Nap Time

Screen Shot 2015-10-05 at 11.33.22 PMI have nothing. Nothing to say. Nothing to feel. Nothing to do. I am numb. I am going through motions and I am doing the obligatory foot in front of another, but the reality is I am dazed, confused and paralyzed.

I went to visit Jim two weeks ago. He got agitated, which I quickly learned meant he needed to go to the bathroom. So, I took him to the restroom and he pulled down his pants and WHAM!! Adult diapers. On. My. Husband.

The next week, I stopped by to visit. I couldn’t find him so I asked the two people working his unit where he was. They said he was just there. So, they start looking room by room. After a few minutes, Jim is found. In a room with the door closed, with a person in their bed and Jim in that persons shorts and one sock and nothing else. Jim’s clothes and shoes and socks were on the floor. And the shorts were wet. And Jim had no clue he was in the wrong room or wasn’t dressed.

So, I got nothing. No words of wisdom. No fancy antidotes or metaphors. I have a new me. Being a shocked wife. Being a mom of two children, taking them to visit their father in a home with people 20 – 30 years older and him not showing much emotion or interest. And them laughing at the residents stealing walkers from each other and repeating themselves and seeing a world that none of their peers witness. There isn’t an ounce of perspective that has prepared me to become the judge, jury, executor, pardoner, appeals attorney and bailiff. I have nothing, yet I am everything. To Jim. To our kids. And to myself. There is no person to keep me straight. To help with my parenting decisions, my financial decisions, my daily decisions and my personal decisions. It is all on me. I have nothing to help with the loneliness. The isolation. Really. I am my own island, mostly deserted, and I am afraid that I am slowly getting used to it.

Not really what I signed up for but nothing a nap can’t help.

I am ashamed. Ashamed that I have taken more naps in the past two months than I have in the past 10 years. I am ashamed that my paint is peeling off my house. I am ashamed that I pretty much didn’t wear make up through the entire summer and because I didn’t, I chose to hibernate.I am ashamed I have missed countless birthday and reasons to celebrate or support others. I am ashamed I have not been able to master the clutter in my home for months now. I am ashamed my children have had to fix their own meals many times throughout the past several months.  I am ashamed that I have realized only too late that there is no more time to take the videos or pictures or have conversations with Jim that should have been done. I thought I had but there will never be enough to overcome the new memories that are taking over. Memories of the new Jim.

He is moving on. Without me. He is progressing and losing his ability to speak, write or communicate. I have lost him while he is living. I am alone in our bedroom. I am alone late at night. I am alone in my thoughts and feelings and emotions. I am alone at social gatherings and dinner parties and ball games. I miss him so and at the same time I want nothing more than to move on. I want to leave the pain and agony behind. What an awful spouse I am to even think this. I long for him and all he was even as I wish I could just move away to a new place and start over, leaving the hurt and worry behind. I can’t. I can’t leave him, our kids or the friends who have surrounded us with love.

Maybe I will go away for a week and call it even. Maybe I will wait until the kids are out of the house and I will disappear into the sunset. Maybe I will just stay where I am and dream for a different ending. Maybe I will do a lot of things but certainly not while I am taking a ridiculous amount of naps.

Jim and I never had the perfect marriage. But we always had each other and the knowledge that we were in this for the long haul. We knew that we wouldn’t leave. I am not leaving, but I am not with him either. He is five minutes away and I am struggling to understand what has happened, where I am going, what I am doing and what I should be doing. Nothing about this situation is traversable with ease, yet I must navigate carefully, so I don’t one day look back and regret any decisions, impact the kids negatively, cause stress or harm to Jim, and most of all, cause unforeseen and irrevocable damage.

I am constantly wondering and second guessing….  should I make the kids go see Jim? Let them decided? Bring him home for a visit? Leave him be? Bring him to our favorite places? How much should I try to keep in his world while he is moving on to another place without us? I struggle each day and when I can’t move past whatever it is I am fretting over I usually decide to take a nap. And when I awake, I realize I haven’t gotten the myriad of tasks done that I should have, now I am an hour behind on whatever it is I could have been doing and I berate myself for not doing what needed to be done. But naps are sooooo good. They let me forget my problems, even if only for 30 minutes.

