What have I missed?

 

Brad, Frances and Jim at the tree farm we go to each year to tag our tree. We return in Dec. to cut the tree and bring it home.

Brad, Frances and Jim at the tree farm we go to each year to tag our tree. We return in Dec. to cut the tree and bring it home.

“Did I miss going to tag our Christmas tree?”

“No, we haven’t gone yet.”

“Oh, good. But we need to go soon, all the good ones will be taken.”

This is an exchange between Jim and myself earlier today.

At first I thought Jim believed the kids and I went to tag the tree without him. Then I realized he wasn’t sure if he just didn’t remember going. And then I was sad. Very, very sad.

I sometimes probe Jim to see if he realizes when he asks the same questions or if he realizes he is forgetting things. I get mixed answers and I never really am sure what the real answer is.

Today, when he called, I got the answer I was searching for. Not the answer I was hoping for, but an answer to understand a little more of what is really going on inside of his mind.

Frances and I tagging the tree, Nov. 2011.

Frances and I tagging the tree, Nov. 2011.

Nov. 2008. Jim and Brad.

Nov. 2008. Jim and Brad and Frances in search of our tree.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (15)

15 Responses to “What have I missed?”

  1. Michelle Fox says:

    You ask, What have I Missed? I will tell you. You are missing the best years left of Jim’s life with you and his children. This post angers me. You speak out about Alzheimer’s disease. You don’t need to embarass Jim! you knew darn good and well, 1 year later, as this disease progresses, he did not remember. What was the point? You need not shame him into remembering, it will not work. Karen, you are much much better than this.

  2. Marsha Carpenter says:

    My husband forgets the 1,000 blue spruce we grew at our previous home & how he took the kids in our family in the Kubuota & found the “perfect tree” & put it in their Dad’s truck. And yes it hurts, it hurts like hell and if I had a nickel for every tear I have shed then I could find a cure. Just answer the question, over and over and over. Patience was never a virtue I had but I have learned that I must embrace it. At least he remembers the tradition, at least for now. Count that as your blessing! I think of you every day as I leave for the nursing home where he looks for me. Peace.

  3. Michelle Fox says:

    Please Karen, respond to why you put Jim on display ripping and crying his guys out about not seeing his kids later in life. Please, what is the point.

  4. Karen says:

    Michelle,
    I usually don’t comment but since you have asked me to and seem so upset, I will.
    Please re-read the post. Jim called me, thinking he could not remember going. I assured him that we haven’t gone yet. I have not in any way put him on display. He was not crying today, I am not sure where that came from. This post was a simple story from today that I know many others go through. It was a look into his mind. It showed me that he is aware of forgetting things and was calling to find out if he was again forgetting something he couldn’t remember doing. When I ask him sometimes if he realizes he is forgetting things, it is with respect and during a lucid time for him. It is to better understand him and to help him. I think you have misunderstood this post entirely.

  5. michelle says:

    Keep writting Karen. I can relate to 99% of what you so wonderfully put into words. I am not brave enough…someday I may explode but your words mirror a lot of my feelings.

  6. Jennifer says:

    Karen this post brought a flood of memories of when I first realized how advanced my Dads Alzheimer’s had become. My Mom was out of town and he called me early one morning and asked me if the time had changed…it wasn’t anywhere near time for that! I told him no it hadn’t and asked why. He said he just didn’t want to show up for church and find no one there. Also, my husband has a TBI from a stroke 5 years ago, and he repeats stories and questions a lot. So I relate to your posts on different levels. Keep posting. Knowledge is power and your experience with Jim will help so many others. Including myself. Thanks for sharing your experience with us. <3

