Fighting the Good Fight

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It has been a couple of weeks since I have posted anything. I just haven’t been able to muster up the mental energy to write something legible and clear.

All caregivers go through bouts of ups and bouts of downs. I have been in the later.

I had a birthday and turned another year older.

Valentine’s Day . Nothing else to say.

Work.

Kids.

Kids.

Work.

Relationship stuff. Stuff from our entire marriage; not related to Alzheimer’s Disease.  I have learned something new that this disease takes from you. It takes the ability to have a spouse that can work through marital difficulties with you. Like a marriage should be. When normal life hands you decisions and hurdles, you slowly figure out how to navigate by yourself. I have been in the midst of trying to wrap my head around this since Jim started having difficulties doing so about 3 years ago. I am sort of getting the hang of it, but there are still times I really wish he could help me make a decision or two. But this, this new issue is forcing me to deal with a MARRIAGE situation. It is not dealing with him forgetting a conversation or misplacing an item. It is way past something that simply makes you frustrated (again) and then you move on.

When a disturbance has seeped into your marriage from years ago, you are forced to work on forgiveness and understanding. Now I am made to do so without a partner. Without clear explanations and discussions. Without a way to disperse my anger or hurt through a conversation and eventual understanding. I have been reeling from the realization that Jim may still be in the early stages of Alzheimer’s Disease, but he is unable to fix some things that I needed him to fix. It is now up to me to clear my mind, my heartache and my resentment. I must forgive him without his help. If I needed to be strong before, I am needing the strength of Olympic Gods right now.

It is happening, but at an excruciatingly slow pace. And during the process, I have had to start over. Start over with my grieving. Start over with changing my personality. Start over with thoughts of our marriage, our years together, our conversations and shared experiences. It is almost as if at times I was being torn from the inside out. The cloud over my head was black, dark and unrelenting. I don’t think all of the cold, wet weather the past couple of months has helped. If I am able to move past my pain, I think that I will have accomplished a small miracle.

So I thank all of you for your support, love and understanding. I am so grateful.

Alzheimer's Disease, marriage

At an Alzheimer’s Advocacy Forum in Washington, D.C. April 2012.

Sidebar:

I recently met someone who has a family member with Younger Onset Alzheimer’s. The family started reading my blog. They had questions. So he called me.

“I have to ask you. I mean, you lay it out there. You don’t hold back.” (Actually, I do quite a bit.) “Does Jim read this stuff? Does he know you write about all of this?”

Yes.

Jim and I have had many discussions (mostly before we did our first interviews and before I started this blog) about if we wanted to share our journey and how much we wanted to share. He is (or was) very aware of the blog: what I write and how much I share. He trusts me to do what is right. He trusts me to stay true to the good intentions of helping others and educating people that have no connection to Alzheimer’s Disease.  We both agreed that if I sugar coat our life, my feelings, his battles and eventual loss of capabilities, I would be doing a disservice to all of the other caregivers  that are struggling just like we are and would read those sugar coated words and feel alone. They would think they are the only ones feeling anger and frustrations and trapped and helpless. What would be the point? It is nothing for Jim (or any other person afflicted) to be ashamed of. I will not hide him away and try to pretend that this is easy. It is not. And there is no reason anyone should be made to feel ashamed. It is a disease that affects the human brain.

This blog has the byline: Confessions of an Alzheimer’s Wife for a reason.  This isn’t Jim’s point of view. It isn’t from the vantage point of my children. I am not taking care of my parents. I am a wife and a mother of young children and I am in the midst of a life altering fight. I am sharing my grief, my anger, my frustrations, my pity parties, my support, my love, my surprises, my world. Our situation is very unique. I have no map or guidebook. I struggle each day to write my own battle plan while I take on an invisible foe. I strive to help others so that I help myself. There are days that I am so low, I don’t think I could go any further South. Then there are days that I feel strong and alive and capable of dealing with all of this. I try to share both sides and do so honestly.

