What Happens When Caregiving Ends?

Learn what happens when caregiving ends and the steps you can take to answer the question, ‘what should I do next?’

For almost 8 years, I took care of my ailing mother, who suffered from the effects of Lewy Body dementia. Although I always knew she would succumb to the disease, when she finally died, I felt utterly unprepared and alone.

I became my mother’s primary caregiver after she overdosed on coumadin from a prescriber and pharmacy error resulting in a massive brain hemorrhage. After a week in intensive care, my mother miraculously survived, but the effects of the assault on her brain left her confused and anxious. Within an hour of her returning home, I knew that life for my mother would forever be changed. Within 3 months, the doctors diagnosed the Lewy Body dementia, and it was all downhill from there.

Having worked in a nursing home for seven years to pay for college, I was committed to keeping my mother at home at all costs. I was successful in doing so and she died at home at the age of 89.

Table of Contents

Understanding the Void When Caregiving Ends

For a long time, I found myself thinking, “oh, I need to go and check on mom” only to realize she was no longer here. During the day, I would struggle to find some normalcy because the tasks that consumed my time were now gone. I remember the first time I left the house and looked at the front door, realizing I no longer needed to worry about how she was being cared for or if she would struggle with me gone. With my mother’s passing, I had a huge hole not only in my heart but in my life. The void was so great I found myself saying – ‘now what’ and not knowing the answer. To this day, I sometimes still hear my mother call my name.

As all caregivers know firsthand, being a caregiver, more often than not, is all-consuming. You juggle doctor’s appointments, manage medications, handle visits from health care professionals, bathe and groom our loved one and make sure we have the supplies needed on hand. You spend hours worrying about their health, the effects of their disease, what the future has in store for them and you. So, it’s not surprising that when they die, we are left with this enormous void and consequently feel lost.

For caregivers, we experience two losses: the loss of our loved one and the loss of caregiving. And this creates two distinct voids in our lives.

According to Gary Bradt, PsyD, and Scott Silknitter, co-authors of Put Your Mask on First: the Caregiver’s’ Guide to Self-Care, caregivers typically do everything right. “Being a caregiver is such a long and winding road with turns that no one expects,” Silknitter says. “Caregiving is a never-ending test of your strength, until one day it stops, and the feeling of ‘what do I do now?’ mixed with sadness begins.”

Most caregivers tell me it sounds overwhelming just thinking about it, but having the right system in place to process and rebuild your life will help you move forward successfully. Here are my best tips on how to start over when caregiving ends.

How To Move Forward When Caregiving Ends

1. Recognize the guilt was normal

I, like so many other caregivers, have carried around my fair share of guilt. I even felt guilty that my mom would be upset with me because I had her cremated. Pretty crazy, right?

But guilt is an ever-present emotion for caregivers and for a variety of reasons. We feel guilty for what we did or didn’t do. We feel guilty because we can still function physically or cognitively or both, and they are no longer capable. We feel guilty for the anger we feel; we feel guilty for feeling burdened by our circumstances, for resenting to have to put our life on hold, for almost anything.

And then, when our loved one dies, we feel guilt because of the relief we feel.

And the problem with all this guilt is it torments us and steals our joy.

And now that caregiving is over, it’s time to put the guilt on the shelf and reclaim joy.

This guilt you’ve been carrying around? It’s normal. It’s normal to feel sadness and grief on the one hand, and relief on the other. It’s normal to think maybe you should have done more. And it’s time to see guilt for what it is – a common human reaction to difficult life circumstances.

2. Seek out support

One of the biggest mistakes I made after my mother died was not getting involved in a support group. I did have some individual bereavement counseling through the hospice agency that oversaw my mother’s end-of-life care, but in hindsight, it was not enough.

A bereavement support group often offered through churches, synagogues, and community centers should be mandatory for all of us post caregivers. If I had been smart enough to participate in a group, I would have clearly seen firsthand that I was not alone in my struggle and that my thoughts and feelings weren’t crazy but rather a typical response of caregivers everywhere.

Also, many caregivers who have been so isolated for so long find it challenging to share their feelings in an in-person support group. This is one of the very reasons I created the Recovering Happiness Post Caregiver Support Group on Facebook. It provides support, motivation, and a safe space for individuals who are no longer caregiving but provides it online from the comfort of your home.

3. Delay major decisions

The act of caregiving and managing grief takes a toll on your body, mind, and emotions. You need time to find a new normal.

I didn’t realize this as much as I probably should have. Even the grief counselor warned me about making any changes before I was through the most intense part of the grieving process. But I didn’t listen. I sold my home of 20 years and moved all within three months of my mother’s death. In hindsight, it was a huge mistake. And, as a result, it made grieving that much harder for me.

