The Happiest Season of ALL…

Christmas, Alzheimer's Disease. Frustrations

Jim and Frances, Christmas Eve, 2009.

Every once in a while I have a hard time finding the appropriate words to share with you. Oh, I have words forming in my mind; swirling and circulating, but they aren’t always appropriate and necessary to share. They are words that I try to push away: like sweeping wet dirt on rough concrete. The top layer moves, but you can still see the remnants after the broom passes.

I know the holidays are hard for Alzheimer’s families. I know this, yet I try to think that our holiday will be different. Not like others going through this same shitty cycle. Last year, as I was talking to a good friend, I was lamenting that I didn’t know if that would be our last “good” Christmas with Jim and that I needed to make it special and I didn’t know how he would be this year. She very sternly replied,” You don’t know what is going to happen. THIS may be the best Christmas ever and next year may be even better. You can’t sit around thinking these things because you just don’t know. You need to just enjoy this Christmas.”

Boy, was she right. Last year we had an awesome Christmas. We probably had the best one ever. It was relaxing, it was emotional, it was special. We spend every Christmas at my parents. Last year there had been a health scare between Thanksgiving and Christmas in my family and as a collective whole we ALL decided to scale back, not do as much and to enjoy each other. It was wonderful. It was exactly what my dear friend had told me it could be.

Last year Jim was having some trouble putting the greenery/lights up on our front porch. So, another awesome friend stopped by and put the decorations up for him. It was a simple gesture, but it saved Jim hours of grief and stress.

This year, I completely had forgotten and when I left for work on Monday asked Jim to put the greenery/lights up on the porch, as he has done for as long as we have been together. While I was sitting at a lunch meeting, Jim called. I answered and heard him crying.

I just can’t do it. I can’t put them up.

 Why? Why did I ask him to do this? Why do we have to decorate our house for Christmas? Why can’t I find the time to do everything? Why? Why? Why? I told him I was sorry, that I should have never asked him to do that and not to worry about it.

There really is this very fine, delicate line to walk. I have to give Jim tasks to do, yet I must make sure they are tasks he is able to do. Sometimes the “simplest” thing he did just a week ago is now something that seems foreign to him. Sometimes I forget he can’t do it. We spent years learning each other and setting our “marital chores” in place. You know what I am talking about. In every marriage there are the things one spouse does and other things the other spouse does. It is hard to take the expectations of them keeping up with their side of things off the table. On top of that, Jim is still aware of what he isn’t able to do and it is a very hard pill for him to swallow. Actually, he does a fantastic job, but I know it hurts him and it makes him sad. Sometimes when I don’t give him anything to do, he just seems to wander around our tiny house, lost in thought or trying to figure out what to do. I am not sure. But either way, he does better with a list of items he needs to get done.

He stood by as I strung the tree. He took 3 days to put the candles in our windows (no, we don’t have that big of a house). He watched Frances put the lights on the front bushes. He got confused when I asked him about wrapping paper.

Yes, I find it hard sometimes to write words that are appropriate to share with you. Not because I don’t have a lot to say. But because I am hurting. I am sad. I am depressed. I have a problem that I can’t fix. No one can. And why bitch and complain when there is no solution? Because it makes you feel better. For about 30 seconds. And then you feel bad. REALLY bad. Because you know it isn’t their fault. And then you start the cycle over. Feel Bad. Bitch. Feel ok. Feel Bad. Bitch. Feel bad about bitching.

It’s the happ, happiest season of all…….

 

Alzheimer's Disease, Younger Onset Alzheimer's Disease

Frances and Brad, Christmas Eve, 2006.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (5)

5 Responses to “The Happiest Season of ALL…”

  1. Kimberly says:

    Bless your heart Karen, I’m so sorry. I can sympathize with everything you are feeling. It is hard to stand by and watch your husband struggle with things most people do without even thinking about it. We had the same problem with our greenery around our door. He couldn’t put it up no more than he could fly and then he became sad and depressed. It’s an awful cycle. You never know what to expect. We have to stay strong, but it’s so very hard to do, when I really want yo curl up in a ball and cry, but that’s not an option. Praying for you and your family and always praying for a cure.

  2. Mary says:

    Karen, I am so sorry, and I can completely empathize with you. Last year I stupidly asked my husband to clean an oven. Big mistake! Can you say chemical burns? And it just went from bad to worse when he refused to see a doctor. Here’s a link – you can read the story if it would provide any consolation to know that you are not alone: http://downtherabbithole-mary.blogspot.com/2012/11/stupid-stupid-me.html

    Please don’t beat yourself up; it’s easy to forget their limitations. I set the bar very low now- as long as he didn’t kill himself or anyone else – I just march on with a shrug of the shoulders and an “Oh well!”

    I know it’s lame, but here’s a big cyber {{{{HUG}}}} I hope you can find some joy and happiness this Christmas season :)

  3. Karen, thanks, as always, for opening your heart to all of us. Your honesty is refreshing, and there are so many caregivers out there who are relieved to know they aren’t alone in feeling every imaginable emotion – from A-Z – good and bad. You are a blessing to the Alzheimer’s and dementia community. Wishing you, Jim, Frances, and Brad a beautiful Christmas.

  4. sonia says:

    I thank you for your honesty, I needed to read this today, We just recently found out altough i have suspected it for years. That my 58 year old husband has Alz and is going blind he already is has no perpherial vision left. I also have a set of 25 year old triplets all with severe mental illnes and Asbpergers Synddrom. I am in such depression as I thought this would be our time. Ready to get 2 of the boys who live with us out in assisted living and he and i could now have our time. AND than THIS. Thank you and I will pray for you and all of going through this. Right now I am still in shock. Be blessed

  5. Michelle Fox says:

    That was sad yet so truthful to read. I think this has been one of my saddest holidays as well mom is declining so much and it just took so much effort to decorate and I really do not care. It will just be another day. I hope you can enjoy the day with the kids…and keep it simple. That is what we will do. Merry Christmas, as much as it can be <3

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