My new self  isn’t much different from my old self: Worrying about the kids, about Jim, about the future, the past mistakes, the present mistakes, and how to keep from making futures mistakes. But now I tend to shut down. Take a nap and come back to it another day. Now I can add in where I  worry about all the stuff I am not doing because I am taking a nap.

I am better than this. Jim and the kids deserve better than this. I will be a stronger. One day.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (19)

19 Responses to “Nap Time”

  1. Jeri says:

    Another post I could have written. When Dwight was still with me I couldn’t sleep. I lay in bed like a woman with a newborn nearby……afraid to doze…….he might get up…he might need me…..he might have another seizure….he might go outside and wander off and get lost…..he might eat something that could hurt him. If only I could sleep for a little while….that’s what I thought. Now I’m alone in the house. All those worries I had just a few months ago gone. But still sleep eludes me. Now I lay here and wonder what happened. How did it all happen so fast? How did i live through it. What could I have done different. ..better? Karen, you are exhausted! Mentally, physically, and emotionally. I remember what that feels like. In fact, I’m not sure I’m over those feelings yet. I feel like I should be though. Please let’s give ourselves a break. We deserve it, I think. We have kids that need us to take care of ourselves…right? Mine are older than yours and out of the house, but they still need me. So you take a nap ANYTIME you feel you need one! And take all of this ONE DAY AT A TIME! Maybe sometimes even an hour at a time. Whatever works for you. Just please take care of you.

  2. Frances Gardner says:

    Your post also leaves me without words, empty of anything soothing to share. I’m so very sorry that this horrible disease has not been eradicated. It’s 3:30 AM, and I haven’t been able to sleep, so please take a nap for me.

  3. Kathy Pekar says:

    Naps are our friends! Let yourself reboot. The chores and decisions to make aren’t going anywhere without you!

  4. Nancy Thompson says:

    I am in my 60s and my husband will shortly turn 68, he’s been ill for probably 9 years. Between the hours of 1-4 am I am awake, unable to get up because he’s not really asleep. Once he does get up it’s time for his pills, a shave, food, etc. He goes to bed right after he eats so if supper is at 5:30 he’s in bed by 6 or before. We have no friends, my family sees us on major holidays. What I have done it move on with my life. My home was and is like yours. Your kids can help you pick up the pieces, you can find someone to help you take care of your house. I haven’t given up, it’s not easy but you can do this. Please take care of yourself.

  5. Connie Howard says:

    Karen, I have just walked those steps you are speaking of with all the emotions that you mentioned. I do encourage you to keep checking out other facilities. Thankfully the last one and the fifth one we tried, Glenn was in treated him as a person.I too used to take naps as I was so exhausted more mentally than physically. It is what you need. I too just wanted it all to end for both of us. But now that Glenn is gone, I am missing him terribly. It is hard adjusting to reality that my dreams of growing old with the man I married will never be.Feeling a little lost but I do trust in God’s plans for my life. Hugs, prayers, and unexpected blessings in your life.

  6. Martina says:

    I am speechless, my heart aches for you and your children. I wish I had words to offer you as comfort but I know whatever I choose to say it would ring hollow. So, I lift you and your children up in prayer.. I pray that God Himself would reveal his love to you and draw you closer to Him for comfort.

  7. Jill Clark Page says:

    Karen I am so sorry that the world is speeding.

    Based on this post I think it be beneficial to you to meet with the director and those that care for Jim. The insight I believe will provided you on things like visiting, the kids visiting.

    Sounds like taking him out would be difficult-I finally stopped taking mom out and she was glad.

    Getting back to normal albeit new takes time.

    Let the clutter, wait a month or two then tackle one thing at a time.

    You have done the right thing.

    I am proud of you!

  8. Molly Rountree says:

    Karen, if taking a nap is helping you cope then you are amazing. You are doing a great job. I am so proud and honored to know you.

  9. Lois keller says:

    You will.
    Have you contacted Hilarity for Charity? They have grant programs for helping care for early on set ALZ, for people just like you. I know your exhausted, but give them a call or email if you can. http://www.hilarityforcharity.com
    Always wishing you peace with your decisions along this road.

  10. Danica says:

    I hope you find comfort in the one true Healer, Jesus Christ. He is the beginning and the end. He is and always will be Redeemer, Comforter, Healer, Father.

