If you've been a dementia caregiver for any length of time, then I don't have to convince you that it is one the hardest roads to walk. That it takes a heavy emotional and physical toll. Caregivers are 30 times more likely to be depressed than non-caregivers. Up to 40% of caregivers die before the one they are caring for.
If dementia is new to you, it can feel like you've been dropped on another planet, where none of the rules you've always known apply. Down to the most basic thing, everything is different. For your loved one AND you. In the midst of all the newness, there's confusion and helplessness.
While you're busy adjusting to all the changes, there are also waves of grief that come from all sides. Some that you knew to anticipate, but so many that you weren't even aware of, that blindside you and take your breath away.
Dementia itself can be unrelenting, and the demands nonstop. Being overwhelmed almost comes naturally. Add to that any family drama, trying to coordinate with siblings and parents, any unhealed wounds from the past, and all the stuff that is dredged up whenever we face mortality, and I tell you what, it is just NOT a good time.
It's heavy, right? Even just writing that basic description of what most caregivers go through makes me feel bad for painting a rather bleak picture. So many of these feelings are normal and in no way indicate failure or inadequacy in any way. In and of themselves are worth getting support for. Even if you are in a place of recognizing that there are moments of joy and there are so many ways that caretaking is a sacred space between you and the one you love...you might need help *finding* the joy.
The bigger danger is that the difficult of caregiving can lead to burnout. Especially if there's a part of you that feels trapped, or has guilt or anxiety about how you feel, or is developing resentment about your situation. If you're not sleeping or are otherwise neglecting your physical or emotional well-being, you're at risk. Or if you feel alone in your caregiving role. Check here for a list of red flags to be on the lookout for.
Stress from caregiving doesn't only impact that part of your life involved in taking care of your loved one. It touches every corner of your life.
How Counseling Helps Caregivers...and the Ones They Care For
Feeling like you have to always be on duty, sleeping with one eye open, being bombarded by constant needs, not being able to get away for a shower or a simple trip to the store can make caregivers feel trapped in their role. Feeling helpless to escape feeds frustration, which can lead to anger, depression, resentment, and overwhelm. It can erode patience, empathy, and compassion that you have for the one you are caring for.
The many unknowns of dementia can feed anxiety and worry. Stress wreaks havoc on relationships and self-care. Many caregivers struggle with inadequacy and feelings of failure.
Learning how to understand and address all of these feelings is of the primary benefits of counseling. Having someone you can talk to freely and openly, venting about your struggles and fears without fear of being judged helps to alleviate depression. Being able to confide in someone reduces isolation. Having a trusted counselor or coach to get help with practical issues in caregiving gives you tools and cuts down on feelings of helplessness.
Research shows that those who receive regular emotional support are more able to prevent burnout, handle difficult care decisions, and balance their own self-care with care of their loved one. When a caregiver is doing well, they are more able to provide good care. And being able to provide the kind of care you want to be providing cuts down on guilt and inadequacy.
With some types of counseling, for example family counseling to keep everyone feeling supported and on the same page, it can keep the loved one at home longer, avoiding unwanted institutional care. Which has emotional benefits, but also financial benefits.
There are many options for receiving emotional support. Professional counselors are available online or in person to give you one-on-one support, to help you learn how to process your feelings, set appropriate boundaries, understand dementia, improve communication skills, build problem solving skills. Some counselors also provide family sessions.
There are also in-person and online support groups through local dementia associations, churches, and even Facebook groups where you can find peers struggling with similar concerns and can ask for advice with specific issues.
For referrals to counselors or support groups, your local Area Agency on Aging, dementia associations, doctor's offices, churches, or word of mouth can give you recommendations. You can also check with your insurance company for approved providers. Hospice agencies often offer grief counseling.
If cost is a concern, support groups or talking with a loving friend or family member is a good way to get free support and encouragement. Additionally, you can check to see if you are eligible for a clinical trial like the NYU Caregiver Intervention. In this study, they offer up to six free sessions of individual and family counseling to those eligible. It is currently available to those caring for a partner or parent with dementia, living in the same home.
Whatever you do, know that caring for yourself is a vital act. Your loved one can only do as well as you do. Caring for yourself IS caring for them.