Are you at risk of Caregiver Distress?
With a loved one acting as an informal caregiver, older adults with long-term care needs who wish to remain in their homes can often do so, allowing them to maintain their independence for as long as possible. This is usually a win-win situation for everyone involved: the senior can stay in their home and their loved one has the opportunity to care for their family member. If you're providing in-home care to a loved one then you know how fulfilling, rewarding but sometimes challenging that role can be. Meal preparation, housework, medication, shopping, transportation, personal hygiene and regular day-to-day activities may sometimes feel like a full-time job, but to you, it's also a labour of love.
Everyone's situation is different however, and circumstances may change over time. If you are a caregiver, it's important to recognize that if your situation meets particular criteria, you may actually be at a higher risk of Caregiver Distress. Simply put, Caregiver Distress is burnout. In other words, the physical, psychological, social and sometimes financial demands of caregiving take their toll on the caregiver. Down the road, some of these factors place the caregiver in a position where they are unable to continue caring for their loved one due to the decline of their own health. In some cases, they even begin suffering from anger and depression, through no fault of their own or of their loved one. Clearly, this is a situation that no one wants to see happen.
Ask yourself this:
If you answered yes to either of these questions, then Caregiver Distress is something that you need to know more about - and know that the best offence is a good defence.
The good news is that there is help. Recognize your risk factor in advance and take steps to ensure Caregiver Distress does not become an issue in your situation. The first step is answering the questions above and identifying your personal situation. If it does fall into any of the higher risk categories, recognize that you have an affordable support system in Comcare. Whether you require additional resources to assist with light housekeeping, laundry, and personal care for your loved one such as bathing or respite care so that you may take a much needed break, there is help. One of the most important things informal caregivers can do for their loved ones is to take care of themselves.
Caregiver Distress is a very normal part of care giving and is nothing to feel guilty or inadequate about. Nearly one in six caregivers experiences distress and the rate is even higher among those caring for clients and loved ones in higher risk groups. Take comfort in knowing that you can contact organizations like Comcare anytime and one of our health care professionals will be there to talk about your own personal situation. They provide a free in-home assessment to determine your exact support needs and discuss a variety of ways they can support you and your loved one, such as:
It is also important to know that even if your circumstance may not necessarily fall into a higher risk category, you may still be at risk of Caregiver Distress. A recent report by the Canadian Institute for Health Information (CIHI) shows that caregivers in these higher risk groups report considerably higher rates of distress related to their roles, in some cases higher than 50 per cent.
Remember, if you, or a caregiver, are at risk, it is important to get the support you need as soon as possible to help prevent Caregiver Distress. For more information on higher risk groups among informal caregivers, visit www.cihi.ca. To speak with a Comcare representative in your area, click on Contact Us at the bottom of this page and follow the link.
Comcare proudly presents a two part series from Chris Wynn, the director of Forgetful Not Forgotten. Chris discusses the importance seeking help early when a diagnoses of Alzheimer's disease is made and delves into why some may not go for help right away, what benefits there are to getting help early, and where to go to get that help.
"Forgetful Not Forgotten personalizes for the viewer the challenges that families are faced with when a loved one is diagnosed with dementia, and underscores the importance of seeking and accepting help at the early stages" says John Hands, Director of National Programs at Comcare Health Services.
Forgetful Not Forgotten is Chris Wynn's first feature documentary, challenging him as a writer, director, editor, and producer – as well as a son, sibling, and partner. Chris Wynn's intimate portrait of his family coming to grips with the realities of early-onset Alzheimer's disease is now available for you to purchase on DVD. Go to http://www.forgetfulnotforgotten.com/home for more information.
I can remember when my mother told me it was Alzheimer's. It was the spring of 1999 and my father was only 57 years old. We had heard of the word "Alzheimer's" before, but we really didn't know what it meant or what was about to happen to our family. We would spend the next few years trying to come to grips with my father's disease and the changes that would begin to occur on a day-to-day basis. Over the course of my dad's illness we learned a lot about the disease and ourselves, but the one thing that surprised me the most or the one thing I didn't expect was what my mother went through as the primary caregiver.
Caregiving is something that is hard to describe and you can't explain it until you've gone through it. It is an overwhelming daily job that can be all consuming, even when you are not actually doing the work it's always on your mind. As I look back now I wish we had gotten more help and wonder, why didn't we?
