Searching for Superwoman

Washington D.C. Cherry Tree Festival, April 2010

Washington D.C. Cherry Tree Festival, April 2010

I have been doing EXTREMELY well the past two months with losing my patience with Jim or the kids. I have come to realize that I am the epitome of patience with Jim by himself or the kids by themselves. But get all 4 of us together and there is a storm on the horizon.

I work really hard at my unflappability. Patience and calmness. These things are not easy in a fast paced environment like our household. There is always something needing to be done; places to be, homework to do, instruments to practice, food to be prepared, animals to tend to….I mean honestly, the list could go on and on. Just like most American households with active children living in them there is just never enough time or energy to get everything done in a day.

But, my NO YELLING streak was broken this week. I had been doing so well.

Every Monday I have to leave my house when the kids are just waking up. I have to travel nearly an hour to work. On these days, I stress. A lot. This past Monday, I went through my whole day with no major hiccups (i.e. no calls from the kids). Then I get home and it is dinnertime and I am trying to figure out what to fix and Brad comes in the kitchen. He is not feeling well. He is starving (not unusual wording from him at any given time) and lets the cat out of the bag. He didn’t eat lunch because he forgot his lunch on the counter. He forgot to pack it up. So I instinctively ask Jim why Brad didn’t have a lunch. I ask Brad why he didn’t call us to let us know. I ask Jim what happened. All the while I am picturing Brad sitting at the lunch table with all the other kids stuffing their faces while he sits hungrily longing for a morsel.

A rage builds inside of me as I ask questions and find no good answers. Why do I still try to find answers? Why must I do this same routine? When will I accept what is happening and JUST LET IT GO?

Jim finally makes the mistake. He tells me he saw the sandwich on the counter and ATE IT. Yes. He ATE his son’s lunch. Even as I write these words days later I feel the churning and frustration build inside of me. I am very protective of my cubs. And one of them going hungry, even for one meal, is unacceptable to me. Then to find out that Jim knew he had left his lunch and proceeded to eat it instead of putting two and two together and realizing that Brad needed something to eat or else he would go hungry was just too much. I snapped.

I am constantly trying to be two places at once. Usually work and home. Most people I think are the same. Especially when they have kids. Especially when they have extenuating circumstances. But what is the answer? I can’t quit my job and stay home. We need the money. I can’t afford to hire someone who can come in and organize the family while I am away. Besides, I feel like with a 10 and 13 year old, they are old enough to take some responsibility. Because I feel this way, I interrogate Brad on why he didn’t remember his lunch. Why he didn’t call. Why, Why, Why?

But the real person I was angry with was myself. Me. I wasn’t there. I wasn’t home to make sure he took his lunch. I wasn’t there to assist Jim. I should have done something different to make sure this didn’t happen. Guilt. It has engrained itself into my very core. Guilt for yelling. Guilt for needing help. Guilt for not being there when someone needs me. Guilt for forgetting a commitment. Guilt for missing a deadline to turn in fundraising money. Guilt for not being able to fix Jim.

Yes, I know most of these things aren’t my fault. But when you have the personality I have, there is an underlying belief that you can do anything and everything. You are capable of doing it all. And up until just recently, I pretty much was able to do this. But I am slipping. As Jim slips into a deeper hole, I slip too. Even as I struggle to reclaim myself and my abilities I catch myself faltering. I feel my capacities shrinking and somehow becoming just out of reach. I feel them flitting away almost daily. With each thing I forget or can’t do I realize that I am losing ME. The real me. The me that is being replaced by someone who can no longer keep up. The real me that would even care.

I am exhausted. I realized that with such potency and surprise when I got a brief respite in San Diego a few weeks ago. The pace of working full time, taking care of two kids and Jim, bills, taxes, schedules, meals, shopping, the yard, the laundry, homework, activities, freakin’ school projects, friends, birthdays, holidays and advocacy……

I am human. I will realize this soon. And I will change. I don’t want to. I want to stay the same Karen that can do it all. That can volunteer and do a great job at work and who has a clean home and who keeps track of her kids’ schedules. Whew! It wears me out just reading it all.

