Brad relaxing with our buddy team from South Korea at the Odyssey of the Mind Wold Finals. Thank you Michelle Carpenter for this great photo.

Brad relaxing with our buddy team from South Korea at the Odyssey of the Mind Wold Finals.
Thank you Michelle Carpenter for this great photo.

Expectations. Expectations are the root of all unhappiness. If you expect something and you don’t get it, you are disappointed. You are sad. You are let down. You are angry. You are bitter. You are many things and none of them good.

If you call a friend and leave a message; you expect a call back. If you tell someone you love them; you expect them to reciprocate. If you marry someone; you expect to grow old with them.

What if you expect more of yourself? What if you expect to be a better person, have more patience, be more understanding, be a better parent, friend, neighbor, employee, human? And then you are constantly failing to live up to your own expectations. How do you feel?

When Brad went to Iowa for the World Finals for Odyssey of the Mind last week, I think he had an expectation to win. As a competitor, that is how you think. They didn’t win first place, but honestly, I couldn’t be prouder. It was a great experience and I enjoyed the time we got to spend together. He is an awesome young man and he showed me a side of him I don’t get to see in the rush of home life. The week we spent together, walking all over the Iowa State campus is a time I will treasure for the rest of my life. I think in his own 10 year old way it was a very special time for him too.

Brad and I getting ready to fly to Iowa.  Thank you Victoria Daley for the photo.

Brad and I getting ready to fly to Iowa.
Thank you Victoria Daley for the photo.

Before we left for Iowa, I spoke with Jim about not attending Frances’ softball tournament that would be taking place while we were away. The tournament was out of town so she and our nephew would be going and Jim would stay home and take care of the dog and house and stick to his normal daily routine. He was fine with it. He said he would prefer to stay home. It was all good. But a few days later, while I was sitting in a dorm room half a country away, I was informed when it was time to pack up and leave, Jim started getting ready too. He wanted to go. It was uncomfortable for everyone involved. I felt guilty. What should I have done different? How could I expect Jim to remember he wasn’t going? Because he said he didn’t want to? I was heartbroken thinking of him feeling “stuck” or “left behind”. The last time I left him home for a night he thanked me for trusting him home alone. Maybe I was expecting the same reaction. I must try to be one step ahead, but with this cunning disease, it seems an impossible task. He didn’t remember our conversation. He didn’t remember he wanted to stay home just a few days earlier.

Remember my Morning Glory story? Guess what? Jim decided while I was at work this week to trim our hedge. Guess what? I don’t have a Morning Glory vine to bloom this year. On a positive note, there was no door slamming, no yelling and no tantrums on my end. I didn’t stop myself from asking him why he trimmed the hedge where the vine was growing when there is a whole backyard full of hedge that could be trimmed instead. (He literally only did the place where the vine grows) It is a baby step for me. I know he felt bad once I mentioned it, so I suppose my next step is to stay silent. I am not sure that will ever be possible for me. It is not in my DNA. I must come up with another way for me to deal with his great efforts that fall short in my expectations.

Expectations. I expected him to know not to cut the vine. I expected him to remember our conversation. I expect him to know to close up the bag of crackers before putting them in the cabinet. I expect him to be able to see there is standing water in the flower pot and to realize it doesn’t need more water.

These past few weeks I had jury duty. I spoke to a friend about being there all day with no phone. I asked if she would be willing to answer the usual questions Jim has for me throughout the day. She said she would be more than happy to. But she also said, “ I know you feel an obligation to do jury duty, but you have circumstances that make it ok to get out of it.”

And there you have it. As her words reverberated through my mind, I started to understand that I have been grasping at ways to keep my life ordinary.I have been struggling to keep our family “normal”. I don’t want to be a family that has extraordinary circumstances. The ironic part of my epiphany is I have never wanted to be ordinary and thrived on being a little different and thinking outside of the box. But I am not in control of our singular life, whereas before I could at least feel like I was.

Our lives are changing but I have been unable to accept these changes. I have expectations that I haven’t been able to release. Expectations of my life still being my life. My marriage still being my marriage. My husband still being my husband. Our family still being ordinary. But nothing in my life is as it once was. And will never be again.

I am trying to free myself from expectations. Those chains of desires, beliefs and whimsical daydreams keep me in a constant state of imprisonment. Imprisoned in my own mind. It may be Jim that has a disease that affects his brain, but it also has a lasting and maddening effect on mine as well.

