Major Loss - Dementia
We weren’t told the severity of Mom’s recurring cellulitis in her leg. By the time my sister visited Mom in her care facility, she had open wounds from her knee to her foot. Her foot was swollen to three times its normal size. We later found out that instead of elevating her leg on the $8000 hospital bed we purchased for her (the one that does everything but drive itself down the hall), she was living in her wheelchair by day and sleeping in it during the night. Her leg was never elevated.
After yet another ambulance ride to the ER, she was admitted with severe infection having set in. By the time I arrived, Mom was very disoriented. She didn’t even realize she was now a hospital patient. I began speaking to her as I would a distraught toddler, whispering in soft tones while gently hugging and soothing her. Once she settled down, we had a ten minute “normal” conversation - the kind that fools you for a minute that maybe everything will be alright. Then it’s as if a curtain falls and once again she is a young girl asking for her parents.
Mom prepared well for her retirement, yet during her confused state, she worries about having enough money constantly. Frequently, she demanded to leave the hospital because she didn’t believe she could afford to stay. During the week in the hospital, she went from disorientation to sobbing like a small child, to screaming and punching at me while attempting to climb out of her bed, setting off all kinds of alarms. After settling down again, we would have another brief coherent conversation, that once again deteriorated into her loop of asking over and over again the same five questions.
I’m not even sure while in this caretaking survival mode, that I realize how triggering this time of grief is for me. The nursing staff would continuously ask me if I was okay. Finally, toward the end of the week, the charge nurse took me aside and gave me a huge hug, telling me I was doing the very best I could with my mom. She reminded me that to care for Mom, I must take care of myself first. Because she also was dealing with a parent with dementia, she was able to relate to my worry and guilt of feeling that I’m never doing enough for Mom.
For the past five years, I have been experiencing anticipatory grief for my mother. Although she is here in body, her kind, gracious and brilliant essence is no longer with us. Sometimes the grief, guilt and sadness associated with this type of loss are more difficult to manage than the actual death of our loved ones.
Once I was back home in Santa Fe, I felt such fatigue on so many levels. Caretaking at this level is certainly not for the faint at heart, is it? Are you experiencing anticipatory grief for someone in your life?