Dear Laird: Being a caregiver for my wife sucks, but I really love her. I’m committed and will care for her the best I can. That’s why I don’t understand when people tell me I should join a support group.

Most caregivers don’t seek out a support group right away. 

Like you, we care for our loved ones out of love and a sense of obligation. Some caregivers avoid support groups simply because they’re uncomfortable being vulnerable with strangers. Plus, in the beginning, things don’t feel as overwhelming.

With most neurocognitive disorders, the road ahead is full of ups and downs. Some days seem almost normal. But then there are days when unexpected things happen—your loved one gets lost, puts clean dishes in the oven or forgets the dog’s name. 

Caregivers adapt. We take things as they come. But sometimes, the changes hit hard—like when your wife forgets key details, such as, “Did we get married?” or “Please stay in the other room until my husband gets home.”

The early stage of the disease can begin with a diagnosis or sometimes it starts when something so strange happens that you just know. During this stage, the future you imagined is upended. You worry about the unknowns of caregiving and grieve the loss of the life you planned. 

After a time, you’ll adjust and things will feel much like they did before the diagnosis. The duties at home remain largely unchanged, so the caregiving burden feels light. 

In the middle phase, caregivers start to wear down. The time spent on daily tasks grows and the time for personal activities shrinks. You may realize you can’t do it alone and turn to family and friends for help, but sometimes they’re unable to assist due to distance or their own obligations. They may even withdraw, not knowing how to help or how to interact with someone they now see more as a disease than as the person they once knew.

In this stage, many caregivers recognize they need support but have a hard time finding it. 

That’s where support groups come in. These groups are filled with people who truly understand how hard caregiving is. It’s a safe space where you don’t feel alone or like a failure. Those who are further along in the journey can offer advice, share how they faced similar challenges and help you prepare for what’s to come.

In the late stage, caregiving becomes a 24-hour responsibility. Group members share their experiences with tough decisions, such as whether or not to place a loved one in full-time care. Hearing others’ stories will help inform your own choices.

Lastly, support groups offer the chance to make new friends. Connecting with people who understand what you’re going through helps balance the grief of losing the friends you once had.