When the famed ‘Alice” of Alice in Wonderland watched the white rabbit disappear down a dark hole, and then followed him, strange and terrifying things happened to her.
Having Alzheimer’s must be a bit like that.
My mother was a gentle woman with a wry sense of humour. At the age of twelve she had been sent out to work as companion and general help far from her home. I never heard my mother express self-pity or regret. But when Alzheimer’s began to rob her of her recall, I could see it was destabilizing, like having the rug pulled out from under her mental and emotional footing.
I was visiting her and Dad one day and Mom was determined to challenge Dad’s statement that Mom can’t remember things anymore.
Jerry was here today, she told me, looking at Dad to make sure he was listening.
Yes, he came this morning for coffee, Dad confirmed.
We had a nice visit, Mom said, smiling at me. Dad nodded.
And Jean and Roy are coming over tonight to play cards, she announced almost triumphantly. Again, Dad nodded. Yep, he rubbed his hands together anxiously and turned away from us to look out the window. They sure are.
Mom smiled and nodded her head in satisfaction as if to say Point proved!
She was getting up to make tea when she looked down and saw a well-used pill pack on the table beside her. Frowning, she picked it up, looked it over and said, Whose are these?
They’re yours, for goodness sakes! Dad said, unable to keep the irritation out of his voice.
Mom’s disappointment was palpable. Her shoulders sagged, her eyes filled with frustration and fear.
It hurt, to be ambushed by her own mind. To have this common, everyday information disappear down a black hole.
I could see that this sudden loss frightened her, caught her completely unaware. She was blind-sided by a gaping hole in the kind of memory that we all take for granted, that she had taken for granted all her life.
How terrifying to live with a memory thief inside her head! So much of who we are now is made up of the memories we treasure and share; and so much of our expectation for the immediate present comes from. our short-term memory, from absorbing and retaining the content of recent and current conversations.
As caregivers, sometimes the best we can do is recognize the trauma of this ongoing loss and admire the coping skills that our Alzheimer’s-inflicted loved ones have developed.
The Burnaby Support Society’s Caregiver Expo provided a fount of information. Here are some agencies that are available to us, and some companies that offer services we may choose to use:
- NIDUS: is an organization established in 1995 to provide both information and assistance with Representation Agreements. Nidus now serves as a registry for all the documents that outline your instructions for care should you become no longer capable, due to accident or illness. Materials and information are available on the website: www.nidus.ca
- CAREGIVER EDUCATIONAL SERIES: Available in Burnaby, this is a six week course presented twice a year on how to alleviate, manage and improve the quality of life for the caregiver and the care-recipient.
- PARKINSON SOCIETY OF BRITISH COLUMBIA: Provides free counselling for those who have Parkinson’s as well as their loved ones. Other services include a network of over 50 support groups province wide. Contact them at www.parkinsonbc.ca
- BONE BROTH: Made from simmering bones for up to 36 hours (in water) is said to reduce joint pain and inflammation, promote strong bones and heal and seal your gut, promoting healthy digestion. To find out more, or place an order call 604-432-9961.
- ALLIES IN AGING: Family Caregivers of British Columbia (FCBC) provide many supports, one of which is a magazine called The Caregivers’ Connection. To sign up for this publication, follow this link: www.familycaregiversbc.ca
- FREE LEGAL CONSULTATIONS FOR SENIORS: Available in New Westminster, Surrey, Burnaby, North Vancouver, and Vancouver. To find out more about this resource, call 604-336-5653. Or learn more at www.SeniorsFirstBC.ca
- RESPITE STAYS: Joel Grigg of AgeCare Harmony Court Estate advised me that care-recipients can come to stay at their retirement home for $90 a night. This includes meals, overseeing their medications, access to facilities and support staff availability. For the lower mainland, this is a bargain, as well as granting peace of mind to the caregiver during a much-needed break. For more information go to: www.agecare.ca.
- SAIL: Stands for Seniors Abuse & Information Line. 1-866-437-1940 available weekdays 8 a.m. to 9 p.m. with interpretation available on request from 9 a.m. to 4 pm weekdays. Holidays excepted. All calls are confidential.
- LEGAL DOCUMENTS: I learned that Wills cover everything after death, Power of Attorney covers legal and financial matters while you are alive, and The Representation Agreement appoints someone to make health and personal care decisions as you have instructed, on your behalf.
- CAREGIVER SUPPORT IS AVAILABLE: Caregiver Support is available in BC, often through the organizations that provide information and support for the care-recipient’s illness, such as the Alzheimer’s society, the Parkinsons’ society, and the cancer society. There are also community and hospice caregiver support groups. The best way to find support? Call your local hospice society offices.
The Caregiver Expo happens every year in Burnaby and the exhibitors offer valuable information from the price of retirement housing to government, private and volunteer agencies that are in place to assist in the process of caregiving. Caregiving is demanding and as often frustrating as it is rewarding. To give and get the most from this journey, it’s important to care for yourself and your loved ones. These resources will help you to do just that.
As of yesterday, it has been three years since that fateful day when my cell phone rang and I answered, and you said “Come home, Marg. Come home NOW.”
