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Tag Archive for: caregiving

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Brain Injury: Caring for the Caregiver

Julie Entwistle, MBA, BHSc (OT), BSc (Health / Gerontology)

We cannot (or should not) discuss brain injury awareness without spending time recognizing the family and friends that take on the caregiving role after someone they love has an injury of this nature. A few years ago I co-facilitated a workshop for caregivers of brain injury survivors. What a great event! Not only was this well attended, but the speakers provided an amazing amount of education, skills and insight into how to both cope, manage, and achieve success as the care provider of someone with a brain injury. I wanted to take a moment to highlight my personal takeaways from this event:

Everyone has a story. As someone who lost a brother-in-law to the effects of a catastrophic brain injury, I understand how telling our story – be it about loss, change, remorse, guilt, fear, or triumph can bring people together and has immense therapeutic benefit. Caregivers benefit from collaborating, talking, sharing, laughing, crying and growing together. Our health system needs to create these opportunities, or caregivers need to find ways to make this happen.

Grieve. In my undergrad, I studied grief and loss and even worked in hospice. What I realized at our workshop, however, is that the permanence of death allows people to grieve their loss, achieve acceptance, and eventually move on. When dealing with survival from a traumatic event, however, grief is not always experienced as our loved one is still present, albeit different. Yet, our speakers emphasized the importance of grieving: the life that once was, the life that may never be, and the changes and adjustments that have occurred. Caregivers need to let this grief process happen, or should seek support from a trained professional to experience this important emotion.

Find a new normal. Clients, caregivers, and health care professionals need to always consider that the old “normal” may never return. In that case, we all need to collaboratively look ahead to creating a “new normal”. Different does not always have to be bad, and it requires an open and optimistic mind to think that way. For OT’s that means taking the abilities of the individual, considering their resources, and helping them to create that new life of function, fulfillment, meaning, and productivity.

Put on your own oxygen mask first. We spoke extensively about the importance of caregivers taking the time to attend to their own personal needs, to have positive coping mechanisms and sources of support. Then, at break I was speaking with a man whose wife suffered a brain injury. He talked about the “airplane analogy” and how this applies to caregivers – put on your own mask before helping another. I smiled and told him that I wrote a blog on that exact topic, with that exact title last year. As he found that analogy practical and helpful, I thought I would share the contents of that previous blog here, to highlight this important third point:

Posted September 25, 2013

If you have ever travelled by air you are familiar with the drill. Instructions on how to buckle and unbuckle your seatbelt, where the life vest is located, emergency exits, and “should cabin pressure change, an oxygen mask will fall from the overhead compartment…passengers should always put on his or her own mask before assisting children, or a disabled passenger”.

I read a mommy blog the other day that called this the “airplane example” and the writer related this to how moms should approach motherhood. Ultimately the message is this: as a mom, put your own health first because you are useless to your kids and spouse if you ignore your own needs. Really, you can’t help a child with an emergency escape from a crashing plane if you pass out helping them with their mask.

While I do agree that mothers (and fathers for that matter) need to consider their own needs in providing for the family, this is also true of people that provide care to a disabled person. My experience is that often caregivers do not really “elect” that role. They are not trained to be a caregiver, and really just try to do their best with the skills and resources they possess. However, where many fall short is maintaining their own health and wellbeing in dedicating their physical and emotional time to another person: a person with challenging and multiple needs. The job of a caregiver is often 24 hours, and resources don’t often permit, nor does the government provide, sufficient relief from this responsibility. Caregivers are often sleep-deprived, suffer from muscle and joint pain in fulfilling their role, and can become isolated and depressed due to the changes they have made to take on these new responsibilities. Sound familiar? This very closely mimics motherhood (especially for new moms).

The answer? Put on your own oxygen mask first. What can you do to breathe easier? What helps you to feel clear-headed, energetic and optimistic? What gives you that ability to stay positive, appreciate and take on your responsibilities with some enthusiasm? The answers are often different for all of us. In the end, figuring out how to wear your oxygen mask first requires you to be honest about your abilities and skills, to utilize the resources available, and to ultimately ask for help if this is needed.

