A Holiday Letter to My Friends in Dementialand

Fair warning—This will NOT be my only holiday-related Dementialand post. However, it’s the Monday before Thanksgiving, and I need to get something off of my chest.

I have a lot of blog subscribers who are dementia caregivers. Many of my regular readers have loved ones with Alzheimer’s, Lewy-Body dementia, Huntington’s, or another dementia. More often than not, I write to those who care about someone with dementia.

Today is different because I am directly addressing my readers with dementia. I know there are at least a few of you out there because I hear from you. Sometimes you tell me I hit the nail on the head with how I explained something. Occasionally you tell me I missed the boat. I am grateful to hear from you either way. You have taught me more than you will ever know.

So this is for you:

Dear Friends with Dementia,

Here come the holidays. You have dementia. It doesn’t define you. You are still you, but you are different. Please understand that the holidays can still be an enjoyable time for you, but that doesn’t mean they will be the same. 

Maybe you always made a huge family dinner for all of your relatives. Maybe they expect the gathering to be at your house again this year. Maybe you’re okay with that, and maybe you’re not. If you’re not okay with that, say so. If you’re okay with that but you have limits (say, you don’t have the endurance to have company overnight), say so.

If you always make the mashed potatoes for Thanksgiving, consider whether you are up for it this year. In making this decision, remember that no one will die if they don’t have your mashed potatoes. Perhaps someone else in the family can make them. Perhaps you can even get some at the Walmart deli.

It is normal for someone with dementia to have limited mental, emotional, and physical energy. You can spend that energy how you choose. Might you want to save some for visiting with family and friends rather than using it all in preparing a meal? Or do you enjoy cooking and want to maintain a role in meal prep even when your family tells you to rest? It’s up to you. 

Your out-of-town family members can stay at a hotel if it’s just too much to have them at your house. You’re not being mean. You’re not being lazy. You are not being anti-social. You have dementia, and you have limits. You will have a much better holiday season if you acknowledge those limits and work with them. (I have a friend who has a child with autism; she gives similar advice to other parents of children with special needs.)

If traveling is too much for you, stay home. And don’t feel guilty about it. If you are going somewhere for the holidays, think about how you are getting there. Flying can provoke anxiety for many of us without dementia. It can induce panic for many with dementia. If you don’t feel comfortable flying, you aren’t being a coward. If someone tries to talk you into it when the thought puts fear in your heart, that person doesn’t understand dementia. (Am I being too harsh?)

Don’t feel bad if you leave holiday gatherings early. Parties can be overly stimulating and anxiety-provoking for people with dementia. When your brain is tired and your energy runs out, it’s time to go. Don’t feel like a party pooper. And don’t apologize.

You may have a large clan. You may be used to buying them all loads of Christmas gifts every year. If you aren’t able to do it anymore, it’s okay. Black Friday shopping probably isn’t an ideal situation for most people with dementia. In fact, I’d argue that it’s not ideal for a lot of us (myself included). You can give cash. You can give gift cards. You can farm out your shopping to someone who is able to shop and enjoys shopping. Or you can do a family gift exchange where you draw names and only buy a present for one person. Another option–you can tell family and friends that you love them but you just can’t do Christmas shopping anymore. If people care about you, they’ll get that. If they don’t care about you, why were you buying them gifts anyway?

If you had a disease like cancer, people would understand that you have limits…dementia may create limits as well, but other people are less aware of them. If you feel anxious being out of your routine, stay in that routine as much as possible. Let other people know that you (and they) will enjoy the holidays much more if you make a few adjustments. Ask them to accept these adjustments. If they cannot accept these adjustments, do not take it personally. It comes from a lack of understanding regarding what you’re going through and an inability to accept that you are changing as a result of your dementia. 

Here’s what I’ve learned about the holidays in Dementialand…bigger is seldom better. Bigger is just overwhelming and stressful. However, after a diagnosis of a dementia, many people realize their “good” time on this earth might be limited. Their response is to try to pack everything they possible can into the holiday season to make it meaningful. This usually ends in frustration. And annoyance. And arguments.

I can’t say I know that it’s like to have dementia; I don’t. What I do know is that putting a lot of pressure on something to make it perfect usually means everything will go wrong. Don’t fall into this trap. Be flexible. Be patient. Don’t be too hard on yourself. And promise me that you won’t beat yourself up if at some point you get irritable with your family. It’s understandable, and it’s okay. 

This holiday season, I give you permission to say no. I give you permission to say enough. I give you permission to walk away from situations that are potentially frustrating, exhausting, and overstimulating. I give you permission to not send holiday cards, to avoid family members who cause you stress, and to let go of holiday traditions that you’ve embraced in the past. Most of all, I give you permission to tell your family and friends that the holidays might not be exactly the same as they have been in the past. 

That doesn’t mean you can’t have a meaningful and enjoyable holiday season.

Sincerely,

Elaine

P.S. Many of the points made here can also be applied to those of you who are struggling with depression or anxiety, have been diagnosed with an illness other than dementia, have a child with special needs, or have experienced the loss of a loved one (including miscarriage). 

10 thoughts on “A Holiday Letter to My Friends in Dementialand

  1. Spot on! As the mother of two special needs children, our family slogan became, “Lower your expectations and have an exit plan.”

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  2. I’m not sure where to begin, but first thank you. Truly, thank you. The anxiety is high because I know I won’t be able to stay in my routine. That is my lifeline. It keeps me steady and secure. Second, the guilt and frustration is so hard. Bless my hubby for being an excellent caregiver for me but there are days coming up where I know he still truly doesn’t understand. It’s the plans without talking to me first. It’s the telling of others (and his own feeling) that it would be great to get me “out of the house”, to visit, to do something.. that in itself causes me more fear and anxiety than just rolling with the holidays as they come. I’m blessed. I’m thankful. But I’m scared too. It exhausts me knowing not only do I have several Dr appointments in the coming weeks, but the visitors too. The “leaving” and the “small talk” puts me in a panic. My processing is getting much worse and most don’t understand when in a conversation it seems I’m not listening but in reality, it’s the few seconds that are passing for me to “catch up” with what’s being said.
    Lastly, the holidays were always my favorite. From Halloween to Thanksgiving to Christmas. Now they bring dread. I wish my family could read and understand exactly what you put into words that I’m not quite able to.
    Thank you. You’re straightforwardness is a real blessing. Hopefully many won’t just read it but also implement it.
    Happy holidays.

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    1. Thank you for sharing this with me. I hate how this disease has taken away so much from you. Please promise me that you won’t be hesitant to speak up with you are “done” or when you just can’t do something. It’s not you–it’s part of this disease. You are fortunate to have a husband who is a wonderful caregiver, but it is understandable that you get irritated in certain instances. And I hate that the holidays now bring you a sense of dread. I really wish that people had more of an understanding of what you go through every day and especially around the holidays, Melanie. I may never help to find a cure, but I am going to keep working to help more people understand your experiences.

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  3. My husband, who has been diagnosed with FTD, wants you to know that he appreciated you article and that it was “well said”. I would like to add that it helped to explain his cranky mood all week last week as well as our painfully quiet evenings watching Netflix. Thank you. I do look forward to your articles and your tidbits to consider. It gives me courage to forge on.

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