REACH OUT FOR SUPPORT
– keep asking questions!
Upon hearing a diagnosis of dementia, a caregiver initially
1. wants information
2. wants to know where to find education
3. what is available as support.
Discovering where to find information will help relieve the stress and anxiety of caring for a loved one.
To ‘Go’ or ‘Not Go’ to the Emergency Room?
NOTE: If your inquiry is of an emergency nature or if you need to respond to an emergency:
1. Medical emergency, Call 911 immediately, especially for symptoms that require immediate medical attention.
2. Non-medical emergency, call Telehealth Ontario 24 hours a day, seven days a week and speak to a Registered Nurse, toll-free at 1-866-797-0000.
3. Call 1-877-825-9011C.O.A.S.T. – Crisis Outreach and Support Team, team of mental health specialists in Halton Region, Ontario.
Become familiar with these three groups and how they differ.
Otherwise, for less serious issues, call your GP, your health care provider, your geriatrician, your memory clinic, your Alzheimer’s organization, as you feel appropriate.
Get help and stay safe in a crisis
Crisis Outreach and Support Team (COAST).
COAST is not an emergency response unit.
If your situation is a life-threatening emergency, call 911.
If you are in crisis, they can help – 24 hours a day, 7 days a week.
Their crisis professionals will speak to you by phone to provide crisis support and help you make a plan to stay safe. They may also provide ongoing telephone support and connect you to others who can help.
COAST is provided in partnership with the Halton Regional Police Service. Call us anytime at 1-877-825-9011.
This blogsite tells stories of experiences and refers you to resources where you can search to discover answers; we do not offer medical advice.
We do suggest you connect with your primary health care provider.
We urge caregivers to take classes from the Alzheimer’s Society or similar learning organization.
Below are numerous sites where education through various methods is available, depending on the specific type required.
NEW! At Home Alzheimer Society – micro site! Easy access to 4 basic topics…Education-Activities, Fitness and Support. Register…anyone, anywhere can use. Great for COVID times!
See: Alzheimer’s RSS feeds, current research and writing about Alzheimer’s disease you can download.
See: Alzheimer Society Connections. Caregivers must make the initial connections… who knows better that you need help!
See: Quintessential Caregiver Support and Caregiver Social-support pages.
LIBRARIES as resource are not listed here, but always check with librarians at libraries near you.
Check the source address to know that their location, rules, laws and considerations will apply to your needs! 🥰
Each caregiver will want to seek what is appropriate and timely for their situation. BECOME AWARE OF SUGGESTIONS of available and important resources so when you need information, you can find it.
NOTHING quite takes the place of talking about our questions IN PERSON, but we know that is not always possible.
1-) First choice: ‘face to face’ conversation with someone you can reach out and touch in person, or by phone, or by video conferencing.
Local organizations, medical professionals, related service groups, even messaging between real people, can guide us to help. But, remember, social friends, local or online, normally are not experts, but their experiences might lead us to one.
2-) Next: online researching as a smart way to find validation of what you have heard, or to find new information in the field you are exploring.
3-) Consider: Libraries, public or in medical facilities. Professional guidance beyond your personal health provider.
4-) Include: Put ‘talking to myself’ on this list. Try to organize and clarify thoughts and questions before going ‘live’ to validate or find answers.
EDUCATION & RESOURCES
A. FREE ON-LINE EDUCATION
Check each organization’s website for current programs.
ALZHEIMER SOCIETY offering education through ZOOM sessions.
Schedule shown at link. See other educational options for various areas of knowledge. Halton office PHONE: 289-837-2310
Due to Covid-19, the Alzheimer Society is suspending in-person education services to the public until further notice. If you are concerned about your symptoms or the health of the person you are caring for, please call your Doctor, Telehealth (1-866-797-0000) or your local Public Health office.
LIFEMARK Senior Wellness. Receive education and care from the comfort of your own home. Lifemark Seniors Wellness in partnership with Acclaim Health and Mississauga Halton Local Health Integration Network is offering FREE exercise classes, falls prevention and osteoporosis programs for seniors, older adults with disabilities and those that suffer from chronic illness. PHONE: 1-877-696-1620
B. RESOURCE LIST TO HELP – START YOUR PERSONAL LIST:
(See also COVID-19 page for additional resources.)
In all cases, if you are in crisis and need immediate assistance, please call 911.
