ALS and the holidays

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2siblingsALS

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PALS
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Florida
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Auburndale
Anyone else struggling with the holidays? Is this my last Christmas? What shape will I be in by next Christmas?
I don't want to be The Grinch or Scrooge and ruin other people's Christmas.
I have been making out and mailing Christmas cards. Some people know about the ALS. Others are getting "I'll write after the holidays" in their cards because I just can't keep writing it.
The worst part of decorating is going to be decorating the tree. We have so many ornaments with special meaning. Some have been in my family for as long as I can remember. I have the First Christmas ornaments for my brother and I.
I am trying to thing positively and keep my spirits up. I have already forewarned my husband that there will probably be monsoons of tears between now and January 1st.
How are you handling the upcoming holidays?
 
I know what you mean. I think you're kind to save the news until later.

I simply left the country during the holidays.

Don't focus on future holidays. My "mission" each day is simply to accomplish the day's to do list, and find something to enjoy each day.
 
My PALS and I try to treat each day as if we will never have it again. And the reality is, we won't. Because today will probably be a better day then tomorrow, we'll work to make it as good as we can. Thanksgiving this year was more bitter/sweet for our relatives than it was for us. They're worrying about whether or not Darcey (my PALS) will be here for another turkey day. We, on the other hand, are too busy working with today (and eyeing tomorrow) to be concerned about things a year from now. Perhaps that is what makes it a more easily carried burden. We are also more emotionally connected with each other and those around us than we ever have been... and are extremely grateful for our family and awesome friends (and more so than ever before). Darcey has ALS... but we've both changed as a result of it. We believe that this will be our best Christmas yet. Only after it is gone will we begin to look towards the next one. It may be little more than a mind game... but it is what works for us. I hope you find what works for you...

Jim
 
Very good post Jim. We never know what tomorrow will bring. We have to live for the moment. My mom had cancer and one of things she wanted to do was make one more trip to Vegas. She ended up making it there 3 more times. I know what you mean too about the ornaments. I have aot of them that our sentimental to me too. I put them on the tree and close my eyes and remember and will shed a little tear. Crying is sometimes cleansing for the soul. Make this your best Christmas ever and don't worry about tomorrow. Hugs, Kim
 
Great attitude Jim, I hope that others will follow in your foot steps.
Love Gem
 
It has certainly crossed my mind each holiday for many years- the is this the last for...? As we have had an ALS affected immediate family member every year since 2003. I was sure last year was my sister's last but she is still with us ( knock wood). But it has made me more determined to make each one more memorable and concentrating on that helps I think. I would certainly hate to ruin it for anyone else or to have the children in the family especially remember tears unless they are tears of joy...
 
I thought last year would be my last Christmas but now except for speach and swallowing, I feel as good or better than last year. Giving up the stress of a job did wonders, we need to treat every day as if it could be our last. Don't leave anything unsaid.

Janie
 
I think about that sometimes. Thanksgiving I was trying to enjoy my food like never before because I might not be able to eat next year. Then I looked around the take and thought any of them could go before me! Just because I have my ticket in my hand doesn't mean everyone else can't be handed theirs at the last minute!
 
Last xmas was very hard here.

Both Chris and I knew in our hearts it was his last. I wouldn't say it, but he did - often.
He became quite depressed as xmas approached. We had nearly all the children here for the day, we had all made a huge effort to make a wonderful day.

But he cried on and off all during the day, sending many people into tears, and making the whole day so difficult for everyone.

Chris had FTD, so I couldn't really do anything about it. If only he could have taken the attitude that Jim describes and have made our last xmas memory a wonderful one.

Once the day was over, he brightened his spirits right back up, but it has left a lasting impression on me, and I'm sure on everyone.

I believe it is why his 3 children have elected to do a xmas without me, and not here. Too many very hard memories of their father crying all day.

Please heed Jim's words, they are so true. None of us can live well in the day, any day, if we are only thinking ahead to what could be next. That spoils the day we have, and every day is precious.
 
jane got the tree up and we are spend this year like any other one. well ok not so much the same. the mistletoe is going have to be lower.
 
We send kisses, with or without the mistletoe!
 
My mind was so crazy after my diagnosis 08/2012. I just wanted to get away. So we spent the week of Christmas in Disneyworld. There were 12 of us in all. Family came from all over. It was great being all together and having a good time. We went our separate ways during the day, but had dinner all together every night.
 
I think about that sometimes. Thanksgiving I was trying to enjoy my food like never before because I might not be able to eat next year. Then I looked around the take and thought any of them could go before me! Just because I have my ticket in my hand doesn't mean everyone else can't be handed theirs at the last minute!

At least we have a heads up, I would hate to go with a heart attack or accident. We can say goodbye and tell our loved one how we feel.

Janie
 
Tom and I go about the business of Christmas like it's not the last one. We talk about next Christmas like it will happen. He tries not to ever dwell on the fact his tomorrow is no guarantee. My son and family are coming this year for a week, we are so excited! My son had to use the "ALS card" to get off from work, told them this may be his dad's last Christmas. He's being more realistic than we are. But I'd like to think maybe he'll have to use that same excuse next year! It's obvious to all around us that Tom is in decline, but he is hanging in there and has plans to be here for a while, God willing!
 
I'm having a lot of trouble getting up for Christmas. I normally love decorating the house, but the tree is up only because our kids were here for Thanksgiving and insisted on helping. There are boxes of ornaments open in a room upstairs and I don't even want to look at them. I, too, decorate my tree with memories from our lives. The first ornament to go on the tree every year is one my sweetie made in 4th grade. Maybe fear of facing that one is what's stopping me. I know I need too--I owe it to my husband and the kids who will be here for the holiday, but I just can't get started. Maybe if I get the house decorated I'll be able to wrap my head around shopping for gifts... Wow--it's amazing how cathartic typing this out is. I need an attitude adjustment, and I'm going to get it. That little darling is going on the tree and we are going to enjoy hanging it. The rest will follow.

Thanksgiving was good for my sweetie--the house was full and he wore himself demonstrating silly PWC tricks and giving the grandchildren rides. I've got to get myself together so he can have the same experience at Christmas. For him, it was his recent birthday that was difficult. He was down all day, but hadn't said anything. I finally looked at him and said that this was NOT his last birthday. Bingo. I could see from the look on his face that I'd nailed it.

I guess we all have different triggers, but perhaps with some effort we can take a page out of Jim's book and just save the sadness for a time in the future when it won't be robbing us of the very thing we fear losing--time with our loved ones. Hell, all the pouting in the world won't change a thing, so it's kind of pointless.

Thanks for the thread--I think I just talked myself out of my current pity party!
 
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