I left my groceries on the checkout counter and rushed home. One last kiss and you were gone.
I wasn’t sad then. I felt oddly congratulatory. As if you had escaped. You surely found freedom. Freedom from pain, from the physical limitations which your illnesses imposed upon you.
You were Chris, bigger than life and always wise and funny and “up” for us. Right to the end.
I couldn’t grieve for you. You were off on a whole new adventure, a new realm. It was we who found ourselves poorer for your passing, our lives less brilliant and comforting. Our ration of love depleted.
It’s hard to believe sometimes that three years have passed, and in other ways, it seems like a lifetime ago.
I will always think lovingly of you. How your greatest pleasure was taking care of people, whether it was our children and grandchildren, or the tenants at Mathew Court, or the kids who worked as painters for you.
It used to annoy me that you would dig into the garbage bin to collect and give refundable bottles to the homeless. But I was someow proud, too, of that and of how you came with me to help at the Sisters of Atonement, making and serving hot dinners. Or spreading butter and the nun’s special blend of fish or stale cheese slices or peanut butter on bread for lunch time sandwiches in the big soup kitchen.
I never sit in a church pew without remembering how you took my hand in yours and held it on your thigh. If I close my eyes I can still feel the smooth fabric of your slacks, the warmth of your body heat.
Whenever we went out, you always made sure we had fun. You could really dance. Before your arteries shut down, before your legs went, you danced up a storm. Jive, waltz, polka; it made no difference. You were graceful and strong.
You loved NFL football and world history and crime TV. You loved us. You loved me.
And that’s a gift that I will always be grateful for. A gift that I will take to my grave, regardless of where my journey may take me now.
And for that great love, I thank you. More than I can ever say.
The Burnaby Seniors’ Outreach Society’s Caregiver Expo provided a fount of information. It was a pleasure to meet speak with Helena, following up on our initial phone conversations. If you weren’t able to attend the Expo earlier this month, here is a cheat sheet of valuable information: ten things I learned that I believe will prove helpful to caregivers.
NIDUS: Is an organization established in 1995 to provide both information and assistance with Representation Agreements. Nidus now serves as a registry for all the documents that outline your instructions for care should you become no longer capable, due to accident or illness. Materials and information are available on the website: http://www.nidus.ca
CAREGIVER EDUCATIONAL SERIES: Is available in Burnaby, through the Burnaby Seniors Outreach Services Society. This is a six week course presented twice a year on how to alleviate, manage and improve the quality of life for the caregiver and the care-recipient. More info is available at : https://www.bsoss.org/index.php/contact-us
PARKINSON SOCIETY OF BRITISH COLUMBIA: Provides free counselling for those who have Parkinson’s as well as their loved ones. Other services include a network of over 50 support groups, province wide. Contact them at http://www.parkinsonbc.ca
BONE BROTH: Is made from bones from organically raised and humanly butchered cows, the bones are simmered in water for up to 36 hours. The resulting broth is said to reduce joint pain and inflammation, promote strong bones and heal and seal your gut, promoting healthy digestion. To find out more, or to place an order call 604-432-9961.
ALLIES IN AGING: Is the mantra of the Family Caregivers of British Columbia (FCBC). This organization provides many supports, one of which is a magazine called The Caregivers’ Connection. To sign up for this publication, follow this link: http://www.familycaregiversbc.ca
FREE LEGAL CONSULTATIONS FOR SENIORS: Is available in New Westminster, Surrey, Burnaby, North Vancouver, and Vancouver. To find out more about this priceless resource, call 604-336-5653. Or learn more at http://www.SeniorsFirstBC.ca
RESPITE STAYS: Joel Grigg of AgeCare Harmony Court Estate advised me that care-recipients can come to stay at their retirement home for $90 a night. This includes meals, overseeing necessary medications, full access to facilities along with support staff availability. For the lower mainland this is a great bargain; it can grant peace of mind to the caregiver during a much-needed break. For more information go to: http://www.agecare.ca.
SAIL: Stands for Seniors Abuse & Information Line. 1-866-437-1940 available weekdays 8 a.m. to 9 p.m. with interpretation available on request from 9 a.m. to 4 pm weekdays, except for holidays. All calls are confidential.
LEGAL DOCUMENTS: I learned that
Wills cover everything after death,
Power of Attorney covers legal and financial matters while one is alive,
And a Representation Agreement appoints someone to make health and personal care decisions as you have instructed, on your behalf if you are incapacitated due to illness or accident. For more information, contact Nidus, (see #1 on this list) or use your free 1/2 hour legal consult (#6).
CAREGIVER SUPPORT: Caregiver Support is available in BC, often through the organizations that provide information and support for the care-recipient’s illness, such as the Alzheimer’s society, the Parkinson’s society, and the cancer society. There are also community and hospice caregiver support groups which are often free. Contact Fraser Health Services or Vancouver Coastal Health to arrange for a free assessment of the services for which you qualify, and a determination of costs.
And I cannot say this often enough: the best way to find support? Call your local hospice society offices.
The Caregiver Expo happens every year in Burnaby and the exhibitors offer valuable information ranging from the price of retirement housing to government, private and volunteer agencies that are in place to assist in the process of caregiving.
