Gone are the days when I naively thought changing careers to be a caregiver would be fun. The reality of why I needed to step into my mother's world challenged by the limitations from living with Dementia made me reflect on how we could have prevented this from happening, but didn't.
Instead, we laughed, avoided her, and ran from the inconveniences that her needs presented. In my early years of caregiving, I heard others talk about how rewarding their role is, and my face froze with a smile because on the inside all the little parts of me were yelling, "Lier!"
It took many years before I could see the blessings from experiencing Mom's decline has been for me. Where I felt a loss in my identity as an accountant initially, I later gained a caregiver advocate identity. I can see where God has helped me use my ability to recognize trends or patterns as an accountant to grow my sense of curiosity. My need to learn more took my stubborn nature on an adventure to encourage and create a cultural shift toward how the world views Dementia.
Stepping into Mom's house in those early days to be greeted by the stench of urine, rotted food, and even gas was not something I connected to aging or Dementia. Understanding why Mom was depressed after the divorce of a 37-year marriage, to the point of not caring about her environment, was alarming. It was also one of many excuses I told myself to look the other way because "this phase will pass."
If only I could encourage her to be more active. If only I could motivate her to clean more often. If only I could get Mom back into her beloved flower beds. There were so many 'If only' moments before I started to feel resentment and see a lazy woman wasting years of early retirement. The acceptance of rolling up my sleeves to do whatever Mom lost the will to do did not come lightly.
My identity evolved the less I analyzed or judged and started to see Mom as a human being doing the best she could with the coping mechanism tools she was taught. And that is when my curiosity ran to gain a better understanding of genes, epigenetics, and lifestyle choices. Rather than trying to get Mom to focus on what she could still do for a better quality of life, my focus shifted to why she claimed to be a survivor but clearly was not thriving like one.
Caregiving is not an easy job when you must go beyond your loved ones' needs and consider their desires, understand their mindset, and embrace who they used to be. You can imagine how difficult this may be for our older generation that does not share their feelings as easily as our younger generations. Sure, they will share their opinions about politics, news, and especially family drama. Until you can get them to open up about their childhood dreams, fears, challenges, or family values then you don't get to know who you are caring for. That person changes as their brain deteriorates more or they lose their will to thrive.
It's obvious to you that is your parent or spouse, but that's who you knew them to be and who you see on the outside. On the inside, they are reverting to someone long before you ever met. Each time I stepped in to Mom's house and quickly grabbed a trash bag to clean, Mom responded in roughly the same way, but always with, "I'm fine."
In the moment, I heard those words and immediately thought, "No, you're not! Let me help you." The patterns made sense to me later when I had a chance to talk to one of Mom's older sisters. She painted the picture of who Mom used to be as a child, her teen years, and the traumatic life events she endured. Then I started to feel guilty because I finally understood why she raised me to be self-reliant. Trauma taught her that you can't depend on others for anything, not even your own family.
As I started to feel more resentment, rejection, and guilt I started to notice another reason why caregiving is not easy.
The next time your loved one makes you frustrated, annoyed, or offended - stop and place a mental mirror in front of yourself. Let your curiosity flow. Before you pass judgment on what a pain in the neck their being, ask yourself:
"When was the first time I felt frustrated by them?" (or this kind of frustration by anyone else)
"When was the first time they annoyed me?" (or this kind of annoyance by anyone else)
"When was the first time they hurt my feelings?" (or by someone else)
Doing the tasks to assist with activities of daily living can be physically stressful on your body. When you are doing something for them it is an action that has a start and finish point.
When you are doing a task that makes you feel something that you either have not felt in a long time or only feel because they are reminding you of an old unresolved issue then you might be triggered and not know why initially. The memories of frustration, anger, annoyance, neglect, abandonment, ridicule, or any other hurt feelings surface and charge the present moment as the universal nudge that it is time to deal with the emotions. It's time to heal and let go.
This process is not an easy one and adds to the complication that caregiving is already, but it is cleansing before the end.
During my childhood years when I was learning to keep my room clean, Mom said, "Everything has a place." After I so cleverly shoved all my dirty clothes, toys, and even school books under the farthest corner of the bed, Mom got down on the floor and dragged it all back out. Once again, "Everything has a place." Busted! No outside playtime privileges until my room was clean. She was SO mean back then.
Well fast forward to walking into her house for a visit, and finding all the empty food containers, blankets, dirty clothes, and junk mail spread throughout the living room. In my mind, the distant memory of "Everything has a place" came flooding through so my helpful intention was also filled with anger because she knows better. She knew everything has a place and trash in the living room is not acceptable.
Moments like this were peppered through my early caregiving years. Adding the knowledge of what Dementia is and how it changes our loved ones helped me to see her as a human being living with challenges I could not relate to. Sometimes it takes time to see your pain in the mirror because we work so hard to bury or forget it so we can move forward in life. However, the pain is temporarily buried and waiting for you to learn from it, transcend it, and then let it go.
If you are not provided a healthy coping mechanism of how to deal with the feelings that surface as a caregiver, then you stress more which exposes you to chronic illness including Dementia. Healing your heart to heal your mind is the first step in becoming a proactive caregiver.
Caregiving is not an easy job by any means. There are opportunities to learn and grow if we are willing to accept the challenge.