Strong Girl

 

Cliff Jumping in Bermuda, 1993.

Cliff Jumping in Bermuda, 1993.

I was held up at gunpoint. I was on my way from my car to my apartment, walking with the man I was dating and suddenly there were two guys with ski masks over their faces pointing guns at us asking for our stuff. I remained calmed. I looked at the gun, less than an inch from my eyes, and thought to myself, “it looks fake”. I knew well enough not to ask the person holding the gun if it was. I knew there were people working out in the fitness room less than 20 yards away. As my date was fumbling with his wallet, I was asking them if I could just give them my money so I wouldn’t have to go through the hassle of getting a new license and replace everything in my purse. No such luck. As I watched them coward away, I memorized what they were wearing. I told my then boyfriend to go in and call the police and headed back to my car to try to find them (I know, I know, I have been told numerous times what an idiot I was). As a single female, I had followed all the precautions: apartment on the second floor, overlooking the pool, next to the office, etc. It didn’t stop an event that changed my life and could have ultimately taken it. I learned  you can try to follow guidelines and do what you are supposed to do but it doesn’t alway mean things will turn out the way you plan or the way you are promised. I was calm, cool and collected until after the police left. Then I couldn’t leave my apartment after nightfall for months. I would stand in my window and cry. I was haunted by the sheer brevity of the fact a slip of the finger could have ended it all. I was not the strong woman I had been for 26 years. I was living in my own prison. I learned that night the guy I was going out with wasn’t for me and ended things fairly soon after. Three months later, I met Jim. And my life was again changed. But changed so that I regained my strength and my ability to be strong. I eventually was even able to watch shooting and guns on TV and movies. All with the patience and understanding and support of a savior.

When I was 24 I packed my car and drove from North Carolina to Las Vegas by myself (before cell phones!), not knowing a single soul. I moved there for a job and stayed long enough to meet Jim. Again, following the rules….called my parents each night, let them know where I should be the next day, didn’t do anything crazy while driving across this beautiful land of ours. At the time, it seemed a normal course of action for me. I would not have respected myself if I hand’t gone. The person I was then must still be inside of me…right?

Aren’t we always taught to follow the rules and everything will be ok? It’s not. Jim didn’t do drugs. He was a good person. He worked very hard and was good at his job. He was quite a catch. Jim was safe. He was a good provider, he was a good man who would make a good husband and a good Dad. I took the safe road. He helped others and gave more than he received. Why is this happening to him? He was a much better person than I. He was a better parent. He was an all around better contributor to society. How is it he is the one being taken early? The unfairness is blatant. And now I am fumbling daily to find my footing and keep some sense of perspective that will allow me to help him navigate his new shortcomings and help our children remain intact and keep our home and figure out dinner and keep up with laundry and make sure the schedule is updated and homework is checked and everyone has taken a shower and eaten and is OK. But am I OK? I don’t know. I just don’t know.

My point of telling you these stories is to remind myself I am strong and independent and capable to be on my own. I sometimes forget who I was before I became a Mom and then a caregiver to Jim. What do I enjoy? What am I capable of? Who am I now? Who will I be when all of this is over?

I am lost. Really. I know when people see me they think I am doing so great considering our circumstances, but I am not. Not by my standards. And that is the problem. My standards for myself are pretty high. Always have been. But I can’t do it. I can’t be the person I was. I can’t do it all. I can’t keep my mind clear and focused and be the best I can. I am the best I can right now, but it isn’t my personal best and it isn’t acceptable. And because I know this, it bothers me.

There are days that I have so much I need to do, so much running through my mind, that I just shut down. I don’t cry and I don’t feel sorry for myself, I just shut down. I don’t do ANYTHING. And then I am upset with myself for not doing ANYTHING, and it becomes cyclical. Even worse is the fact I am completely aware of my new shortcomings.

I am strong. I mean, I am a strong, independent, capable woman. Or, I should say I was. When Jim and I met and married, I eventually made more than he did. It was our decision for me to stay home with Frances and try different gigs out of the house so I could be a Mom first. We had enough to live on with just his salary and we were both fine with that.  It was never an easy adjustment for me and Jim was really always the better parent, even though I was the one home all day with the kids. He was supportive and understanding and not once complained. When I would meet him at the door with a kid and tell him he was five minutes late and he was on duty, he loved it. He loved being a dad.

