I hated my mother’s wheelchair. It was heavy, cumbersome and crazy difficult to get in and out of my SUV. I was worried that the time was coming when I would not be able to handle it by myself and it would curtail our visits to family, going for a ride or to dinner.
Yet, it was this wheelchair that set off my first major meltdown after mom died. I handed off the wheelchair to a young man who works at a non-profit that refurbishes medical equipment and burst into tears. The poor guy didn’t know what to do, so he quickly said thanks and wheeled the chair away.
All I could think of was “I’ll never take her anywhere again.” Suddenly, her death was real to me in a way it had not been before. I’m grateful I was with a friend who had lost her husband to cancer and understood my outburst. She did not try to make it better, she just quietly said it’s ok and let me cry.
Grief and mourning. They are such personal experiences and every one of us brings our own journey to the comfort we offer and to the expectations we have about when the person grieving will feel it the most.
Friends did not want me to clean out mom’s room alone and I’m grateful to them for their help. I (and they) thought cleaning out her room would be hard, and it was, but I was in autopilot mode and it was a distraction between her passing and her services.
I and others thought the holidays would be hard, so I accepted invitations to be with family on Christmas Eve and Christmas Day. Those days were hard. Harder though was the relief I felt that I didn’t have to plan and run around trying to make Christmas as “normal” as possible for us. After all, this would be the first holiday in 64 years we were not in our family home and both mom and I were dreading it.
Relief is such a complicated emotion in caregiving. We never wish for our caree to die, but thoughts of what life would be like if the caregiving responsibility was gone is normal. I would be lying if I said that I did not think about what I would be able to do if caregiving was not such a big part of my day. It felt selfish to look forward to a time when I don’t have to factor another person with high needs into my daily life.
The truth is, it is normal to want a life independent of our caree’s illness, needs and our scramble to make life as much like the earlier years as possible. After all, freedom from the responsibilities is something that we dread and yet long for. It is no wonder that experiencing relief is one of the many complex emotions tied to caregiving.
By the same token, feeling relief when the person you are caring for dies is not something many people expect or understand. I am grateful that a colleague, Denise Brown of The Caregiving Years Training Academy introduced me to the term GRELIEF (grief relief), through an article in the Washington Post.
Feelings of relief are common for those who have been involved in caregiving for a person who dies. I do have feelings of relief. It doesn’t make the loss any less difficult and it doesn’t mean I don’t miss mom every day. It is not even a stage of mourning that I am comfortable admitting to. It may be common, but I feel guilty for feeling relief and I should not. We need to normalize talking about all the feelings of relief tied to caregiving and not feel guilty about having those feelings.
And I am struggling with how to continue my work now that mom is gone. It doesn’t feel like our story is finished and I want her legacy to continue. I know there are lessons to be learned in this new stage. I know there are people and resources that will help during your caregiving journey and I want to continue to share them with you. Bear with me as I sort this all out.
Note: the picture is of the stairs I used to get my senior dog into my car sitting on top of my mother’s wheelchair for the article: When caregiving worlds collide.
Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.
Deb is the author of “Your Caregiver Relationship Contract and “A Relationship Contract for Dementia Caregivers.” Your Caregiver Relationship Contract is available in both English and Spanish. It explains how to have an intentional conversation and the how unspoken expectations can cause problems during caregiving. A Relationship Contract for Dementia Caregivers explains how important it is to learn how your person wants to live their live out and how you, the caregiver is the most important person in this relationship, giving you tips and tricks for this journey.
Click here to learn more about Your Caregiver Relationship Contract or here for the Spanish version: Su Contrato de relación como cuidador de un ser querido. Click here to learn more about A Relationship Contract for Dementia Caregivers.
Deb is available as a caregiver consultant. She will answer the question: “Where do I start?” and find the resources to alleviate your stress. If you would like to invest a half hour to learn how she can help you, please contact her at: Free 30 minute consulting call