Avoiding Holiday Hell- part one
Let’s admit it, the holidays are stressful WITHOUT living with dementia. There’s dealing with family, finances, being social, dealing with family, managing expectations, cleaning the house, dealing with family, traffic, emotions (anxiety, depression, etc.), dealing with family. Did I mention dealing with family? And that’s all WITHOUT dementia thrown in to muck things up.
Since family is such a big one, let’s start with that giant ball of wax. So many of us have that Norman Rockwell picture of the perfect holiday meal in our heads or the Hallmark movie where the everyone realizes what’s most important in life and there is peace and happiness in the end. In reality, this is not what most of our holidays look like.
Family is complex. There are so many dynamics and inner workings that come into play and seem even more intense around the holidays. Adding dementia to the mix only makes things more challenging. One thing that can help is to set your expectations and limitations for others early. If making seven dozen cookies is what you’ve done in the past but it’s too much now, select your absolute favorites and ask another family member to make the others. If days of celebration is now too much, focus on the events that have the most meaning. If dinner with the entire family at 5 triggers anxiety for you and your loved one, recommend an early dinner or even a holiday brunch to work around sundowning or other behavioral episodes. Sometimes explaining the “new normal” to family can help them understand the limitations and challenges you’re experiencing and they can adjust with you to make the holiday safe and sane.
Another thing that can help is setting limits and boundaries. Clearly state your limits. If two hours is all the family you can handle, say so. If your loved one needs a “safe room” where they can decompress, take a nap, or just find some quiet time, ask for it. Let them know that there are things you can and can not compromise on. Dementia demands that you take care of you and your loved one. Over stimulation, altered schedules, missed medication, different foods, and poor sleep can all impact your loved one and how they will respond to the holidays. Making your needs very clear and where others need to adapt to meet those needs can help make the holidays more successful.
Remember, your sanity is vital in avoiding holiday hell. Recognizing your needs, your loved one’s needs, and setting boundaries with family to ensure these needs are met can aid in bringing peace and enjoyment to the holidays while living with dementia.
Finding moments of thankfulness- or finding the tiny silver linings in the s**t storm that is living with dementia
Not to sound cliche, but this is a great week to find tiny bits to be thankful for. This can feel so much more difficult when living with someone with dementia. It can feel easier to identify all of the things that suck. The things that drain the life out of you. The things that make you question everything you know and believe.
Sometimes the silver lining is only that you survived today. Sometimes it’s talking to another caregiver and realizing that what’s making you totally nuts is minor in comparison to what others are dealing with. Sometimes it’s something that made you laugh (even if you know you shouldn’t have). Sometimes it’s having a moment of clarity and connection with your loved one.
It can be difficult to find something positive when every day can feel like an endless stream of crap, but I’ve found that if we get into the habit of identifying and celebrating even the smallest victories, they start to add up and fortify us. This is not the same as putting on your rosy glasses and ignoring everything else that's going on, but finding the bits to celebrate. Learning how to see the rainbow in the storm.
Find your thankful this week. Celebrate the little things. Love those around you for all that they provide (the good, the bad, and the ugly). Have a wonderful Thanksgiving.
This week has been crazy. My husband has been out of town, our puppy is having her first week being home alone during the day (warranting extra neediness in the evening), and work is…well…work. In all of that, I realized that I didn’t post a blog for you on Wednesday morning. And then I got distracted and didn't write one last night. Or this morning. I’m finally getting to it now while I’m navigating around our cat who decided they need attention too.
I spent some quality time beating myself up for neglecting you. I felt like I let everyone down by missing a deadline that I inflicted on myself. Then I took a minute and thought about what I would say to my coaching clients. I would remind them that they are human. That life gets in the way of our plans sometimes. That we need to forgive ourselves for simply being human.
This is not always an easy thing for me. I like getting things right and I especially like getting them right the first time. It’s something I’m working on and one of the biggest steps is to forgive myself for not being perfect. To cut myself some slack. To recognize that something else needed my attention and that I can catch up later- or even miss a week- and the world won’t end.
Why am I sharing this? Because I’m sure I’m not the only one who struggles with this. I’m sure plenty of us on the caregiving journey are also beating ourselves up for not being perfect. For feeling guilty for taking a moment for ourselves. For letting ourselves down. For feeling like we’re letting others, or everyone, down. Take a moment and forgive yourself. You are doing the very best you can with what you have in this moment. Honor that and yourself with the gift of forgiveness.