- Alzheimer’s Association (US) – 24/7 Helpline: 1.800.272.3900
- Alzheimer’s Society Canada (Canada) – 24/7 Helpline: 1.800.616.8816
- The Association for Frontotemporal Degeneration (US) – 24/7 Helpline: 1.800.507.7222
- Dementia with Lewy bodies – 24/7 Helpline: 1.800.616.8816
- OCO Ontario Caregiver HELPLINE 1-833-416-2273 (CARE) offers services in both English and French. A live chat is available between 7:00 AM and 9:00 PM EST.
ACCLAIM HEALTH – Ontario Canada Community Health and Home Care Provider
Our full spectrum of programs support physical and mental well-being through independent living, reduced social isolation, innovative dementia care, end of life care and bereavement support.
Oakville, Ontario, Canada 905-827-8800
ACCLAIM HEALTH Caregiver Education Series – Tools, information and support
ALZHEIMER SOCIETY Brant, Haldimand, Norfolk, Hamilton, Halton (Ontario, Canada) (See brochures and publications.)
“People with dementia are at the centre of everything we do. The Alzheimer Society leverages its own and community resources to deliver health promotion, advocacy and support services to people with dementia, those at greatest risk of developing dementia and their carers.” A great place to get started, with proper guidance from the outset.
Ontario, Canada Offices:
Burlington (& for Oakville) 289-837-2310
ALZHEIMER SOCIETY ONTARIO – their site will reference other regional branches. See FULL LIST of downloadable brochures and publications
ALZHEIMER SOCIETY CANADA – See FULL LIST of downloadable brochures and publications
ALZHEIMER SOCIETY CANADA – Caregiver help and support information
ONTARIO LOCAL HEALTH INTEGRATION NETWORK (LHIN):
The ONTARIO LHIN office that serves your region is listed with a link on their site. “Local Health Integration Networks (LHINs) are crown agencies established by the Government of Ontario to plan, coordinate, integrate and fund health services at a local level including: • Hospitals. • Community Health Centres. • Long-term Care Homes. • Mental health and addiction agencies…”.
THE ONTARIO CAREGIVER ORGANIZATION: Keeping caregivers updated on what’s new, strategic planning, the “Ontario Caregiver Organization (OCO) exists to support Ontario’s 3.3 million caregivers; ordinary people who provide physical and emotional support to a family member, partner, friend or neighbour. We support caregivers by being their one point of access to information, so they have what they need to be successful in their role.” OCO is an independent non-profit, created in 2018, that is funded by the Ontario Ministry of Health.
The OCO Ontario Caregiver HELPLINE 1-833-416-2273 (CARE) offers services in both English and French. There is also a live chat available between 7:00 AM and 9:00 PM EST.
C. SITES TO BROWSE:
ALZAUTHORS.COM – Whether you are a caregiver, family member or living with dementia , including Alzheimer’s disease, you’ll find many different valuable resources here: – memoirs, caregiver guides, novels, children’s books, and blogs –plus the encouraging real-life stories behind these works.
💖 I am honoured to have been invited to be a member of AlzAuthors, to be among authors who write of Alzheimer’s disease, each from a unique perspective of caring for a partner, a spouse, parent(s), or grandparent(s), including authors living with dementia diseases—each telling their story.
It is a ‘community’ of caregiver-authors who “lift the silence and stigma of Alzheimer’s and other dementias” as they promote and share books and blogs that open windows to reveal caregiving in the world of Alzheimer’s. 💖🍦🍪 Visit their site to find out more.
ALZHEIMER ASSOCIATION in USA – website relates they “are the leading voluntary health organization in Alzheimer’s care, support and research.” A site to include in your serach, regardless of your residence area. Main office is in Chicago, Ill.
ALZHEIMER’S READING ROOM – YouTube link The Alzheimer’s Reading Room is the number one source of information in Alzheimer’s care, dementia care, and for care of dementia patients. The goal of the Alzheimer’s Reading Room is to Educate and Empower Alzheimer’s caregivers, their families, and the entire Alzheimer’s and dementia community worldwide.
ALZHEIMER’S RESEARCH UK BLOG – UK’s leading research charity aiming to defeat dementia. We power world class studies that give us the best chance of beating dementia sooner. Our pioneering work focuses on prevention, treatment and cure. Frequency – about 1 post per week
ALZHEIMER SOCIETY CANADA – Their own extensive list of articles, brochures and publications to browse and read.
ALZHEIMER’S UNIVERSE BLOG This website was created to offer the most up-to-date Alzheimer’s disease (AD) information to educate family members and caregivers, and provide help for people with mild memory loss due to AD. Learn about AD prevention and treatment through lessons created by a team of experts. Frequency – about 2 posts per month
ANXIETY CANADA – Find resources related to anxiety. Anxiety Canada™ is a leader in developing free online, self-help, and evidence-based resources on anxiety. We are the developers of the award-winning free MindShift™ CBT app for iOS and Android devices, which helps Canadians manage anxiety using scientifically proven strategies.
