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Life After Caregiving

After spending so many years trying to let go of a past of unresolved issues between family, I finally learned how to be more objective as Mom’s caregiver by compartmentalizing life, pushing things down or aside. The bad thing about suppressing uncomfortable memories is the good memories are buried, too. That is, until the time comes for our loved ones to pass on to another dimension. In the months leading up to Mom’s journey end, I was surprised at the particular memories that slowly came to mind. The good times I had forgotten about because of the anger I felt during the early caregiving years made it much harder to let her go when the time came.

Looking back, I could see myself nagging Mom to do more and be more, just as she had done to me during my adolescence. It’s incredible how much I could finally understand as an adult through the eyes and heart of a caregiver. I can only imagine that at some point during her years parenting me, Mom felt inadequate to guide my siblings and me through life.

To see the strong survivor I grew up with become so lost and forgetful was scary. I had no problem stepping in to protect her from the world that wanted to take advantage of her until I learned about the stages of Dementia and where our journey was headed.

We got the first diagnosis during stage 4, typically when families face the reality that something is wrong with their loved one. It was difficult for a teacher who spoke four languages and taught ESL classes, among other subjects, to see the changes. It was difficult for all of us to accept the changes when we did not understand the process initially. It was even more challenging when we stepped into care emotionally from a different mindset.

We had two to three years to adapt between the stepdown and the earlier stages. Mom had time to accept limitations within her abilities, and we adapted poorly to losing our freedom. The constant feeling that life was going in a direction we were not ready for created quite a bit of frustration and fear. The fear led to even more anger that fueled the family drama. Once again, looking back, I did not understand the anger until I connected with the source of what gave birth to my angry part in the first place. The one who steps in to protect me from pain and suffering by pushing others away.

I had seen Mom push Dad away for years before filing for divorce. I never thought I would do the same, but I did because it was easier to close Mom and me off from others than to allow my heart to break even more. There were so many similarities in our reactions to the world until I decided I did not want to find myself living a life with Dementia, too.

When Dad passed six years ago, it started Mom’s breakdown that tipped the scales to her finally deciding to move in with me. She became my distraction from grieving Dad with other family drama. Mom also became my purpose to become a proactive caregiver. I had the choice to stay in the corporate world to keep building a financial career, but I felt compelled to take a leap of faith and step into her world of mixed Dementia. Even though I felt chosen to be her essential caregiver, I began to grieve as I struggled to relinquish my corporate identity.

I went from feeling inadequate to being Mom’s caregiver to finding my voice. I prayed for God to light the path for me so I would not get lost in the process, but sometimes, I needed to get lost before I could see another way around what felt impossible. Perseverance came as my adolescent memories surfaced from Mom telling me, “Where there’s a will, there is a way.”

Sadly, grieving makes it hard to see the way. I figured out where my angry part came from and let her step aside to become a compassionate caregiver for many years. Yet, during Mom’s winddown and final days, I felt let down by the hospice company that was supposed to be present. The more excuses they tried to sell me for their support failure, the more that angry part came out. Only this time, I recognized her as part of the grieving process. Mom’s death and our experience of it could have been entirely different.

I learned that when dealing with issues we don’t want to, or that hurt us, it is sometimes easier to cope with by exploding the energy outward constructively. I accepted that I was enough to be Mom’s guardian eventually, but others were not enough for us in our most incredible time of need.

I was angry at some home health and senior services that promised one thing but delivered far less. I was angry with the poorly managed assisted living and memory care communities that knew how to manipulate regulation before finding Mom’s third and last home. I was angry with myself for not hiring a death doula when the time came and at the hospice company for not being the stewards of death they claimed to be.

All of this anger did not help me grieve any less because I eventually got sick and needed time to heal. During the downtime, I realized it was the first time in over two years that I unplugged from the world to feel all that happened. No analyzing or researching did the trick like it used to. I also recognized another part of me, the fear that usually stands behind the anger, but this time was standing side-by-side because the questions started to flood my mind.

What do I do next?

What level does my advocacy go to next?

How do we fix such brokenness in systems designed to help people but exploit or fail them?

Mom was tired of the fight and was ready to go home. Rather than saying my job as a caregiver is over, I acknowledge two things because it’s not truly over.

1) We never stop being caregivers because we must continue to care for ourselves. Our well-being never stopped being important, but we have minimized our feelings to avoid feeling selfish or allowing the grief to wash over us.

2) Sometimes, anger is a good thing because it does get things done. Mom always said, “Where there’s a will, there is a way,” and that is where my anger is appropriate. The will to make a difference and create a culture shift for caregivers. Instead of pushing others away, I want to unite us because aging is as inevitable as death and taxes.

It’s time for change. Caregivers need real support, and they need it now.

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