Being a caregiver for a loved one with dementia is a big challenge, and many first-time caregivers find themselves in over their heads, says Barbara Harrison, Executive Director of Bridges® by EPOCH at Westwood, a memory care assisted living community in Westwood, MA. “Caregiving is a wonderful calling, but it is also very trying and exhausting – more so than you might expect at first,” she says. “It’s essential that you understand the situation fully and manage your expectations in order to provide the best care for your loved one and yourself.”
Barbara says setting healthy boundaries and understanding the realities of what you’re trying to accomplish will go a long way towards giving caregivers a sense of balance. “Alzheimer’s disease and other forms of dementia are progressive and cause changes in your loved one that can be discombobulating for you,” she explains. “Many caregivers have unrealistic expectations about what they can accomplish, which is normal – but it also can quickly lead to guilt, frustration and burnout if you’re not careful.”
Barbara explains that she often sees first-time caregivers beating themselves up because they’re “not doing enough” or they’re not “perfect enough.” “There’s no such thing as a perfect caregiver,” she says. “The trick is to be the best caregiver you can be while also balancing other aspects of your life so you can remain centered and healthy. When you take steps to set yourself up for caregiving success, this can be a very rewarding journey for both you and your loved one.”
Challenges Caregivers Face
Isolation. Caregiving for someone with dementia can start off gradually, but eventually becomes all-encompassing as the disease progresses. Caregivers can quickly find themselves being cut off from the outside world, spending pretty much all their waking hours caring for (or thinking about caring for) their loved one. Being isolated for long amounts of time can cause depression, stress, health issues and eventually burnout.
Stress. No surprise here – caregiving for a loved one with dementia can be very stressful. There are seemingly countless tasks to juggle, from shuttling Mom or Dad back and forth to the doctor, managing medications, helping with the tasks of daily life and just about everything else. You as a caregiver may feel that everything is your responsibility and end up shouldering a lot of burden and stress that isn’t good for anyone.
Financial issues. It’s not uncommon for family caregivers to find themselves overwhelmed with the financial side of caregiving. Even if you have plenty of money, caregiving means you may have to put a job or career on the back burner, which can result in lost opportunities and limiting your income. Even just managing your loved one’s bills and finances can be a huge burden. Financial issues and difficulties are their own form of stress that can quickly snowball.
Unrealistic expectations. This is a rather nebulous challenge, but one of the most important ones to be aware of. First-time caregivers often have an image in their mind of how this all should go and what they should be able to accomplish. However, no one is a superhero and expecting yourself to be only leads to stress, angst and eventually issues like burnout.
Tips for Setting Yourself Up for Caregiving Success
Know your enemy.
Knowledge is power, and understanding what you and your loved one are facing will help you ground your expectations, lay a plan and know what the future may look like. A lot of the fear and uncertainty that swarms around diseases like dementia come from ignorance. By understanding the journey your loved one is on, you’ll be better able to predict and meet their needs, manage your situation and be better prepared for what lies ahead. A good way to start learning about your loved one’s disease is by talking to their physician, who can help point you towards different resources and information to get a well-rounded view of what caregiving may look like.
Be realistic with your expectations for your loved one.
We may not always admit it, but when we first take up the role of caregiver, we imagine that our loved one will be so thankful and pleased with everything we’re doing for them. However, the reality doesn’t often align with that – especially when it comes to dementia. Your loved one will remain the same person as the disease progresses, but things will change as they lose their abilities and their memories. They may not recognize you, and they certainly may not be grateful for all you’re doing. It’s important to expect this and be okay with this. Remember that, no matter how your loved one reacts or interacts, it’s not a reflection of your caregiving abilities – it’s simply a reflection of the disease.
Ask for help.
First-time caregivers often throw themselves fully into their role and try to do everything all by themselves. As you may have guessed, it’s simply not possible to sustain that. Trying to do everything is a sure-fire recipe for stress, breakdowns and burnouts. Instead, build a support team of healthcare professionals, friends and family and community resources to help lighten your load and provide your loved one with the best possible care. For example, perhaps you have a neighbor who can help once or twice a week by running errands for you. Maybe your brother can take over the financial side of things and help find resources. Or a friend can look into different community organizations and nonprofits that can provide you a helping hand. It’s not a sign of weakness to ask for help – in fact, it comes from a place of strength.
Make sure you’re caring for yourself.
Caregivers, especially first-time caregivers, often push their health and well-being to the back burner. But you can’t be a good caregiver unless you’re taking care of yourself. Finding time for self-care will help lower stress, provide a sense of stability and keep you centered. Every day, it’s important to find time to do something nice for yourself, even if it’s just a 10 minute walk around the block. Read a chapter from a book, take a relaxing bath, call a friend or enjoy a fancy cup of coffee. Caring for yourself will help you recharge your personal batters so you can continue to be the best caregiver possible.
Remember that you’re a whole person.
Yes, you’re a caregiver, but you’re also a child, parent, professional, friend and spouse. Just as it’s important to set expectations as a caregiver, you need to do the same for your other relationships – personal, professional and family. Set clear expectations in your life and with your other relationships in order to help reduce the strain and stress on you and the people you care about. Make sure you take time to nurture the relationships that are important to you. Not only will this help keep your relationships strong but it will also help you remember that you’re a whole person and not just a “caregiver.”
Being a caregiver can seem overwhelming, but it doesn’t have to define who you are. Take a deep breath, understand the situation you’re facing and put plans in place to help you be successful. Always remember that no matter what, you’re doing the best you can – which is the very best thing you can do for yourself and your loved one.
Exceptional Care & Fulfilling Lifestyle
Bridges® by EPOCH at Westwood provides memory care assisted living that is comfortable, positive, safe and engaging. Exclusively dedicated to caring for those with Alzheimer’s disease and other forms of dementia, our community offers a wellness-focused lifestyle that promotes dignity and individual preferences. Our memory care professionals receive specialized and ongoing training designed to help residents maximize their independence in a secure, calm environment – enriching the lives of our residents every day.
Inspiring Programs for All Stages
No matter what level of care or service is needed, residents and families can rest assured that our care and life-enrichment programs address the various stages of memory decline, allowing residents the opportunity to age in place.
Dedicated Memory Care
At Bridges® by EPOCH at Westwood, our services are designed to recognize and adapt to the unique challenges and individuality of each resident, while ensuring comfort and safety. We believe in a full-service approach to care and provide a high level of personalized attention for residents in various stages of memory loss.
Bridges® by EPOCH is New England's largest stand-alone memory care assisted living provider.
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