Dealing with Caregiver Guilt

on November 2, 2023

Caregivers come from all walks of life, a wide variety of demographics and incomes, yet we all face many of the same challenges in our role as caregiver.

According to ACL.gov “In 2019, at least 53 million people were providing informal, usually unpaid, care and support to aging family members and people of all ages with disabilities”. Chances are if you are reading this, you are one of them. And as people continue to live longer, those numbers will only increase.

Additionally the impact of COVID-19 on caregivers and more vulnerable, elderly, disabled, or immunocompromised people creates a recipe for disaster. Unfortunately, as a result of inconsistency with COVID safety protocols such as vaccinations, masking, and social distancing, the virus continues to spread, mutate, and replicate. As a result, the needs of both caregivers and care recipients will continue to mount. And because COVID-19 affects everyone differently it’s even more important that people continue to be vigilant about taking precautions to minimize the chance of exposure.

As a result of its highly contagious nature, despite taking safety precautions, the possiblity of being exposed still exists. Some people recover quickly, while others do not. For many who are suffering the effects of long-COVID, we know the stress on caregivers and healthcare providers will continue to increase over time. Healthcare providers suspect we may face an epidemic of disability as a result of exposure to COVID in the future.

While many caregivers readily accept the responsibility of caring for their aging parents and grandparents, doing so with great love, there is no denying the additional stress and guilt that comes along with that responsibility. Add to that the guilt the care recipient feels for needing help, and we are faced with an incredibly difficult situation.

The added stress of COVID has amplified the levels of stress many caregivers were already experiencing. Fears of exposing a loved one or being exposed yourself to this deadly and debilitating virus is putting never-before-seen stress on those on the front lines of caring for our most vulnerable citizens. The addition of an extremely contagious, deadly virus to the mix makes stressed-out caregivers even more reluctant to ask for help.

In a vast majority of cases, caregivers are part of the “sandwich generation”; still working and raising their own families, while caring for an aging loved one. Caregivers often suffer from tremendous feelings of guilt because they are being pulled in too many directions, having to care for their own families and the additional needs of an aging parent or grandparent. You’re probably feeling you’re not doing a good enough job or…There just isn’t enough to go around; time, energy, money….

Do you:

Feel guilty that you can’t spend enough time with your family?
Resent that you don’t have enough time for yourself?
Feel guilty that you don’t have enough time to help your aging loved one?
Sometimes resent all the demands on your time?
Feel guilty for resenting the people who rely on you for help?
Find yourself losing focus at work?
Feel depressed or tired all the time?
Feel guilty for considering outside help?
Feel bad asking for help?
Feel helpless?
Sometimes lose your patience with your loved one?
Feel like you’re alone?
Wish you had others to talk to who understood what you’re going through?
Just need a place to vent once in a while?
Need some ‘me time’?
Feel guilty for resenting all of your responsibilities?
Sometimes fantasize about running away?

If you are a caregiver, chances are you have experienced some (or all) of these. It’s normal to feel overwhelmed, inadequate, frustrated, impatient, resentful, stressed (the list goes on)….

So what is the best way to cope? How can caregivers make peace with the all of demands of life, juggling work, family, and caregiving, yet avoid making their loved ones feel like a burden? How can you do it all while still maintaining your sanity? The good news is there are lots of resources to help. Here are just a few to get you started:

Reach out to organizations like:

The Alzheimer’s Organization (www.alz.org):

Help is available 24 hours a day, 7 days a week 800-272-3900. The Alzheimer’s Organization can help you find caregiver support groups, refer you to helpful services, provide helpful and educational resources, inform you of the latest advances in treatment, and more. Reach out and give them a call. They can refer you to local services, local support groups, and generally help point you in the right direction.

The Area Agency on Aging (http://www.eldercare.gov/Eldercare.NET/Public/Index.aspx):

The AAA is an all-encompassing agency that can help provide a myriad of services for the elderly and disabled, based on the needs of your loved one. They can assist with (services will vary by location) in-home services, transportation, home repairs, handicap accessibility issues, caregiver support, meals-on-wheels, and more. To find out what services are available in your area, and how to apply, contact your local AAA. Visit the website to find your local office.

Online Support Groups (www.dailystrength.org):

With limited time, online support groups can also be tremendously helpful. There are many available and they are easy to find. Simply Google the term ‘online caregiver support groups’ and you can find any number of online communities, diagnosis-specific groups, and more. Beware of any site or group that charges a fee. Most legitimate groups will not charge anything to participate. www.dailystrength.org is just one online site that allows you join caregiver support groups or even to create your own, free support group based on your specific needs. http://www.dailystrength.org/c/Caregivers/support-group

Remember:

You’re not alone
People want to help. Just ask and be specific. (shopping, errands, respite, cleaning)
Don’t be afraid to speak up about COVID safety when others do offer to help, including wearing a mask & hand-washing
Taking care of yourself is priority number one!
If you can afford it, hire help, (cleaning, companions, home health)
Have faith. Everything happens for a reason.
You are doing the best that you can.
Do everything with love.
You don’t have to be perfect.
Small gestures make a difference. If you can’t visit as frequently as you’d like, call. If you can’t call, send a note or card.
Be grateful for the time you do have with your loved one. Understanding your time together is limited will help put things in perspective for you.
This too shall pass.
Your efforts have an impact. What you’re doing matters.
You’re doing a great job!
Your efforts are appreciated.
You are an inspiration.
Don’t be a martyr. Ask for help. Even once in awhile.
Make time for yourself.
Time is limited. Love is not.
You are your biggest critic. Nobody is judging you.
Find support groups, either locally or online. Nobody understands like someone who’s been in your shoes.