Thud! Your body is so heavy it’s like instant paralysis. It feels like an out of body experience. Disbelief. Heartbreak. The day you find out your spouse, child, sibling or parent had been diagnosed with a terminal illness is one, if not the most, devastating day in your life.
Up until that point, your “what if’s” likely centered around cars that might break down, whether your furnace will make it through another winter, and possibly even whether or not to take a new job.
Up until that point, you never wondered:
“What if this is the last Christmas with my loved one?”
And
“What if they are too sick to enjoy their last Christmas?”
After we found out the cancer metastasized after Callum had held it at bay for 2 years, our ‘what if’s” jumped from one extreme to another.
One minute we faced reality “What if things don’t go as well as expected? Maybe we should sell our house and move back to Medicine Hat for the last few months we have left together?”
The next minute we jumped into hope “What if the treatment works and they are wrong about how much time is left?”
Learning to live with a terminal disease that consumes your life is like hopscotch on steroids. Jump here, no there, now this way, one foot, two feet. Every moment can bring strong emotions, gut wrenching worry, optimistic hope and a desire to enter your personal amazing race and do everything you can as fast as you can because you don’t know when time will run out.
Here are the top 3 strategies you can use to make this Christmas and holiday season joyful and filled with memories you can treasure for the rest of your life.
You might be tempted to scale back celebrations and have a more solemn and somber holiday time with family and friends. You have good reason to not go overboard with social events and celebrations. You may wonder if your loved one is well enough for visitors, holiday fun and if they can eat what is laid on the table for holiday food. Your mind goes back to “What if” and all the bad things that could happen jump into your mind. I encourage you to flip that around and start to think about doing as much of your regular holiday celebrations as possible.
At Callum’s 50th birthday party I was so worried about his health, about him overdoing it, and that he wouldn’t take the time to rest. I even had family move his recliner to the venue where we had the party so he could be comfortable. He never used it. He was so thrilled to see people and visit that he propped himself up on his crutches nearly all day. I couldn’t believe he could go so long without a nap. What I’m trying to say is that sometimes, especially those really precious moments, we can allow a lot of joy into the moment when we let go, let our loved one take the lead, and allow it to happen. Was he tired for the next week? Absolutely. Did it really impact his health? Not at all. It was worth it for him to have those memories for the time he had left. It has been worth it for our family to have those memories of his smile, his gratitude, and his love.
Your action step is to decide what you think is reasonable for your Christmas and holiday celebrations. Then ask yourself “If I could do 5% more to increase our joy, I would do _______________.” Then do it.
Caregivers deserve help. You deserve help. This strategy includes the practical help like asking someone to look after making the main holiday dinner; doing the decorating for you; helping with the shopping and gift wrapping, etc. These are great ways to save you time, some money and keep you sane through the holidays.
There are some other things people can help you make this a memorable holiday when you are going through all the emotional turmoil of facing the likelihood that this is the last Christmas with your loved one.
The first thing to do is to have a conversation with your loved one about what each of you wants during holiday celebrations. A common mistake families make is to not pay attention to their own wants, and focus only on what your ill loved one wants. Your wants are important. This is a delicate negotiating-type conversation. You want to have memories that you will cherish throughout the rest of your life, after your loved one has passed.
Talk with the rest of your immediate (and extended family if that pertains to you) family about their wishes for the holiday season. They most likely have some special moments in mind that they would like to share.
Schedule your down time for at least every second day during December. Even investing 15 minutes to an hour of quiet time, away from the hustle and bustle will help you get through the marathon of the season, and help you get to the new year in a healthier state.
Once you have a general idea of what your holiday time will look like, make a list as many details as you can. Next to each thing on the list, put one or two names of someone who can help with this. You might be able to delegate all of it, and at least quite a bit of it.
This is a spot where reality collides with hope. First of all, keep your hope alive. Our family had 3 “last” Christmases. It might happen for you. Reality will tell you to be prepared that this is the last Christmas with your loved one. What do you want to remember about this holiday season? As Stephen Covey says in his book, The 7 Habits of Highly Successful People says, “Start with the end in mind.”
Here are some things to consider that other caregivers have missed, and then had regrets later.
- Take photographs/video (make sure you get some with you in them!)
- Have a professional family photo done
- Who do you/your loved one absolutely want to visit?
- Grocery shopping/delivery
- Gift wrapping
- Helping your loved one with sending their cards
- Helping your loved one make telephone calls to people who they might not see during the holidays
- Keep a scrapbook/journal of favourite sayings, jokes, and enjoyable moments during the holidays
- Invite friends, family and colleagues to email Christmas messages to your loved one – and you.
This time of year is stressful for many people, and especially overwhelming when you are faced with losing a loved one. To help reduce holiday stress for you, I created a Holiday Survival Guide, which you can get here.
Please comment below with your biggest challenge or worry for this holiday season. I will answer and give suggestions for you in upcoming blogs.
May you find peace, hope, and joy in every day.
Lorna
Thank you for sharing these tips, Lorna! I care for my dad in our home (he’s 86 years young) and I often wonder about “last everythings” with him. I’m also married and actively raising our 2 school-age kids while freelancing to help our budget, so life is pretty full. My biggest worry is that I’ll look up and realize that I’m exhausted and had zero enjoyment when the holidays end. I tend to be Atlas, holding up everyone else, and am quite guilty of not balancing out down time to rest and just play. My heart wants to enjoy my loved ones this holiday, all of them, and help create special memories. I’m pretty certain I’ll meet the second goal, but I’m concerned about meeting the first one. Your post has given me practical, helpful wisdom to consider as I aim for balance. Thanks again! 🙂
Thanks Karin,
You have done the biggest part of planning for the holiday season. Taking the time to acknowledge what you are worried about, and what you want, are key to being able to have and enjoy this special time of year – and all year, for that matter.
Consider aiming for balance, and accept if the balance is still a little wonky in the end. The pursuit will lead to more balance, even if not perfect. Did you get a copy of the holiday survival guide? It will help you change things around in your favour.
Take care and let me know if there are any questions when you start putting the practical pieces in action.
My husband was dxed with Frontotemporal Dementia in March of this year. I am not sure how to make his Christmas special, as he might not remember any of it. Plus we are 3,000 miles away from family and living in a 23 foot travel trailer. But I am determined that he be happy no matter what. It has been a hard year for both of us as we come to terms with this challenge.
Thank you for your comments. I imagine this change has taken it’s toll and you have learned a lot – especially about things you likely never wished you had to know. I invite you to consider the possibility that part of the holiday season is to create memories for you, too. Consider the possibility that he may remember some of the Christmas season – what are one or two things you would most want him to remember? What are one or two things you want to remember? Will any family be able to come see you or can you travel to be with relatives or close friends? Maybe a Skype call with some if you can’t be with them?
You have a lot of determination and commitment to a joyful times, even in the midst of the worries. You go girl!
Did you get a copy of the Holiday Survival Guide? Let me know if you have any other questions, or would like some help working through the survival guide.