Caregiving is demanding and often frustrating as well as rewarding. To give and get the most out of this journey, it is important to care for yourself. These resources will help you to do just that!
If you are a caregiver living in B.C.’s Lower Mainland, here is an information and resource session that is well worth attending. It’s the Burnaby Seniors Outreach Services Society Caregiver Expo.
I spoke with Helena at the office (604-291-2258) and she gave me some info on who the exhibitors will be.
BC 211 agent. Helena told me this is a help line where people actually answer the phone when you dial 211. You tell them your situation: e.g. “My wife has dementia, and I would like to go away for a few days. Are there any respite care facilities in my area?” Internet research is great, but this new approach to the old Redbook is personable, friendly and well resourced.
A support line representative from the Family Caregivers of BC will be available to advise on the services provided by this organization. http://www.familycaregiversbc.ca/get-help/1-to-1-caregiver-coaching-2/
Various care home companies (e.g. Chartwell and Harmony House) will be on site to answer questions regarding assisted and independent living. Did you know that some care homes offer temporary respite stays? What a great way to introduce your loved one to the possibility of community living. To check them out before going you may wish to research at www.comfortlife.ca
Allies in Aging holds North Shore workshops such as : Exploring Depression and Delirium; Translink Rider Training; and It’s Not Right! a workshop exploring how to detect and report elder abuse. alliesinaging.ca/
Citizen Support Services representative: From Burnaby City, this department offers grocery shopping and delivery for seniors, (free of charge), companionship through visitations and phone buddies, as well as lunches, bus trips and resource information.
Revenue Canada agents will be on hand to explain the various caregiving credits available for use at tax time.
Service Canada agents will explain the ins and outs of the newly extended compassionate care leave for those who work and still fill the caregiver’s role.
These are just a sampling of the exhibitors expected to attend. And there’s a bonus–admission and parking are free. There is something for every caregiver to enjoy at this event sponsor by the Burnaby Seniors Outreach Services Society https://www.bsoss.org/
Caregiver Expo 2018
Date: Saturday, February 3, 2018
Time: 9:30am – 2:30pm
Place: Bonsor Recreation Complex, 6550 Bonsor Ave., Burnaby, BC
Free admission and free parking!
DO YOU LOOK AFTER A RELATIVE, FRIEND OR NEIGHBOUR WHO COULDN’T MANAGE WITHOUT YOUR HELP?
If you provide unpaid support to a relative, partner or friend who is ill, frail, disabled or has a mental health or substance misuse problem, you are a caregiver. Come along to our Expo to learn about programs and services that can support you in your caring journey.
The Caregiver Expo will feature over 20 exhibitors, Door Prize Draws, and great speakers including a keynote speech by Bee Quammie, Writer, Digital Content Creator, Event Speaker.
Any questions please call 604-291-2258 or email firstname.lastname@example.org.
Nowadays many families experience a situation in which one or more members find themselves in the position of caregiver. And it’s Christmas! What better time to offer the gift of a helping hand.
Most people want to help, they just have no idea what to offer in view of their own time constraints.
If you really want to make a caregiver’s day, here are ten ways to do that. But before you call with offers of help, check your own schedule so that you know before hand when you can deliver on these offers.
Be specific. Decide what you are willing to provide: time sitting with the patient? Meals? Baking? Help with housecleaning or other chores? Running errands?
Bring or send flowers. Flowers brighten up any space, cheer up a sick room, and are a beautiful reminder that somebody loves you.
Phone first. Arrange the visit for a time when you can stay at least half an hour. Do not stay more than one hour. Spend at least some of your visit with the person being cared for.
If your intent is to spend time with the caregiver, stop and spend a few minutes with the ‘patient’, and then continue your visit in another room with the caregiver. This allows the caregiver to vent if necessary.
If you live far away or are busy with work and family and can’t help physically then send flowers, money or a gift card. Or arrange for a housekeeping service to come in once a week or twice a month.
Express appreciation. If you’re related to the person being cared for? Be grateful. And show it. Remember that old saying? But for the grace of God… Praise, if sincere, is nice to hear. It costs nothing and can make someone feel much better.
Be reliable. If you say you will help in some way, do so and do it at the time you stated. Caregivers are often weary, sometimes lonely and always overwhelmed, so be the bright, steady star in their lives—show up when you say you will. Bring what you said you would bring. And along with it? Your cheerful, smiling face.
Keep in touch. Caregivers often get left out of the family loop because they can’t get away to visit with relatives and friends, attend family events like birthdays and anniversaries and even casual get togethers. Phone them. Text them. Keep up with their facebook page. Let them know they are not alone in this.
If you’re internet savvy, offer to do on-line research for them. Maybe they need to find the palliative care/hospice alternatives in their community, or the parameters for these kinds of care. Maybe they’d like to know more about certain medications, or even caregiver associations or Red Cross equipment depots in their area.
Keep your own troubles away. Caregivers have enough to bear. If you’re visiting because you want a sympathetic ear, stay home. Find a counsellour or a different friend to confide in. Bring only your best face to the care home.