symptoms become overwhelming until the caregiver realizes there is no returning from this slide. The end is near.

If you are a caregiver facing this, get support. Talk to your best friend, your spitiual advisor, a family member or someone who has said they will be there for you. Hopefully through your caregiving journey you have developed a network of people who are a support to you. You need them now. Lean on them, talk to them, cry and allow them to be there for you. No one should walk this journey alone.

If you are that friend or support person, realize the Slippery Slope is a numbing, overpowering experience. There are times when you can't think clearly, or make one more decision. This includes the decision to ask for help. Be there. Just show up with food, or a ride, a prayer or a listening ear. Learn when to step forward and when to hold back, but know that stepping forward is almost always the right choice.

Don't say, "If there's anything I can do…"

Just do it.