And for us health care professionals? We need to be very careful of the responsibilities we place on caregivers. This is especially true in the medical community where we repeatedly discharge people into the care of family, without family really knowing what the responsibilities will entail. As health care providers our responsibility is always to the client, yet we need to take that extra time to check in with the caregiver, talk about how they are coping and managing and if needed, offer them an oxygen mask.

I hope the caregivers that attended our workshop felt that by spending a day focusing on themselves, expanding their knowledge, and learning the keys to success, that this was one step towards them being able to put their own mask on first. This was highlighted at the end of the day when the caregiver of a survivor, whose loved one was injured 13 years ago gave this advice: “If I could do it again, my priorities would be self, family, then my loved one with a brain injury”. What a great lesson for me to take forward in my practice.

For more posts related to brain injury please visit our Brain Health Archive.

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Caregiving in Canada

According to recent research over eight million Canadians act as a caregiver to a family member or friend, and these numbers are expected to grow with time.  The following article care of the Hamilton Spectator provides an overview of the research compiled in the Canadian Longitudinal Study on Aging (CLSA) and discusses the rising demand for home care providers.

Hamilton Spectator:  Report highlights growing burden of care for seniors

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Self-Care for Caregivers: Put Yourself First

Caregiving is a job.  A job most people don’t apply for, aren’t trained for, do not get paid for, and receive little to no time off from.  When a loved one is injured or ill often the job of full-time caregiver falls on the spouse, adult children, or other family and friends.  Though many are happy to give as much love and support as possible in their loved one’s time of need, the job of caregiver can be isolating, exhausting and can often result in caregiver burnout and additional health-related concerns for the caregiver themselves.

Remember that you cannot take care of someone else if you are not taking care of yourself.  You may risk becoming useless to your loved ones if you do not first take care of yourself.

The following infographic provides more information about the caregiving role and solutions to help reduce the mental and physical health-related issues that often stem from the job of caregiver.

 

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To learn more about how to care for yourself or a loved one as a caregiver take a look at our previous post, “Put on Your Own Oxygen Mask First.”

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The A to Z of OT: C is For… Caregiver Support

Caregivers do not really “elect” the role. Most are not trained to be a caregiver, and really just try to do their best with the skills and resources they possess. However, where many fall short is maintaining their own health and well-being while dedicating their physical and emotional time to another person.  Occupational Therapists recognize the risk of caregiver burnout and work to encourage caregivers to take time to care for themselves.  Learn more about some of the strategies Occupational Therapists use to help care for the caregiver in our post, An OT Knows How to Care for the Caregiver.

 

October is Occupational Therapy Month and to celebrate we will be sharing a new series called the A to Z of OT.  In our attempts to further educate the public about what Occupational Therapists do we will be highlighting twenty-six of the awesome ways OTs provide Solutions for Living.  

We encourage you to follow along with The A to Z of OT and to add to the discussion by highlighting other awesome things OTs help with for each corresponding letter!

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How to Handle Difficult Conversations as a Caregiver

Julie Entwistle, MBA, BHSc (OT), BSc (Health / Gerontology)

My grandmother always used to say “once an adult, twice a child”.  She was referring to the fact that we start life dependent, and through the aging process, tend to end our life that way as well.

So, what happens when the grown-up “child” needs to become the caregiving adult in a relationship with an aging parent?  It leads to many tough conversations about some pretty big topics.  Recognizing that some conversations are not only difficult, but could cause relationship-changing outcomes, we created this video to give some pointers for handling the big ticket items adult children might encounter with their aging parents.

 

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Caring for the Brain Injury Caregiver

Julie Entwistle, MBA, BHSc (OT), BSc (Health / Gerontology)

We cannot (or should not) discuss brain injury awareness without spending time recognizing the family and friends that take on the caregiving role after someone they love has an injury of this nature. Two years ago I co-facilitated a workshop for caregivers of brain injury survivors. What a great event! Not only was this well attended, but the speakers provided an amazing amount of education, skills and insight into how to both cope, manage, and achieve success as the care provider of someone with a brain injury. I wanted to take a moment to highlight my personal takeaways from this event:

Everyone has a story. As someone who lost a brother-in-law to the effects of a catastrophic brain injury, I understand how telling our story – be it about loss, change, remorse, guilt, fear, or triumph can bring people together and has immense therapeutic benefit. Caregivers benefit from collaborating, talking, sharing, laughing, crying and growing together. Our health system needs to create these opportunities, or caregivers need to find ways to make this happen.

