Thunderstorms and Clouds Galore

 

Family camp in MA. 2010. We were in the very early thoughts of this disease.

Family camp in MA. 2010. We were in the very early thoughts of this disease.

In keeping with the theme of filling everyone in on where Jim seems to be with this super awesome disease…

Last week there was a really bad wind and rainstorm heading our way. We had hours of notification from the media. When it was getting closer, I was finally home from work and casually told Jim we needed to get the yard ready. He took down the flag and the picnic table umbrella. He diligently moved hanging baskets and organized the patio chairs the kids had scattered about the backyard. Since winds were expected to be quite strong, it appears he moved more than I anticipated.

After the storm blew through we were so grateful to still have power, as many in our area didn’t. Jim decided he would go ahead and put a few things back that he had taken down. Evidently, this included the downspout from our gutter to our rain barrel. When I heard him mention he needed to go put the downspout back up, I thought I had either heard him wrong or misunderstood.

No, he meant the downspout that could have possibly blown away in the storm. After my initial shock and utter disbelief, I realized it was just comical. Who removes a downspout BEFORE a rainstorm?

Those of you reading this that are or have lived with someone with dementia completely get this and will see the humor, feel the frustration and sympathize with the progression of the disease on my very well intended husband.

Those of you that are reading this blog in an effort to become educated, here is your lesson for the day: people with Alzheimer’s Disease will be rational and with it one day or even one hour. The next day or the next hour they will decide that a downspout will blow away in a severe thunderstorm and it will seem completely rational and normal and necessary to take it down before the storm comes. There is no need to argue. Just move on. (which is sooooo much harder than you could possibly imagine in the finite moment you are living in)

I love my husband a great deal. It is a good thing I do or else I would really feel trapped and see no need for pushing forward. If you are going through this fog with me, I applaud you. If you are doing it and feeling trapped or like you can’t do it one more day, I am sending you the strength to preserver. It will get better! Right?  I am afraid it will get much worse for us before it gets better. Isn’t there an answer somewhere, somehow to end this maddening life? If I am smart enough or savvy enough or strong enough……

Can you for just a moment imagine the day to day life of someone that knows life is going to suck so much more than it already does before you can even hope for it to get better? Does it get better after going through all of this? How can you ever be truly happy again? How can you ever feel like you can relax and plan for a future?  I read so many stories and speak with so many that have dealt with all of this and I really don’t see much in the way of happiness and joy and yippees. I know life isn’t supposed to be all smiles and sunshine, but wouldn’t it be nice to have some of those mixed in with the constant pounding of storms and dark clouds?

Sometimes I just don’t know what I am going to do or how I am going to do it. Then, magically, an angel or two appear for just the right thing. A day at the beach. A bike ride. Help with our Alaska trip. Help with the kids. Laughter that brings tears to my eyes. Joy that fills my soul as I watch Frances and Brad sing together. Bittersweet memories as I see Jim being the wonderful Father that he is.

I am not going to sugarcoat this: Alzheimer’s completely sucks. For so many reasons. It is not just about misplacing keys or forgetting someone’s name. That is waaaayyyyy down our list of symptoms at this point in the game. It is the loss of a person’s complete personality and their abilities to participate in the mundane tasks of family life. If you married someone for their looks, then this disease is the one for you. If you married someone for their mind and their abilities to co-parent and participate in life, Alzheimer’s will tear you apart bit by bit. If you need your partner to make you feel special and loved and keep you stimulated intellectually, you will become very isolated and lonely.

I married a man that made me complete. I have a lot of faults. I don’t deny them although I do try to improve them. With Jim, I was a much better person. I became a better Mom because of his patience and his ability to let me be me and circle back around during stressful times. I became a better friend because he never, not once, complained I spent too much time with my girlfriends and even encouraged time with them knowing it made me happy. I became a better daughter because he taught me how important family was and to not take it for granted.

