Podcasts & Media
Hello, I’m Alison, a certified Caregiver Consultant. This is where you can access caregiver stories as well as my insights on triumphs and trials of caregiving through my podcasts and other media. Have a look around and feel free to leave a comment if you have any questions or would like to add to the discussion.
The Dementia Puzzle
Aired March 31, 2021 • 47:03 minutes
The Dementia Puzzle is an idea that originates in this episode as a way to understand what is going on as you travel through caregiving for your loved one with dementia. This episode highlights the bond of a mother and daughter relationship, and speaks to the reality of the changes and losses caused by the slide of dementia. You will meet Sue Johnston as she recounts her experiences through the stages of caregiving and as she offers suggestions for the listener to consider for your caregiving journey.
And Then I Danced
• 57:03 minutes
For Toni Gitles her 14-year long experience as her mother’s caregiver provided opportunities to learn how to become a powerful advocate and how to apply her skills to make it the best journey possible. She did this while intentionally creating moments both Toni and her Mom would treasure. Toni learned the importance of many things such as listening to her intuition and being honest about her feelings. Toni provides helpful ideas for any caregiver to adopt and I suggest taking notes from this podcast to help in your own caregiving journeys. Toni’s website is Heart Light Enterprises.
"Doesn't Know Me"
Aired Feb 19th, 2021 • 41:07 minutes
This episode came about because of the original song “Doesn’t Know Me”, by Pat Thibodeau. Pat is a singer/songwriter and a friend of mine and I had reached out to ask her to write a jingle for the podcast. What she wrote surpassed my expectations with the creation of “Doesn’t Know Me” – a song about the losses of Alzheimer’s disease. Pat’s father had Alzheimer’s and the family of 10 siblings rallied around him and their mother following his diagnosis. I invite you to hear Pat’s account of the family’s journey together with her original song. If you’d like to listen to more of Pat Thibodeau’s music, check out her YouTube channel by searching her name.
The Musician's Daughter
• 46:33 minutes
The Musician’s Daughter, Episode 2 of Season 2 of Island Treasures Podcast highlighting caregiver stories, had many take-aways that are recapped in this presentation. Betsy Haddad was the podcast’s guest and she imparted advice as an adult-child caregiver, including the benefit of Advance Care Planning. Steps to start your own process of care planning in the event your future health condition requires supports are outlined here.
Four Hugs A Day
Aired Jan 15, 2021 • 58:11 minutes
Today Anne Sands takes us along on an emotional roller coaster. Her husband Stu has been diagnosed with dementia. Throughout her caregiving journey Anne has learned a lot and wants to help others by advocating that they get their loved one into the medical system as soon as possible so they are eligible for supports, respite and day programs, and placement in residential care. Stu was on the list for placement and when one of their two selected places had a bed available, she made the difficult decision to accept it. Her preference is to have Stu transferred closer to where she lives when a room comes available. When Stu first went into care, during the pandemic of Covid-19, he had to be isolated for the first 2 weeks. Since that time, Anne hasn’t been able to see his room; and visits are limited to once a week for 45 minutes. Communication with the care home’s psychiatrist has been very informative, validating and reassuring. The time that she can now spend with her husband is drastically reduced compared to the time they spent together as husband and wife prior to Stu’s placement. This has not been the only change, and Anne talks candidly about a new reality that has developed in their relationship. Her approach to the shocking news she received from the residential care home is positive, exhibiting loving care and concern for her husband’s needs and well-being. For herself, the days are long and she is looking forward to golfing season. She has many supports, yet she experiences significant deficits, stressing that caregiving is draining, aging, exhausting and emotional as can be. To top it all off, she feels hug deprived. She introduces the refreshing song and concept of “Four Hugs a Day”, by Charlotte Diamond. Anne ponders, what’s next for her and shares her caregiver tips whilst reminding all of us not to lose sight of our own lives.
Four Hugs a Day by Charlotte Diamond and Earl Robinson Copyright: Charlotte Diamond Music 1985 SOCAN As recorded on “10 Carrot Diamond” www.charlottediamond.com
Empowered By Positivity
Aired Dec 22, 2020 • 47:20 minutes
Meet Brenda Blais Nesbitt. She has been the caregiver of her daughter, Nikki, for over 27 years. Nikki is medically fragile with her severe disability, and Brenda is her voice and loving caregiver. Through her caregiving journey, Brenda has learned how to advocate effectively when the odds sometimes are stacked against them. She understands the stresses involved in navigating the healthcare system for a child with severe disability and offers information on how to prepare for the child transitioning to the adult world of healthcare.