Adaptation is the Key-Or at least we can adapt our environment to make life a little easier
In my experience working with adults with memory loss, I’ve found that we need to not only think outside of the box but ignore the box altogether. We need to adapt, as you know, but sometimes adapting our environment can make things even easier.
There are a LOT of tools out there to help our loved ones maintain their independence as long as possible. There are tools to help with dressing, activities of daily living, and mobility. Surprisingly, a lot of folks are hesitant to utilize these devices even when they know they could make their life better. For example, a walker can keep someone safe, but if it’s left behind every time they get up, it’s useless. Enter a wheelchair alarm that can connect the walker with the individual. They walk too far away from the walker, the alarm sounds and they’re reminded to grab their walker. A personal voice amplifier could help increase their vocal volume and make communication easier. Even doorknob covers, button adapters, and no-tie laces can make life a little easier while maintaining the quality of life we’ve enjoyed in the past.
How can we encourage our loved ones to use the multitude of tools out there when they’re resistant? I find focusing on the positive can help a lot. “This will let you continue to take care of this yourself”, “This will help with the frustration you’ve been experiencing”, “This will make life better”. Another trick is to make it sound like it’s something we love and use (or actually use it ourselves to show how great it is). Sometimes our recommendation can make a big difference.
Finally, sometimes we have to bring in the professionals to make the change happen. It always amazes me how many times we say they should do something, but as soon as a trusted therapist or physician says the exact same thing it becomes the gospel truth. Don’t be afraid to use these little tricks to help make both of your lives better. If you have a good team, they’ll be more than happy to write a prescription for a shower or other needs, help support your needs, brainstorm ideas, and find viable solutions.
Adaptation is key, but finding ways to make the adaptations easier is absolutely golden!
Let’s face it, being a caregiver of someone with dementia can feel like treading water in an endless sea full of sharks, jellyfish, and piranhas (I know they all don't live in the same water, but it feels that way), forever, with no end in sight. We manage all of the appointments, medication, therapies, and everything else with the goal of at least keeping what we have. To slow the ongoing train of dementia. To keep whatever it is we have right now.
We know it’s a long goodbye, but what happens when we realize that the dementia is winning? When we really start to see them declining beyond where we can feel we can help? When it sinks in that they are going to die?
Sometimes we feel guilty because we feel like we could have done more. Sometimes we secretly wish for them to slip into that next life of peace; partially for their relief, and partially for ours. Sometimes we want to push for every extra minute we can get even if we know that it prolongs our job as caregivers. Sometimes we don’t know what to do at all and feel numb about the whole thing.
These are all normal and part of this weird dementia journey. While a part of them has been dying since before their diagnosis, it’s completely different when we’re facing their physical death. In death, there is no hope for progress, for a cure, for reconnection, for acceptance, for acknowledgment, for love. In physical death, we lose them forever and it’s not really something that dementia trainings and support groups prepare us for.
What can we do? Recognize this stage and adapt- just as you have to every stage before this. Sometimes our loved one is unaware of this decline, but sometimes they are. If they are, allow them time to express their thoughts, feelings, and worries. Don’t answer for them. If they can’t explain, ask questions. I find that asking questions with the intent for me to better understand can sometimes help them figure it out too. If they struggle with questions, I might give options- “is it more like this or like that?” For those who are unaware, it can be easier, but at the same time, we have less insight into how they are feeling or what they’re experiencing. While it may seem less stressful, it may actually be more because all of the decisions are on you, the caregiver.
This may also be a good time to look at preparations. A caregiver I met with this week and I agreed that a meaningful activity he could do with his wife was to bring pictures from their favorite memories with him to the facility where she lives. While he’s sharing memories with her, he’ll also be marking the pictures he wants for her memorial video. This can help him process her failing health while still finding connection and joy today.
What would you want your loved one to do with you if your health was failing? How would you want to be loved during that time? How can you transfer those thoughts to your loved one? How can you let them know you love them in order to let them go? How can you find peace in all of it? All of these can’t be answered by me in a little blog. They are things that you’ll have to examine for yourself (or with your therapist or caregiving coach), but I know that you already know all of it because you know yourself and your loved one more than anyone else ever will.