Jim has tentacles in me. Every part of my being.They are wrapped around my mind, woven throughout my body and engrained in my soul. His warm, soft tentacles encircled my heart and as they balance it precariously, they seem to harden and tighten their grip. His tentacles reach into our finances and my role as a parent. There is a tentacle in most of my friendships and in my career. There is nothing in my life that isn’t touched by him and that hasn’t been for the past 19 years. And now Alzheimer’s Disease touches each one of those things as well.

Sometimes I feel his tentacles being snatched out of me and it sears as if I have been touched by a radiating iron cane. The scars have started to form as they leave their marks. I fight it. I fight losing his love, his touch, and his help with every aspect of my life. A life now being ripped apart at the seams.

There are times I think, I can do this.

And then there are the dark moments that come out of nowhere and cause me to sink into an abyss.

I will get a bill from his hospital stay and fight with Medicare for hours on the phone to no avail as he sits quietly watching from the couch. Not long after, the kids will embark into a loud discussion and Jim again sits silent. By now I am on edge and ready to snap and all it takes is something simple…a misplaced item, something left out that should have been put away, homework not done before the TV gets turned on or rooms not picked up or dinner needing to be fixed or the trash smelling up the kitchen and I am the only one who seems to notice….. Something simple, that in the whole scheme of things doesn’t matter, will cause an enormous amount of pressure and unhappiness. When in reality it is the tentacles; the long, flexible organs that are burning me from the inside out. They are reminding me of the loss of my best friend, my co-parent, my financial advisor, my handyman, my confidante, my lover, my future and my past.

Watching Jim sit in the passenger seat during the brutally cold winter as I got out to pump each tank of gas. Seeing him in bed, unable to put the covers over his feet. Listening to him interject into a conversation with an almost unintelligible sentence that doesn’t relate to the topic at hand. Watching him fumble with his belt and unable to understand as I explain he is missing a belt loop or his pants are unbuttoned. Eyeing the unkept hedge (remember the hedge?), the edging needing to be done, the overall unkept yard Jim would never have allowed to happen.

I feel as if I am becoming androgynous. My role as mother is merging with the role of father. Taking out the trash. Mowing the yard. All of the things typically done in a household by the male. I realize this is awfully sexist, but in every marriage, each person has particular things they do. In our family, Jim did the “guy stuff”. Fixing things, taking care of the yard (except for planting the flowers), doing the dishes after I cooked, helping with homework or playing with the kids while I did my “girl stuff”.  We had our flow of expected responsibilities. It is hard to remember he used to pay all the bills or was responsible for keeping track of oil changes and inspections due. It is all me now. Plus I am accountable for his well being and care. Does he see the stress I am under? Does he see the paint peeling on the house? Does it bother him when I have to help him pick out his clothes? When he hears certain songs does it trigger a memory of special moments in our past? Does he think about me that way anymore?

This weekend is our 18th wedding anniversary. I took Jim to celebrate at a nice Italian restaurant. While driving, I made a concerted effort to hold his hand. I had to explain to him where to put his elbow and make him understand it was ok. But it wasn’t his hand I held. It was a stranger’s. It didn’t feel right in my palm. There were no callouses and the muscle tone was different and the grasp was uncomfortable. I tried to start a conversation several times to no avail. I tried to bring up our years together, only for him to get teary eyed.

I eventually just gave up and we ate in silence.

It is because we knew each other so well Jim was able to get diagnosed so early. I knew something was off and wrong extremely early in this nightmare, even as those close to us doubted me and pointed fingers my way and insisted maybe I was part of the problem. (I am still psychologically battling that one) I think he knew too because he never argued with me. I think he has tried in his own way to make this all as easy as possible on the kids and me. But there is no way to buffer the pain from his tentacles leaving me as he observes in silence, staring at something far off and unseen by those around him.  The touches are gone. The smile is gone. The lovely handwriting. Gone. Conversations. Gone. Help with the kids. No more. The pride in the yard and in his appearance. No where to be found. The connection and the emotional support. Vaporized.

