Let’s talk about the impact of caregiving – notably, the negative effects of caregiving.
I’ll spend a little time talking about the positives of caregiving, but I want to give more attention to the negative effects of caregiving because they often outweigh the good.
I’ve experienced it first hand and seen it in other families.
A child tries to help a parent through caregiving. A spouse tries to help a sick spouse through caregiving. A niece or nephew try to help an aunt or uncle through caregiving.
It usually leads to poor outcomes emotionally, physically, and financially.
Let’s talk about what caregiving is, the negative effects of it, and resources for caregiving relief.
What is Caregiving?
Caregiving is providing care for another person, such as a spouse, child, parent, grandparent, relative, neighbor, or other person.
Although there are paid caregivers, I am talking about unpaid, informal caregivers.
It’s the family caregivers that often have to help manage a person’s life while trying to live their own – with their own set of family responsibilities, chores, transportation, and work.
Caregiving can include the following:
- Help with eating
- Medication management
- Transportation to appointments
- Coordinating care
- Arranging activities
- Helping with finances
- Caring for a person’s animal
- Housekeeping or cleaning
- Companionship, emotional support, and supervision
- Food shopping and cooking
- Communication with healthcare providers (doctors, physical therapy, dentists, etc.)
As you can see, caregiving can be many different tasks depending on the situation and what is needed. It isn’t always direct, hands on care.
Positives of Caregiving
Before I talk about the negative effects of caregiving, let’s talk about a few positives of caregiving.
I won’t sugarcoat it. Not everybody is going to feel these positives of caregiving and you may feel them at different times in your journey. Then, they may go away. Each journey is unique.
Sense of Belonging/Purpose
You may feel a sense of belonging or purpose caring for a loved one.
When caregiving, you can see the direct impact you are making. If you go shopping, prepare the food, and then cook a meal for your loved one, you can see the smile on their face knowing they have a fresh, delicious meal.
That can make your life feel like it has purpose.
Think of the alternative – a frozen meal they heat up or a take out order. Although both have their place, they likely won’t leave you with as much of a sense of fulfillment.
When you are caregiving, you know you are caring for a loved one the way you would want to be treated. As you see how your loved one accepts your caregiving, that can give you a sense of belonging.
Network of Caregivers
Another positive of being a caregiver is that you may find an extended family or network of caregivers with which you can connect.
Personally, I spend time on Twitter, and I’ve met wonderful people who are caregivers. There is a community of support. If you post a negative thing that happened or have questions, people often chime in with support or ideas.
Whether it’s an online forum, a social media platform, Facebook group, or a local community, caregivers come together to share stories, provide support, and listen when it’s needed.
Caregiving can open up your community.
Extends Financial Resources of Person
I’ll talk about the financial aspects more later, but if you are an unpaid caregiver, technically, you are normally extending the financial resources of the person for whom you are caregiving.
If they don’t need to hire an in-home aid for $40 an hour, your hour puts $40 back in their pocket.
That may allow them to afford more of their medications, buy other necessities, or provide other options for caregiving later.
Increased Meaning in Life
Caregiving is personal and filled with all sorts of emotions, which sometimes can translate to increased meaning in life.
Normally, when you are caregiving, you get the opportunity to hear stories, what people regret, what’s important now, and the privilege to see people at their weakest.
That can give you perspective. It can give increased meaning. It can help you focus on what is important and help avoid the stuff that feels important, but isn’t.
Caregiving is taking a step outside of the “normal” world and into an out-of-your-comfort zone world. When you do that, you may find meaning in the small things, such as walking, balancing easily on two feet, cognitive function to learn technology, cooking, and holding a conversation without forgetting words.
Now that we’ve talked about the positive effects of caregiving, let’s talk about some of the possible negative effects of caregiving.
Emotional Effects of Caregiving
The emotional effects of caregiving are generally bad. Caring for an older adult has been associated with anxiety, depression, and higher use of psychoactive medications.
Caregivers often feel overwhelmed, isolated, tired, apathetic about activities they once enjoyed, agitated, irritable, angry, sad, and worried.
