Reconciling a life and a disease

The days are tumbling on top of each other following the death of my mother who had HD. I never was able to visit her as much as she wanted me to. Even when I visited her every day she would barely let me out the door. Even when she was yelling at me, she didn’t want me to go. She wanted the connection. I moved away, my own HD progressed and I became less capable of making the 90 minute drive.

Then she started calling me, literally hundreds of times a day. She would sit for hours and hit the redial button and when I would answer, she would ask me when I was coming to visit. When my support system got wind of this, they insisted that I block her calls so I could try to get something done during the day and not have my heart broken every time I heard the despair in her voice and felt the specter of what could befall me. I told her I was having trouble with my phone. She sent me a few letters begging me to help her, but I confirmed that she was safe and being well taken care of. The letters stopped and I visited as often as I could.

At a certain point, long before her final days, she had decided that she wanted to consume me. I don’t know if it was the same dynamic as the time I was drowning and as people kept trying to save me, I climbed up their bodies, plunging them further down into the water. But for years I have felt her sickness manifested in a need for something from me that I could neither identify or satisfy.

Until she died, I carried an enormous weight of guilt because I thought that I wasn’t there enough for her. That I couldn’t see her or help her. That I had failed the one who had failed me the most, and by doing so, I had blown both of our chances for redemption.

Now even though she is gone, I still have a sense of her being. The memory of her unforgettable presence lingers and, more and more, I remember snapshots in my life from the times long ago when she showed me love.

But the oppressive guilt has lifted. I am realizing that I did the best I could based on my own condition, and that is more satisfying knowing that she is released from her diseased body and mind and no longer desperate.

Now it is my turn to live out my days and, while I have plans, I have adjustments to make to improve my health. I am formulating safeguards to protect my kids from what I went through. I am already having conversations with them about blocking me if I perseverate on the phone calls. And I am conveying my unconditional love to them the best that I can.

But I mete it out in small doses, because they are teenagers and I do not want to freak them out.


2 thoughts on “Reconciling a life and a disease

  1. I hope you can continue to let the weight of this go, as you’ve let the literal weight go. Both of us had sick mothers–– not just the HD, but the unhealthy ways they communicated and impacted our lives. Process this with love for her and yourself, but let it go, dear Sarah. xox

    Liked by 1 person

  2. Well said Dawn. Unfortunately for you your mother’s reaction to her disease and required residence excluded any empathy for you, or even the capacity to be satietated by how much effort you put in to visit etc. for her. Its’s extremely impressive the effort you did put in under your own circumstances. I’m amazed
    how you carried out the amount of contact you did exposing your self to her problematic responses when she had enough facalties to communicate her demands. Especially when her obssesive requests couldn’t ever address construtively her actual fears around her disease or preparedness to adapt to her ever encroaching reality. There would have been a point she’d (so very unlike you) elected to choose avoidance and displacement over her condition so ending up hurtling down that pathway as becoming more cognitively rigid and even delusional.The reality is her care setting would have been supportive and she would have had times in there where she would have been settled between time when something triggered her getting set off again. Plus such like your mother have enough radar left somehow to know who to target. I had less capacity to deal with my mother too often in her care setting 5kms away, yet she could hound my brother in her bouts, past favourite in another state. Even giving him a mini nervous breakdown once in appeasing her. She played on his ‘fixer’ disposition. My freezer reaction, cant do when overwhelmed wasn’t worth her energy when in a demanding nutty state. I’ve never felt guilt over her, only when brother needed the rest of us to get going.

    You’ve been wonderful, still are in doing all you an to protect your kids. I truly doubt you’ll ever go down the path your mother went no matter how ill.You are setting your responses to avoid extreme self centered demands, being realistic, so any cognitive problems are likely to be practical, processing too much input, maybe bit of confusion sometimes, and emotionally sometimes vulnerable. Since you already have enough HD and are thoughtfully on track,still putting caring efforts in you won’t change much, at worst just fade somewhat.

    Wishing you all the best in your journey, you deserve more than most anything, everyone who can help lighten your load and the longest time with the least progression of further HD stages.

    You ought to give yourself a medal for what you did for your mother. The guilt belongs wth her, her HD only.

    Liked by 1 person

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