after caregiving


(from my Sixty and Me article on After Caregiving)

Being a family caregiver can be both a full-time job and life’s sole purpose during its duration. One thing is certain, though: The cycle of life continues, and loved ones die.

What then? How do you cope with the void? How do you define a new purpose or reinvigorate an old one? Chris MacLellan, the Bow-Tie Guy, helped me sort it out.

The story of Chris and his partner, Richard, was chronicled as a 2015 Pulitzer Prize winning story in the Sun Sentinel, Florida. It is a story of healing and hope and has been read by almost half a million people. We spoke during an interview for my Caregiver Summit about the issue of what happens after caregiving.

Combating Isolation

It is necessary to set up your post-caregiving life during the caregiving itself. For example, oftentimes family caregivers become isolated. They do not see their friends as much. They turn down social invitations. And in such situation friends are not sure what to do or say.

As those bonds weaken, it takes an effort after the caregiving is over to reestablish those connections or build new friendships. For Chris, after the caregiving was over, the isolation intensified.

Caregivers Are Not Prepared

Talking about the end of a caregiving journey is not dissimilar to talking about the beginning. In both cases, people are thrust into new roles and are woefully unprepared.

Chris says that simply being aware that your caregiving journey will end someday is an important first step. Just as the caregiving hits you over the head, so does the void it creates when it is over.

Getting to Acceptance

Caregivers experience all kinds of emotions when the journey is over. There is relief. There is sadness that the life you once had is gone. There is the guilt of moving on. It can take time to get to acceptance.

For me personally, acceptance came after I took up the offer of grief counseling from the hospice where Mom spent her final hours. For Chris, it came through advocacy and writing a book. Each of us has found our own way of processing.

Maybe you keep a journal and can find comfort in that. Or you immerse yourself in a cause that is related to what a loved one went through. Acceptance is different for everyone. It will happen for you in its time.

Take Care of the Person in Front of You

We try to teach caregivers about taking care of themselves while they are still on the journey. Many do not. In fact, a large number of caregivers predecease the person for whom they are caring.

That was the case with my sister. If you can’t learn the lesson during the caregiving, heed it afterwards. Take stock of your overall well-being. Take care of your physical and emotional self.

Support Needed

Whether you follow what I did and seek grief support afterwards or continue to attend caregiver support groups, it is essential to talk with others.

Unfortunately, there are few, if any, after-care support groups, so often we are left to our own devices about how to cope, where to turn and with whom to talk. The needs of the after-caregiver are different, yet they need to be met.

Health providers have a role in this support. Often, caregivers are ignored by health providers. Statistics show that one in three providers will ask for family caregiver input during the caregiving, and only one in six will ask the caregiver themselves about their own health.

This approach needs to change on many levels and for many reasons, not the least of which is that talking to caregivers improves quality and safety.

Luckily, my physician recognized my caregiver stress early on and addressed it with concern. Now, with Mom gone, he still monitors how I am coping. Choosing the right physician – not just for mom or dad, but for yourself – is critical. Shop around.

Prepare Now

The minute you realize you are in a caregiving situation, you need to prepare for the end of it, according to Chris. In his case, his partner was advocating for Chris to take care of himself.

If you want to watch my interview with Chris about after caregiving and also see 51 other experts, take a look at our virtual Caregiver Summit.