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    • #22418
      Wendy Dirks
      Participant

      Hello, all! –

      Today was going to be the day I took down the Christmas tree and decorations. As usual, I managed to gather up the Christmas cards and then I was exhausted and took a long nap. I woke up and stared at the tree and realised that it was going to take weeks to put everything away. Putting up the tree was an ordeal – I had to sit to put the ornaments on it and many tears were shed. In fact, the stress of Christmas – the wrapping, the visits, everything – seemed like an ordeal instead of a celebration. So today I ask myself – is it time to stop trying so hard and just ignore Christmas?

      Last year my husband and I asked everyone to stop giving us gifts – we’ve done several massive clear outs over the last few years and the last thing we need is more “stuff.” This year we got treats to eat – so many of them that we’ll be eating chocolate biscuits and sweets for the next month. We don’t need that either. I love making gifts for people but I honestly don’t want anybody to buy me anything. If our family would just spend more time with us, we’d be happy. The gifts don’t make up for not seeing or hearing from them for months on end.

      Next year I don’t want to put up a tree, or exchange gifts or do any of it. (At least I say that now.) What should be a celebration is just one more ordeal that I don’t have the energy to participate in with pleasure – just a sense of duty. How do you handle these types of holidays? Am I just being a Grinch?

    • #22419
      Susan Howitt
      Participant

      Only the cards got put on the side board, no sign of anything else here, went to daughters for Christmas dinner and there are no other relatives over here so I really don’t have to make a show.

       

      I don’t think you are being a Grinch, if it exhaust you then it really is no fun and to look forward with dread for Christmas is not good for the moral either.  Put up a decoration on your front door if you like and that should do.  Surely people will understand (maybe not as fatigue is invisible) and the world and his wife think we should be back to normal once on oxygen, for me this is not the case at all.

       

      Think of you not every one else

    • #22420
      Wendy Dirks
      Participant

      Thanks for responding, Susan! Your solution sounds very sensible. At least it’s over for this year! And the world won’t end if I don’t get the tree put away for a few weeks.

    • #22421

      Hi Wendy,

      Thanks for writing about this topic, it is an important one! I don’t think you’re being a grinch at all – in fact, I’ve written a couple of columns about how difficult the holiday season can be for those of us living with a chronic illness like IPF. Sometimes I get caught up in the “festivities” of the season and put stress on myself for it to be perfect, but you’re right: ultimately what is most important is quality time with those we love. Not the gifts baking, decorations, etc.

       

      My advice would be to give it some time before you make a final decision on December 2020. The feelings of exhaustion and being overwhelmed may contribute to a haste decision in the moment, but you may feel differently as the year goes on. Or, you may not and there is no right or wrong answer here – it is what/how you feel. At the end of each day we have to look out for ourselves, so I’d encourage you to be gentle on yourself and if the tree doesn’t come down for a few weeks, so be it. Enjoy the sparkle in the light as long as you can. I had to have someone help me take mine down, I’ve been too sick, and I miss it. If you do choose to forfeit Christmas in the future, that’s okay too. We need to prioritize our own needs and not feel guilty about them – way easier said than done, I know!

      Wishing you much peace and sending love.
      Charlene.

    • #22428
      Burma
      Participant

      You are not a Grinch or Scrooge. Christmas Eve 2018, I ended up in the hospital. They thought I had pneumonia. As usual, I was supposed to host Christmas dinner for the family. My son, his wife and his three adult sons. Because I was in the hospital, family Christmas fell apart. I was released the 27th and felt fine, thankfully…they were just being causeous. Anyway, we ended up having pizza and wings a couple days later and I really enjoyed it. (so did they) This year, I put up a 3 foot tree in the living room and a 2 1/2 ft tree in the family room; hung cards on the kitchen cabinets and that was it. Mind you, years before IPF, I decorated every room in the house, bathroom, bedrooms, kitchen, everywhere. Not anymore. Don’t have the energy and decorating is not what Christmas is about anyway. I did host Christmas dinner this year but I ordered dinner from Boston Market and added a few favorites to it. Everyone enjoyed it. (Did the same thing for Thanksgiving too.) I think many of us feel we have to do what we always did and it depresses us when we don’t have the energy. As for gifts, we cut back to start with, and what we do give, we mostly order on line. So don’t stress over not decorating. It’s your holiday too, so do what makes YOU happy.