I miss the Jim that has made me a stronger, more independent and better person. I sometimes wonder how I will get through the upcoming years. How will I take care of him, the kids, the house, myself….how will I financially be able to do this? How will I emotionally be able to do this? Which one will get me first? The finances or the emotional toll?

I wish I had my rock to talk to about this and to give me the different perspective and support I have had for the past 16 years. Even though he is still here with me, he isn’t.

By the way, we gave Jim an electric razor and a new weed whacker for Father’s Day. (see previous posts to understand the meaning of these gifts.) Let’s hope that he can utilize both. Now I will work on a better downspout that can not possibly blow away in a thunderstorm.

posted by Karen in Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (7)

7 Responses to “Thunderstorms and Clouds Galore”

  1. Marsha Carpenter says:

    Karen – it isn’t funny – but if you don’t laugh you will cry. Last week we had a bad storm at night & I said to my husband – “I think we should go down the basement” – he said “no, I’m not allowed to go down the stairs anymore”. So we just went to bed, in our 70’s if this was “the day” then it was. He has also torn apart two electric razors -“fixing them”. I look at them in the store & think of hiding it till evening, but then what if I forget where I hid it? As I said, laugh, it’s about all you can do. The weed wacker, wow – I hope it’s light and easy so you can use it – it’s not pretty when your roses are “wacked”.

  2. Diane Chadwick says:

    I so agree with you that you have to laugh to keep from crying sometimes. It is a hard road to travel (we are with my Mom) and if you have not had to go down this road yet you do not know what she is talking about. Blessing to your family.

  3. jen cameron says:

    i am living with a children with a severe traumatic brain injury… who is 4 and has the neurological status of a newborn… although he used to walk and talk. I can’t go too far into the future… i have survived for 2 and a half years by taking it one day at a time… i’m tempted to sometimes do the many what ifs and how can i’s… but i just can’t… it’s how i cope…
    http://www.caringbridge.org/visit/silascameron

  4. jen cameron says:

    sorry ONE child… not children. but i did lose a son to the same disease.

  5. Lee Ann says:

    I just went to Jen Cameron’s Silas’ site. such a gorgeous little boy! I had a good friend that lost a 2 month old, who was on Caring bridge too. I’m convinced that we go through life and there are always crosses to bear. Karen has a cross, Jen has a cross, I had a severely mentally ill husband, also a severely mentally ill daughter, who is now 40 years old, and doing okay, I have a grandcat that she lives with and cares for. there is an old story about a man who is tired of carrying around his cross. And he tells Jesus “How come I always have to carry this cross around?” So Jesus takes him to the cross room, and there are thousands upon thousands of huge crosses in this room. So the man says, “Wow, these are really big crosses to bear. I wouldn’t want to carry any of those crosses. What about that little tiny cross over in the corner. I can handle that one!” And Jesus says, “That’s your cross. you weren’t carrying any of those big crosses.”

    I want to take exception to one thing that you have said. You said Jim was your rock. He took care of things and took care of you too. Since I believe we are all here to learn something or to teach something, you are definitely teaching with this website. A lot of people will get benefit from this. But maybe too, you are learning something. You married Jim because he was your rock. But now you are going to learn that YOU are your rock. you gave him that title, because it sounds so wonderful to have someone love and take care of you all the time. But you are learning, maybe unhappily, that you are the rock. You are stronger than you know. And you will learn this as time goes on.

  6. Michelle Fox says:

    Try this book, very easy read..Creating Moments of Joy for the Person with Alzheimer’s or Dementia by Jolene Brackey. Some of the tips may make your life easier as well because honey, as we all know, this is not going away. Also Caring.com has some good resources. I especially like the articles by Bob DeMarco. Knowledge is power and you need to overpower this situation because unfortunatly, it has gripped your family. Stay strong! Xoxo

  7. Susan Carlson says:

    My mom had this horrible disease,

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