My Experience with Caregiving
A little over 1.5 years ago, my father died after being terminally ill for 2.5 years. He began getting very sick in 2018, right when I started my graduate program to become a therapist. I had to learn things quickly, but I also felt immensely overwhelmed by everything I had to learn in such a short amount of time. He was in and out of ERs every quarter, and eventually, he ended up in a nursing facility until he died.
Before my father became ill, I never imagined that I had to go through what I did, and neither did my mother. We both took care of my father in different ways, and both ways had its challenges. I gradually yet quickly became his social worker, power of attorney, health advocate, errand runner, and driver, on top of being his dutiful daughter who lived in the same city as him. My sister was out of state, so while she helped as much as she could, she was still limited in what she was able to do for our father.
The truth is, almost everyone becomes a caregiver for an ill or elderly person, one way or another. It is often not a choice, just like how aging or developing a disease is not a choice. It is just as normal to depend on others to be taken care of, as people enter different courses in their lives. Caregiving is a natural process in life, especially with the increase in our average lifespan. You might feel cornered to take care of a loved one, but those moments are also precious, scarce times that you get to spend time with before they die.
There are so many layers to caregiving, and it’s such a difficult task to do. It may be rewarding at times, and other times you might feel angry, depleted, lonely, and sad as you may be going through anticipatory grief. I experienced caregiving particularly with an immigrant Asian parent, which adds layers to the difficulties of caregiving. I will get more to that later.
Advice From a Fellow Caregiver:
- Take care of yourself before you take care of others. This is the most important above all else. Putting on your oxygen mask first before helping others put theirs on applies 100% here. You cannot help other people when you are barely hanging on yourself. This includes eating nutritious, healthy meals, exercising regularly, and engaging in self-care activities to revitalize you throughout this difficult process. Rest is extremely important especially when you are taking care of a loved one—it takes its toll emotionally, mentally, and physically.
- Reach out to family members and ask for help. Tell them your situation and that you cannot do this alone. No one can take care of a dependent adult or elderly alone—it is impossible. Just as people say it takes a village to care for a child, it also takes a village to care for the ill and/or elderly. Delegate the workload so that you’re not the only one doing everything. Try to delegate workload that others are able to do, so that you are able to handle the more important tasks that only you are able to manage.
- Knowledge really is power. The more you understand your loved one’s condition, the more you will know how to take care of them and what to expect. This includes whether their disease is terminal, or what prescription medications they need to take in order to manage their symptoms. Check with their doctors and pharmacists to make sure they are (or you are administering) their medications correctly. Watch out for side effects. Also learn about your loved one’s health insurance, if they have one. What medical expenses are covered by insurance, and what is not? Ask medical professionals questions that come up for you, no matter how silly it may sound.
- Research. Look for government (or private) resources that are out there for caregivers and for your loved one who needs help. This may include the following:
- Medi-Cal, Medicare, or other health insurance programs
- In Home Supportive Services (IHSS)
- Assisted living facilities
- Nursing facilities
- Rehabilitation services
- Adult daycare
- Memory care
- Organize. Start having your loved one’s affairs in order. Some items include:
- Advance Healthcare Directives
- Power of Attorney
- Health insurance papers
- Life insurance papers
- For Social Security payments you might have to become a representative payee
Questions to Consider as a Caregiver
These are the general, practical tips, but there are many more complexities, layers, and nuances based on your background, family dynamics, culture, and the nature of your loved one’s condition. Here are some questions to think about:
- Is it short-term? Long-term?
- Is your loved one terminally ill?
- Are they in hospice?
- Do you have a family that expects children to take care of their parents? Is putting your loved one in a nursing home acceptable in your culture?
- Is there a language barrier? Are you able to communicate with medical professionals and interpret for your loved one who is ill? What services are available to you and your family member(s) to lessen the language barrier as much as possible?
- What has been your role in the family, what role have shifted since your family member/loved one became ill, and what role must you take on now?
During this time, I strongly advise you to let yourself feel all the wide range of emotions. It can be grief, anger, sadness, hopelessness, resentment, gratefulness, or joy. Some days will be rough, and other days will feel lighter. Appreciate more of the lighter days where you feel happy and joyful, and accept that there will be difficult days. Feeling guilty from anticipating relief after your loved one dies is very normal, and this does not mean you love them any less than you do.
All these emotions can be very overwhelming, leading to your mental health declining. Thus, I highly recommend relying on your support system, or build a strong support system if you don’t have one. This includes other family members, friends, and maybe a therapist. If you do decide to go the therapy route, therapy is a great way to have scheduled care time for yourself where it is only for you. Therapists are here to provide a space of respite, to be your sounding board, and coaches to help you problem-solve. For the problems that cannot be resolved, we’re here to make sure you land gently and feel supported no matter how painful and difficult your emotions may be.
Caregiving, whether short or long-term, is one of the biggest challenges that many people go through. Feeling isolated makes the challenge worse and more intense. Sharing your challenges means you can lean on others and not carry the heaviness all on your own.
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We’re here to carry some of that heaviness. We’re here to walk alongside you during this journey.
Other Services at Yellow Chair Collective
Our therapists at our Los Angeles and New York City-based counseling center are competent in many areas. They work with couples, teens, and individuals. They also help address issues such as postpartum therapy and trauma and PTSD. Finally, they provide highly sensitive people treatment, burnout treatment, EMDR, and culturally sensitive therapy. All services can be utilized online anywhere in California or New York.