Wigs Are Burning

Life with Mom and Living with Lymphoma

Brian threatened to set my wig on fire the other night.  I was being a back seat driver and he wanted my decision to stop giving my unsolicited directions to be meaningful and effective.  I stopped.  I didn’t blame him, and I really need my wig(s).

It was all in jest, by the way.

When I started to lose my hair in August, it was very difficult emotionally.  At the chemo class I went to before I started treatment, the nurse said with conviction:  “Your hair will start falling out on day 15.”  I was surprised she said that with such confidence and thought that the truth of the matter was that who really knows when your hair will start falling out…everyone’s different.

After treatment began, I was taking a shower one day and my hair was coming out in my hands.  When I got out of the shower, I looked at the calendar and whatdayaknow…it was day 15.  I dealt with the thinning for 6 days when I decided to have it shaved.  I concluded that no hair would be less upsetting than hair constantly coming out in clumps, and I was right.  Although it’s quite an adjustment to have no hair, it was less upsetting.

Since it was summer when I lost my hair, I didn’t feel the need to wear a wig.  It was just too hot.   I ended up getting a wig at no cost from the American Cancer Society, but never wore it.  Then the days started getting shorter and my mother began sundowning, which is a new development in her dementia condition that started since my illness.   One evening, she didn’t know who I was and asked me who my parents were and where I grew up.  I answered her honestly hoping to convince her that she was my mother.  She believed me by thinking that she must have two daughters named Diane.  She couldn’t figure out, though, how she had a baby and didn’t remember it.   It all seemed so confusing to her.  That’s when I started wearing my wig, and I got another one as a back-up.

Since then, she seems a little less confused about who I am, but still thinks she has two Diane’s.  I asked her the other night how often she see the other one (I’m assuming it’s the one who used to look like me with real hair), and she said not that often, and that it had been a few weeks.   I wear my wigs most of the time now, and I have to admit that they keep my head warm now that the weather has changed.

My mother’s sundowning seems bizarre to me.  Every night she asks me to take her home.   I used to tell her that she is home, but she would just look at me like I wasn’t telling the truth.  She was and is convinced that our house is not her home.  Now when she asks me to take her home, I tell her that I’d hate to take her to a place where she’ll be alone because we’re all staying here tonight.  And I say look…there’s a bed in that room that’s all set for you.  She always drops it and eventually goes to bed, but she never seems entirely convinced.   She told me last week that she’s not going out with me anymore because I never bring her back home.  This was on a day that we didn’t go anywhere.

When she loses her glasses, she comes to me to help her find them, and I always find them.  A few days ago, she told me about a person that she lives with that’s a magician because she finds her glasses whenever she loses them.  I amused myself and took the opportunity to build myself up and say it must be wonderful to live with someone who’s so great.  She agreed and we both laughed.

So, at least for the next eight months or so, I really need my wigs until my hair grows back.  Although Mom is still confused about who I am, she does think I’m a nice and helpful person who visits with her often, gives her rides, and helps her to bed every night.  My biggest hope is that she’s hit a plateau and will maintain this level for a long time.  We can’t really stop the progression of her Lewey Body Dementia, but I hate to think that my condition is the catalyst for a free-falling nose dive.

me-and-michele 100_9572 100_9480mom-and-me

All my different looks.  No wonder Mom’s confused!

PS:  My mother gave me permission to write about my father’s Alzheimer’s which I started to do on this blog in 2012.  When she was diagnosed with dementia a few years ago, she also gave me permission to write about her.  She used to read my posts, however several months ago, I eliminated her from the list of people who receive my blog in their emails because I thought it would be too upsetting for her to read about her progression and how it affects me.  I write about her now with her standing permission, however, as I said, she doesn’t read what I write.  It’s just better that way.

 

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4 Responses to Wigs Are Burning

  1. Lucie says:

    Lady Di, reading your article has left a pain in my heart and tears welling up in my eyes. It also leaves me with a very wide smile in my heart as well because I am so very lucky to have such an incredibly strong, gentle and loving friend. I do not know where you get your strength . Love you.

    • Diane Fiore says:

      Lucie, Your tears have been transferred to me now because of the lovely things you wrote. My life is guided by the many people in my life who are all of the things you mentioned, and you’re at the top of the list. Love you!

  2. Ann McKinley says:

    First of all,Diane,you look amazing in your wigs. You make loosing your hair look like a great thing! Second, the things you write about your Mom and dementia echo my own Mom and her dementia. Once again we walk hand in hand…..as always,you approach all these challenges with your remarkable grace,humour and boundless beautiful energy.

    I love you my magnificent friend! I’m right there with you,in my heart. 😙

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