Although these emotions span a wide spectrum, sometimes they can be felt in one day.
Caregiving is an emotional roller coaster.
One day you may feel anxiety about whether a certain medication is going to help your loved one. Then, you may feel depressed that it isn’t working. After that, you might feel angry that the pharmacy doesn’t have the new prescription. By the afternoon, you may feel exhausted and worried about what tomorrow will bring.
Caregivers oscillate between emotions, and it always feels like a mixed bag of what will be felt next.
Personally, I’ve felt the emotional effects of caregiving. I’ve been amazed at the rollercoaster of emotions I can feel in a day, depending on what is happening. I often feel stressed and worried about what will happen next.
I am angry at the system we have for the lack of continuity and support for people who have cognitive impairment, but who can still make their own decisions. I also remember feeling grateful for the cancer medicines we have, despite how I feel now about the cocktail of medicines required for the closest thing one can have to a normal life.
Physical Effects of Caregiving
The emotional effects of caregiving often manifest into physical effects.
Below are a list of possible physical effects of caregiving:
- Weakened immune system
- Increased risk of early death
- Sleep problems
- Memory problems
- Increased use of alcohol, medication, and food
- Weight gain
One study from 1999 found that “after adjusting for sociodemographic factors, prevalent disease, and subclinical cardiovascular disease, participants who were providing care and experiencing caregiver strain had mortality risks that were 63% higher than non caregiving controls.”
Participants who provided care, but didn’t experience strain did not have elevated adjusted mortality rates.
What does this mean in the real world?
If a spousal caregiver is feeling strain, they may want to hire caregivers and find ways to decrease their stress because they have a 63% higher mortality risk compared to non caregivers.
Caregiving is physically demanding, stressful, and time consuming, which means caregivers often skip their own doctor appointments, neglect their own mental and physical health, and suffer the consequences of stress on the body.
Personally, I’ve felt the physical effects of caregiving. I’ve eaten more junk food on the days that don’t go well. I once had an entire bag of chex mix for dinner because that’s all I felt like eating. On the days that are really rough, a Trader Joe’s ice cream sandwich is usually on the menu. I’ve also felt fatigued, and sleep has not been the same since my dad was diagnosed with cancer over six years ago. Stress is almost a constant.
Financial Effects of Caregiving
Caregiving also can wreak havoc on the finances of caregivers.
Caregivers often try to reduce hours, shift to a different schedule, or pick up extra jobs during nights or weekends to keep up the demands of caregiving, but as illnesses progress, caregivers may leave their job and move in full time with a loved one.
Studies have shown caregivers may leave the work force and not return for years.
For those that stay, they may miss more work or have “reduced productivity.”
If you have paid caregivers along with unpaid caregivers to help create a patchwork of care, a paid caregiver canceling may mean staying home and missing work. Or, you are fighting with insurance or arranging medical appointments while at work because it’s the only time they are open.
Personally, I’ve experienced reduced productivity. Although I am not in the same geographical location as my dad, there have been days where I’ve had to field 15+ calls from social workers, nurses, and doctors when he has been hospitalized. I get very little done during those days. Thankfully, I’m self-employed, so I have the flexibility, but those days are missed opportunities for me to work on my new business.
When I was at my prior job, my work was always able to be flexible in allowing me to take the time I needed. Despite this, it’s sometimes even more stressful trying to cancel and reschedule 3-4 appointments in order to drop everything for an emergency and try to make up the time with clients.
Relationship Effects of Caregiving
Caregiving can also negatively affect your relationships. It could be with a spouse or partner, sibling, parent, grandparent, friend, or other relationship.
Although the relationship between a caregiver and the person for whom they are caring will likely be affected, I often see relationships suffer outside of the caregiving.
If someone is caregiving, they may have less time for their partner and family responsibilities, leading to increased stress and tension.
If someone is caregiving while another sibling is not, there may be judgment by the sibling who is not providing care who is not seeing the entire picture of what is happening. They may think their loved one is fine while the sibling providing care has a better understanding of what is needed.