Brenda recognizes how important it is to look after yourself and to set boundaries especially with supports coming into your home. Brenda is a Certified Caregiver Consultant, a Board Certified Patient Advocate; and has her own company Coaching for Caregivers Canada where she is a coach for others who may be facing a similar journey. Listen in to hear how Brenda imparts her experiences and shares her wisdom.
The Caregiving Coin
Aired Dec 8, 2020 • 43:56 minutes
The caregiving coin has two sides: one side represents sacrifice and the other – payoffs, gifts and benefits. Ten years ago Alice and Cori asked Alice’s father Doug if he’d like them to be his Long-Term Care Plan. He said yes and for the first five years lived with them during the winter months while maintaining his residence in Calgary the rest of the year. As his health needs increased, Alice and Cori took on caregiving full-time, with Doug relocating to the Island. Doug turned 102 this summer. This caregiving story is one of mutual respect and highlights what it takes to make such a heartwarming arrangement for caregiving and how it works for all the parties involved.
When Winning is Losing and Losing is Winning!
Aired Nov 25, 2020 • 42:09 minutes
Sustainable Caregiving CEO Theresa Wilbanks shares strategies she has identified through her caregiving journey for her father who is now 99 years old. Her insights include the importance of self-care, mindfulness and setting boundaries. When she faces a new caregiving challenge, she explains how she is driven to find a solution often through trial, error and tears; and from the solution come the strategies that she willingly shares with other caregivers. Theresa talks about “when winning is losing” and “when losing is winning” and provides the word picture of taking off the battle armor. She reminds us of the importance to keep the overall objective of caregiving in mind and to view each obstacle as an opportunity. Caregiving is hard, but she has information to help navigate the journey. Listen in to hear the fresh perspectives that Theresa shares… and learn about the “Jenga Tower”!
Life does not end with a diagnosis of Alzheimer's
Aired Nov 7, 2020 • 51:21 minutes
Dennis Dulniak joins me to talk about his experiences as a caregiver of his wife of 47 years, Nancy. He shares how full and rich their life was together before the diagnosis, and how they adapted to make it as full and rich as possible after the diagnosis. Dennis speaks candidly about the need for supports as a caregiver and the value of taking care of yourself in order to be an effective caregiver. Dennis provides a wealth of resources and information that he has pulled together during his journey.
Reflections on "Life does not end with a diagnosis of Alzheimer's"
What struck me as I was chatting with Dennis Dulniak during Island Treasures’ podcast, “Life Does not end with a diagnosis of Alzheimer’s” was his wisdom and insight. He explained things so clearly, that I found myself not just listening to what he was saying, but learning from what he was saying. He is an engaging speaker and it came as no surprise that he had been in the field of higher education for 40 years.
He and Nancy have been married for 47 years. Before Nancy’s diagnosis, they had an active social life, enjoying cruising, live theatre, musical and sporting events, until it became apparent that the noise and crowds were no longer pleasant for Nancy. Dennis was not willing to give up on their social life and found ways to adapt to a new normal. He was adamant that ‘Life would not end with a diagnosis of Alzheimer’s’.
When Nancy could no longer perform her highly detailed tasks at work it seemed a natural time for her to retire. It was after she retired that she was diagnosed with Mild Cognitive Impairment (MCI). They were shocked to find out that had she been diagnosed before retiring, she may have been eligible for long-term disability benefits. Instead of being upset about missing this opportunity for themselves, Dennis uses their experience to inform others to get tested before leaving their career. He stresses the importance of your friend or family member who may be experiencing memory loss or cognitive difficulties to have a thorough examination by their general practitioner first. Memory loss does not automatically mean a diagnosis of Alzheimer’s or dementia; but it is best to rule out other possible causes before intensive cognitive testing. Nancy participated in 8 medical trials for science research as well as possibly benefiting Nancy.