Grieve. In my undergrad I studied grief and loss and even worked in hospice. What I realized at our workshop, however, is that the permanence of death allows people to grieve their loss, achieve acceptance, and eventually move on. When dealing with survival from a traumatic event, however, grief is not always experienced as our loved one is still present, albeit different. Yet, our speakers emphasized the importance of grieving: the life that once was, the life that may never be, and the changes and adjustments that have occurred. Caregivers need to let this grief process happen, or should seek support from a trained professional to experience this important emotion.

Find a new normal. Clients, caregivers, and health care professionals need to always consider that the old “normal” may never return. In that case, we all need to collaboratively look ahead to creating a “new normal”. Different does not always have to be bad, and it requires an open and optimistic mind to think that way. For OT’s that means taking the abilities of the individual, considering their resources, and helping them to create that new life of function, fulfillment, meaning and productivity.

Put on your own oxygen mask first. We spoke extensively about the importance of caregivers taking the time to attend to their own personal needs, to have positive coping mechanisms and sources of support. Then, at break I was speaking with a man whose wife suffered a brain injury. He talked about the “airplane analogy” and how this applies to caregivers – put on your own mask before helping another. I smiled and told him that I wrote a blog on that exact topic, with that exact title last year. As he found that analogy practical and helpful, I thought I would share the contents of that previous blog here, to highlight this important third point:

Posted September 25, 2013

If you have ever travelled by air you are familiar with the drill. Instructions on how to buckle and unbuckle your seatbelt, where the life vest is located, emergency exits, and “should cabin pressure change, an oxygen mask will fall from the overhead compartment…passengers should always put on his or her own mask before assisting children, or a disabled passenger”.

I read a mommy blog the other day that called this the “airplane example” and the writer related this to how moms should approach motherhood. Ultimately the message is this: as a mom, put your own health first because you are useless to your kids and spouse if you ignore your own needs. Really, you can’t help a child with an emergency escape from a crashing plane if you pass out helping them with their mask.

While I do agree that mothers (and fathers for that matter) need to consider their own needs in providing for the family, this is also true of people that provide care to a disabled person. My experience is that often caregivers do not really “elect” that role. They are not trained to be a caregiver, and really just try to do their best with the skills and resources they possess. However, where many fall short is maintaining their own health and wellbeing in dedicating their physical and emotional time to another person: a person with challenging and multiple needs. The job of a caregiver is often 24 hours, and resources don’t often permit, nor does the government provide, sufficient relief from this responsibility. Caregivers are often sleep deprived, suffer from muscle and joint pain in fulfilling their role, and can become isolated and depressed due to the changes they have made to take on these new responsibilities. Sound familiar? This very closely mimics motherhood (especially for new moms).

The answer? Put on your own oxygen mask first. What can you do to breathe easier? What helps you to feel clear-headed, energetic and optimistic? What gives you that ability to stay positive, appreciate and take on your responsibilities with some enthusiasm? The answers are often different for all of us. In the end, figuring out how to wear your oxygen mask first requires you to be honest about your abilities and skills, to utilize the resources available, and to ultimately ask for help if this is needed.

And for us health care professionals? We need to be very careful of the responsibilities we place on caregivers. This is especially true in the medical community where we repeatedly discharge people into the care of family, without family really knowing what the responsibilities will entail. As health care providers our responsibility is always to the client, yet we need to take that extra time to check in with the caregiver, talk about how they are coping and managing and if needed, offer them an oxygen mask.

I hope the caregivers that attended our workshop felt that by spending a day focusing on themselves, expanding their knowledge, and learning the keys to success, that this was one step towards them being able to put their own mask on first. This was highlighted at the end of the day when the caregiver of a survivor, whose loved one was injured 13 years ago gave this advice: “If I could do it again, my priorities would be self, family, then my loved one with a brain injury”. What a great lesson for me to take forward in my practice.

