Five Things Caregivers Can Do To Ease Holiday Stress

Providing care for a PALS (person with ALS) is beyond hard. It is stressful and messy and it doesn’t stop. In my last post I talked about how I said no to Christmas this year. (Kind of.) Caring for Brian since his trach has truly become an around the clock job. He takes Mucinex every four hours and the trach requires suctioning day and night. Witnessing ALS ravage a person is exhausting, depressing, ugly, awful. There aren’t enough words.

Stress gets to a level I never knew existed before. When Brian requires suctioning his entire body convulses, the ventilator beeps loudly, saliva gushes out of his mouth, and sometimes mucus runs out of his nose. I can only watch in horror while I turn on the suction machine so that I can suck it all out.

Funny thing is…this is normal. It’s how he coughs now. He’s been doing it for two years now and though I’m used to it, I’ll never be used to it. My body reacts in a very physiological way, in a sort of panicked reaction way, just as you do when you see someone suffering, or in an emergency.

That is stress that is embedded into every day and while still upsetting, it’s part of every day and our routine. It’s still stress and it wears me out. The holidays are a stress all their own and as I took this year ‘off’ I considered ways caregivers can make things easier on themselves during the holidays. If you’re a caregiver and feel completely overwhelmed you are not alone! Do yourself a favor and do whatever you can to relieve any stress you can during the holidays, or any other events and do NOT feel bad about it.

FIVE WAYS I EASE HOLIDAY STRESS AS A CAREGIVER

Talk About It (and be HONEST)

 Talk to your family about the reality of daily life with ALS and the demands on you as a caregiver. Be as open and honest as you can. Talk about how stressful it can be from day to day, and how you don’t really get a break for much of anything. 

Explain the long list of tasks that must be done each and every day. Don’t forget about how that affects you emotionally as well. It’s tough. I’m trying to be better about this. I tend to show more smiles and less of the actual tough reality.

The more others can understand how much time and effort the caregiving truly takes, the more they should want to help take the burden off you in every way they can. Maybe if explained with enough detail, your guests will really take control of as much as they can to ensure you can carry on with your caregiving duties.

Limit Gift Exchanges

I truly enjoy giving. Finding the perfect gift, wrapping it just so, watching the person open it on Christmas morning. Love it! I also used to enjoy showering all my friends and co-workers with gifts too.

My Christmas bonus went to others every year and it felt so good. That generosity during the holidays has become harder and harder to do. Mostly for financial reasons but also for many others.

Limiting gift exchanges can really take the pressure off. This one also goes back to talking to friends and family. Just be honest. At first the money conversation can be hard but they will understand. Living with ALS is very expensive, leaving little for gifts. 

Talking to those you’d normally exchange gifts with can help set the expectation. If you know your friend with a great job loves to gift expensive gifts just like you do, tell her that you really need to simplify and that her gift may be small or even non-existent this time around. 

This also removes some anxiety you might have toward the actual exchange and feeling that your recipient is disappointed. Chances are, your friend probably already thought about it and will be glad its out there.

Whether you actually bring it up with people or not, pare down your typical gift list and focus on those closest to you.

Let Someone Else do the Wrapping

Consider asking a friend or family member to wrap some of your gifts along with theirs. If a store offers gift wrapping, take them up on it, especially if it’s a free service they offer. Standing in line for a few minutes then can save you some stress and time later, when you really need it.

Listen, I get it. “Let someone else” are words that can make me cringe. Who can do it as good as me? Or what if it’s less of a gift because I didn’t wrap it or prepare it in some way? Who cares?!

It’s hard to ask for help because you feel like you’re imposing on others but true friends and family want to help. Now I’m not saying dump a bunch of toys and gifts on someone to assemble and wrap but let others wrap some things for you. As you go down you list of to do’s, stop and ask yourself with each one if it’s something someone can do for you.

Let Someone Else do the Cooking

I know, I know. Another whole point that begins with “let someone else”. The more you can embrace that phrase, the better off you’ll be. There’s just no shame in getting help. Remember what I said before? True friends and family want to help you. It’s up to you to let them!

With this one, consider your holiday and your visitors. How many breakfasts, lunches and dinners? I used to talk to my mom about the menu, then she’d send me recipes, then I’d organize the menu, do all the shopping, prep and do most of the cooking. WTF was I thinking?! Rolling my eyes at myself.

Making the most of the holiday means getting to spend time with those guests so let them help take some of the work. Once you’ve counted the meals, think about what you want for each one. Talk to guests about the situation and ask for their help. Really, what are they gonna do, say no?! And if they do, assign it to someone else, or just don’t do it.

Assign meals and/or portions of meals to each guest. Be specific about what they can do to help. Can they bring “dinner for Tuesday,” for example. If they say yes, they like the idea of burgers, talk about the burgers, buns, sides, etc. Don’t leave them guessing, which also sets expectations for the actual visit, and for who needs to do what.  

Suggest a Hotel

Gasp! A hotel? For the holidays?!

It probably makes you sad and it might really hurt your family members’ feelings, but it might just make the holiday work the best. Brian and I are often up throughout the night if his secretions are high. The ventilator beeps loudly and depending on how things go, we might end up sleeping until 9:00 or 10:00 after a rough night.

When my parents visit, my dad is up super early and I feel pressure to get up and play hostess as soon as he, or any other guest, is up. These days I may or may not have even had an hour of sleep by the time others get up. 

Perhaps if the family is at a hotel until you and your PALS are really ready to greet the world, it would be helpful. When Brian wakes up it takes an hour of suctioning, washing his face, brushing his teeth, stretching, bathroom, etc. to get him prepared to greet the world. He’s grumpy and I’m tired and it takes some time for us both to get going. It’s nice to be able to do that with no interruption or hosting duties.

If you have the means, perhaps you can pay for the hotel stay, but my guess is that since you have ALS in your life you cant. It’s nothing personal. We used to love for people come and stay and host guests, but these days just getting through the normal days are exhausting and odds are, your guests aren’t helping with caregiving duties. On a recent trip one of Brian’s parents saw his nose suddenly run mucus then said, “Someone needs to handle Brian’s nose.” Needless to say I was exhausted after a week long visit.

Having family stay in a hotel can set some boundaries and give you a breather in between hosting duties.