In the beginning I think it was really hard for my mother because she felt it was her responsibility to take care of my father, which is something I think most caregivers feel. I also think that in the beginning caregivers often feel that no one else can help, almost as if, "What kind of help can someone give me"? As well, they might feel guilty or even a bit embarrassed about needing someone else to help them. People may feel embarrassed to ask for help because there are no physical signs of Alzheimer's disease in the early stages, so it's hard to see or understand that their loved one is sick at all. So many caregivers feel isolated and alone and they are the only ones going through this and no one would understand their circumstances. There can also be a lot of confusion in the beginning – not really getting your questions answered, often not knowing what questions to even ask or reading contradictory things about the disease in the media. Seeking help might become frustrating. In the case of my family, my mother and I also believed that we were young enough and that we could do it ourselves. Later on we realized this was not the case and everyone needs help, no matter their situation.
I believe a caregiver has to start with family members or a close friend that they trust to just tell them about the situation and how they feel. Once they feel comfortable telling one person it becomes easier to then tell another friend or family member. Most importantly, caregivers should try to feel comfortable talking about their circumstances and experience. Again, this can be hard, especially if their loved one is in denial. The next step for a new caregiver would be to contact an appropriate support agency, expert or another caregiver. For us this was a little bit difficult as my parents had moved back to their cottage in a very rural area without a lot of organizations around to help. My mother and I did find help in our community of friends and family and eventually my mother found a support group in a small town about 40 minutes away, which I am happy to say she is still in contact with today. I believe once someone begins talking about their situation, they will feel better about themselves and gain more knowledge into how to handle the new and unpredictable situations that come with support a person with Alzheimer's. They might even make a few friends, no wait… I am sure they will make new friends along the way.
I spent the last few years of my father's disease with him and my mother, trying to help and be a support to both of them. During this time I documented my father and my family's experience which led to making a feature documentary about the last few years of my father's life for TVO, called "Forgetful Not Forgotten". Making the film helped me get closer to my father and again, made me realize the trials and tribulations that my mother went through as a caregiver. I also developed a website, www.forgetfulnotforgotten.com, where caregivers can share their stories with others and connect to each other.
I never realized the impact my filming would have on our family situation and dynamics. The experience has not only got me through some tough times, but it still helps me today and been great to learn how it helps others find a starting point for conversations about the disease. It seems that once a new caregiver sees or hears about one story, they almost immediately want to start telling everyone their own. I have been fortunate to hear so many stories from people after they have watched my film and I am glad it encourages them to tell their own.
Sharing your story can only help!
It’s hard enough to come to terms with the fact that an aging parent might require extra care. Imagine how they must feel.
Getting a parent to admit they need help can be a challenging task for any child. Here are a few tips to help you speak with Mom or Dad to consider home care.
For many seniors, pride is at the core of their resistance to home care. Even if it’s simply help keeping the house or managing medications, the idea of letting a stranger in violates their sense of independence and privacy.
Don’t let pride and the risk of hurt feelings stand in your way. The sooner you have that conversation, the better. After all, the longer you wait, the more you risk their health and well-being.
What’s behind your concerns? What type of help do you think your mom or dad needs? What resources are available to you? Before you sit down with your parent(s), have a plan. When you express your concerns in a logical and well-thought-out way, you have a better chance at making a convincing argument. You’ll also be less likely to be swayed by dissenting opinions.
Set the scene for your discussion. Choose a familiar and comfortable environment where you’re less likely to be interrupted or distracted. Speak from the heart when you express your concerns. Specific examples illustrating your concerns will provide credibility to your argument.
A productive conversation is one that involves more than one party. Once you’ve expressed your thoughts, take a step back and listen. Show you understand your parents’ concerns. This will allow you to suggest a home care solution that better meets their needs. And finally, in the face of adversity, keep steady and firmly re-state your concerns, being sure to focus on the positive benefits for your parent(s).
Accepting help from a stranger can be difficult for anyone. Involving your parent(s) in the search for the right service provider early in the process will give them a sense of empowerment and control. If they feel they have some input, they’ll be more likely to accept the support of an outside source.
Keep in mind that coming to terms with caring for aging parents is a family affair. Decisions require the input of all stakeholders, including siblings and other involved relatives. Including everyone in the decision-making process will reduce the potential for conflict and create a more positive experience for everyone.
If you’re unsuccessful at convincing your parent(s) they require the level of care you feel is necessary, consider starting small. Suggest weekly housekeeping or yard care. Once they experience the added convenience of home care, they’ll likely be more open to more involved types of care.
There’s a wealth of resources available to assist you with your home care needs. All you have to do is reach out. A qualified Comcare professional will be happy to assess your situation, make suggestions about treatment plans, connect you with local resources or speak with your family. Call us today at 1-877-663-5775 to find out more about how we can help.
Convincing an aging parent they require assistance is rarely an easy experience. And if at first you don’t succeed, keep trying. Remember, you have their best interests at heart and they will soon thank you for convincing them.