The Ambiguity of Grief


There are 5 stages of grief: denial, anger, bargaining, depression and acceptance. However, when a something like dementia is involved, caregivers may experience ambiguous grief or unresolved grief.

Ambiguous loss is different from the loss and grief surrounding a death. Closure is not possible, and your grief cannot be fully resolved while the person with dementia is alive. My mother Jean has had dementia for 16 years, and the first five years she was misdiagnosed while she lived with me. For the last 11 years, mom wanted to be placed.

She was told in 2005, at age 63, that she had less than three years left and was trying to protect her children. This saddened me, and I had no choice but to respect her wishes. I now understand why mom made such an unselfish decision, but that is another story. Mom is well into the later stages of the disease, but is still hanging in there. Recently she had another bout with pneumonia and pulled through. It did advance her dementia—she now constantly chatters, which makes it very hard to eat and drink. A new medication has helped some.

Over the years, I have grieved many times as mom loses more and more to the disease. I find myself stuck in limbo. I do enjoy every moment we spend together, whether it's singing her favorite tunes (the one thing mom can still do), or just holding hands and talking to her even though the conversation is one sided, but I am in a continuous battle with the grief. I have read that acknowledging the disease helps you to move on, but I am so sad. It’s sad to see her confined to a wheelchair, to see that her food is puréed and she is spoon fed. I am sad for all that we have missed together throughout the years. The pain cuts to the very core of my soul.

This may sound trivial: I need to shop for a couple of dresses and I keep putting it off because we used to always shop together. Mom was a "fashionista," and we had so much fun on our shopping sprees. Now it just feels like a chore. I guess that would be the depression stage of grieving. Then there is the guilt that comes along. "How dare I think this way? Mom can't do anything, and I should feel thankful I can go to the store and buy the dresses." Instead, I'm having a pity party. I know mom would not want me to feel this way.

All along her journey, mom accepted her disease and held her head up high. I should be holding mine up too, so I will go and get those dresses.

This is just one tiny loss I'm expressing here. I can still see and touch her, but the mom who was my best friend has slowly faded away. She is still physically here, but the disease has taken over her mind and body. Mom knows me, and I am grateful since many of my friends’ loved ones no longer recognize them.

I could go on and on, but I guess it boils down to the fact that I miss my mom, my best friend. I miss sharing our lives together, whether it's something big or small. My mind has accepted and acknowledged mom's disease, yet my heart still mourns for her. Grief can be ambiguous for sure.

Growing up in a close family, Michele DeSocio learned about the power of love at a very young age and still maintains that she is happiest when with her loved ones. In 1999, she became caregiver to her mom Jean DelCampo. Michele found her voice as an advocate volunteering for Memory People, an online support and awareness group for dementia.

Memory People

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I totally understand your feelings. My Mom was so amazing, independent, very talented, so stylish and had a wonderful sense of humor. She lived with us and helped me raise our two sons. When it became apparent she was slipping into dementia at 89 or so, she became angry all the time, not herself at all, and thought we tried to keep her home it eventually became un-manageable. Placing her in a facility was the hardest thing I ever had to do, she was still walking, talking, and sometimes seemed perfectly fine, until night would fall... we watched her gradually lose her cognitive ability, toileting functions, confined to a wheelchair, wouldn't eat or drink. It's a long, slow, awful death... she passed away this August 8th, and I was actually relieved for her sake, she deserved so much better and to die with her dignity intact. She did hug me at the end, and squeezed my hand, tried to smile at all of her loved ones, she knew she was about to be freed...the nigth after her funeral, she sent me a shooting star, and again that weekend... teling me she's fine and better off where she is... Your Mom deserves peace, as do you.
Life is a journey to the next life. After a life well-lived doing the will of God -- such as lovingly caring for a frail parent, though difficult and wrenching--you can look forward to being with your mom again, and forever, with no more sickness or death.
I totally agree with this. I have been through all and am now in the acceptance phase. I have decided to put him in a home after 10 years of h*ll. Actually only the last 5 have been h*ll. Before that we were coasting along together, still able to communicate and deal with the daily problems. Now there is no dealing. It just is what it is! There is no relief from the constant daily little bits of grief every day! I want it to be over for him. It is too hard to witness his daily loss of activities. He has nothing left to enjoy! Just living from moment to moment, doing what he has to do with no knowledge of what that is. He doesn't even know when he has gone to the bathroom. His face is a blank all the time. This man I loved so passionately is gone from me. And yet he is there, needing me and not knowing who I am. It is grief for sure on both our parts. When will it be over?