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Dementia Support Group for Caregivers with Bill Cohen
Cohen Caregiving Support Consultants, LLC

Anticipatory Grief, Then...

Relief and Recovery
 

Hi, again. I hope this finds you in good health. I have a story about how I said goodbye and dealt with my grief during my mom’s final weeks.  This memory was inspired by two friends and support group members whose loved ones are in their last days or weeks.  And, I recorded it for an upcoming When They Forget podcast, for the two sisters, Jennifer and Debbie, whose mother passed away recently. 


During her last four years, my mother was in memory care in Southwest Portland, Oregon. As her disease progressed and her health deteriorated, mom went on hospice care in late 2012. 
 

My wife and I knew that we would need something for us to recuperate and grieve after our emotional and physical ordeal. So, several months in advance, we planned a Costa Rica trip. We figured she had only a few weeks left. However, she hung on several more months. 

 

Have you experienced what is called anticipatory grief? Your person living with dementia is still with you but you know you are losing them. You have no idea how much longer it will be, and they resemble or act less like the person you knew and probably loved. This is one of the more difficult parts of your journey and it may help your grieving later on. Although everyone is a bit different, you will, of course, be sad at the end. 

 

During this whole time, I worked a full time job, with a micromanaging "boss from hell", statewide travel, and a 35-mile commute, while mom’s care community was about 15 miles in the other direction. I’d often go directly there, after working a 9-hour day, in afternoon rush hour traffic. Fortunately, my aunt helped care for and spend time with her sister as well.

 

In early 2013, I went on FMLA and was with mom almost daily and often overnight the last few weeks. Then, the facility got hit with a norovirus and quarantine, although they allowed us to visit mom in those final days. On top of everything, I was recovering from an inflamed disc in my back!  Just a little stress...

 

On a positive note, I had made all the final arrangements about 18 months before, which my aunt could handle if necessary. As our long-planned trip approached, mom’s strong heart and apparent will to live kept her going well beyond our expectations despite Alzheimer's effects. We assured her that all of us would be fine, we loved her, and she could let go. Since she no longer communicated and was barely responsive, we had no idea what she understood.  But we assumed she did on some level.  
 

On February 4, 2013, her passing was clearly imminent. My aunt left that late afternoon as I arrived. I’d been sitting in a chair next to her bed for the last couple of weeks, trying to comfort her and get some sleep, which sure didn’t help my sore back. A nearby resident passed away, and knowing that mom could go anytime, her roommate was moved temporarily across the hall. The staff remade her bed for me so I had moved away from her bedside. In addition, a friend and my first support group facilitator suggested that my brother call from out-of-state and let mom hear his voice and say he loved her. We believe that my aunt’s leaving, my moving away from her bedside, and mom's hearing my brother’s voice, on some level, let her know it was time to let go.

About 1 AM, as I lay nearby, I noticed that her labored and raspy breathing had stopped. I put my hand above her mouth and nostrils, felt no breath, and knew she was finally gone. 

 

No, I wasn’t upset. As I described before, I had experienced anticipatory grief and said goodbye to her long before that night. My sole thought: it’s over. She’s finally at peace. And I breathed a deep sigh of relief and kissed her forehead. 


As the hospice and memory care staff came to take care of her body, I wrote an email to family and friends. It felt surreal. After so many years, I could finally let go and begin to heal. 

 

Sheila passed away two days before our departure for Costa Rica. For once in her life, mom was "on time". 

 

The trip was exactly what I needed: restful in a beautiful place with some outdoor activities like ziplining, good company, wonderful food, and gorgeous weather. Even my back had healed enough. I returned to Oregon as refreshed as could be expected. Sad but relieved. 

 

We had a small, private ceremony after we returned and a celebration of life a couple of months later. 

 

Yes, it was painful. However, everything I’ve done since then has been in my loving, creative mother's memory as I turned my personal loss into my passion.



Thanks again for your time and for joining my community. Please feel free to comment, ask questions, make suggestions, or unsubscribe if you prefer.


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Caring Regards,
Bill Cohen
Certified Senior Advisor (CSA)®
Cohen Caregiving Support Consultants 💜
 
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Dementia Support Group for Caregivers with Bill Cohen
Cohen Caregiving Support Consultants, LLC