As the podcast continues, Dennis educates me further:
– On the ApoE-4
– Brain Fitness Progam
– On Dementia-friendly dining. https://www.centralfloridadementia-friendlydining.com/
– On clear face masks particularly during this time of Covid-19 for folks with dementia or Alzheimer’s (email email@example.com)
Dennis recognized the importance for self-care, which for him comes through his participation in service clubs, Support Groups, (both attending and facilitating) engaging with a certified caregiving consultant and accessing resources including the two books he mentioned: 1) UnMasking Alzheimer’s: the memories behind the masks – by Dr. Cynthia Huling Hummel, and 2) Barry Petersen’s book Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s. Dennis described how he anguished over the decision to have Nancy enter care, and to this day has difficulty being apart, especially as Nancy has now tested positive for Covid-19. Dennis continues to be there for her, lovingly, and his wisdom and insight is there for those of us who want to learn from him. Remember, being informed leads to confidence which leads to being an effective advocate for your loved one. I would like to thank Dennis for sharing his insights and for both his and Nancy’s selfless approach to helping others from what they have experienced and their lessons learned.
A love story
Aired Oct 23, 2020 • 41:28 minutes
Listen to Roy’s journey. A journey of love and commitment that continued through health issues for his wife that changed their circumstances but not their love and committed relationship to one another. Roy shares his experiences through the trying times of Covid-19 as a caregiver.
How Social Workers Help Caregivers
Written by Alison van Schie and published on Caregiving.com on March 10, 2021
I am retired from social work, but during my career I had the opportunity and privilege to provide a variety of services within the profession. I rounded off my social work career in a residential care home which led to private practice. This was my niche. I quickly realized there was a huge need to provide services and support to caregivers. I remember once when a caregiver looked directly into my eyes with a look of loss, fear and desperation. It was at that moment I realized my calling was to step up and step into the world of supporting caregivers.
For a long time, people have associated social work with child protection, welfare (financial assistance), and adoption services, but these professionals do so much more. In fact, there are many social workers who work specifically with caregiving families. They may not be the first professional you would think to seek out throughout your caregiving journey and, yet, they can offer so much support. Overall, social workers are great listeners who can help you find and access the resources you need to care for a loved one.
Social Worker Definition
The National Association of Social Workers (NASW) defines social work as a practice that, “consists of the professional application of social work values, principles, and techniques to one or more of the following ends: Helping people obtain tangible services; counseling and psychotherapy with individuals, families, and groups; helping communities or groups provide or improve social and health services; and participating in legislative processes.”
The simplest definition of a social worker–how I used to describe myself–is professional gap-filler. They are resourceful people who help clients find what they need to reach their maximum potential at every stage of life. They do this by using their knowledge and training, all while upholding the Social Workers Code of Ethics and Standards of Practice. Basically, when a client–an individual, family, or community–is struggling or feeling lost, the social worker’s role is to shine a light on the client’s expertise, innate strength, and resources so they can progress toward their goals and reach their maximum potential.
Social Worker Duties
Social workers are big-picture thinkers who perform psychosocial assessments to determine what systems are affecting a client and how to best apply services based on their identified strengths and specific needs to help them reach their goals.
Role of the social worker in elderly care.
Geriatric social workers focus on elderly clients and their families to ensure they receive the mental, emotional, social, and familial supports they need while connecting them to resources for supplementary support. (See? Gap-fillers.) Geriatric social workers adjust their services to a senior’s ever-changing circumstances. They can assist with completing documents, and their knowledge of the aging process enables them to detect and address mental health concerns such as anxiety or depression.
Where to find geriatric social workers.
If you are in need of a geriatric social worker for your caregiving journey, you may find them in hospitals, community health clinics, hospice settings, long-term care homes, outpatient services, adult protection services, faith based communities, private practices, rehabilitation centers, referral centers, and government agencies.
What to expect when meeting with a geriatric social worker.
Once you meet with a geriatric social worker, they will perform a comprehensive psychosocial assessment to determine your loved one’s mental, emotional, and social needs and any medical conditions relating to their wellbeing. They will explore: Past and present mental, emotional and medical health; behavioral challenges the senior may have exhibited or is experiencing; and family background and dynamics including education, occupation, social, and financial factors. All this information is obtained while respecting the fragility of life situations and meeting folks where they are at.
I maintain that those receiving social work services are the experts in their own lives and this expert status should never be minimized. By obtaining a total picture through a psychosocial assessment, the social worker can help the senior, family, and multidisciplinary team design the best care plan possible. Every life is valuable and deserving of dignity and respect, and every voice needs to be heard. This is easy to say from the keys of my laptop, yet the reality of diminished cognitive abilities, failing health, family dynamics, dysfunction, injustices, poverty, substance abuse, mental illness, racial inequality, gender biases, LGBTQ experiences, and associated stigma are never far away. These are the places where you will see social workers exercising their skills as: Advocates, activists, assessors, community-builders, life-enrichers, de-escalators of volatile situations, resource-allocators, educators, facilitators, counsellors, and more.
