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Expert Blog

Life is Complicated

August 27, 2015

Life these days is complicated. And overwhelming. And very, very trying.

In my mind, I can do it all. I can take care of Jim as he progresses, I can take care of the kids, to include playing the role of Dad, I can bring home the bacon, cook the bacon, and then keep the kitchen clean after preparing the bacon. And along the way, I can keep my hair looking decent, and every once in a while put on a clean, respectable outfit.

What a load of you-know-what!

I can barely get dinner on the table, let alone keep the house in some semblance of order. And it is now my normal to work my way through a couple of outfits that include flip flops, t-shirts (one with a hole) and comfortable shorts that have seen better days.

I am blessed beyond anything I could possibly imagine with our children. How can I express how very proud I am of them? Just this week, Brad decided to fix brownies all by himself while I was out. And he has started scrambling eggs by himself, and he took the initiative to actually fix a whole meal, including setting the table, while I was at softball with Frances. All of this after he had been at baseball practice for most of the evening.

Frances has started teaching herself a foreign language in the hopes of studying overseas, and has helped with laundry and the dog, plus helps with reining in Brad sometimes when I am just too tired.

Who wouldn’t be proud?

I am TERRIFIED of the impact this disease will have on both kids. Losing their father before he is able to teach them so many things, before they can mature enough to appreciate the limited time they have had with him, and after he is gone and they are adrift in the world with memories of watching his progression and re-hashing conversations and selfish thoughts and tendencies.

I recently took Brad with me to the store to buy some fresh ears of corn. This was while Jim was in a respite care program to give us a break. We picked out ear after ear, making sure they looked good before putting them in our bag. We got to three and I turned to go. Brad stopped me and said, “Why are you only getting three? We need four.” Then he paused, got a sad look on his face and said, “Oh yeah, Dad isn’t home anymore.”

Yet, the kids are thriving. They are happy (for the most part), they are achieving goals and moving forward. How can anyone tell what impact all of this loss will have on them later in life?

There is not a day that goes by where I do not ponder the best way to handle a particular situation so as not to cause a long-term aftershock for them.

So, I pick my battles and try to let things slide.

To decide what to worry about and what to focus in each moment of each day is exhausting. But even when Jim is no longer with us physically, the battle won’t be over. I will still be a single Mom. They will still have lost their Dad. They will still have endured years of participating in his care and wondering what was around the bend. They have listened and watched as I have fought to get help.

I am still fighting. I am ready to fight more, not just for our family, but for others. This is a major problem. And I am fired up. Yet, this time, this moment, is not the timing that is right for my family.

Not to worry, we aren’t going anywhere. It will be time soon enough, and I will fight like Hell for the millions of families struggling with the same heartache, the same choices and the same woes we are.

I am keeping tabs; there is so much help caregivers need. I am ready to fight for us all, but right now, I am not able to. My fight is with my internal struggles, my financial woes and my desire to care for Jim and the kids the way they all need to be. The way they each deserve. Oh, and at some point, take care of myself too.

When I stop too long to think about our life, what is truly happening, I get overwhelmed and scared and depressed. So, I try to just focus on this very moment (which is really, really hard for me). I have always thought ahead, dreaming of a life still to come. Now, my future is so murky, so lonely and so unknown, I can’t possibly try to plan anything past today. Yet, I must find something to look forward to.

What?

I know there is more to come, but it is unnerving to not have any clue what our lives might entail, other than losing Jim, which in itself is a hard pill to swallow. I would like to say that we will move on and get past this. I am sure we will survive, but I don’t know about moving on and being happy again.

How?

How do you get past the guilt? The loneliness? The heartbreak? I want to believe that once I am able to, I am going to pick back up the advocacy, but now it won’t just be for a cure. It will also be for caregivers and for helping the people like us who are stuck in the middle: too rich to get assistance, yet too poor to afford care. Why are millions of Americans affected by this fact and nothing is being done?

I certainly plan on being heard, but right now I have no time or energy. All I can do is live through this Hell and know that one day, I will fight for us all. Right now I am fighting just to make it through today and get to tomorrow.

Thoughts and stories from others

  1. January 3, 2016 at 12:19 pm
    Posted by Denise Sleeper

    Like you, I am in shock and disbelief that we can be experiencing the catastrophic impact of younger onset Alzheimer's and discover there is no help. We are way too young, not rich or poor and finding we are on our own to figure it all out. I too know that someday I will be a staunch advocate for other families, but for now....my energy must be focused on being 24/7 caregiver to my 49 year old husband who cannot be left alone, a mom to my two sons, take care of myself, and figure out how to keep our lives afloat. I hope some day we can join forces to change this experience
  2. August 30, 2015 at 03:15 pm
    Posted by Deane Johnson

    I find it amazing that for all the stress, worry ,and loneliness, your children began growing up faster right before your eyes. The years as a caregiver for my wonderful, talented husband I have become a person I am proud of. Maybe this would have happened anyway but I contribute my growth and my children's to Alzheimer's. Through the years we found a unique love in spite of the disease, we learned joy in small things, and now after the journey I have found a reason for my grief from a C. S Lewis quote. ...the pain now is the happiness and love I had then. Blessings, Dea
  3. August 30, 2015 at 01:10 am
    Posted by Chris

    Hang in there, Karen (like we have a choice!). The answers will come to you and your family. Life is not perfect nor easy. And right now we'd all settle for just a little bit easier time. But there is a plan for you and your family. It may not be clear at this time, but you will discover it as needed. Praying for you and your family and a solution for all of us! I believe that when my time has ended with my husband, I will pick up that advocacy banner and use my voice for patients, caregivers, a cure...but, like you, I am my husband's advocate, his voice...

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