When I release these expectations, what will I have? Who will I be? Will that mean I have accepted our fate….Jim’s fate? Does that mean I will have given up?

Should I not expect him to be able to do simple tasks around the house? And if I don’t, what will he do all day? Should I stop expecting to be able to have a home that doesn’t have rotting wood, dead flowers, dirty floors or things scattered in no particular place?

Should I not expect to be able to relax? To see friends? To go to a show or on vacation or want more out of life? What about Jim’s life? Everything is mingled and complicated and when I think too much I become so emotional and overwhelmed my mind practically shuts down and I am worthless. Then I am disappointed because I expect myself to be better and to do better. I have to be a good Mom. A good worker. A good wife. A good friend. A good housekeeper. A good cook. A good organizer. A good planner. A good person. And I am not. I am impatient and I am not always kind and I get frustrated and I sometimes want more. Sometimes I say the wrong thing or I forget something I should have remembered.

My life is such a complicated conundrum that continues day after day and year after year. I am desperately searching for a game plan to know the right way to navigate this nightmare, but there isn’t one.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (8)

8 Responses to “Expectations”

  1. JIll says:

    Though mom was much older than Jim, a doctor recently fussed that I didn’t ask for help from other than my husband when caring for mom. He said it has caused a battle my brain is having as it relates to depression and anxiety. I thought I was doing what was best and still do not regret it but am paying with my own health. I’m glad you are able to travel with your son, we only would take a night or two break and stay at the Hilton down the street just in case. As always, take care of yourself, take breaks and vacations, I wish I had.

  2. Marsha Carpenter says:

    Expectations are a funny thing. One day my husband knows where the bathroom is, the next he asks 14 times. A month ago he knew what his limbs were & his articles of clothes, now he doesn’t. How do you explain what an arm is? When I say – give me your bowl, he gives me a cup or says “what is it?”. I too try to be a good “everything” and remember everything for both of us – but this is becoming a losing battle. The complications I read about & friends told me about seemed far away & impossible, but now they are reality. By the end of the day I am not always kind, not always patient & I try & forgive myself. Soon I must take care of my own health & place him back in a nursing home & try to stay at home sometimes. I dread it and on other days I wish it was today. All of us know where you are walking, we know exactly how you feel. Most of all we thank you for sharing because this tells us we don’t walk alone, that there is no game plan – just a day or an hour at a time.

  3. teresa says:

    You are an amazing person, I really saw that when we were in DC, you have a lot of friends, anytime you need a helping hand or a listening ear, we are a call away

  4. Maureen says:

    I love what you said about “when I release these expectations, what will I have”? It took me a while because I felt the same way. But when I finally released my expectations what I experienced was “acceptance” which brings me peace. I still feel sad, but I don’t lose it and I don’t get angry or resentful. What I’m working on now is what Jill said about taking breaks and taking vacations. I need to experience joy in my life while travelling this demanding journey! Thank you, as usual! xoxoxo Maureen

  5. Andrea says:

    Well said. Thank you for putting in writing my own thoughts and feelings as we go through our similar journey with my 49 year old husband.

  6. norm says:

    More about my friend Cliff: he lost the ability to see, his eyes worked fine but the process where we interpret what the eyes see failed for Cliff. My wife and I would have Cliff to our home for a long weekend once a month or so, give his family a break kind of thing. He would bring a suitcase of clothing, hygiene kit, extra shoes, regular stuff needed for a weekend of hiking, museums, sporting events. The gear he needed would be right in front of him but he could not see it, the visual image would not translate into an object in his brain. I suspect that is what happened to your vine, it just did not register as something different.

  7. Anne says:

    You have grown so much, Karen. I think part of the pain we feel when a loved one is seriously ill is that it brings us face to face with how powerless we really are. At the heart of anger is fear of loosing what we have or not getting what we want. It’s simply part of the human condition. The pathway to peace is acceptance of whatever happens but I’ve never met anyone who nailed this big task. Maybe today I accept something but tomorrow I may be in a rage over it. Two steps forward, one step back. But the point is you’re growing and changing and teaching so many of us to keep trying no matter what. God bless. You’re a power of example. Thanks for posting.

  8. Kelly says:

    Thank you for your honesty, your advocacy and your efforts with this blog. It is so helpful and such a huge gift to those of us on the same ride.

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