One Alzheimer’s Caregiver Story.
Shelly’s mother has Alzheimer’s and she has been her primary caregiver for years. Her mom is a wonderful woman that often thanks Shelly and her other caregivers, despite the fact that she doesn’t know who they are.
But this loving behavior wasn’t always the case. There was a time when the violence was so bad (pinching, pushing, punching and spitting), that other family members urged Shelly to put her in a nursing home.
How the family moved from the violence to now is part of Shelly’s story. “The spitting was the worst. That just got me to the core. At that time in one of my support groups, there was a gentleman who cared for his wife. A quiet, refined man, he took it upon himself to come up to me during that dark time and say, ‘You need to remember, it’s not her, it’s the sickness.’ It was a light-bulb moment for me. I started to realize that she is mentally in pain because she can’t find the words.”
The violence at that time was unrelenting and strongest during bathing and dressing. Shelly was at her wits end. She would never hurt her mother but “I realized I would still act out, just differently from mom. I would slam a drawer, throw things, or kick the garbage can. All kinds of things to get out my anger and not turn it on her. Somehow through the grace of God, I was able to turn it around. Maybe it was the gentleman from my support group and what he said to me. I became determine not to get angry when she did. I was determined to keep being nice no matter what she did. One day she was so bad, her hands were against her chest and I just started to hug her, trapping her hands there. I just kept saying to her, ‘I love you, I love you no matter what. I love you, I know you don’t mean to treat me this way’ I told her that more than once, even telling her, ‘I’m praying for you because I love you.’”
“And in being nice, vowing to not let her behavior get to me, I stopped acting out. I wish I could tell you her behavior changed overnight but it didn’t. It was a process and I realize now escalation in her violent behavior was because she was reacting to me, to get back and at me for what I was doing and because she could not find her words.”
I am just so grateful that we got to this place before we lost her. This is the woman I know as my mother. The one who says to me, “I’m so sorry for you.” And I can tell her, “Don’t be sorry, I am lucky to have you. Never be sorry.”
This is part of a series that tells the stories of caregivers. If you would like to share your story, please contact me at deb@advocateformomanddad.com or leave me a comment.
Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.
Deb, I understand you have been a caregiver for your parents. Have you had any experience with guardianship’s over vulnerable parents? In 2015 my dad, was 84 yrs old at the time, was hit by a car riding back from a 28 mile bike ride in NC. It was a miracle he survived. After 3 months in rehab his wife 26 yrs younger moved all his money into her bank account without his name. Her sister from Miami came for a long visit to NC to stay with her while my dad was in rehab. 4 months after the wife filed for guardianship of finances and my dad. Her plan was to sell everything cars, house and his personal items and move him to a group home in Miami away from his adult children, grandchildren and his friends since 1965. My brother, his wife, my dad’s riding partner and best friend and I hired an attorney to fight the guardianship. We felt the wife was acting quite quickly dispersing of my dad’s things while he was alive. And trying to move him from what he knew to an unknown place in Miami. Because we could not prove she was “unfit ” as a guardian
the Assistant Clerk of Court told all of us she was awarding guardianship to the wife, it was in the best interest of the wife that she move to Miami to get support from her family. The clerk also said since my dad’s family is not being supportive of the wife it would be better she move to where she would have support taking care of my dad. She actually said if my dad loves his wife he will have to go with her. (I have the recording from the hearing that was given to me from the Clerk of Court). My dad never wanted to be moved to Miami. He wanted to go home. As his family we gave options to his wife to help her with dad but she refused any of our advice or help. He was extremely medicated by the rehab home, put on a plane and flown down to a group home in Miami. We were not told when he was being moved, only found out by visiting my dad at the rehab home the day before. My ex-sister in law, who is a nurse, came with me and agreed dad was being medicated. We found out then he was being prepared to move the next day. He was very incoherent. My dad was on the way to recovery. He was able to walk more on his own, brush his teeth, use the bathroom and have a conversation with you. But on this visit he was a completely different person as if all the 3 months of rehab had quit working. In the last year 2016- 2017 we have struggled to see or talk with my dad in Miami. Phone calls are either monitored by the wife or not answered at all. Visits to him are monitored by her and her sister or the staff in the group home. My dad’s best friend has been blocked from calling. My sister in law has had the same treatment. We have emailed our concerns to the Clerk of Court in NC, but no support back from the courts. Now the courts are allowing a transfer of guardianship to Fl. This, of course, is a short version of everything. hard to express the affect it has had on our family. My dad was our rock, our world. It’s hard to understand how his rights were never heard. He wanted to go home and be near his family. His world was tossed upside down all because he survived an accident. I thought the courts would protect my dad, make decisions for his best interest-not the wife. If the courts are not protecting our vulnerable elders then who is? They have a voice, but no one wants to listen. My dad lives in a life he did not plan. Yes, things happen. He did have an accident. He is now 86 and has started to forget the life he once had as our dad and grand-dad. The wife does not encourage what he had, only what he will have while under her guardianship as the wife.
Maybe there is a way to express to the Courts to consider the outcome in their guardianship rulings. Their decision has a huge impact on the lives of everyone who loves them. If a guardianship is filed, because a person becomes incompetent, then protect that person’s best interest first, help them with retaining their normalcy, the balance in their life. They are the ones who need the help. Not the guardian.
Thank you for your time, have any of your readers experienced this?
Elena,
My heart breaks for your dad and your family in this sad situation. I don’t personally have experience in the area of guardianship, but certainly if other readers do, I welcome their insight.