I wasn’t going to write a post this week. I’m on holiday break from the university, and I thought I’d take a holiday break from writing as well.
Yet I’m awake late into this Sunday night and rather than watch more reality TV or spend more money on Amazon.com, here I am with my laptop sitting in bed.
And I have a message for my families impacted by dementia. Caregivers, this is for you. The more overwhelmed, burnt out, and broken you feel, the more I want you to read this.
I wish you a happy holiday season. Or, for some of you who are really struggling, maybe happy seems a bit unrealistic. In that case, I wish you moments of happiness within a season of survival. I hope it’s not as a bad as you think it might be. Maybe it’ll be kind of like going to the dentist. The experience isn’t usually as awful as the expectation.
The holidays are a lot of fun–most of the time–for many of us–unless they aren’t. I work with many families affected by Alzheimer’s or a related dementia who look forward to Thanksgiving, to Christmas, to New Year’s…and have the most joyous time. Dementia by no means disqualifies you from having a wonderful holiday season. However, it can create some challenges.
Recently I’ve heard the following statements from family members of those with dementia:
“The kids are gonna come back to town and realize how much Mom has changed. They’re gonna tell me to put her in a home and I’m not ready.”
“My wife has dementia and I’m supposed to take her to this party. They won’t take no for an answer, but it’s gonna be a disaster.”
“I want to bring him home from the nursing home for Christmas, but I’m worried he’s gonna get aggressive when he realizes we’re taking him back.”
“I’m dreading another Christmas dinner at the assisted living where we all act like we want to be there.”
“I hate watching the grandkids around her. She gets so frustrated with them. She yells at them, and they don’t understand why.”
“Dad says totally inappropriate stuff now. I don’t know where I should take him and where I shouldn’t. And he has these angry outbursts. I am praying Christmas day is a good day for him.”
If someone in your family is impacted by dementia and you find yourself making statements like this, you’re not doing anything wrong. This is tough.
It’s not just dementia that you’re dealing with here. It’s your family dynamics. It’s friends who don’t understand. It’s people who still think dementia is about “people becoming a little bit forgetful when they get old.” You live in a world where people still don’t get it.
I don’t have any magic advice. The best I can do is to tell you that you may have to change your expectations. You may need to force yourself to find small blessings or moments of joy within what sometimes seems like a trudge through snake-filled quick sand.
The people who cheerfully work at the nursing home on Christmas day.
The neighbor who understands you are overwhelmed and shovels your driveway.
The joyful expression on your mom’s face when she sees she has just received a gift–even though she already opened that gift hour ago.
The friend who unexpectedly delivers a homemade fruitcake with a card. (And, no, it doesn’t matter if you like fruitcake.)
The families of the other residents at the nursing home who try, as hard as it is sometimes, to spread some Christmas cheer.
If you look hard enough, you’ll see the positive. I promise it’s there somewhere–for all of us. It gets buried when we go through rough times, but that’s when it’s the most important to uncover it.
And one more thing…this is important…you may have loved ones who visit from out of town and haven’t seen the changes in your family member with dementia. They may be taken aback at these changes, and they may imply or outright state that you are doing something wrong as a caregiver.
They will tell you about the internet article they read about vitamin E and dementia. They might suggest that your family member should be in a nursing home. If they are in a nursing home, they may suggest that your family member shouldn’t be in a nursing home. They may suggest your family member with dementia visit a chiropractor. They know A LOT about dementia…because they have seen a bunch of articles pop up on their Facebook feed. (Yeah, that’s sarcasm on my part. And, no, I’m not sorry.)
I don’t mince words on my blog, so here goes: SCREW THOSE PEOPLE. I’m sure they are well-meaning, but I give you permission to turn and walk away. You don’t have to get into an argument. In fact, I recommend you don’t get into an argument because you have limited time and energy, and I don’t want to see you waste even a small bit on an unproductive argument. Promise me, however, that you won’t let these people make you feel guilty. And, hey, if you give me their names, I’ll call them and tell them to zip it.
This holiday reason, be realistic. Don’t be too hard on yourself. Fake a smile but acknowledge that this might not be the holiday season you envisioned. Don’t be afraid to say no to holiday gatherings. Don’t apologize for leaving early. Stop worrying if you didn’t buy a present for everyone who is distantly related to you by blood or marriage. If it works to stay in your routine, stay in your routine. Remember that people who are critical of your caregiving just don’t get it. And when something goes horrible wrong, don’t be afraid to cry or to laugh. Either response is perfectly acceptable in my book. No judgement here, folks.
Happy holidays. You’ve got this. You’re gonna survive, and you’re gonna find a few good, or even great, things to focus on throughout the journey.