    • #22434
      Mark Koziol
      Keymaster

      Hello Burma, I think you provided excellent suggestions on how to combat the physicality and fatigue that may come with exerting yourself around the holidays. Togetherness and family are what holiday celebrations are supposed to be about. Have a blessed new year, mark.

    • #22435
      Karen Martin
      Participant

      Years ago, when my daughters were small, I read a “helpful hint” in a “woman’s” magazine that said we teach our families what to expect.  And when the kids come home from school saying that “so-and-so does this”, you tell them “that is not our house.”  I think the same thing applies here, but we have taught ourselves what to expect.  I still send Christmas cards although many people do not.  Do I think less of them?  No.  Nor will I think less of myself when that becomes too much for me to do.   I agree with Burma and think it is time to do what we can that makes us happy.  You know your family would not want you to feel guilty or wear yourself out doing things you no longer enjoy.  Just give yourself time to decide what it is that makes you happy and explain it to them.  I think we are all afraid of disappointing everyone else when they are just as concerned about us.  Wishing you a peaceful new year.  Karen

    • #22436
      Taleena Koch
      Participant

      @wendy-dirks

      Hi Wendy.  As the caregiver (former caregiver) I do hope it’s okay if I interject my thoughts on this.

      First of all, before I go to that, I do want to say as someone who lives with chronic pain (back, knees, and feet) I totally understand the difficulty of the holiday season.  Each year gets more and more difficult.  Last year, it took until the end of April before I finally chewed off that bite and got the tree and ornaments all put away and took down the Christmas village, packed it up, and put it away.  It is such a long process – both getting things put up and taking them down.  I have help as well from my husband and occassionally from the adult children.  But it’s still a lot of work and stress.

      Now… why do I keep doing it when it causes me pain and fatigue and emotionally, it just drains me?  I do it because in 2009 I lost my mom to IPF.  In 2008 – her last Christmas alive – I didn’t get to spend it with her.  We had a huge snowstorm and living here in the Pacific Northwest, everything shuts down.  I had no way to get to her house (a 15 minute drive from me) to bring her here.  We didn’t have a 4 wheel drive vehicle at the time.  Hind sight is 20/20… I wish I had moved Heaven and Earth to get her and bring her here.  Had I known it was going to be her last Christmas, I would have.  To this day, it is one of two major regrets I have.  (The other regret is that I never finished her scrapbook from our cruise together many years before.  She never got to see it. I still haven’t finished it.  It’s a difficult thing for me to even entertain as I was working on it the night she passed away.  I ran out of that room and to the hospital.)

      Anyway, I digress.  So should you put up the decorations next year?  You should get help.  Why?  Because we don’t know when it will be our last time here on Earth.  For your loved ones, who are left to pick up the pieces, it might be important to them.  Especially to your husband.  And to you, even though it is work – it brings good memories and makes your heart warm and fuzzy.  🙂  Even though those close to you may currently say “It’s not important to me”… they may (most likely will) change their mind once you are not around.  We have no idea what we are going to feel when our loved ones are gone.  I can attest to the fact that is so true.  When I finally lost mom, suddenly small things became VERY important.

      I would suggest however that maybe you scale back.  This is one thing mom did.  She had a small tree that she took out of the box and put up every year.  It was pre-lit.  It didn’t require a lot of decorations.  It was easier for her to manage.  This year, I even added a small tree to my home (in addition to my regular tree).  It is beautiful and brings me so much joy.  I have many times thought “this is my future and it’s okay.”  🙂  For shopping and gift giving, mail order and deliver.  Keep it simple.  Then all you have to do is wrap.  Don’t do a lot.  Do what you can manage.  But if it’s important to you, if it brings you joy, do it.  Just make some changes to make it work for you.

      But please… celebrate those special times.  Also remember that literally every day is a special day.  Take time to be with your loved ones.  TALK to them about things that are important.  Tell your kids about your life growing up.  Oh how I wish I knew more about moms – and I know a lot already but would love to know more.  Time with loved ones is what is most important.  🙂

      I am so glad I read this from you today.  I am always wanting new ideas for my support groups.  This has made me realize that I need to write up something on ways to make the holidays easier for my patients who are living with this disease.

      Bless you and your loved ones.  I hope you choose to continue celebrating but that you find ways to do it such that it doesn’t take so much out of you physically.

