Here are a few suggestions for how you can help the caregiver of a person with dementia. These are things that worked for me, but every caregiver’s experience is unique to that person, just as every person with dementia presents differently, and what helped me might not help every caregiver. (This is where Suggestion 4 comes in.)
 

1.  Listen without judging or suggesting. Caregivers don’t expect and often don’t want answers. They just need to vent.

 

1. Always consult the caregiver before visiting or bringing something. Because caregivers are with the person they’re caring for day in and day out, they will know if something is going to agitate or soothe that person.

 

1. Most caregivers find it hard or even impossible to ask for help. That doesn’t mean they don’t want or need it. However, receiving help often becomes an obligation they believe they must repay, and this adds to the mountain of responsibility they’re already hauling around. To help counteract this:

 

• Don’t offer or agree to do something then fail to show up. This can be devastating for a caregiver who has used every scrap of courage they had to ask for help. If you can’t do what you offered, find someone who can do it.

 

• Try to make it easy for the caregiver to accept your help.  I baked too much lasagna last night. Can I drop some off to you? or I need some exercise today. Can I mow your lawn?  One day a friend stopped by and asked my husband if he’d like to go for a drive. John was delighted and off they went, giving me an unexpected but very welcome few hours of freedom. And believe me, I didn’t spend those few hours mopping the floor. I went for a long, energy-restoring walk.

 

• Suggest that one day when things are better, the caregiver can pay the kindness forward by being kind to someone else. Since most of us are kind on a daily basis anyway, this is not a burden.

 

1. Be aware that while open-ended statements such as Call me if you need help, or I’m here for you, are comforting, they are generally something a caregiver can’t respond to.  What do you need the most right now?  is more helpful.

 

1. Most persons with dementia don’t know they have dementia, so they don’t see the sacrifices a caregiver is making on their behalf. But caregivers are like everyone else—they like to have their good deeds acknowledged. So, one of the best gifts you can give a caregiver is to let them know that you see what they are doing and what they are sacrificing to do it. 

 
Wow! You were so patient with your husband when he asked you four times where his glasses were that he was wearing all the time.
 
You work so hard all day looking after Aunty Jo, that I bet you hardly ever find time to look after yourself.
 
It must be so hard to walk slowly with Bob when you are usually such a speed demon.
 

1. Most caregivers want to connect with the children in their lives, and it is heartbreaking when visits must be limited or cancelled because of the distress their noise and energy cause to those with dementia. The caregiver is pulled in multiple directions, trying to pay attention to the needs of the person with dementia and the needs of the children while simultaneously carrying on a conversation with the adults accompanying the children. (See number 8). 

 
But it helps the caregiver when the family provides reassurance that they understand these challenges and how hurtful and stressful they can be, and also assures the caregiver that she will not lose a meaningful role in the family.  
 
This applies to visits by friends and groups. Caregivers often feel cut off, and it helps to let them know their place will always be there for them.
 

1. When visiting, remember there are two people with very different needs involved in this situation:

1. The person with dementia, who functions best in a calm atmosphere, familiar surroundings and routines. This person may seem happy and cognitively normal, because they are performing at their best, but visitors take a toll on them and after a while exhaustion sets in.

 

1. The caregiver, who must deal with upsets during or after the visit, ranging from the person in their care being just a little grumpier than usual, or going to bed and sleeping for a full day to hallucinating and being agitated, resulting in the caregiver doing double time trying to calm the person in their care down again.

 
Always consider the extra work a caregiver has to do to accommodate your visit, such as making up the spare bedroom for you, preparing meals and cleaning up after your visit. If possible, talk with the caregiver prior to your visit about ways to reduce this extra work. Offer to bring a ready-made meal or a sleeping bag and pillow or to help with meal prep and cleanup. 
 

1. Be aware that the following can create confusion, anxiety or simply exhaustion, for a person with dementia:

 

• A visit by multiple people that the person knows he should know but often doesn’t and so has to fake it.

 

• Children. While they often delight the person with dementia, children’s natural high energy and noise can be exhausting.  (My young granddaughter used to take a story book, sit on the couch with her grandpa and read to him. He often fell asleep and that was perfect.)

 

• Noise such as loud music or multiple conversations.

 

• Fast movements. The world for persons with dementia has slowed down. It takes longer for them to comprehend what is being said or to understand who or what they are seeing.

 

1. Sometimes, the best and only thing you can do during a visit is to be present. 

 

• Hold a hand. (unless the person with dementia is opposed to being touched). 

 

• Give a hug to both the caregiver and the person being cared for. Again, ask permission. When a caregiver is barely holding it together, a hug can be the breaking point.

 

1. Don’t exclude or talk about the person with dementia as if they aren’t present. Asking the caregiver, “How is Uncle Fred?” when Uncle Fred is sitting right there is hurtful to both. Direct the question to Uncle Fred, then give him some time to respond. Or wait until he is asleep or in another room to make your inquiry.   

​Thanks to Marlene Cymbalist and Harboursides Friendships,  a program funded by the Pender Harbour Health Centre Auxiliary, for hosting me to speak at their first in-person gathering since COVID.  It was great to discover the amazing and friendly spirit of this community and to meet so many people interested in books and caring about the challenges faced by caregivers of persons with dementia.
 
My next stop is a talk at the Gibsons Public Library on March 11 from 2-3 pm.  Hope to see you there!

 

CARIBOO BOUND!

Good intentions are wonderful in theory but sometimes impossible to carry out. Thus, instead of writing my monthly blog, I am darting between researching the as-yet-unnamed novel I am writing and gathering photos for a biography I have written, The Cougar Lady: Legendary Trapper of Sechelt Inlet. 

