Dec 232013
 

treeI miss Jim so much during Christmas time. I miss our discussions about what to get the kids and our families. I miss sitting next to our tree, looking at the lights and sharing quiet time together. I miss feeling excited, wondering what thoughtful present he placed under the tree. I miss singing songs, watching movies and so much more. Jim still throws out a hum (actually, lots of hums) during Christmas songs, but it isn’t the same. He is here, but he isn’t here.

Ever since I moved out into this great big world on my own, I have sent out cards every December. Except for last year. And the year before. And the two years before that. I haven’t had the energy. I haven’t felt jolly. And what would I put in there? Oh, life is great. We are watching Jim progress with Alzheimer’s and have no idea what our life will be like next year at this time. Merry Christmas.

The holidays are hard for Alzheimer’s families. I know this, yet I try to think that our holiday will be different. Last year, I was talking to a good friend and lamenting that I didn’t know if it would be our last “good” Christmas with Jim and that I needed to make it special. 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 need to just enjoy this Christmas.” It turns out, she was right! Last year we had an awesome Christmas. We probably had the best one ever.

I approached this year with similar hopes. But when I left for work on a recent Monday, I asked Jim to put the greenery and lights up on the porch, as he has done for as long as we have been together. While I was in a lunch meeting, Jim called. I 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 it. There really is this very fine 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 seems foreign to him. Sometimes I forget he can’t do it. 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.

Despite these moments – and the moments I feel the sadness and isolation this disease brings, I am still thankful for many things. I start with being thankful for my children. They are what motivates me, inspires me and keeps me smiling. I am thankful that I have Jim as my husband. He has been the most wonderful man, father and friend. Each day he continues to lead our family by example. He shows us all how to put our big pants on, live each day as it comes and do the best you can. He has no expectations, so he is never disappointed. That is all any of us can ask or hope for, no matter what our situation.

I am also thankful to all of those who donate time, money and energy to finding a cure to this horrible disease that has taken over my life and so many others’ lives. Thank you for being so generous and for believing that one day, we will all feel a sense of accomplishment. We will feel we were part of the solution.

Until that day, we will carry on our traditions for as long as we can. We may start new ones. We may lose a few along the way. But we will do it with each other. I love my family. I am grateful we have so much, when so many are in need. I am grateful it has been such a great year. I am grateful for all I have—and yet I still feel sad.

I miss Jim.

missingjim

About the blog author: Karen Garner is a mother of a 9-year-old son and a 12-year-old daughter.  She works full time and is care partner for her husband, Jim, who is living with younger-onset Alzheimer’s. She shares her journey through her blog, Missing Jim.

 

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Dec 232011
 

There are some topics on our message boards that pop up to surprise us, while others follow a pretty predictable cycle.

Every year, around the holidays, calls to our helpline and posts on our message boards indicate many family members notice the signs and symptoms of Alzheimer’s disease or advancing dementia. This is especially true of out-of-town family members who don’t see the person with dementia every day; they compare behaviors to previous times — and the difference may be startling.

The out-of-town family member may react by offering uninvited advice and opinions to family members who are dealing with dementia on a daily basis. And that’s when we see posts like this one:

“How dare she fly in here from thousands of miles away and say what our mother needs. I’m the one who does everything every day for her. Who does she think she is?!”

I think that it’s very natural to resent the advice of someone who is less aware of the daily needs of the person with Alzheimer’s and how much work it can take to meet those needs as the disease advances. But what’s harder to do is to accept that these family members are offering caregivers something very valuable – something that they cannot provide for themselves. They are offering perspective.

When you’re very close to something and looking at it, you see all the details. You can see the lines and veins in a leaf, for example, only when you’re close to it. You can see the effect of a slight breeze as it meets the leaf and moves it, even slightly. But what you can’t see, is the size of that leaf with respect to the whole tree — or a whole forest. For that perspective, you need some distance. And distance is something that daily caregiving just doesn’t allow.

So when the family gets together and someone offers opinions from a more distant viewpoint, it can help to try to see it as information that reflects a different perspective — one that can only be seen clearly when the viewer isn’t too close to the details. And sometimes, that view can even encourage caregivers to take a step back and incorporate additional resources they may not have considered before.

For the holidays,  a little perspective can be a wonderful gift.

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Today’s guest post comes from Ellen Carbonell, LCSW, Associate Director, Family Programs for the Alzheimer’s Association’s national office.  Ellen is responsible for developing and producing dementia-related family programs for chapter implementation nationwide, and oversees the caregiver and early-stage support group programs. Trained as a clinical social worker, she has over 30 years of experience working with individual and family programs in mental health, vocational, educational, clergy and voluntary health care settings.

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