      • This reply was modified 4 months, 4 weeks ago by Charlene Marshall. Reason: tagging
    • #22438
      Cynthia
      Participant

      Charlene, I’m sorry to hear you’re still feeling sick. Hope you’re on the mend soon.

    • #22440
      Wendy Dirks
      Participant

      Thank you for responding, Charlene – I’m so sorry you have been so ill. I think you’re right about not making any decisions at the moment. I’m feeling a bit cheerier today anyway. The one thing we did do that was a wonderful Christmas treat was adopt a 13 year old cat from a shelter. Casper is just the sweetest thing ever. The second of my two elderly cats died in September and having a pet around again is lovely.

    • #22441
      Wendy Dirks
      Participant

      Thank you, Burma! Those are excellent suggestions. I’m sorry you ended up in hospital but it sounds as if you were able to have a lovely time anyway.

    • #22442
      Wendy Dirks
      Participant

      Taleena, thank you so much for sharing your thoughts. My dad died of IPF in 1989 so I understand the importance of making memories for people. I was my mother’s caregiver in her final illness in 2005 from cancer and I remember her last Christmas vividly. She insisted on getting her hair done. She lived in Chicago and it was bitterly cold. We practically had to carry her from the car into the hair salon. But it meant so much to her and I’m so happy I was with her.

      The gifts that I like to give are photo books. I take photos and pinch them from Facebook and then make books covering the year past for my friends and family. I hope that these memories will help them remember me with love when I am gone – and remember all the fun we had together rather than my illness.

    • #22443

      Thank you so much Cynthia – it has been such a rough few weeks with being quite ill. I am slowly on the mend now, though. Hope you’ve been doing as well as possible. I think of you often! Remember Paula who isn’t too far from you, I believe at MGH? She got a transplant and is doing very well!
      Cheers,
      Charlene.

    • #22444

      My pleasure Wendy! I know it can be so easy to become overwhelmed when living with this cruel disease, and sometimes I need a pick me up reminder from others when I feel down as well. It is important to remember that how we feel one day may be entirely different the next, and equally as important is to give ourselves grace through it all. Know you have a group of people who care deeply about you in these forums!

      So glad you adopted a new little furbaby, so wonderful. Casper is a lucky cat and I have no doubt will bring you much joy 🙂
      Charlene.

    • #22454
      Samantha Cooper
      Participant

      Hi I totally understand the feeling of wanting to give up Christmas. My husband has IPF & has had it for 5 years now. Every Christmas I try really hard to make it extra  special incase it ours last. As I have to do more and more around the house and caring for my husband, last Christmas I felt I over did it. I was very tired and grumpy because i took too much on. On reflection & reading the other comments on this forum I think it’s best to still celebrate Christmas & to decorate but perhaps as suggested ask for help & scale down “Christmas”. I will certainly be trying to do that this year. To say “no” a bit more and not be “superwoman”. It is difficult not to get caught up in all the excitement. That is my intention anyway, the reality may be different! (I love Christmas).

    • #22459
      Karen Martin
      Participant

      @bag4life

      Hey, Samantha.  I think you are being realistic when you say you will try to scale back and ask for help more, but that it may not happen because of the way you feel about Christmas.  Until we get there, we don’t really know what we will do!  I am sure your husband appreciates all you do for him at Christmas and every other day.  Our caregivers are so important!   Cheers to a “superwoman” for all you do, scaled back or not.  Karen

      • This reply was modified 4 months, 3 weeks ago by Charlene Marshall. Reason: tagging
    • #22465
      Wendy Dirks
      Participant

      Thank you, Karen! I think your point about expectations makes a lot of sense. And Samantha, I agree that you don’t need to be superwoman – you already are. One of the happiest Christmas celebrations I’ve had since my illness was simply being home with my husband who is my caregiver. We slept in, puttered about, ate a late dinner and it was absolutely lovely and relaxing. My husband is a superhero to me too.

    • #22469
      Nan
      Participant

      This is a thought provoking conversation. Some many great ideas and thoughts. I agree that you need to take the time over the year to decide. I think scaling way back can be therapeutic in many ways. Totally giving up though might be depressing. As a western society we sure have put a lot of pressure on ourselves and others on what to expect at Christmas time. I see articles telling us what is the proper etiquette, what gifts to give etc and it is overwhelming. I have scaled back and will continue to do so. I want to focus my energy and time on my grandson. He was just 9 months this year but it was still mostly about him :).  However I did the family meal this year for 11 and it was too much, even though I had help, next year, no not doing it. A quiet special day with hubby sounds wonderful!

