Saturday, June 11, 2016

Crazy Town

Dementia makes you crazy.

I'm not talking about the person diagnosed with the disease; I'm talking about the caregiver. I'm talking about myself. If there's a sane caregiver out there, I'd like to meet them. Or maybe not, because then I'd feel even worse.

Lately I feel like my emotions are all over the place. Sometimes I feel strong, resolute. I am proactive with my work in the foundation, which gives me a focus and a purpose. I am patient with my mom and I get the job done without breaking. I try to focus on all of the good things I have going on in my life, things that bring me joy: my beautiful kids, my incredible husband, my amazing and supportive friends, my home-based sewing business (which doubles as my therapy time!).

But mostly, I just put on a brave face as I face the day, going to play dates, escorting the kids to their sporting events, attending church groups. I wear a smile on my face but inside, my heart is ripping into two. The truth is, my mom is always on my mind. Always. The sadness always lingers with me, like a black cloud. I worry and think about her when I'm away and miss her when I'm with her.

It's a complicated thing-to grieve for someone who is still living. I don't think there's any way to describe it to a person who has never experienced it. You grieve for the loss of the person that was once there, while still holding on to the physical being that remains. The grief is relentless and suffocating at times. I feel on edge; any unpleasant thing can bring me to tears. I am a ticking time bomb; one wrong move can set me off.

It's a continual rollercoaster of emotions; one day I'm up, the next I'm down.

Over the weekend, we received some unpleasant news that kind of sent me into a downward spiral. It would have been upsetting even if my life weren't plagued by dementia, but that dark, hovering raincloud (called dementia) met with this other passing, dark cloud and together they brewed a nasty storm. I stewed about this particular situation for days and I was left feeling, hurt, sad, and angry. Very angry. I'm not even saying my anger is justified, but when you're already slightly unbalanced it's as if the senses are heightened and what might start out as disappointment or sadness can easily fester into some other (stronger) emotion. For me, it was a lot of anger. Anger at the situation but probably mostly triggered by this disease. I'm angry that dementia has made me such a basket case. I'm angry for the strain it has put on some of my relationships, and at the people who I feel have let me down over the years. And most of all I am ANGRY that this disease struck my mom. I am angry for her, that she has been robbed of what is supposed to be the best years of her life. I am angry that my dad is losing the love of his life, for the pain and the helplessness he feels at watching her slowly fade away each and every day; for the helplessness I feel for not being able to fix it and make it better. I am angry that I've lost my mother, who was so much more than my mom; she was also my friend, my confidant and therapist, the one person that I could talk to without fear of judgment, who could give me advice or help me navigate my way through a problem, the one person who loved me and thought the world of me. I am angry that my children have lost their grandma and will never experience what I had growing up: the grandma to spend the night with, to bake cookies with, to have at every one of their music recitals or sports events or any important life event, to be their biggest cheerleader and to be their refuge from their "mean" parents. This is the kind of grandma I had and this is the kind of grandma that my mom wanted to be. And I'm ANGRY that was all taken away from us.

I don't usually post negativity on my blog; I like to keep it away and I don't want to sound like a whiny, sniveling baby. I'm not the first person to lose their mom at a young age and I'm certainly not the last. At the same time, I think it's only fair to my readers to be real. Somebody out there might be reading this while riding their own rollercoaster of emotions and I think it's important for them to know that they aren't alone in this. Because so often with this disease, we feel alone. I feel alone. You aren't crazy. Or maybe you are. But if you are, I'm right there with you!

10 comments:

  1. I remember the roller coaster and feeling the exact same way while my mother declined, and I was working and trying to raise babies. I felt like my arms and legs were all pulled in different directions every minute of every day, and that I wasn't doing a good job with anything because it was too much. Dementia caregiving is a terrible strain, there is no doubt about it. And it's okay to feel angry! Just remember you're doing the best you can, just one day, or even one minute at a time. Do what you have to do, when you have to do it, to get through. Whenever the day comes that your struggle is over, you'll be glad that you did the best that you could, moment by moment. Take deep breaths, step back and ask for help when you need it, seek it out when you must. You'll know whether or not it gets to be too much, but you must look out for yourself or you can't take care of those that you love most. And thanks for keeping it real for those of us who follow you. Hang in there!

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    1. You are right, when everything is over, I will have no regrets. I am grateful that I'm in the position I'm in to be able to help her and my dad, even though my heart breaks a little more everyday.

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  2. Thank you for saying exactly what I am feeling. I have been struggling to write down what I am feeling for the past three years and you have caputured it perfectly. Every day I miss who my mom was and I feel so sad seeing her struggle with dementia.

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    1. "Every day I miss who my mom was and I feel so sad seeing her struggle with dementia".
      My sentiments exactly.

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  3. I understand every word you wrote. I'm walking the same path.My sister helps me with mom and she is taking an 8 week vacation this summer. I recently decided to see about putting mom in the nursing home for respite care while she is away. I struggle with feeling guilty. I keep second guessing myself. I feel like maybe I'm taking the easy route. My emotions get pulled all over the place too. I blog about mom at momhasdementia.blogspot.com

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  4. I understand every word you wrote. I'm walking the same path.My sister helps me with mom and she is taking an 8 week vacation this summer. I recently decided to see about putting mom in the nursing home for respite care while she is away. I struggle with feeling guilty. I keep second guessing myself. I feel like maybe I'm taking the easy route. My emotions get pulled all over the place too. I blog about mom at momhasdementia.blogspot.com

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    1. Thank you for sharing, I am going to read your blog!

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  5. Thank you for posting your walk! I, too, am walking this lonely path and my mom is just in the earlier stages of dementia where she argues with me about the caregiving. Most people would be angry about the arguing but I treasure those times because it means my mom and I are still connecting! I.e. she is lucid. What I struggle with is that my husband almost left me because he thought I was having an affair because of the time my mother's care took away from him and the family. I am doing this alone because there is no family near here and some days I just cry. It is so hard to watch the one you love dying slowly right in front of your eyes. Please keep blogging so I don't feel so all alone, utterly alone.

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    1. I'm so sorry you are going through this. You're not alone! I'm here if you ever need to talk!

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  6. I am angry, too. I blogged about wanting at least one of my parents to die a natural death. (Mom's was catapulted into dementia by an accident that was not her fault.) I am angry because I feel betrayed and because I feel stupid for feeling that way, but most of all (exactly as you put it) mom was robbed and our family was robbed. Suzannesdementiablog.com

    Suzanne

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