Give yourself at least a year or as much time as you feel you need before you make any significant decisions, such as moving, growing your family, changing jobs, or entering a romantic relationship.

This cushion of time prevents you from making an emotional decision you later regret and gives you the space to rediscover yourself.

4. Learn to start taking care of you

Let’s face it, as caregivers, we were terrific at taking care of our loved one. But if we’re being completely honest, taking care of ourselves took a major back seat. And if we don’t want to admit it to ourselves, the data speaks for itself:

23% of family caregivers caring for loved ones for 5 years or more report their health is fair or poor.
The stress of family caregiving for persons with dementia has been shown to impact a person’s immune system for up to three years after their caregiving ends, thus increasing their chances of developing a chronic illness themselves.
72% of family caregivers report not going to the doctor as often as they should.
55% say they skip doctor appointments for themselves.
63% of caregivers report having poor eating habits than non-caregivers.
58% indicate worse exercise habits than before caregiving responsibilities.
40% to 70% of family caregivers have clinically significant symptoms of depression with approximately a quarter to half of these caregivers meet the diagnostic criteria for major depression.
11% of family caregivers report that caregiving has caused their physical health to deteriorate.

It’s time to start making yourself a priority and scheduling those long-forgotten doctor and dentist appointments, the haircut you’ve been dying to make time for, or that manicure you once religiously got each week. Do something today for yourself like get a massage or sit at a cafe and enjoy doing nothing while sipping your favorite latte. You’ve earned the right to be happy and enjoy yourself.

Check out my 7 Day Self-Care-Giving Challenge if you need a little push to make yourself a priority.

5. Reach out to the people that matter most

It’s true that for many caregivers their social circle becomes super concentrated to a small group of people. Often times it’s our own lack of communication with our friends that drove the wedge between them and us. You were lonely, but you didn’t tell them you NEEDED their support and friendship, and now that caregiving is over, you find you miss your friends and want to reconnect. If you are feeling awkward or guilty about calling or emailing people, you may have neglected while caring for your loved one realize it’s understandable. Just put it out there honestly to your friend by merely saying something like, ‘I know it’s been a while since we talked’. Your real friends and loved ones will understand and will more than likely welcome you with open arms.

6. Welcome the extra time you have

When my caregiving journey came to an end, I struggled to know, ‘what am I going to do now?’ Since most of my care duties occurred after 5 PM and on the weekends, once I was free to live life again, I was uncertain how to fill my time. Weekends were incredibly hard because I had spent almost 8 years fulfilling my duty as a caretaker. To this day, I still struggle to fill my time with activities and often find myself sitting in my home on a Sunday with little to do. But with more insight and proper planning, caregivers can reclaim their social life and find the activities that are important to them.

One of the tools I use to not find myself wanting to participate in a social activity but find myself sitting around bored is to intentionally plan it into my schedule. The planner I use even prompts me to even think about people to connect to so that I am filling my time with the people and activities that matter most to me.

7. Understand it’s a process

Looking back, I thought once my caregiving came to an end I would pick up the pieces of my life and just start over. I learned it wasn’t that easy.

For one, I had to grieve and that took longer than I anticipated it would. Second, I wasn’t sure what I wanted my life to look like moving forward. I was pretty clear on what had to go. I sold my cleaning business and even ended up selling another blog that I grew tired of. But that left me with a lot of time on my hands and not a lot of ideas on how to fill it.

So I accepted the process and didn’t rush it. I tried on a few things to see how they felt and learned quickly if I was interested or not. The things that resonated with me I found a way to incorporate them into my life. I haven’t traveled much in my life but took a trip to Hawaii and soon realized I enjoyed seeing and experiencing other parts of the world. Now’s your opportunity to do the same things. Try things on for size and see how they fit into the life you’re creating. Do you want to get a job or maybe start a business? Do you want to stay where you are or move? Do you want to start a relationship or maybe get out of one that no longer serves you? Look at every area of your life and take an honest assessment of what you want things to change or improve.

Once that step is complete, create some long-term goals. This post maps it out in greater detail for you, but remember goal setting and goal achieving are best accomplished with a solid plan.

Most of all, don’t measure your success by anyone else’s yardstick. Move at your own pace. You’ll soon discover the life you were meant to live.

Let’s recap. Here are the seven steps you can take right now to move forward when caregiving ends:

1. Recognize the guilt was normal
2. Seek out support
3. Delay major decisions
4. Learn to start taking care of you
5. Reach out to people that matter most
6. Welcome the extra time you have
7. Understand it’s a process

More articles to help you on your journey: