“Webster’s New World Dictionary defines guilt as a “painful feeling of self-reproach resulting from a belief that one has done something wrong or immoral.”
Those are strong words, especially when used to describe someone who cares for a family member or friend in the last season of life. Guilt is an ugly emotion that, unless resolved, rarely results in anything good or sustaining. Guilt in caregivers often comes from within, but can also be imposed on another person. It can be imposed by the person who is ill and requires care. It can be imposed by friends or relatives. It can be imposed by society and societal expectations. Wherever guilt originates, it can be devastating to a caregiver’s emotional well-being.” (Janna Kontz)
Last month I wrote about my grandmother who suffered from Dementia and Alzheimer's and how it changed our family forever. I ended it by thanking caregivers because so often they are forgotten. Well, my grandmother had a team of folks that contributed to caregiving needs. It first started with my mother. When my grandmother was first diagnosed, my mother was her full-time caregiver. Life as she knew it had to change. She no longer had the freedom she once had before Dementia took over my grandmother. Any errands that needed to be done had to be completed before the sun went down and she only had 2 hours to complete them before she needed to be home with my grandmother. Why before the sun went down? Because Sundowners would kick in and that’s when the mood swings and personality shift that happened from the Dementia would kick in for my grandmother.
Caregiving had started to take a toll on my mother’s mental. She was sad and upset all the time. I would go with her to run errands and watch her cry in the parking lot because she had to rush home and felt like she had no time for herself. She would get angry with herself for becoming sad about it because it was her mom. That’s what she was supposed to be doing…but it was still hard for her. As the disease progressed my mother who was also working full-time had to bring in additional help. I tried my best to step in and help when I could because I knew she just needed a break. There were a few church members who loved to sit and hang out with my grandmother so my mom could get away and have some self-care time. The problem is she would be so busy worrying about my grandmother she was not able to really enjoy the time she had to herself.
As time went on, the physical part of caring for my grandmother became too much for my mother to handle. She had to make the decision to move her to a home that could give her 24/7 care. This decision was one of the hardest things she ever did. That was her mother and no one could take care of her like she would. She was worried because of all the horror stories you hear about facilities that care for the elderly. She felt guilty because her mom took care of her and it was her time to take care of her mom. She felt guilty when she would leave the house and leave my grandmother home. She felt like she could not enjoy life while her mother was suffering with this disease. She did her research and found a home where my grandmother would spend her last days. This home cared for my grandmother as if she was their family. They would throw birthday parties for each person in the home. They would go all out with food and decorations. I just loved how they loved each one of their clients individually. My mom would go and visit my grandmother multiple times a week, but during those times she could not make it, she would cry her eyes out. She felt bad, she was disappointed in herself, she was angry with herself. I would have to remind her that if my grandmother did not have this disease she would be out living and that’s what she wanted for my mom. There were a lot of people who were upset that she put her in a home. Everyone's focus was my grandmother, and never once thought about the toll it was putting on my mother. It often made her question herself and that was not fair for her. Having to watch her go through the pain was a lot for me. I wish there was a way to take on some of the pain or wipe the guilt away from her. Instead, I tried to be there whenever she needed it or give her some time to herself.
My mom had a conversation with my cousin whose mom is also suffering from Dementia. She was very upset with herself because she felt like she could/should have done more for her mom before the disease took over. She feels guilty for not visiting as often as she thinks she should or how much others think she should. It has been hard for her…having to visit your mom and her not being the same person you knew her as. She feels guilty for “moving on” with her life while her mother is in the home. She hates that she did not recognize the signs early on. As my mother told me about this, I just wished there was a way to ease some of the pain my cousin feels. I hope my mom remembered to tell my cousin to join a support group for caregivers. I know it helped her.
The guilt of being everything that everyone thinks you are supposed to be as a caregiver can be so hard. You already put the pressure on yourself to care for your loved one like nobody else would and adding that extra pressure of what others think does not help the situation. I just hope that people learn to give some grace to caregivers. It's hard enough trying to step into that role of caring for your loved ones without the added drama from others. I have seen so many families torn apart from lack of support for the ones who take on the role of caregiver.
Finally…to ALL caregivers: Be kind to yourself and don’t take on the guilt. Just do your best…but remember you can’t do it all…just take it one day at a time.