If someone is caregiving, their friend relationships may suffer because they don’t have as much time to invest in those relationships and when they do, they may not show up as their true self because of stress.
Caregiving impacts many areas of life. Whether it is family members fighting about what a loved one needs or simply lack of time to invest with someone else, relationships are often a casualty of caregiving.
Resources for Caregiving Relief
Although resources for caregiving relief can be hard to find, they do exist and when you find the right one and it works, it can be a true gift.
Every state has community resources on aging and health services. Here is a link that has all 50: resources on aging near you.
You can also find resources by inputting your zip code here: services for older adults and families.
You can also use the Neighborhood Navigator, which can help find resources in your community, such as:
Many counties have virtual and in person events about aging, nutrition, falls, medication management, and more.
Although they can be time consuming to wade through, you may find a helpful organization or network of people who can support you in the challenges you will face as a caregiver.
Taking Care of Yourself
Besides local community resources, it’s important to take care of yourself to reduce stress and burnout.
Help Guide has an extensive list of how to ask for help, finding the appreciation you need, prioritize breaks, and joining caregiver support groups.
Personally, I’ve found the following helpful:
- Joining a support group
- Exercising regularly
- Outsourcing what I dislike doing
- Hiring an eldercare consultant
I joined a support group when my dad was diagnosed with Stage IV Lung Cancer. It was one of the best decisions I could have made. I was surrounded by people who were going through similar levels of anxiety, worry, and uncertainty. We could talk about treatments, how people didn’t know what to say to us, and our personal lives when we didn’t feel well.
Although I have not exercised regularly while being a caregiver, when I have, I always feel better. Even if it’s only two minutes of activity or stretching, it helps. I almost always don’t look forward to it, but I feel better after.
Like most people, I struggle with outsourcing certain things, but I’ve found it helpful. For example, I can clean our house, but it’s one of the last things I ever want to do after a stressful week. I’m much happier if I spend the money hiring a cleaner and magically having a clean house. Each person has a different tolerance and love for chores. If you can’t stand cooking, laundry, or cleaning, consider outsourcing it.
Writing, as you can probably imagine, is an outlet for me. I’m not the best writer, but it’s something I enjoy. It’s a way for me to process. Whether it’s writing three things I am thankful for each day, telling a story, creating blog posts about my experience caregiving, or simply writing what I am feeling, writing has been a helpful break from caregiving.
Something I was very hesitant to do at the beginning of this caregiving journey is traveling. I’ve skipped trips and chosen not to plan others because I’m worried something will come up. There is always the possibility something comes up. Take the trip if you can. It’s incredibly important to get outside of your home and normal routine. It breaks up what you normally feel and experience, and I’ve found it allows me to come back re-energized and more ready for caregiving.
Lastly, hiring an eldercare consultant has been invaluable. They’ve helped plan for an assisted living transition, picked up the pieces when things have broken, and helped connect us to other resources.
Caregiving is often a marathon, which means it’s vital that you find ways to relieve your stress and avoid burnout.
Final Thoughts – My Question for You
It’s estimated that nearly one in five adults are providing unpaid care to an adult.
Tens of millions of people are providing informal care every day.
While they may experience the positive effects of caregiving, there are many negative effects to be mindful of.
From the emotional effects, such as stress and anxiety, to the physical effects, such as increased mortality and weight gain, caregiving can change your life.
If you don’t feel the emotional or physical effects, perhaps you’ll feel the financial effects where you have to reduce your work hours, leave the workforce, pay for someone else’s care, or increase the expenses in your own life to give care.
Finally, pay close attention to how caregiving affects your relationships. Whether it is with your partner, a parent, or a friend, caregiving can change how you interact with others.
As you navigate your caregiving journey, don’t forget about yourself and the resources available to you. Whether it is self-care or resources in your community, it is common and helpful to lean on the resources available to you.
I’ll leave you with one question to act on.
What resources will you use in your caregiving journey?