How Social Workers Support Caregivers
As a caregiver, you may be in a place where you feel stuck and need resources. You may even be feeling burned out. Social workers can assist. They will listen to you and help you identify what it is you need even if you are struggling to put things into words.
Whether you are caregiving at home or your loved one is in residential care, social workers can:
- Access the financial resources you and your loved one may be eligible for such as Medicaid, pensions, insurance, Veteran’s Affairs, or governmental assistance programs.
- Identify services that enhance your experience as well as your loved one’s experience, such as respite care, day programs, transportation catering to special needs, and affordable medical equipment, such as hearing aids or mobility aids.
- Help your family talk about difficult topics such as end of life, funeral planning, and advance care planning and make recommendations on accessing information on advance directives, wills, representation agreements, power of attorney, etc. They will help you get a clear picture of what your loved one’s wishes are along with your own.
- Address family dynamics. Not all families function optimally, in fact dysfunction may be the norm within some family systems. A social worker can provide non-judgmental attention to each and every family member while keeping their radar finely tuned to what is going on within the family. When the social worker’s radar detects a problem, they can identify the action that needs to be taken to address and process the problem for their client’s safety and wellbeing.
- Work with the guardian and trustee for those who have had power imbalances that required intervention to safeguard the elder and their assets.
- Provide bereavement or grief counseling when your loved one has passed away and beforehand as you experience the losses that come with aging and dementia or chronic illnesses. They help families talk through the emotional and practical issues they encounter.
- Liaise and collaborate with the medical team as treatment plans are developed and updated (physicians, nurses, psychologists, occupational therapists, case managers, and other healthcare staff) and manage a discharge plan from hospital if need be. The social worker can relay a family’s wishes to the staff in long-term care, i.e. if the family feels their loved one could benefit from a special type of intervention and therapy or has a preference that the staff should know.
- Set-up care conferences, facilitate family meetings, and assist when the family is in a different province or State.
- Be the approachable link between the care community, the resident, and their family.
- Locate support groups that may help your specific situation. You will find the social worker is often a facilitator of support groups.
- Provide information and education on the disease process and what to expect.
- Provide comfort and help you feel less alone.
- Find the right channel to help you voice complaints when necessary.
- Manage a crisis and help fortify existing coping skills.
- Provide clarity for future planning.
Social Work Month 2021 Theme
March is Social Work Month, and the theme for 2021 is “Social Workers are Essential.” Social workers do a lot of work behind-the-scenes. As a result, their impact can get overlooked, but they are a powerful force guided by a Code of Ethics and Standards of Practice. When you start collaborating with a social worker, you will see just how essential they are. If you know a social worker, Social Work Month is a perfect time to tell them how much you appreciate them. Saying thanks by sending them a card or a note or giving back to your community, like donating to a food bank, are both actions you can take to let them know how much you value their work.
Tips for Preventing Caregiver Burnout and Managing Stress
Written by Alison van Schie and published in Caregiving.com on Nov 22, 2020.
When I think of burnout I think of overwhelming stress that builds to the point of crippling exhaustion. I think of the pressure cooker analogy where steam continues to build and, if the venting valve is blocked, the cooker blows rendering it useless with a disastrous mess to clean. When a pressure cooker operates effectively, the pressure valve allows steam to be released regularly.
Caring for your loved one involves so much more than providing care; it includes your worries, anxieties, losses, anger, and guilt. It also includes your time, your energy, and often your finances. Caregiving needs can vary from support with daily activities and chores to more complicated levels of physical support and supervision (as is the case for dementia caregivers who are tasked with monitoring all activities for safety and to prevent wandering). All of these care scenarios can take their toll on you, dear caregiver.
I would not wish the pressure cooker situation on any family caregiver. Fortunately, it is entirely possible to prevent caregiver burnout and stress. By looking at each unique caregiving situation, we can identify where “steam” can be vented.
I recently asked a group of caregivers for their tips on preventing burnout. Perhaps one or more of their self-care strategies could apply to your life:
- Be honest about your feelings.
- Share your feelings with someone you trust.
- Ask for help.
- Get out of the house and do something else; get away.
- Participate in a fitness class.
- Give yourself permission to take a break. This could mean not going to visit your loved one in care, or finding someone to stay with your loved one while you go out.
- Have a glass of wine. (But please drink responsibly.)