Even now, as he declines into his own abyss, all he continues to tell me as he cries, is that he wants to watch his children grow up. As he can’t recall their names, he knows he wants to be there to be part of their world and witness their growth and maturity.

I can’t take it. It is unbelievable painful to stand helplessly by as he declines and becomes a complete stranger to all of us who love him.

Just as difficult is to figure out where I fit into all of this…. What is the right way to navigate all that is thrown at me daily while staying his wife, staying a mom, staying a friend, staying ME?

I realize that I am morphing into a whole new entity. I don’t care about going out anymore (HUGE change for me). I don’t care about the latest movie or TV show. I don’t care about keeping the house clean….yikes. So embarrassing. My parents came for a visit recently and I didn’t clean one thing. NOT ONE THING!! Not a bathroom. No vacuuming. No dusting. Nothing. I have had them visiting me since that infamous drive across country and there has NEVER been a single time I didn’t clean and get ready for their impending visit. Never. Now, I can’t seem to find the wherewithal to do much more than change their sheets, which I didn’t do until after they arrived. Embarrassing and telling.

No, I am not the old Karen. But I know I am not the Karen that eventually will be. I am in a holding pattern. Not sure I am crazy about the Karen I am, but I have to accept there are major changes and events going on and I have to give myself some slack. Not an easy task. I am trying. I am working constantly on finding me while holding onto the task at hand.

I am grateful for the strength I possess. I am so very, very grateful to friends who understand and accept my changes. I am indebted to my parents for continuing to love me unconditionally. How are people who aren’t born with an inner ability to find that power and resilience able to handle this horrible journey? I don’t know. I am barely surviving and can’t imagine being able to without my natural fortitude.

Stay strong. Stay you when you can and when you can’t, forgive  yourself and know you will be you again someday. Maybe a different you, but a stronger and more resilient you. Repeat.

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 “Strong Girl”

  1. Carolyn Edwards says:

    Oh, how I can relate to this!

  2. Phyllis Gallagher says:

    I understand completely. I also spend time doing nothing at all, my husband sits by me. I stopped worrying about the house, I only clean when absolutely necessary. I daydream about the future-the one we planned and various outlines for the ones to come. You are not alone.

  3. Ann says:

    You’re amazing, Karen. Sending prayers that you will continue to find strength, while being gentle with yourself. It may not feel like it to you, but for someone on the outside looking in, I see an incredibly courageous, determined, strong woman. You are one heck of a role model for your kids, a wonderful mother and wife. As life goes on, we all morph into different people – when we slowly lose someone we love to Alzheimer’s, the changes are more drastic. Still, I have complete faith in your ability to not only survive, but thrive.

  4. Lisa says:

    Sorry to say that I feel the same way. I am overwhelmed to the point of not being able to accomplish anything. I hate this for us

  5. Cathy Newby says:

    I admire you. This disease changed my life. I pray at nite for my mom to die in her sleep, sounds awful but I want my hurting to start healing. I’m different now

  6. Chris says:

    Right there with you, sister. My house is a wreck. I do the bare minimum to keep it inhabitable. I have never been this tired in my life. AND my husband is at an assisted living center!! My role has just changed to that of an advocate-again. Now, I advocate for my son’s free and appropriated public education. That’s followed by making sure my husband’s needs are met. He is non-verbal and very vulnerable. They take very good care of him. But I know they can’t read his mind. And of course, for some reason, because we have been married for so long, I know what each expression means. So, I become an interpreter for his needs. AND I have a full time career! So, yes, my plate is full and I’m learning to live in the moment. And being the planner and control freak that I am, that is no easy task. So, yes, I’ve come to recognize my limitations and accept that nothing is forever and there is only so much I can do. So, I make a concerted effort to find my glass half full. I’m learning to learn to enjoy these moments with him as they are fleeting. And on days when I just cannot find time or energy to do it all, I sit. It’s a balancing act, planning for the future while living in the moment. It’s all balancing act.
    Hang in there. You are not alone. We are all in this together…yet separately…

  7. When I changed all our utilities & etc from Joe’s name to mine I had to change my e mail deanejohnson@twc.com Karen, we plan our lives, college, marriage, mother, but we didn’t think we would find ourselves on this path losing our soul mate and now how to be a widow and be alive. I don’t know how to make myself whole again and how to fill up the days alone after 63 years. Knowing Joe and I will be together is the thing I hang on to. Bless you. I don’t know you that doesn’t matter I love you.