  11. Patricia Farnham says:

    Healing thoughts for you, Karen, as I read your blog again. You are brave and mature beyond your years. As a caregiver wife, I too wonder what the future will hold. Wonder why we cannot find more to help those living our days with dementia. Enjoy your naps, they help to restore your spirit.

  12. “I have lost him while he is still living” If I had known in 2002 that that statement would come true I could not have been the wife I became. Self discipline( refusing to absorb the obvious, giving Joe comfort if it was only a candy bar.etc.) is the only way I managed to make it to the finish line. It is over, Joe is gone in body, feelings of curling up in my on cocoon is constant. I am just living wondering if one day I may feel alive again while traveling solo. Karen you must have feelings of steel, the name of my next book. In 2005 or 06 Joe told me I was going to need feelings of steel to survive. He was lucid at times. The curtain has come down but I must find those feelings of steel and remember Joe before” I lost him while he was living”. I am stuck in the “after” and I don’t know how to find the way out. I hear myself telling Joe to come and get me but that is selfish. I have children and grandchildren to show them my love and strength in the face of tragedy.. Prayers to all my sister-caregivers.

  13. Chris says:

    I know these feelings all too well. It has taken a year for me to begin anything related to my house. Naps have always been my friend, but more so over the past year. Your body needs the rest. Don’t ignore it. It is what you need. Listen to your body. Talk with his facility. Ask for explanations. Ask why no one knows what’s going on with Jim. Your roll has changed from caregiver to resident advocate. You can do this. You can’t do everything. So do what you can and the rest will be there-later. It’s a new life for you. I let my so. Decide if he wants to see his dad. Most times he does not. It’s too difficult for him. When he does go, it’s either for an event at the home or we pick dad up and take him for a ride in the car. Believe it or not-everyone seems to enjoy it. Then it’s back to the ALF and we go home. Prayers for you. You are not alone and are doing just fine-not great-just fine. And that’s okay.

  14. Lee Ann says:

    I think you are in the midst of adusting to the changes. its not easy. But you are doing fine. Take it one day at a time. also I think you should read through this post, and think of it as something that someone else has read. Read it and see how much that person is doing, how difficult the decisions are. And you will realize you are doing pretty darn good! You can’t do it all every day. Do what you can with thoughts of love for everyone around you. That’s all we can do. Give yourself a pat on the back. You are getting through the worst of it now. And doing it well.

  15. Regina says:

    Karen,
    You’ve reminded me again that I need to have my husband video tape “memories” for our kids. We were both widow/widower when we remarried. Our older girls were 5 &3 when their Mom died. Our oldest one, 34 now is having issues with being an “orphan” not to mention being just months away from the age her Mom was when she died. Thank you for the reminder of the unknown “time bomb”.
    I also went into DEF CON mode today when someone in that true “southern T.O.N.E” suggested that I might feel “better” if I just put some makeup on. I just asked her in my best Darth Vader voice to repeat herself, then suggested that she was probably about 5 years overdue for a makeunder. Pfffft people, just because you say it oh so sweetly, doesn’t mean that I won’t choke you with my stare. I truly need to make an appointment with an optometrist, my eyeball is hurting. Perhaps too many eyeball rolls?

    • Andrea says:

      I love your attitude Regina! So funny. We definitely have to try to make light of some things or we’d go bonkers.

  16. Regina says:

    Oh and I forgot to ask about the 30 day respite care from VA. Did they extend it? Confused & sleep deprived.

  17. Delaine says:

    Karen, you are truly my hero. You have shown more strength and wisdom than I could ever hope for, but yet I wish for on a daily basis. Please don’t ever sell yourself short. You are doing the best you can do under horrific circumstances. You are only human trying to do a super human job. I wish I had enough words to take your pain and heartache away. If I did, I’d fill this comment section full. Please do what it takes to take care of you and I hope you can just take it one minute at a time. God bless you and your family.

  18. Judy says:

    Karen…. I thank God this morning for giving you this time of rest. To allow your brain to slow down…and to give your body and soul the time to gather strength and know Jim is being taken care of ..and you are being RENEWED with new strength to pour it into your wonderful kids, and let them bless you ! Consider yourself blessed to have been given two darling kids. You are going to do GREAT THINGS !!! I just know it !! Rest !! it’s ok…it is needed…it is in the plan….it’s okay. You are doing what you NEED to do.

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