      Charlene, glad you are on the mend, I have been worried about you.

    • #22510
      Wendy Dirks
      Participant

      Thank you, Nan! I think scaling back will be the way forward. Having grandchildren is such a blessing – ours are 16 and 10 and I do enjoy their happiness at Christmas.

    • #22526
      Richard J Shank
      Participant

      About ten years ago my mother asked me what I wanted for Christmas.  I told her, I want to never have to do this again.

      I left the nest when I was 17 to join the Air Force, except for college, I’ve always lived far away from family.  Every year, I was the one who traveled home for Christmas.  I had to either ship everything, pack everything, or rush out and do Christmas shopping in about 3 days before Christmas.  Then I had to either ship the gifts we received or pack them to travel home on the airplane.  Over the years I did this with by myself when I was single or with my family after marriage.

      Christmas is such a hassle and really only benefits the children and corporate America.  My wife and daughter are Chinese and it was just a couple years after they came here that I asked to end Christmas.  They don’t have Christmas in China so they never missed it.  My mom has passed since and my father has everything he needs.  I usually take him and my extended family out to eat at their favorite restaurants when I visit.  The rest of the family still does Christmas but I just ignore it.

      I don’t miss it in the least.  I still spend over $1000 every year packing my family up to visit.  Except for my mom and dad, nobody has ever come to visit me.  I feel I do my part and if people don’t like it, oh well.  No more hectic Christmas shopping with impatient drivers and discourteous shoppers.  I’m done and I’ll never do it again.  Actually, I really object to the obligation of gift giving.  I give freely all year long to friends and family.  I take them out to eat or give them things they need on the spur of the moment.  My step-daughter is in grad school studying to be a physicians assistant.  I paid for her undergraduate studies completely and I pay 100% of her living expenses while she is away at school.  The only thing I can’t pay (as I’m now retired) is her tuition for PA school.   She has never paid for a car, gas, maintenance, car insurance, health insurance, rent, utilities, etc.  My wife and I have two accounts, hers and ours.  She not only keeps all the money she makes, I give her more each week (direct deposit).  I make 10 times what she makes so while my wife feeds the family, I pay for everything else.

      Some people think I’m just a Scrooge.  I know better.  Bah humbug.  Screw Christmas.

      P.S.  My step-nephew came here from Hong Kong to go to the local university 6 years ago.  I have housed him, fed him, provided auto insurance and gas (he shared my step-daughter’s car).  We haven’t charged him a dime for anything.  I also gave him an electronics experimentation kit so he could build a lot of electronic projects to get some experience to go with his electrical engineering studies.  When his laptop broke, I bought him a desktop.  He just finished his masters in electrical engineering and is searching for a place to do his PhD.  He’s so smart he’ll probably get a full ride for his PhD like he did for his masters.  His current university has already offered him a full ride for his PhD but he wants to go to a significant university for his PhD.  We’re retired and we’re going to sell our house soon and move on.  We don’t know where he will go next for his PhD but I don’t think it will be with us.  We are now empty nesters.  Good thing.  I don’t make the big bucks anymore.

      Merry Christmas

    • #22530
      Mark Koziol
      Keymaster

      Hello Richard, thank you for sharing your story. It sounds like you celebrated Christmas everyday. There is nothing wrong with the way anyone chooses to celebrate the Christmas holiday. You sound like a caring person who has provided for his family and continues to do so. You are not a scrooge! Take care, Mark.

    • #22533
      Wendy Dirks
      Participant

      Richard, it sounds to me like you have found the perfect solution for you! I also used to be the one who always went “home” for Christmas as everyone else in the family lived close to each other and I lived hundreds of miles away. I get it!

    • #22546
      Nan
      Participant

      I too life far from family and we are always travelling there, 5 hour drive and I am sick of it. They rarely come here. I will keep doing it as I can because my mom is 88 and that well so she cant travel but i do hate doing it. My husbands family always expect me to do everything, but no more!! i hope I can stick to that :). You are right Richard the big deal made of the holiday just goes way to far.

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