I woke up mean: An emotional story triggers another day of grieving

I woke up mean. I knew it the moment my eyes opened that this had the beginnings of a bad day. John was already up so I had a few moments to try and chase the dark clouds away, but eventually I realized they had settled in. I would have to get up and make the best of it.

Tobey knew something was up as soon as he came scampering down the hall. I saw him put the brakes on as he decided to sit and let me come to him. Smart dog. Instead of a pat, I thought it best to just pass him by and he decided the perfect place for him was under the dining room table.

Walking into the den, I dropped myself into an arm chair and picked up the paper. Headlines screamed the economy was bad, to date local towns had more gang related murders than last year, and sadly they had found the body of a small boy grabbed from the arms of his grandmother. But I knew these events were not the main cause of my mood.

My mood was created by a brew of things uniquely mine.

I’m grieving again. It started out simply enough with a CBS Sunday Morning segment. I had settled down with a cup of coffee to enjoy one of my weekend pleasures; some time with Charles Osgood. My sister happened to be visiting and she snuggled on the couch with me. As it happened, Barry Petersen had written a book “Jan’s Story” about his wife’s early onset diagnosis. What Peterson said about the loneliness of care giving, the ongoing grieving and the shroud of sadness that sometimes settles over you struck very close to what I was feeling if not right that moment, then in the not too distant past and future. If my sister hadn’t been sitting next to me, I think I would have cried big, loud, heart wrenching sobs as I watched their story. Debbie and I later talked about why I held back my tears in front of her. I don’t have a clear answer. That will be something for another blog.

I’m exhausted. John has entered a phase where his nighttime confusion– when it happens –is intense, keeping me from getting a full night’s sleep. Logic tells me that he can’t control his panic anymore than he could determine the color of his eyes, but it leaves me feeling tired and a bit resentful. Once, after we had been asleep for a few hours he woke up certain that we were not in our house, he was adamant that I take him home RIGHT NOW. No matter how many times I pointed to familiar items, he couldn’t understand that we were in our bedroom. Desperate, I finally asked him to hold my hand while we clicked our heels together saying, I want to go home, I want to go home”¦ promising that when we woke up he would be in his bed at home. Trusting me he slipped into sleep and when he did for a magic moment I had my husband back. In sleep he is the man I know; his scent, the cadence of his breathing, the touch of his hand in mine. All still there.

Layered onto those feelings is a dawning realization that John’s condition draws strict boundaries around our lives and my work. It seems that as time goes on I am adjusting our life in ever constricting circles. Friends are limited, concerts or movies can’t be too intense, too loud or too long. Now it might be a glass of wine, not wine tasting. I knew it wouldn’t be an option for me to even apply for a recent vacancy at work. The hours were longer, the location farther and travel came with the position. Luckily I enjoy my current job, so I don’t feel bitterness just a sense that for a long while this is it. There is no room in our lives right now for more, or new, or challenging.

I woke up mean.

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5 Responses

  1. What an emotional story..

    It’s a shame to think this happens to lots of people around the world everyday.

  2. Marcy says:

    I’ve read your posts today for the first time. Your big heart, emotional honesty, and superb writing skills will have me looking for more.

    My mother has Alzheimer’s, probably more advanced than John’s, and it has been a most painful journey. I can only imagine what it must be like when it is your partner, not your parent, who disappears. I guess each has its own unique flavor of grief and challenges.

    I loved your Valentine story and love it even more than John is still able to express how much you mean to him in a way that you can understand it. I know you are treasuring his continued ability to communicate.

    What’s been hard for me throughout this experience is knowing that right now is the best it will ever be…..sometimes that idea uplifts me to a place where I can truly be in the moment with Mom and at other times, plunges me into the depth of my sadness and loss.

    Thanks for posting; it means a lot.

    • pguinto says:

      Marcy, thank you for your comments to our blog. Please know you can contact the Alzheimer’s Association any time, day or night at 800.272.3900 to get advice, find support and get connected to resources in your community. Also feel free to drop by one of our offices in Northern California – in the Bay Area specifically, we have an office in Mountain View, Lafayette and San Rafael. You can also fill out an online form questions of our care specialists here: http://bit.ly/iactkd
      In addition, we have several support groups throughout the Bay Area that can fit into any schedule.
      Our message boards are another great resource for caregivers: http://bit.ly/fmOyh0
      Finally, we have several classes for caregivers that may be of help to you. A description of the classes and schedules appear here: http://www.alz.org/norcal/in_my_community_education.asp

  3. I cry at bedtime when I go to bed and realize there is noone next to me after all these years. I go into mourning in the morning when my feet hit the floor, just knowing that my wife lies in bed at care facility. I put her their against her will, she begs me to bring her home everytime Ivisit but when she was hom these past months she wanted to go home also. She was so hard to handle but still makes me feel so guilty. Was it for myself or for her? God says we are to live for others before our selves. This guilt goes thru my mind every hour of the day. I am a strong person physicaly but I just can not stand it emotionally. I just don`t know what to do at this point. The care givers at the facility ask me not to visit so much it tends to cause her adjitation to be worse. I know it doesn`t get any better, even though inside you feel you will be bringing them home soon. Yes in response to I WOKE MEAN never being a wine drinker I am one now. Thank you for your comments.

    • pguinto says:

      Frank, please know you can call our 800 number any time, day or night to talk with someone about this issue. We have many resources and supports to help you through this difficult time. 800.272.3900.

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