Last year, when Brad was in 3rd grade I had a really harsh reality shoved into my face. We were about ¾ of the way through the school year. Brad brought home a grade that was quite unusual for him on a test. So, I started paying attention. I started asking questions. I did a little investigation. I was stunned. And ashamed. And terrified.

It came to my attention that NO ONE was helping him with his homework. I hadn’t realized that Jim wasn’t helping him when they got home from school. By the time I got home from work, Brad would tell me he was done with everything and I just went along. Jim never said much and I just figured Jim was helping him and reviewing everything. That is how it had been in the past. But as Jim had progressed, this small detail of parenting had slipped away. No one told me. Hello. Isn’t someone supposed to tell me each time Jim slips or progresses and something changes???

So, I figure out that my brilliant kid has been making all A’s and B’s all year with NO HELP from home. With anything. My level of admiration for Brad went up a notch and my guilt went right along with it.

There are so many things that get “thrown” at me weekly. Things I once took for granted that are no longer viable. It is a painful process which has no manual or guide. You basically figure it out as you go.

Tomorrow, the kids have dentist appointments. At the same time. Which is a good thing. Except, I made the appointment 6 months ago when I didn’t have anything going on tomorrow. But now I do. I have to be at work, 45 minutes away, 2 hours after their appointment time. So, I have stressed over this for the 3 days I have been in the realization that this time frame could be a problem. What to do? If I try to reschedule their appointments who knows how long it will be before I can get them in again. If I tell my boss I will be late, that will be another notch in my never ending notches of inexcusableness. So I stress. And I fret. And tomorrow I will find out how quickly the dentist office can clean and check two sets of teeth.


***Side note: Dentist awesome. Teeth cleaned. No cavities.  Kids to school and me to work in plenty of time. Sometimes the universe smiles on us all.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (14)

14 Responses to “Searching for Superwoman”

  1. Jill says:

    Our big moment was when mom didn’t know how to open a jar. After that we realized there were many things she had not been doing.
    I pray you get some consistent help soon before it takes it toll like it did with me.
    Be blessed.

  2. Barry Dear says:

    Just a thought. You are not really a patient person. That is because you are so passionate. I don’t know if you need to change the kind of person you are. I am sure your family knows how you are, and loves you for it. Perhaps finding a way channel your energy into something else would be better. Just a suggestion by someone with extremely limited knowledge of your situation. I could be WAY OFF but I doubt your family would want you to change, even if you could.

  3. Lori says:

    my mom has younger onset Alzheimer’s which is how I found your blog. I have a blog post I’d like to share with you. I hesitate to share this, because what I was going through at the time pales in comparison to what you’re going through. but it’s about guilt, and our ability to forgive ourselves, so there may be something of value in it for you. I hope so…

  4. Diane says:

    I’ve followed your blog from the beginning. My Dad had Alzheimer’s. My Mom has Alzheimer’s. I just wanted to let you know that I think you are truly amazing, and you and your family are in my prayers.

  5. Lee Ann says:

    Don’t even waste time looking for a super woman. Because their pay scale is much higher than ours. IF you could find one. They rank up there with angels.

    Just remember to keep the channels of communication open between you and the kids, especially. i have a friend whose Mother lived with them because of dementia. The kids wouldn’t tell their Mother about problems with Grandma because they didn’t think they should tattle, or Grandma just doesn’t understand, or if they told, things would change.

    I think the lunch thing could change your routine. Have the backpack and the lunches sitting in a certain place together, so there’s no missing it. or next to the door. Some things may have to go. Keep the important ones, but let everything else go. You have these beautiful children that need to have it as stress free as possible, so making every routine work as smoothly as possible. Maybe put some money on the school lunch card, so they would have a hot meal in an emergency. It’ll work out, you’ll see.