The Cougar Lady is now in the production phase and will be available in the fall of 2014.

Meanwhile, I am off to the Cariboo on June 2 for a week-long research trip and a book-signing at The Open Book in Williams Lake.  Hope this gives me a chance to meet and talk with those of you who live in that beautiful country.

However, in a musty cavern of my mind there is a vintage tale fermenting that will soon be ripe and ready for tasting. 

In a recent conversation with Anna Marie Tremonti  on CBC’s  The Current, New York publishing consultant Mike Shatzkin said,  “. . . a lot of people who write books don’t [ really care about making money]. They care about writing and being read.”

For the record, while the passion to write and the determination to write well, is my guiding light, when it comes to my chosen profession I also care very much about “making money” because I need to support myself. In fact, I do not know any of my writing colleagues who do not care about “making money.” 

Many people love the work they do, but that doesn’t stop them from demanding—and getting—fair compensation for their efforts.  Most writers work for two to three years on a book before it is sold to a publisher. After a year of editing and advance publicity, the book is placed on the market, and only after a full year of sales does the writer receive compensation. This is in the form of royalties—10-15% of book sales—and any advances that might have been received are deducted from these royalties.

The stories and/or histories in my blogs are available to readers at no cost. I do this, not for an ego trip, but because I hope to encourage those readers to purchase and read my published books and perhaps refer those books to other readers.

                                                                     TIMBER CRUISING

            
In 1949 jobs were scarce in Alberta. Desperate to support his young family, my father obtained permission from the Alberta government to cut a block of trees on Big Island. That spring he and one of his older brothers, George, rowed two kilometers across Chip Lake to the island and spent a full morning slogging through muskeg and brush searching for the corner stake marking his cut block.


At noon, cold, tired and hungry, they stopped at a small clearing and built a fire. While George broke branches into burnable pieces, Dad filled a billy with water. He was about to set it on the fire when he heard a snuffling noise. He looked up and his hand froze in mid-air.

“We've got company, George.”  

His brother turned just as a lean, hungry-looking bear ambled across the clearing. The animal paid no attention to the men and soon disappeared into the woods.

“Should have brought my gun,” Dad said, letting out his breath.

George laughed. “Not scared of that puny, half-starved bit of scruff, are you?”

“Not a chance!”  To prove his lack of concern, Dad casually added some tea leaves to the billy and dug a cheese and onion sandwich from his pack. He was about to take his first bite when the willow bushes across the clearing crackled and the bear ambled back out. Hunching down on his haunches, he proceeded to stare at Dad and George.

“You know,” said Dad as he casually rewrapped the rest of his sandwich and shoved it in his pocket, “I think maybe I’m not as hungry as I thought I was.”

“Well, far be it from me to get between a man and his fear,” George mocked. He shoved his own sandwich back into his pack and emptied the billy onto the fire.  “Let’s just find that bloody stake and get the hell out of here.” He wasn’t quite running as he led the way along a rough trail that they thought might have been made by the government surveyors. Close on his heels, Dad managed a glance back. Seeing with considerable alarm that the bear was following them, he launched part of his sandwich at the bushes behind him. In the few seconds it took for the bear to find and inhale the food, he and George hightailed it up a hill.  

 “That stake should be right over in there,” George said, pointing to a distant corner of the muskeg.

Since the bear had not followed them up the hill, the men felt safe enough to return to lower ground. For the next half hour they sloshed through an icy soup of decayed vegetation and fought their way through willow and cranberry bushes and around deeper ponds dotted with muskrat mounds, but they found no stake. Finally they climbed out onto a patch of dry land cluttered with a mat of spruce deadfalls.

Just thirty yards away was the lean and hungry-looking bear.

“Guess he liked that snack you gave him,” George said over his shoulder as he began jumping from downed tree to downed tree.

Certain that the bear, being less agile, would be unable to follow, Dad tossed his last sandwich on the ground then tree-hopped after his brother. He soon discovered that while they were struggling to keep their balance on the downed trees, the bear was passing easily beneath them.

When the deadfalls ended, the men raced across a grassy clearing, dodging blueberry bushes and rabbit holes until they came upon a large ant hill.

“This should slow the little bastard down!” George snarled.

They kicked the hill apart, and exposing an army of angry red ants, then sped towards the wooded area ahead of them. Before disappearing into the trees, Dad paused long enough to see a dark ball of fur hunched over the ant colony.  

It was the last they saw of the bear.

After a while they slowed their pace and finally stopped in the midst of a thick growth of mature spruce trees.

“This island’s not that big,” George reasoned, studying the trees. “I’ll bet you’ve got the only timber licence they’ve allotted.”

“You’re probably right,” Dad agreed.  “And this is a good patch of timber.”

Neither man said anything more about the bear as they made their way back to the lake and headed for home.

For the next six weeks Dad worked from dawn until dusk felling trees with a crosscut saw. Then he barged a team of horses over to the island and used them to skid the logs along peeled-pole rollways to the lakeshore. When he had a substantial pile of logs, he dumped a load into the water and towed them with his rowboat across the lake to George’s mill. The following morning he went back for a second load only to find a large notice on the pile:

         DO NOT REMOVE THESE LOGS. THIS IS PERMIT NO. 708 HELD BY THE                                                              LAKESIDE LOGGING COMPANY.

Investigation proved that my father’s timber permit was for a different location on the island—a mistake he blamed entirely on the bear.

Although he received no money for his labors, Dad was not penalized for the timber he had cut.  However, since he needed cash to feed his family, he had no choice but to sell his lease and start a new business—one that did not entail finding elusive stakes or dodging hungry bears.