The tentacles will continue to burn and leave me damaged. Ultimately I must find the place deep within me to regrow and become the person I am meant to be. It is no easy task while he is so clearly still here and needing me. I can’t move on, but I can’t afford to stay locked in the recurring torture zone. I am searching for that balance and the tools that will allow me to do both; move forward and remain steadfastly by his side.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (11)

11 Responses to “Tentacles”

  1. Debbie says:

    It is such a hard struggle, you mourn for the person that was, for the person that should be by your side now and you mourn for the future without your spouse. But yet they are still here, but in many ways more as a disable child that cannot understand how to fend for themselves or even worse see danger. As a caregiver you are torn in so many directions and when you have children at home it’s even worse. It’s been 2 1/2 years since I lost my husband of 36 years, when he was just 55. Luckily our son was grown and I didn’t have that added pressure, but even now most of our friends have no idea what things really were like. The pain of witnessing each decline, and the added responsibility that is placed on you, is such torture. By the time we got the diagnosis, I know he didn’t fully understand what was going to happen. Fortunately I got good legal advice and we quickly got things arranged while he was able. But the frustration and pressure of being responsible for every decision can take its toll very quickly. I pray that you can find some peace in knowing that you are doing a wonderful job in taking care of your family, in being a spokesperson, and offering others a glimpse into your life. But most importantly you are an amazing woman! Yes there is always times we feel at a complete loss, or feel that we are failing, but know that there are many others that could not and would not do what you are accomplishing. Thank you for sharing and God bless.

  2. julie says:

    Karen I can so relate with regards to the responsibilities we, as caregivers now have to carry on our shoulders. You say it so well. If there is one positive aspect of this disease, it is that we caregivers become stronger. Like you, I too have taken on all of Paul’s jobs. We were a great team. As for conversation? There really doesn’t seem to be a point, except with small talk. The other day I told him a friend had died at my gym. She was only 60. He just looked up from the TV and then started talking about what he was watching. I asked him if he heard me.He said he had, but he didn’t know her so why should he respond. This disease is a lonely one. We are married but not really anymore and as you said in your last post. We are all in a holding pattern.

  3. Jeanne Sapia says:

    My thoughts and prayers are with you and Jimmy every day. God bless you both,


  4. Kathy says:

    Hi Karen: I feel terrible for your family. I think you are at the very worst point in the process of Alzheimer’s. Is there any possible way that you can get some in home assistance? Is a nursing home out of the question? Please don’t think I am callous:
    I’ve lived through this. Unless you have a huge amount of financial resources to provide round the clock help at home, helping Jim at home, with young kids and a job, may be well impossible to pull off without injuring both your physical and mental health. I know of one very loving spouse who finally acknowledged her husband needed nursing home care – far from abandoning him, she saw him constantly, but had so many of his basic needs already attended to. Please forgive me if I’ve overstepped here….wishing you continued strength!

  5. Barbara Smith says:

    I so look forward to reading your messages as Altzheimers is on both sides of my family & I follow with the fear of what my husband will do if/when it happens to me. This particular one hits so close to home as our lives too are so intertwined it will be difficult at the very least. But my heart is with you for that & raising kids too. Won’t medicare help with assistance? I do know the caregiver can go down quicker than the patient. You can’t be good help to anyone when you are done & it sounds like you are there. Have someone else check that out as you don’t need one more thing to do! God Bless you & prayers are for you and the children for patience, endurance & love.

  6. Joan says:

    I hear you sister! I miss conversation,as I go home after work there is a sadness as he is with a caregiver.
    But these are good days he is mobile and can enjoy his granddaughter,the most precious thing in our lives!
    This is the new norm,there is a place in heaven for all caregivers!

  7. Mary says:

    My heart reaches out to you. I took care of my husband for five years of Alzheimer’s. I so understand so much of what you say. I am so sorry.

  8. Karen I began reading your blog and it brings back too many memories. I usually swallow my grief but today I just sit here and cry. Paragraph 6 really hit me. I know this is a crazy statement but………Thank you for opening my heart to begin my tears. I know it is natural to grieve but I won’t let myself. God Bless you.

  9. Lee Ann says:

    There’s a reason its called “the long goodbye”. And every step of it is heartbreaking. Do they have respite care at a nursing facility near you? Where you can let Jim stay for a few days at a time while you and kids can go to renew. It sounds traitorous, I know. but you three all need some care yourselves. Lots of times the patient in long term care really likes to visit because there is no stress on them, they can relax too. You are doing great. I know you don’t feel that you are. but look at all the things you are dealing with. You are doing fine, and you will be fine. But I know it hurts.

  10. Janet says:

    You are in my prayers every day. It helps me to pray and ask that my fear, anger, resentment be lifted and I’m always surprised that it happens. There are times when I can’t muster faith so I say “I’m willing to be willing ….” I love the quote at the top of the page. Peace of mind is all about acceptance of the situation and more important, of ourselves. You’re doing the best that you can and nothing more is expected. If you can let go of perfectionism, hard I know, it will go a bit easier as well. You are a tremendous power of example for me. God bless you, Jim and the kids.

  11. Pati says:

    I feel exactly the same.

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