  6. Susan says:

    I have written to you before. I take care of my mother-in law, who has advanced Alzheimer’s Disease. I am retired so I have the luxury of being home with her. I feel your pain each time you write. I truly believe that you are going to suffer some medical condition if you continue at this stress level. You need to finally accept that Jim is not responsible for his actions. If he had realized that the lunch was Brad’s lunch, he would have called you. He only knew that there was a sandwich to eat. Brad should carry money or have a lunch card for those cases when things do not work out as planned. Your kids are also stressed out, whether they show it or not. No one is to blame. You have been dealt an unfortunate hand, and you need to figure what will work as you progress in the future. Money or no money, Jim cannot be left alone much longer. Good luck, and I pray that you will find a workable solution.

  7. Kimberly Smith says:

    It’s so easy for someone to say you should do this or your need to make plans for that, but you are doing all you can do plus more than most humans can ever fathom. Each family is different and I know what it’s like when your back is up against the wall and your family income has been cut so drastically you don’t know how you are going to make it through the month. You are like me, you have kids and will do anything to provide for them. It doesn’t do any good to try and explain things to our husbands anymore about money, so the entire load is on us. I too, feel like I need to be everywhere at one time and I’m always in a hurry, even if it’s my shower. There’s always something that needs to be done before bedtime. Now that my Mother has been diagnosed with dementia as well, it’s added even more stress to my life. I have no idea how I’ll get through all of this, and I’m sure you feel the same way. I’ve had stress in my life before, but I’ve never experienced stress on this level before and it scare the heck out of me. I also have to remind myself the impact of all of this is having on our boys. Your son might be young, but he knows what you are going through and probably decided not to call you, because he knew it would make you worry. Kids are a lot smarter than we think. My thirteen year old has really surprised me with some of the stuff he’s told me since his Dad has been sick. They pick up on a lot of things. If you find Superwoman, let me know. I sure could use her around here. Hugs, k

  8. How do you do it all. Our kids are grown, Joe lives in an Alzheimer’s home, and I am stressed. Karen you must get some help you can’t be all things to all people. Deane Johnson

  9. Susan Woollard says:

    I can usually help. I sent you an inbox with my number, text me any time. I will help when possible.

  10. Rita Hatke says:

    I hope to see you at the Forum so we can talk. I also want you to talk with my son, Jason. He was in the 6th grade when Mike was diagnosed (Jason saw a video in health class about Alzheimer’s and came home and told me that he thought his dad had Alzheimer’s). With that being said, kids our way smarter than we realize. Brad will probably never forget his lunch again or he will figure out a way to buy the school lunch. Trust me, Jason has had to do this on several occasions. He has a teacher friend who has loaned him money because I forgot to send him any lunch money-that always makes me feel like the worst mother, but it happens and thankfully my son is very forgiving. Hang in there Karen.

  11. Maureen says:

    Just hugs today! xoxoxo Maureen

  12. Grace says:

    GET HELP before you reach your breaking point! !Trust me on this, I’ve been there. Contact the VA, they may be able to provide free assistance. Your County may also offer some services. Please, Karen, so many people care about you and your family. Maybe ask a friend to do this research for you. Demonstrate to other caregivers that there is a better way to carry this heavy load. Many hands make for a lighter load (or something like that… whatever it takes to get you to find more help). With love and the ultimate respect for you, Grace

  13. Michelle Fox says:

    Karen, dear, nobody is Superwoman. Give that up. You must let go or I agree with some of the other comments, your health may be compromised. When I fully accepted Mom’s Alzheimers, my expectations went away. How could I expect a brain damaged person to complete a task that appears possible but in reality is not. Karen, you are very educated on this subject, you know. The picket fence is down, but you have your beautiful children, your parents and much support. It is so hard. A big {{hug}}

  14. Janet says:

    Karen, you’re a perfectionist, which is very tough in a situation like this. It’s about control, having to be in control of everything. You can’t be perfect and must learn how to let the small stuff go. Jim is no longer capable of keeping who gets which lunch straight. He can’t help it.

    It’s progress, not perfection, and you’re doing great. It’s a process, two steps forward, one step back. The big thing is letting go of the need for perfection.
    I hope you’re able to ask for help (family, friends, neighbors) for situations like the dentist.

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