Happy What?

Ice Skating, Dec. 2014.

Ice Skating, Dec. 2014.

There have been so many wonderful things that have happened in my life over the past month. But there have been so many horrible, ugly things too. I feel as if my life is one big oxymoron.

I am overwhelmed. Not just by holiday stresses. Those are actually a few things that pull me away from the normal stresses. Yes, stringing lights on the tree by myself versus the way it has been for the past 18 years sucked. Yes, shopping for everyone (including myself) by myself, sucked. Yes, there have been moments of extreme bitter nostalgia; when you remember how it was and realize it will never be that way again and you just have to keep moving on, but it doesn’t mean you like it and it doesn’t mean you are happy about it. You just do what you have to do.

There are times that I think the kids being so young while dealing with Jim makes it so much harder. And I think how much easier it would be if they were grown and on their own. But, there are more times that I realize them being part of our home right now, in this moment, saves me over and over again. I probably wouldn’t care about a tree or decorating (honestly, I only did about a third of our normal this year) and I probably wouldn’t sing along to songs on the radio quite as much and I am pretty sure I wouldn’t give two cents about watching any Christmas movies or seeing Christmas lights or even worrying about family traditions. Traditions I realize at moments of clarity are dwindling but I steadfastly cling to in the hopes of stabilizing their childhood. Traditions that have become more of a burden than moments of fun and familiarity. I struggled to get the tree from the same tree farm. I struggled to have us all decorate said tree. I struggled to do so many things that have become part of what our family does every year. But this year, I have secretly thought to myself, “Will I do this when Jim is gone? Will it matter and will we all want to do this? What is the point?” It is hard not to picture our life without him when he is still here, yet he really isn’t here, so it makes it somewhat easy to picture a life without him. Again, my life is one big oxymoron. How can he ice skate so beautifully, yet not be able to figure out his seat belt buckle? How can he walk the dog numerous times a day, yet not realize he is still in his pajamas? How can he eat like a horse over and over and never seem full or gain weight? How can he be slipping away from us so steadily and yet so slowly? It is all so confusing. How does anyone manage to live through this for years on end? How can I? How can the kids?

Frances asked for very few things this year for Christmas. Less than five things.(Actually both kids had extremely short lists compared to myself at their age) One of the main things she wanted was to see The Piano Guys in concert. When she first mentioned this, I had no idea who they were. I had never heard of them. So I went online and saw they are  a pianist and a cellist. They play beautifully and their closest concert to us was 4 hours away (with a good day of traffic. For us it would be 5 -6 hours). I contemplated for a very short time before deciding if my thirteen year old daughter wants to see musicians like this as her main gift, well, I am going to make it happen. So, I got tickets for her and I. She would have to miss a day of school, so I didn’t want to add Brad to the mix. About a week out, I realized,” Oh no! I need to have someone watch Jim and Brad!.” That’s right. I hadn’t thought everything through. When I bought the tickets, Jim would have been able to stay the night by himself with Brad just fine. But as time has moved forward, so has his Alzheimer’s. I cannot possibly put into words the sheer heartbreak I felt when I accepted the fact I needed to come up with a solution for that night away. It was no longer just a boys night alone. It was an ordeal and something much bigger than a simple concert. It was a new stage of our game. It was another slap in the face.

So, a friend stepped up to take the two boys. Another friend eagerly watched the dog. It was a lot to plan and organize. In the end, it was worth it. I think Frances and I needed this time away together. It was special in so many ways and I am grateful for being able to do so. We were finally to our hotel when I get a call from Brad. Jim didn’t want to go to our friends’ home (we have been there dozens of times) and he was getting irritated. The friend getting the dog called and reiterated what Brad had told me. The stress that flashed through my body is immeasurable. What could I do? I was 4 hours away and unable to help. Both friends told me to not worry about it, they would handle this and to enjoy the show. But how could I? What if they regretted agreeing to help us? What if this turned into a huge pain for them? What if this is the night that Jim decides to get violent? When I spoke to Jim on the phone, he told me he was fine, never complained a bit about going to stay with someone else and showed no signs of being upset. So weird!! I had wanted to take Frances for a nice meal, but we were running late due to traffic and we ended up getting something quick and heading to the show. We got there after they had started. I could feel myself screwing up the one thing I was trying to do right. I was in a state of panic. Running late and worrying about things back home. It seems that is the normal for me now. I do this on a daily basis as I work and try to keep tabs at home. It is the most stress and the most failure I have ever felt in my life.

