Don't be afraid to let go: A Huntington's Disease Story

As we travel travel through life, we often find ourselves wondering about a time that may come when we can no longer do things for ourselves and for most of us, if not all, it can be frightening. For many of us we share these fears with those closest to us, or someone we explicitly trust. Some of us don't talk about such things, even though it is important to let others know what our wishes are, whether it be end of life issues or sometimes it might be things we consider small potatoes. We may even extract promises from our loved ones they may not be able to keep, or possibly shouldn't.


I have come to know that some of those promises that I made to my wife, Sheila, were promises that I should not have kept and yet I did for many years. I never wanted to betray a sacred trust.

I mostly could have kept all of the promises, but things happen, situations change and sometimes we overestimate our abilities. I did just that!

I promised I would stay close to those that I felt would eventually find a treatment or cure. Promise kept.

I promised I would work toward awareness of HD to support those finding that treatment or cure. Promise kept.

I promised her that I would never place a Do Not Resuscitate order on her. This was something that was very strong with her. Promise kept.

I promised that I would never place her in a long term care facility. I tried to keep this promise and exhausted all efforts to do so. I simply did not have the resources or the know how to do it. Also, my own health was deteriorating making it impossible for me. However, I am there for her and in constant contact with her care professionals to ensure she is healthy and happy. This was my first time letting go. I did it and was terrorized at the thought, but now I see her so much better, and I could not do it like they can. I can enjoy her more and vice versa. It hurt badly that she would not be coming home, but she's not far away. Promise not kept.

She never liked anyone touching her feet, especially her toes. I can't count how many times she told me never to let anyone do her toenails in the event she couldn't look after them. So for all these years I cared for them, knowing that she only trusted me because I had never made a mistake and nicked her. She never had an ingrown toenail or any infection. However, about a month ago I was checking her feet to see if I needed to give them attention and I noticed that a couple of her toenails were beginning to curl over the end of the toe and if I were to cut them I may hurt her. It wasn't from neglect but rather that her diet has a lot of protein, so the nails grow faster.

I immediately arranged with the nurse for a professional to look after them. I checked them this evening and what a fantastic job the person did. It was perfection. But, it was a promise not kept.

I asked her if she was angry at me for letting someone else do them and she told me that yes, she was mad. So, I explained again why it was done and then told her to kiss me on the cheek if she forgave me. She kissed me on the cheek and gave a pronounced exhale.

It's hard giving the reins to someone else. But one of the residents who is just down the hall from Sheila comforted me a bit and told me that this facility is nice, more like home, and that the staff treated Sheila like a princess. She looked me in the eye and told me not to worry.

So, I resigned myself to let go, to set myself free. I am no longer her caregiver as I have been for so many years. I want our remaining time together to not be focused on Huntington's Disease but focused rather on being husband and wife, like it used to be before this monster moved into our lives.

I'll still paint her fingernails though. She talks to me more when I'm doing them so it brings us closer.

Don't forsake offers of help, you might be surprised at how valuable those gifts are.


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