- Follow your pre-COVID routine as closely as possible.
- Take care of your health first (i.e. eat a healthy diet, get enough sleep, breathe deeply, monitor your own health, listen to your doctor, etc.).
- Let your loved one do the things he/she can still do for him/herself. Even if it takes longer and may not be done to your standards, it has a two-fold benefit: to maintain their skills and to make it so there’s one less thing for you to do.
- Pray or meditate.
- Listen to music.
- Share tasks with others when possible.
- Stay involved with things that interest you even if it has to be scaled back. For example, if you love to travel the best you can do now is to take a ‘vacation in your mind’ by looking through travel magazines.
- Join a support group either online or in person.
- Find respite care either formal or informal. Time away can help you better manage your stress and be a better caregiver.
- Find caregiver resources in your community, and access the ones that relate to your situation.
- Let go of housework. Instead, use any time you would spend on household chores doing something that brings you pleasure (unless vacuuming or dusting brings you pleasure).
- Read a book, make a phone call, take a bath, tinker in the garage, do whatever it is you like to do. And finally;
- Focus on the good moments.
Are you providing care alone? Or are you so immersed in your caregiving that you are unable to modulate your worries? If you answered yes, it’s time to ask for help. It can help to get someone else’s perspective on your stress level. And it’s more than okay to talk to someone about your innermost worries and feelings.
Asking for Help to Relieve Caregiver Stress
Written by Alison van Schie and published in Caregiving.com on Oct 27, 2020.
“If there’s something I can do to help, don’t be afraid to ask.”
This is a courtesy friends and family often extend to you as a caregiver. You thank them, but then how often do you follow up? What is it that’s holding you back from accepting their offer? Perhaps it’s because you think it’s just a nicety or aren’t convinced they mean it. Maybe you just have a hard time asking for help. Either way, ignoring the various signs of needing help can put you at an increased risk of injury and stress.
I understand the tendency to avoid asking for help. When I recently tried to grab an item on the top shelf at the store, my fingers barely touched it. Rather than heed the sign that recommended shoppers contact store staff for assistance getting items from the top shelf, I instead stood on my tiptoes straining to reach the item with my right hand. In the process, I pulled something in my shoulder which caused me discomfort for several days. I got the item down on my own, but at what physical cost? Why didn’t I do as the sign suggested and contact a salesperson to assist me? They have ladders and stools (and insurance in the event that an employee falls or causes themselves injury). Reflecting on this experience, I came up with several reasons why I found it hard to ask for help including:
- I didn’t want to wait;
- I didn’t want to inconvenience anyone;
- I didn’t want to look weak or incapable;
- I didn’t want to feel inadequate or needy;
- I wanted to be in control and do it myself.
Do these introspections sound familiar?
What I realized is I didn’t think beyond the immediate situation. It never occurred to me that my action would have painful consequences. My example can be applied to you, dear caregiver. When life situations change and you step into this role, either gradually or suddenly, you find yourself facing many new demands on your day. How do you fit all these new and possibly unfamiliar tasks into your already busy day? Responsibilities seem to double, and yet the hours in the day remain the same and your energy reserve hasn’t changed. It only seems natural to add these tasks to your to-do list as you want to be there for your loved one–fitting their activities for daily living into your life–but at what cost? You need, and deserve, help.
How to Ask for Help
Remember that question from the beginning of this post? Accept their offer! If it turns out your friends and family weren’t genuine, you will quickly find out. Whether it’s picking up groceries or medications, mowing the lawn, shoveling the walk, or doing some cleaning or laundry people are generally sincere about their desire to help. These may seem like simple tasks, but by asking for help you will take an important first step to reducing your stress and saving yourself from injury or burnout which, in turn, has positive effects on your loved one.
It may seem foreign to ask for assistance, but once you start you will become more comfortable making requests and others will know that you are open to receiving their help. I challenge you to give it a try by asking someone to bring you a meal today and see what happens!
As a caregiver you likely don’t have time to reflect on your reasons for not asking for help, but you need to take the time to start asking for help. Self-reflection can come later. Your commitment to care for your loved one doesn’t mean you have to do it all yourself. It’s quite likely that your loved one may appreciate someone else’s cooking for a change or companionship for an hour or two and you will feel better knowing you’re reducing your risk of injury or burnout.
Even though asking for help may seem hard, there are definite and often immediate benefits for you. Enjoy that meal, and remember that help is out there. You just have to ask.