For more posts related to brain injury please visit our Brain Health Archive.

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Tough Conversations

Julie Entwistle, MBA, BHSc (OT), BSc (Health / Gerontology)

My grandmother always used to say “once an adult, twice a child”.  She was referring to the fact that we start life dependent, and through the aging process, tend to end our life that way as well.  So, what happens when the grown-up “child” needs to become the caregiving adult in a relationship with an aging parent?  It leads to many tough conversations about some pretty big topics.  Recognizing that some conversations are not only difficult, but could cause relationship-changing outcomes, I wanted to give you some pointers for handling the big ticket items adult children might encounter with their aging parents:

Driving

We all have a societal obligation to ensure that the roads are safe.  Just like a parent not giving the keys to a teen that has not demonstrated adequate driving skills, adults need to look for this in their older parents too.  While some seniors self-retire their license when they feel they are unsafe, some are not as willing, or able, to make this decision.  I remember my grandmother stopped driving when one day behind the wheel she “woke up and the light was green”.  While we joked about this as a family, we applauded her for making a responsible decision.

Making sure your parents are able to drive safely is important for them, and the general public.  So how do you manage this?  Next time you are out with your parent drive separately and follow them, or get them to drive with you in the car.  Watch for the following:

  • Are they driving to slow or too fast?  Note that driving too slow can be just as dangerous as driving too fast.
  • Are they obeying the traffic signs?
  • Do they have the range of motion to look both ways and check blind spots?  Are they looking around at stop signs, when merging lanes?
  • How are they negotiating directions, are they getting lost frequently?
  • Do they seem to be driving aggressively, or do they seem oblivious to other drivers, cyclists or pedestrians?
  • Do they obey right of ways, manage one-way streets, can they park the car safely and easily in a lot or on a side-street?

If you have concerns about any of the above, you have a moral obligation to bring your concerns to their attention, or to the attention of their treating physician.  If you choose to have this discussion with them directly, be caring and compassionate, but direct.  Tell them about your concerns but instead of just telling them they shouldn’t drive, suggest the involvement of a professional like their doctor, an occupational therapist, or driving assessment.  If you are not comfortable having this conversation with them, bring your concerns to the attention of their treating physician so they can do their own assessment.

Home Modifications

Most seniors want to remain in their own home as long as possible.  Many recognize that some small changes to the home could have a big impact on their safety and function, and some are very hesitant to consider modifications.  I remember I once had a call from a physician who was calling about his own parents, expressing concerns about his mother and how she was managing at home.  We talked about the value of OT and he agreed that a home assessment would help her.  He then asked “so, what should I say to her to get her to agree to this”?  I found that surprising as even as a physician who is required to have difficult conversations with people all the time, he struggled to know how to approach his mom.  I suggested he tell her that he recognizes it was very important to her to stay at home as long as possible, and that he is concerned that if she falls, staying home might not be an option.  I told him to tell her that he wants to have an occupational therapist come and talk to her about her safety to make sure they are doing everything possible to keep her living at home for as long as she can.  He called his mom, and like a kid planning a sleepover, called back and said “it worked, she said yes”!

I think it is important for adults of aging parents to demystify the home modification process and stress to their parents that most changes are minor, removable, or will actually increase the value of their home, while keeping them there for as long as possible.

But honestly, the best approach is usually letting a professional explain to the aging parent what can be done, and what they should consider either now, or in the future, to ensure their home continues to work for them.  In that case, the difficult conversation is more getting the professional in the door, instead of trying to convince the parent of the changes that you feel (without full knowledge of the options) might be needed.  Occupational therapists are great at getting a sense of what people need, explaining the options, and coming up with a plan.  I always chuckle when I meet with seniors and the first thing they say is “I know my son says we need X, Y and Z, but just so you know we are not doing that”.

