Let’s face it: Caregiving for a loved one with dementia can be exhausting.
Most people don’t understand how challenging this work is until they have to do it themselves, which can leave caregivers feeling isolated and misunderstood. As a result, rates of depression, anxiety, and physical ailments are higher among caregivers and non-caregivers. In one study, researchers found that nearly 60 percent of dementia caregivers showed signs of depression. Perhaps you are one of them.
Caregivers are compassionate, deeply giving people. After all, that’s why they choose to tend to their loved one’s needs. A compassionate sense of obligation and a desire to do it all often go hand-in-hand with the impulse to help others. This can leave caregivers feeling overwhelmed and guilty, especially when they face the inevitable reality that no dementia caregiver can possibly do it all alone.
The day-to-day realities of dementia are often hidden, and the people around you may not understand everything you’re dealing with as a caregiver—but you don’t have to face this challenge alone. Struggling is normal, and it is an act of love and care to know when to seek help.
These resources can help you weather the storm.
1. Self-Care Strategies
Self-care is the first thing to go for many dementia caregivers. One study found that caregivers were significantly more likely to miss doctor’s appointments and fail to tend to their own medical needs. This makes sense when you consider how time-consuming and exhausting caregiving can be. Basic acts of self-care can feel like just one more thing to cross off of your to-do list, and some caregivers worry that they’re being selfish when they assert and tend to their own needs.
Here’s the reality, though: You cannot adequately care for your loved one if you do not care for yourself. Self-care is vital to your ability to continue meeting your loved one’s needs and avoid burnout.
Spend some time developing a self-care plan that prioritizes your needs. Some options to consider include:
- Make time for healthcare, including preventative care: Remember that skipping a medical appointment now could compromise your ability to care for your loved one in the future.
- Find support: Consider joining an online or in-person support group. Find one here.
- Carve out time to exercise: Exercise relieves stress and pain, and even a little exercise is incredibly helpful. One study found that just 11 minutes of exercise a day could help you live longer.
- Carve out time each day to do something you enjoy: Life should not feel like an endless slog, and when it does, it’s much harder to care for your loved one.
- Don’t hold yourself to a standard you don’t apply to other people: If you’re not angry at your siblings for not helping, for example, don’t guilt yourself for not doing it all. Kindness matters, and you must extend it to yourself.
2. Dementia Management Tips
Before you became a dementia caregiver, you might have believed what a lot of people do: Dementia is primarily just memory loss, or there are good treatments for it.
Understand the Disease
The truth is that dementia fundamentally changes your loved one’s brain. Because the brain controls everything the body and mind do, the symptoms of dementia are vast, unpredictable, and constantly changing. Your loved one’s brain functions differently than it once did. They perceive the world differently, have different tastes and interests, and may struggle with their mental health.
Your loved one is still there, but their experience of the world has changed. Managing dementia caregiving is all about understanding these changes. The goal should be to work with your loved one’s brain rather than against it.
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Seek Out Occupational Therapy
Occupational therapy for you and your loved one with a dementia care expert can help you better manage daily challenges like grooming and feeding. For those who can’t access occupational therapy, a vast wealth of online resources can fill in the gaps. Teepa Snow offers step-by-step guides for common challenges and an inspiring, empathetic approach that can help you better understand your loved one.
Adapt, Adapt, Adapt
Modify your home and schedule based on your loved one’s needs. A shower grab bar and non-skid rugs, for example, can reduce the risk of falls.
Don’t Make Meals a Battle
If diet and nutrition are a struggle, ask for a referral to a dietitian.
When Possible, Go with Your Loved One’s Flow
Don’t force or coerce your loved one to make decisions they don’t want to make. Dementia is a terminal illness. Engaging in daily battles over medication to improve long-term health, subjecting your loved one to painful medical exams, and forcing other strategies designed to maximize long-term survival are just not worth it if they undermine happiness in the here and now.
Step into Your Loved One’s World
Meet them where they are. If they think their long-dead sister is with them, don’t correct them. This only forces them to relive the trauma of the death. If they think they’re on a first date, let them enjoy it without correction. Your loved one is having a different experience of the world than you are, and that is ok.
3. Geriatric Care Management
Dementia caregivers have to make dozens of decisions. Do you hospitalize your loved one for a UTI or keep them at home? Do you move them into a memory care community or hire a home health aide? Should you go through with that painful medical test? Should you encourage them to take medication they don’t want to take? Is speech therapy worth it? How much is it all going to cost, and can you afford it?
It’s easy to feel exhausted just thinking about these decisions, let alone making them. Factor in the fact that most caregivers do not have dementia expertise, and many must make decisions while under immense pressure from friends and family who may have contradictory ideas about the best care, and it’s easy to see why even an apparently simple decision can become so emotionally fraught.
Reduce the stress by working with a geriatric care manager. These are dementia experts who understand the most common dementia challenges. They have connections to dementia resources in your area—memory care communities, family therapy, neurologists, and more—and can help you assess which resources might be right for your family. Because many geriatric care managers are social workers, they can also support your family to talk through decisions and manage caregiving conflicts.
4. Respite Care
Telling someone to prioritize self-care is easy. What’s much harder is finding time to fit it into an already exhausting schedule.
Respite care offers a chance to work, go to school, spend some time alone, and practice self-care. Some respite care organizations offer one-time care so you can go on vacation or get a break. If you need longer-term help, adult day services can free up time in your day and space in your brain, so that dementia caregiving is just one part of your life—not the whole story.
5. Memory Care Communities
Most people living with dementia need 24/7 care as the disease progresses. Even if you’re not there yet, planning for this eventual reality can relieve much of the stress of caregiving and give you hope because you have a workable plan for the future.
If you are already struggling with the needs of a person who can’t safely be alone, know that you and your loved one both deserve what residential memory care can offer.
The Truth About Memory Care Communities
Many families worry that choosing a dementia care community means they’re giving up. The proclamations of elders who once insisted they never wanted to be “put in a home” may intensify this worry, and supercharge caregiver guilt.
Here’s the truth: Today’s memory care communities are nothing like the closed-off, hospital-like nursing homes of a bygone era. Instead, they offer a higher quality of life, more socialization opportunities, more safety, and more support than just about anyone could ever offer at home.
Memory Care Community Resources
In the right community, your loved one will get:
- Expert 24/7 support and care
- Help with activities of daily living
- Near-constant opportunities for socialization
- Access to a beautiful, safe home
- Plenty of opportunities for exercise
- Activities specifically designed for the unique needs and brains of people living with dementia
- An environment designed to be soothing, thereby reducing challenging behaviors such as anxiety, sundowning and wandering
- Exceptional nutrition that actually tastes good
A memory care community offers you something, too: a relief from the incredible stress of dementia caregiving. This can restore a sense of balance to your life. You may even find it deepens your relationship with your loved one—free from the constant challenges of caregiving, you can begin spending enjoyable time together as equals once again.
These are the memories you’ll turn to when your loved one is gone. These are the memories your family deserves to be making. You deserve it. Your loved one deserves it. Dementia doesn’t have to be exhausting and demoralizing with the right support. A life of rich purpose and meaning is still possible.
Cedarhurst is here for you. Our memory care families gain access to our powerful network of support services, including our monthly Mindful Caregiving series.
To learn more, check out our free guide, The Insider’s Guide to Understanding Memory Care Pricing.