We also serve Canadians by developing services and programs they can trust, including our online directory (Finding Help), and our online courses (My Anxiety Plans).
CAREGIVING ROOM – We care for you as you care for family members through our blogs and daily chats. We support you before, during and after caregiving.
Frequency 30 posts / year Since – Dec 2008
THE CAREGIVER SPACE – Created by caregivers, for caregivers. This is a safe space for people from around the world to talk about everything caregiving. From the good to the bad and everything in-between. A place for all caregivers.
CAREGIVER WARRIOR – The Caregiver Warrior community is a place for caregivers to embrace their journey with grace and empowerment. The Caregiver Warrior blog offers advice, helpful tips, and strategies in weekly blog posts based on the experience, strength, and hope I found while surviving my caregiving journey. Frequency 1 post / week Since – May 2014
COPD – the Lung Association in Canada – Get help with COPD means Chronic Obstructive Pulmonary Disease. It is a term that covers two types of chronic (long-term) diseases where the airways (breathingtubes) in the lungs become swollen and partly
blocked. COPD gets worse over time. It cannot be cured, but it can be treated and managed.
DAILY CARING – Caring for seniors doesn’t have to be this hard. Make it easier with free, practical tips that solve everyday challenges. We help you Discover, Know, and Do.
Frequency 3 posts / week Since – May 2014
DEMENTIA AUSTRALIA NEWS – According to their website, Dementia Australia News is Australia’s leading dementia learning service. Read the latest news and research articles for people living with dementia, carers, health professionals, media contacts and general public., tips and education. Look for link on their site to download their free copyrighted Dementia Guide.
While on their site, be sure to visit their Help Sheets page, with many specific alphabetically listed topics to download…perhaps find help you are needing at the moment.
HAPPY HEALTHY CAREGIVER – This site was created by Elizabeth. HappyHealthyCaregiver.com is for family caregivers who feel isolated and overwhelmed by all their responsibilities and want help integrating caregiving with their life.The Happy Healthy Caregiver Community contains all the tools and resources a caregiver needs to avoid burnout.Our mission is to help caregivers all over the world become happier and healthier. Frequency 1 post / week Since – Feb 2015
Check out Home Instead Home Care Grant – ask if you can apply.
From personal care services to hospice care support and many care needs in between, our local Home Instead Senior Care offices offer a broad range of services that can be tailored to meet your family’s unique needs and preferences. They offers this:
Join a support group and utilize available resources. You can find one near you by visiting these sites for US and Canadian organizations:
If you have questions about an article or item, caregiver related or loved one related, contact the organization or let’s talk!
Or ask in the comments below the item. They will go public only if appropriate.
We will attempt to locate a resource where you can find answers. As a caregiver, I appreciate that you took the step to reach out for help. Be sure to check our resources page and the RSS FEEDS reading links. We will do our best to head you in a helpful direction. We refer you to resources to find answers.
Accepting the Gift of Caregiving books/series…
In what ways can you help caregivers with support?
1. A library online Request a Book form is the perfect way to help ask your library to add “Is There Any Ice Cream?” and “Did You Hide the Cookies?” to their collections so other caregivers can find encouragement from these stories. Thank you.
2. Give a copy of the series Accepting the Gift of Caregiving to someone who will find comfort in knowing there are others walking the path with them.
3. Give a copy of the series to an Alzheimer Society library, or to an Alzheimer-related organization, church library, or senior home library, for others to be able to read when they are looking for confirmation that they are not alone.
4. Visit www.caregiver-books to learn about books “Is There Any Ice Cream?” and “Did You Hide the Ice Cream?” to learn more about the books, why I wrote them, and how they might be helpful for a relatively new or a floundering caregiver who is feeling alone on the journey. Family members have told me that reading these books helped them become better support because they gained understanding of what the family caregiver was experiencing.
In paperback, hardcover and ebook
Available online: from Amazon and other booksellers
Order locally through:
A Different Drummer Books in Burlington, Ontario
Barnes & Noble in US
Chapters/Indigo in Canada
Maria’s Bookshop in Durango, Colorado,
The Bookworm in Omaha, Nebraska,
or other local booksellers.
“Education & Resource Links” Copyright © 2020 Judith Allen Shone
Photo of man with coffee by Andrea Piacquadio on Pexels.com