Relocation

There may come a time when being the primary caregiver of an aging parent who is trying to live at home, may become too much. Caregiving is a difficult task that often requires time, knowledge or a level of commitment that a working adult-child who might have children of their own, just does not have. Having a discussion with your parent about the need to relocate to get access to skilled or more available care, is difficult.  Like the other conversations, tell your parent that their safety is your primary concern and that you are willing to do all you can to help them get the care they need.  Remind them of your own capabilities and the other responsibilities that you are also trying to balance.  Framing your conversation this way will go a long way to show them you are being supportive, and not just trying to tell them what to do or how to do it.

In the end, yes these conversations will be difficult, but your parents need your love, support and guidance as they navigate the aging process.  I remember having a difficult conversation with my grandmother about her decision to use a walker instead of her wheelchair, when the wheelchair was much safer for her.  She was giving me a hard time and I reminded her that she taught us to care about each other so the fact that I care about her safety was actually her own fault.  She laughed and we had a great conversation about her fears about declining mobility and reducing independence.

I wish you the best as you navigate these difficult conversations with your parents.  But remember, sometimes involving a professional (like an OT) who can assess the situation, come up with solutions, and develop a plan may go a long way to maintaining the parent / adult-child relationship, while keeping the parent safe at the same time.

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Canada’s First Alzheimer’s Health Club

Providing care for an aging or ill loved one is a difficult task.  A recent study from the Mental Health Commission of Canada found that of the 5.5 million Canadian adults acting as caregivers, approximately 17% reported caregiver related stress.  With the aging population and dementia and Alzheimer’s numbers rising, it is more important than ever for caregivers to ensure that while they are providing the best for their loved ones, they are also caring for themselves.  A new facility in Markham Ontario has been launched to do just that.  Memory and Company is a private health club with upscale amenities to provide those with Alzheimer’s and related dementias a safe place to be cared for, stay social and remain active while primary caregivers work or enjoy some much needed respite.  Check out more about Memory and Company in this recent CTV news piece.

photo care of memoryandcompany.com

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Caregiver Friendly Workplaces – Are You There Yet?

Julie Entwistle, MBA, BHSc (OT), BSc (Health / Gerontology)

I enjoy reading Abilities Magazine. I always find useful information, new products, and inspiring stories of people that overcome adversity and disability. In the recent issue I was intrigued, and pleased, to see an award now offered by the Canadian Abilities Foundation to organizations that are Caregiver Friendly.

The magazine reports: “in recent years, forward-thinking businesses and organizations have begun to recognize the value of supporting employees who are caregivers…the Caregiver-Friendly Workplace Award, presented in partnership with Canada Cares, is provided to organizations who are leaders in this area”.

Would your organization be in the running?

Working as an occupational therapist I am reminded daily that life can change in an instant. Often, amidst the trauma of an accident or illness, families are thrust into a new role. Sometimes the role is advocate and acting power of attorney at a hospital 24/7. Or, it is providing direct care to someone now using a wheelchair who can’t independently toilet and bathe. Maybe it is emotional support via conversations and sleeplessness nights to help someone lower their anxiety or deal with depression. An ailing parent might need rides to the doctor, specialists and pharmacy. A loved one with cancer might need help with instrumental activities like groceries, shopping and banking while they recover from surgery or treatment. The bottom line here is that in the course of our working lifetime, we will all likely be in a caregiving role. From parents with young kids, to the sandwich generation and baby boomers, taking care of others is inherent to being human.

Employers need to recognize that at times employees will need to be awarded some empathy, compassion and flexibility if they are required to care for others. While in Ontario people can apply for a 30-day Compassion Care Benefit through Employment Insurance, this may not be enough. Often caregiving responsibilities extend far beyond a month into years and decades.

Caregiving requires a lifestyle change – a shift in priorities, a new schedule, and emotional resilience. Thus when an employee is thrust into an often challenging life change involving caregiving responsibilities, employers need to find a way to bridge the gap, offer alternative work arrangements, provide a supportive ear, and patiently await the development of routines that will hopefully include the one-day return of the employee to regular work hours and duties.

If you are an employer that offers compassion, support, and flexibility to your caregiving employees, let the Canadian Abilities Foundation hear your story. Be recognized for the culture you are creating at your workplace and know that you are setting an example for other organizations that still need to rise to the challenge.