  8. Amy says:

    Wiping away a tear, I read your blog and the resulting comments, and it snaps me right back to where I was with my 50-something husband… The Alz., the depression, the house in disarray, the puddles on the floor, the endless loads of laundry, bedding, etc. Not wanting visitors or to go out, and finally having to keep track on a calendar how long it had been since I had a chance to shower.
    This week (May 1st) is the one year anniversary of his death. It has not always been an easy journey, but I am living proof that there IS life after the Alz. Trip and after the loss. The hardest thing I ever did was to place my husband in a group home, but I also had to admit I couldn’t care for him properly. Being the perfectionist I was (& that he expected), it was very hard to lower my standards in housekeeping, but when I think about it, I’m happy I can say I chose to spend that time with him… Something much more important than a vacuumed rug. I also had to learn how to ASK for help from my friends, & to accept their help. I will scatter my husband’s ashes this Saturday, with the help of three very good friends. I have learned to slow down & smell the roses. And more than anything, I learned that spending time with my husband was infinitely more important than cleaning my house, no matter how frustrating it was for me. Hang in there my friend; you will make it through as long as you are careful to take care of yourself. Let friends help, and be there for your children. I keep you in my prayers.

  9. Kimberly Smith says:

    I can relate so well. There’s no way we can go through the level of stress we do on a daily basis and it not change us. I just hate it. This disease is so cruel. Praying for you and your family.

  10. Elizabeth Brewer says:

    I remember the light bulb moment when I realised I was “losing it”. I sat in the school room until 6:10 one evening, getting progressively more angry at being forgotten by my ride. In a snippy and irate manner I finally telephoned. As I made the connection, I looked out the window and I saw my car. I had driven to work myself that day and did not have to wait for anyone. I realised then what this whole process was doing to me.
    Karen, remember that there are a host of us rooting for YOU (and Jim and Brad and Frances). We love you at the very stage you are RIGHT NOW and will continue to do so no matter what!

  11. Joan says:

    Karen Alzheimer’s is a thief,stay strong and don’t let it get you too. You are so young and trying to raise two children its got to be hard to give up your husband.
    I recently bit the bullet and hired a lady to take care of my husband and do housework,and went back to work.I have peace of mind at work and come home to a clean home,financially it’s a sarcrifice but worth it for now.I hope you can avail of a cleaning lady once a week,everything seems so much calmer in a tidy home and you don’t have to do it! Blessings!

  12. debbie says:

    I thank you for writing this even when you probably did not even feel like doing it. I feel the same way, I am in a holding pattern. I have health issues too and feel like the stress of seeing what is happening, and living in the continual sadness is effecting my health more. I pray sometimes for God to please be merciful to me and my husband, He alone knows how much we can bear. It feels alone, like the world is going on and we are just here at the edges surviving barely, not noticed.

  13. Janet says:

    Karen, your perfectionism doesn’t serve you well now and I’m so glad to see you’re starting to let go of so many self-imposed high standards. There simply isn’t anything more difficult than realizing how powerless we really are, especially over the big things in life like health. You, your children, Jim, are all doing the best you can and that is the penultimate in courage. If it were within my power I’d send you all the help you need. Have you considered crowd sourcing for funds for at home care a few times per week. Remember, people LOVE to help others and I’m sure you’d see a lot of support flowing in. I thought of you when I read this article:

    http://www.aplaceformom.com/blog/8-4-14-ten-crowdfunding-sources/

  14. Amy says:

    I’m in the same spot as you. My husband is 51 and I’m 43. We have a son who is 8. We are 5 years in with this disease. I work full time and handle everything in our lives. It’s sad to know what is to come. Just trying to live as normal as possible. This disease is so horrible .

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