Sometimes I sit and listen to music and cry. Cry for me. Cry for my kids. Cry for Jim. Cry for all of the dreams that will not be. And I am allowed to. I am allowed to find a release for the sadness that fills me. I know each of us on this awful journey take into the mêlée what we need to survive. We make it through however we can. I think it is different if you are taking care of a spouse vs. a parent vs. a sibling. I think it is different based on how they are doing. I think it is different based on your other responsibilities and support system. I think it is different based on personalities and situations. There are so many facets of this disease with no timeframe or consistent continuing thread to allow each family dealing with this atrocity any sort of definitive roadmap.

I speak out and I speak up. Not everyone can or wants to. I didn’t choose this path I am on. It chose me. I have made a promise to Jim to do the best I can. For us. For him. For Frances and Brad. For the millions of others that are facing the same demon.  I hope one day we will celebrate a victory together.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (9)

9 Responses to “Fighting the Good Fight”

  1. Shirley says:

    Thank you again for sharing with us! I agree that valentines day this year was hard! So many getting gifts from spouses/significant others and my husband didnt even know the day much less that it was Valentines day! You have a spouse, you are married and your husband forgot valentines day. He didn’t get flowers or chocolates or even a card. He forgot. Not out of spite, cruelty or just too busy. He just doesn’t know Valentines day is something special or that it is any different! It hurts! The kids stepped up and did things but it isn’t the same! To have a simple rosé or a hand written note again, that would be so wonderful! But instead I got the same old smile that said “I love you” and was happy to get that!

  2. Debbie says:

    Karen you are so right, each of us that deals with terrible disease has to find our own path in how we deal with today. Each day presents a new set of demands, some days it is easier to breath and some days we feel like we are suffocating. I thank you for no sugar coating anything. And yes we do grieve over the loss of the companionship, the loss of the communicator, friend, lover and spouse. And the loss of the future together. Take comfort in what you are giving Jim and the kids, the time to be a family. The day will come soon when Jim may not be able to stay in the home (or at least not without outside help) and when he no lingers knows he has a family. You are doing an amazing job of holding all the pieces together, and I know each day seems like there are more pieces that try to escape your grasp, and at times it feels like your standing in the middle of wind storm try to pull the pieces of your life away. Ask for help from family and friends when needed. Hang in there it’s not easy but knowing you did your best has it’s rewards, take care and God Bless.

  3. Marye Downs says:

    Happy belated birthday! Your blog is wonderful and it is helping me become a better caregiver. Thank you for your amazing words of wisdom.

  4. Marybeth says:

    I think and pray for you and your family always! I just hope one day I can meet you in person. I am certainly one that can say I know exactly what you are going through. It has been 9 months since I lost my husband of 25 years, at the age of 56. I will continue my prayers for you!

  5. Ann says:

    Karen, I truly respect your honesty more than words can say. You’re real, and that’s what we need – no sugar coating, no b.s. – just REAL. So for that, I thank you.

  6. Molly says:

    I think you are awesome! How you are coping! How honest you are! So brave and your children are benefiting so much from your example because you are so real about it! And you are so right about how different it is for each situation. I have my mother in law and is not such a struggle for me because our house is full of people that can all help and do help! The hard part for us is seeing how scared and confused she seems when she has a moment of awareness. You are my inspiration! Keep up the good fight! You are doing an awesome job!!!

  7. Gaye says:

    Karen I do appreciate your blog from Sunny South Africa. I am in the same position as you with a spouse with early onset. All your words make sense and please never sugar coat your blog. The things you say are so true and I realize we are all in this together. You really are doing an amazing job with such young children and I agree it is different with a spouse and I have also had to learn to make all the decisions as my husband has no opinion on anything anymore. Lots of love, thank you.

  8. Gaye says:

    Does anybody know of any other Alzheimer’s blogs, please email me with details. Thanks. jos11@mweb.co.za

  9. Ellen says:

    Karen, I never had a spouse with early onset, but I had two parents with the disease (both now deceased). I can’t tell you how many times I felt exactly like you describe. It’s very very painful and very very lonely. Know that even if it doesn’t seem like it, every day you are growing stronger. One day, there is a very good chance you will look back and be amazed at what you got through (and maybe even appreciate the journey for what it has created in you). Meanwhile, big ((((hugs)))). Ellen

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