  7. Maureen says:

    Someone said to me once, “they don’t know what they don’t know”. This is probably the hardest part – just trying to understand what it is like from our husband’s perspective. And, it’s frustrating. Sometimes I will explain something to my husband not even realizing that he may not even remember the directions I gave him only an hour prior. Tomorrow we have the neurologist . . . always a difficult day for me . . . Not so for my husband. He will tell the doctor he feels great and he’s happy, I’m sure. I, on the other hand, will be concerned about the doctor’s thoughts about my hubby and what’s to come.
    Anyhow thank you Karen for sharing and thank you for giving me a place to share too! xoMaureen

  8. CiCi says:

    Hey Karen. Knowing you IRL, I have to say Michelle Fox is being a b* and maybe she has some other things going on in her life that are making her angry. I ask you not to take her comment personally. I know your heart and I am sure you meant nothing by it. I think it is a good story and I understand your point behind posting it. I think you are brave to be so honest and I wish there were more people like you in the world. I love you, girl. Haters gonna hate.

  9. C says:

    Karen — I understand your post completely. Keep writing YOUR story because it continues to help so many of us out here living with a loved one who is fighting Alzheimer’s disease. Love you, Respect you and Always here for you.

  10. Lee Ann says:

    We need to remember that there are five stages to grieving. And one of them is anger. I remember when my Mom died, I was driving to Walmart to buy a pair of black shoes, and someone cut me off in traffic. I was immediately furious! “How dare he cut me off. Doesn’t he know what I’m going through?” No, he didn’t. The world continues on, even when we are grieving. I’m sure Michelle F is struggling through the stages of grieving, as we all do. Because the anger is internal, we search to find something to justify the anger.

    One of the reasons for your blog is to get things in order in your own mind. How could you get things straight if you can’t say what is on your mind? There will be a lot of conversations showing the cognitive problems. You have to use real conversations, and I don’t believe you are damaging at all. Its good to get it said. And there are a lot of people here that need to have a place like this to go and read. Its helpful to you, and its helpful to them.

  11. Michelle Fox says:

    CiCi, I am not being a b* to Karen. She knows I support her journey 100% you are out of line. Forgive me Karen, as you know, I live with being a caretaker to my mother for 10 years now. We are nearing the end. I was referring to the video, that was where Jim was crying. I know how much you love your family and you are do brave for putting your life out here. I just want you to try and find bits of happiness. I thought I knew what was coming, I thought I was taking in as much of the good as I could, I don’t know, we always think..what if…I am just trying to spare you some of the pain, if that is possible. {{Hugs }} Karen

  12. Sara says:

    I understood exactly what you were talking about. It seems my husband is at a similar stage: he knows he is forgetting the majority of things and he is really, really scared about this. As for Ms Fox and her comments, I think we both know that the time we have with our husbands is the best it will ever be, but it still is so very hard to watch our loved one slipping away, and being aware of it! I am guessing that she meant well in reminding us that these are the best years, yet it lost something in translation. All the best to both of you!

  13. Denise says:

    Michelle –
    I honestly think you are being too hard on Karen. I understand perfectly what it is like to care for a parent with this disease. I took care of both my mom and dad for 11 years. However, it is very different when it is your mate as crazy as this may seem. My husband also has early onset and believe me it is constantly trying to figure out what is being said as opposed to what is meant. My husband is also at this stage. It is extremely difficult to see what is happening before your eyes.

  14. CiCi says:

    Michelle, I am sure that you care very deeply about Karen and her family. And I am also sure with this being so close to your heart you get passionate about it. I completely understand and respect that. I just know that when my mom was dying from ALS I tended to lash out just because I was so overwhelmed. I didn’t mean anything by it and at the time felt completely justified. But she passed away just over three years ago now, and since I’ve had time to clear my head and introspect over the way it affected me I recognized some of my past behavior in your comment. Like I said, I’m sure you didn’t mean anything and you’re trying to help- but it was a little judgy and I think Karen is brave as sh* and I’m going to defend her. Not that she needs it. [:

  15. Vivian says:

    Karen, read some of your posts. I believe you need to contact Gary Null as he has truly helped a woman with early onset Alzheimer’s reverse he disease. Try reaching out to him. Google him.
    Vivian

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