Taking Care of Rita - The Back Story

For the past 18 months, I have been the primary caregiver for my mother, Rita. She is currently 93, and in very good health, but her major joints are riddled with arthritis. She walks with a rollator, uses a wheelchair often, and cannot raise her arms above 90 degrees. She has just enough cognitive impairment to think she has nothing wrong with her reasoning, but also can't make competent decisions about her life. She had a severe tib/fib fracture from her arthritic knee and osteoporosis on December 29, 2017. Surgeons placed a rod and screws in her tibia to stabilize the leg. She recovered for 2 1/2 months in an excellent rehab in Myrtle Beach, and regained her ability to walk. However, it became obvious that she would not be able to live alone after discharge. So, on March 17, 2018, I became my mother's roommate and primary caregiver. On November 15th, my son (30) David became co-caregiver by giving up his life in Alaska to help me - not because the strain is physical, but because the emotional/mental strain on me concerned him so much.

This blog is the pouring out of what I've been holding on to for the past 18 months - and if I'm being honest, a lot longer than that.

My journey in full-time caregiving began after a warning from God that I needed to get ready for a change in my mom's life and needs. He began revealing this to me while I was serving in Rwanda in June 2017. He continued to make it clear on my trips back and forth to Myrtle Beach that Fall. He gave me a clear message that I needed to withdraw from my ministry obligations by December 31, because something was coming. I warned my boss when they asked for more time commitment that I actually needed them to prepare for my departure. So when I got the call about her fracture, I was not surprised. (God knows I don't do spontaneous well!! 😉.)

My husband, children, and grandchildren have had their lives turned upside-down by this journey. But in every case, they made sacrifices in order to take care of my mother, and me. I have been so incredibly proud of them!! But the loss of attention, care and time that we have experienced will be my greatest regret during this time. Not to mention the financial strain.

The pieces of the puzzle that have made this so difficult fall into a few categories:

• Power struggle: My mother and I have not gotten along since I was 13 and started becoming someone other than who she wanted and had imagined me to be. Her attempts to control my life led to me leaving home for college and not coming back. She refuses to recognize that she impacted my brother's or my mental health in any negative way. She said that she believes I am living with her now so I could take control of her life. Her desire to maintain independence and control of her own life, while expressing her disdain for my life choices, has shaped our relationship throughout my entire adulthood. 
• Narcissism: My mother is a narcissist, not to the extreme of Narcissistic Personality Disorder, but definitely has the characteristics that make our relationship (and her relationship with our family) difficult. There was no affection, no affirmation (unless it was for compliance), and no willingness to listen to the point of view of others. It was a generational pattern. My father was also a narcissist, and they were co-dependent. My father ended his own life 10 years ago via voluntary dehydration. He had been bedridden by choice for 2 1/2 years prior to that, living a few blocks from me during that time, with my mother and I as his caregivers. It was while he was in rehab for 6 weeks of antibiotics for a foot ulcer that he chose to end his life at 84, clear-minded and healthy. Thanks to advanced directives, we were able to let him do things "his way" and pass peacefully. After 56 years of marriage, my mother considered herself "free" through his death. While she would love to have the freedom to end her own life now that she is not in control of everything, she would never do that because she is Catholic. However, she prays daily that God will take her home, soon.
• Boundaries: I had really good, hard-earned boundaries in place to protect myself and my family from my mother's tongue and attitude, and they have been torn to shreds. My brother (my only sibling) lives far from us and has some issues of his own. For the most part he has kept his boundaries in place and stayed out of the situation. 
• Lack of Resources: My mother and father did not practice good investing or purchase long-term care insurance, so all their care in the last years have been paid from savings. And she has outlived their savings. She cannot afford placement in an Assisted Living Facility. She refused to leave Myrtle Beach and move back to Columbia. Out of options, I was forced to move to Myrtle Beach to care for her, with the agreement that she would have 1 year in MB to be with her church and friends before we move our family to Clemson, with her in tow. She agreed to this, believing she would be dead before having to move. 
• Health concerns: My mother refuses to take responsibility for her own health. She defers to me to answer her doctors. She would not decide whether to have surgery for her broken leg, and in fact, she refused surgery that could have corrected her severe knee arthritis years ago that would have made her life completely different now. She had blocked me from being involved in her health until recently when her friends insisted she tell me about a fall and head injury. That was 4 years ago.
• Blessings: God is good. Sometimes I can see what He is doing. Other times I feel like I'm looking through clouds. It's like I know there's a light at the end of the tunnel, but I just can't see it because we're on a really long curve. There have been so many times God has stepped up to help - the warnings, the friends, the financial surprises (good and bad) that have not led to bankruptcy, being able to work out and care for my body, the education opportunities, clarity about priorities, opportunities to give and receive kindness, etc. The list can go on. So while this time has been difficult, in many ways I am healthier than I've been in a long time. 

I'm going to try to use this blog to explore what it's like to be a caregiver for someone who doesn't want to be cared for, while recognizing the blessings and challenges that offers. I've jokingly (and seriously) said I'm counting this time as a sabbatical - as an RN who is pursuing chaplaincy and is learning first-hand about the struggles of caregivers.