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.