Alone Together: The Voice of the Caregiver

Taking on the care of someone at home with a neurological disease like Alzheimer’s or Parkinson’s... Did you feel a slight heaviness inside as you read that sentence? If you often find yourself saying, “Yes, in our family this task always falls to me,” know that you are not alone. Those who best understand you are others in the same situation, as well as the emotions that cannot be summed up in a few sentences.

Why Always Me?

When the need for care arises in a household, one person usually stands out naturally. Most often, women—especially mothers, daughters, or daughters-in-law—take on this role. However, it's not just about gender; a mix of cultural, social, and economic factors are at play. In Turkey, about 70% of caregivers are family members and, most frequently, women. (Resource: Turkey Demographic and Health Survey 2018)

Sometimes it happens spontaneously, sometimes after small arguments like “Who understands mom best?” The caregiving role becomes clear. Many relatives of patients think this burden is unfair, but see no other alternative.

Caregiver Syndrome: The Invisible Fatigue

Scientific studies show that long-term caregivers experience levels of fatigue, depression, and anxiety far above the societal average. Especially in illnesses like Alzheimer’s and Parkinson’s, as the disease progresses, responsibilities increase and the feeling of weariness deepens.

"Sometimes I go into a room and cry quietly. I’m sad, angry, and sometimes feel guilty… But I feel like if I don’t look after everything, everything will fall apart."

— Family caregiver, 54 years old

All these feelings are human. Studies show that the risk of anxiety disorders and depression is twice as high in individuals shouldering the caregiving burden alone (Pinquart & Sörensen, 2003).

A Journey That Begins with Empathy, Continued with Respect and Patience

Taking on the caregiver role in the family often means an inner conflict and ‘invisible heroism.’ Sometimes other family members reinforce this responsibility with phrases like “You take care better,” “You have patience,” or “You’re at home anyway.” Yet caregiving is not just about being there physically; it’s emotional, social, and psychological resilience as well.

• Having to put your own needs aside while caring for the patient

• Feeling unsupported or lacking someone to talk to

• Lack of appreciation from other family members

• Not being able to make time for work, friendships, or personal time

All of these can gradually lead to a cycle of burnout.

Why Is the Division of Roles So Unequal in Families?

If you’re always stuck with the caregiving role, consider the possible reasons below:

1. Cultural habits: Common patterns like “it’s a woman’s duty” or “the eldest takes care” often lead to one person taking on the role.

2. Economic reasons: The responsibility often falls on someone who has the most time at home or can more easily arrange time outside of work.

3. Personality traits: Being patient, compassionate, or organized can turn you into “the volunteer” even if you didn’t choose it.

4. Emotional manipulation: Transferring the burden with emotional prompting, such as “If you don’t do it, what will our mother do?”

Scientific Perspective: Is Equal Burden Possible?

Numerous research studies worldwide observe that the inability to share caregiving responsibilities raises stress levels in all family members. One study found that when care was shared between family members, the burnout rate dropped by 30% (Chappell & Reid, 2002).

Families often resist task rotation or sharing responsibilities, acting out of a belief that “It won’t work without me.” However, even taking short breaks and giving caregivers time for themselves is essential for sustainable caregiving.

Don’t Ignore the Emotional Dimension

We are human and we have feelings. You don’t always have to be strong. Feeling tired, overwhelmed, hurt, or at times impatient with your loved one is natural. Suppressing these emotions can lead to greater exhaustion in the long term. Don’t hesitate to say to yourself:

“Yes, this is hard for me. I need help!”

Remember, it’s not just a right but a necessity to seek emotional support during caregiving. Scientists have found that talking about emotions (with close ones or professionals) can reduce the risk of depression by at least 20% (Brodaty & Donkin, 2009).

The Consequences of Always Having the Caregiver Role

How Can You Protect Your Mental Resilience?

• Don’t hesitate to take small breaks. Even a half-hour walk can help.

• Make an effort to talk to someone with whom you can share your feelings.

• Listen to your body. If you’re tired, allow yourself to rest.

• If possible, don’t hesitate to ask siblings, spouses, relatives, or professionals for support.

• Remember that sharing your load can benefit your loved one, too; a healthy caregiver provides better care.

Practical Tips for Sharing the Caregiving Burden

You don’t have to be the only strong one. Here are some steps you can take to lighten the load:

1. Express openly:
   Ask for help from loved ones by saying, “I am really tired now, and I need some support.”

2. Use diaries:
   Write down small caregiving tasks and discuss who can help share them.

3. Create mini duties:
   Divide responsibilities like meals for one day, cleaning the next, or managing appointments among family members.

4. Consider getting professional help:
   Even professional caregiving support once or twice a week can make a big difference.

You Are Not Alone: Support Networks and Sharing Groups

The sudden burden of caregiving isn’t a mountain you must carry by yourself. Many cities have support groups and counseling services for family caregivers. Sometimes just sharing your feelings can make you feel lighter. Remember...

“The better you take care of yourself, the better you can care for your loved ones. Sometimes a drop of understanding can feel like an oasis in a desert.”

Final Word: Be Kind to Yourself

Having the caregiving role always land on you is not fate. Usually, establishing a new sharing arrangement requires patience, open communication, and a bit of courage. Making an effort to do your best without forgetting your own health and wellbeing is already a great achievement. And remember that you are not alone on this journey, and that your invisible efforts are immensely valuable.

Resources

• Pinquart, M. & Sörensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychology and Aging.

• Brodaty, H., & Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in Clinical Neuroscience.

• Chappell, N. L., & Reid, R. C. (2002). Burden and well-being among caregivers: Examining the distinction. The Gerontologist.

• Turkey Demographic and Health Survey (2018). Republic of Turkey, Ministry of Health.