Waiting to Exhale – The final stage of caregiving

My friend graciously allowed me to interview her on camera the other day about her caregiving experience. She shared how she began her caregiving journey as a long-distance caregiver, trying to arrange for care for her mother who lived all the way on the other side of the country.

Frustration and increased needs led her to move her mother to her home town. Ultimately she has placed her in a care setting, and visits her several times each week, remaining incredibly involved in her mothers care.

She talks about experiencing the loss of her relationship with her mother, and finding herself struggling to get her mother to bathe – her mother, who always prided herself on cleanliness (next to Godliness, you know).

She talks about how difficult it is to share what sets most heavily on her heart: her readiness to say goodbye to her mother, and to finally breathe a sigh of relief that her mother no longer struggles but is at peace.

She’s talking about welcoming her mother’s death.

No wonder she hesitates to share her feelings about caregiving.

No wonder she believes that only those who have been there will truly be able to relate.

I remember my aunt who cared for my grandfather to the end of his life, sharing a story that made us laugh and cry along with her. My grandfather had been barely responsive for days when he finally seemed to slip away. My aunt tiptoed out of the room, thinking, “At last; peace for both of us,” and called 911.

The ambulance crew loaded Grandpa onto their gurney for transport to the hospital where he could be pronounced dead. On the front steps, one of the crew tripped and bounced my grandfather – who promptly took a deep breath, and began to breathe again. My aunt simply cried.

For her, this event delayed the inevitable moment when her round-the-clock work would be finished and my grandfather would be at peace.

To someone not in the end stages of caregiving this might seem callous and horrifying.

To the caregiver who lives in that place of end-stage care, it’s entirely understandable. They can relate to the pain of watching a loved one slip away, one tiny bit at a time, wondering when – at last – it can all be over for both of them.

That’s one reason why I encourage family caregivers to connect with other caregivers, any way they can. Join a support group – join an online chat group – take a caregiver class. Connect with others who share your journey.

You won’t have to suffer in silence like my friend who believes that no one will understand how deeply she’s longing for the opportunity to finally exhale and say goodbye to her beloved mother.