The concert was great. I highly recommend them. As we sat and listened to their show, they played a song, Emmanuel, and I listened with such sorrow. It was beautiful and haunting and reminded me of Jim and our love for each other and the fact that I was taking this trip without him because it would have just been too much. As I listened to the sweet sounds, I thought of our plans for the future and past Christmases and how I wondered if he would be with us next Christmas. I looked around at the couples and the families and I hated the fact that our family will never be completely whole again. Yes, Jim is still with us, but in truth, he isn’t. Not the real Jim. Not the Jim that would laugh and participate and want to be part of decisions about what we were doing and what everyone was getting and even acknowledge there is a holiday among us.  I am lonely. I am sad. And I have had a really bad hand dealt to me and to our family. But, I can see the love our friends surround us with. I can see how blessed I am to have my parents to help us. I feel love from perfect strangers. I am forced to re-write our story on a daily basis and I must understand that my attitude and my point of view will determine if that story has a happy ending or not.

I wish you a very Merry Christmas or Happy Hanukkah or Happy Kwanza or just a perfectly peaceful time of year. We all need some peace in our soul and I send it to you and wish it for you. It will be what saves us all.

Frances and I at The Piano Guys concert. Dec. 2014.

Frances and I at The Piano Guys concert. Dec. 2014.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (12)

12 Responses to “Happy What?”

  1. Lisa says:

    It’s so nice to have some mother daughter time. It’s hard to not wish for the way things used to be especially during the holidays. Wishing you a very Merry Christmas!

  2. CKH says:

    Your honesty about this horrible disease, the journey, your authenticity and the progress is refreshing and validates so many people who are dealing with this every single day. Thank you for sharing your struggles and joys and shedding light on a disease that impacts every single day in ways that those who don’t deal with it do not know. Wishing you peace and a moment of contentment every single day.

  3. Mariarose says:

    Hold fast to your Christmas traditions. They are what makes your family special, no matter how many of you are gathered together each year to celebrate. This year I cried while I was alone baking cookies. It was something I loved to do with my Mom, and then my children. My Mom (she had dementia and died this year) and my boys (who are grown) have not been with me to bake the traditional cookies for years, but I can still remember them all, and it brings me joy (and tears.) Fortunately the boys will be coming home for Christmas day, my Mom will only be there in our hearts.

  4. Kimberly Smith says:

    Thank you once again for sharing your story. Your blog has helped me in so many ways and realizing I’m not the only one overwhelmed, lonely and with so many other feelings all at one time. Christmas has been sad for me this year as well. The realization of being a widow in my 40’s and the effect it will have on my boys. I think of you often and pray for your family. I hope you have a quiet, peaceful Christmas and able to make some beautiful memories for the kids. Sending hugs your way, k.

  5. Linda says:

    this is our first Christmas without our Wanda…my brother’s wife….we had 13 years to get ready…but she is sorely missed…even tho she is gone…her traditions do give a source of comfort to those remaining…honoring our loved ones brings a feeling or normalcy…if that makes sense…
    your kids will appreciate you keeping those traditions going and remembering you kept things a normal as you could…you’re doing a great job…don’t be so hard on yourself…hugs from jax nc

  6. Wendy Sweigert says:

    It is times like this that keep you focused on what lies ahead in your life…your children will be there when Jim isn’t. That’s what I tell myself about our girls when we are together. Hold tight. I believe we are nearing the end with my husband. His dementia is worse and there is talk that the cancer he has has spread to his brain. I feel my heart breaking every day.

  7. K. Chattin says:

    All I want to say is….((hug)) to you.

  8. Joan says:

    Merry Christmas Karen,your blog has helped me so much.Hope you and your family enjoy New Year’s!

  9. Sandy says:

    I wanted you to know that a month ago I called Jim while you were at work. We chatted and I asked him what I could send him for Christmas. Immediately he told me he wanted Karen to have a spa day where she didn’t have to take care of him or kids . He is still in there and loves you so much.

  10. Janet says:

    On 9/11 my neighbor died in the Twin Tower, leaving a wife and three children under six. After a year or so I asked her how she held it together; her reply: “what choice do I have?” A very big hug and best wishes.

  11. Karie says:

    Karen .. I was in tears when I read what you had written because it was exactly my story also except I wasn’t able to give my daughter what she really wanted for Christmas. I am glad you and Frances got to have moment together. I pray that I will get that chance too! Hopefully 2015 will prove to be a better year. Bless your family.

  12. dementedgirl says:

    Am amazed at the maturity of your daughter! At that age, I would have plumped for the Back Street Boys…

    Hope your Christmas and New Year had some happy times in amongst the stress and pressure as well…

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