Caregiver, Care Partner, or Dementia Slave: or, this job by any name still sucks
Here’s another discussion that I find can get quite heated some days. What should we call ourselves? The current trend is “care partner” which implies that our loved one is assisting and part of our “team” in the battle of dementia. I get it. I do. I also get where some people might feel that this is misleading as there is not as much “partner” as they would like.
Let’s look at some definitions:
Caregiver: “a person who provides direct care (as for children, elderly people, or the chronically ill”. Makes sense, right? We’re providing direct care. We’re making appointments, filling prescriptions, dealing with insurance, taking care of every worry. Some might read this as direct care in a more literal manner; meaning that they are doing everything for their loved one who is unable or incapable of any self-care. I get that too.
Care Partner: “A care partner is someone who assists a licensed nurse with caring for patients. They form strong relationships with patients and help them with everyday tasks.” Also true and relevant. We assist the nurses, doctors, and other professionals in our lives in caring for our “patient” or loved one. We already have these strong relationships and assist with everyday tasks. The word “partner” implies equality in my mind, which any caregiver would agree is not how it feels in the dementia process. I can, however, see where this term would be more acceptable for those with memory loss, especially for those who are more aware of their situation. Sometimes just changing that one word can prompt them to be more agreeable to accepting help.
Slave: OK. I added this one for a little humor, but in reviewing the definition, it might be closer to the truth than we’d like. A slave is “a person held in forced servitude” or “a person who is completely subservient to a dominating influence”. Sound familiar? While I sincerely hope the term “dementia slave” never becomes a thing, it sure can feel that way some days.
I think in the same way as we described dementia, it really comes down to us and our relationship with our loved one living with dementia. Does Care Partner make you feel more comfortable? Perfect! Is Caregiver better for you? Perfect! Find what fits best and go with it. In all honesty, there are so many other things that demand our attention in this hot mess called dementia. And truthfully, polishing up the name doesn’t change the job. It still can really suck.
I had someone ask me the other day why I’m so comfortable referring to dementia by its name. My immediate, blunt response was “because that’s what it is”. But the more I thought about it the more I realized that while I call it what it is, doesn’t mean that everyone else is OK with that. I’ve worked with PLENTY of clients who assured me that there was nothing wrong with them (although they couldn’t remember their spouse’s name, where they were, or why they were seeing me) and that I was a dirty liar by saying they had any condition that might imply otherwise.
Here’s the scoop. Call it what makes you and your loved one the most comfortable. Some of my folks and I call it by the specific type of dementia they have. With Lewy body we call it “Lew” and talk about it like he’s another person in their life who is like a naughty elf who just likes throwing wrenches and making their life miserable. I’ve found that a lot of people living with Lewy body appreciate this approach and find it easier to talk about it when we do. I’ve done this with other conditions as well (especially as many are named after the physician who identified it. I’m sure they were great guys who are, unfortunately, associated with a horrible illness. Doesn’t make me stop bashing their name though) with some success. Others want to just call it memory loss. Some want to talk about it with the full title (I have Frontotemproal Dementia) and some don’t want to talk about it at all. I’ve even had a few make up completely different titles for what they have because it works for them. Perfect!
My point is, this is not necessarily a fight worth having with someone if they are not comfortable calling dementia dementia. While I tend to be an overly direct person, I’ve also done enough tap dancing to make Fred Astaire look like an amateur to work around someone’s discomfort with their disease process. I know what’s really going on and I know what they need to help navigate the journey. What we call it, is not as important as all of that.
What’s in a name? Well, with dementia, it doesn’t really matter what we call it. It still stinks.
I hope you survived the holidays and are ready to tackle a new year! Before we can get there, let’s talk about the last of our holiday series we need to get through- New Year’s Eve. Sigh.
I don’t know what your history of NYE celebrations have been in the past. Some people love to be out at parties, living it up, and ringing in the New Year in style. The rest of us prefer to stay at home, watch the ball drop in New York and get to bed early (sorry, not sorry). Where I live, New Year’s Eve can rival the 4th of July for fireworks. The entire valley is lit up and, in years past, it has sounded like a war zone in my neighborhood. In this way, even the homebodies need to think of ways to get through the evening with a little bit of sanity.
For those who love to go out, dementia may not make this as possible as it used to be. Maybe invite friends over for a NYE brunch and “ring in the new year” at noon. You can have mimosas (or fake ones), yummy treats, music, sparklers (if that’s your thing) or whatever you like to make the adapted timeframe festive! I’ve done this at the hospital when I worked on an in-patient psychiatric unit, in nursing facilities, and other locations were providing services at midnight were challenging. It may not have quite the same vibe, but knowing that evenings can be difficult with dementia it could be a great compromise!
For homebodies, we may need to look at alternatives to avoid the noisiness of the neighborhood at midnight. This could mean using a white noise machine or a relaxation app to help mask the outside noise. It could mean making plans to stay up and make your own noise so you are in control during that time. I’ve known families who live in locations that can get noisy who opt for a mini vacation to somewhere quieter for that night to avoid the noise (although travel brings its own sets of challenges).
Whatever your choice it’s good to have a plan for how you will navigate the situation should things become overwhelming. If you chose to go to the party, do you know when will be the best time to leave to keep your person’s dignity in-tact while avoiding significant issues on the way home? If you’re staying home, do you have a plan for what to do should the neighborhood gets noisy and your loved one slides straight into panic mode? Think about what you’d like and how you can get as close as you can to it this weekend. My family has an old saying that whatever you do on New Year’s Day is what you’ll do for the rest of the year (in my case that means cooking and cleaning, which means the saying holds no real weight in my house). I want you to go into the new year feeling confident in your abilities and knowing that you navigated through the holidays the best you could with what you had.
You are amazing. Together, we’ll get through 2023 as well.
Happy New Year!
Avoiding Holiday Hell- part three
Let’s talk about emotions. Living with dementia brings a lot of emotions to mind: depression, anxiety, loneliness, and frustration just to name a few. The holidays can exacerbate and amplify these feelings. While for many, this is the most wonderful time of the year, for us it can simply remind us of everything dementia steals and continues to steal from us.
I worked with a gentleman with Lewy body dementia a few years ago. His wife told me how she used to put up a big tree and decorate their house for the holidays. By the time I met them, they had just a little tinsel garland by the door and a tiny tree in the window. She told me that she focused on that little bit of holiday joy because she chosefor it to carry her through. I noticed that she waited well into January to think about taking down the tree. By mid-January, she had decided that she needed that little tree to boost her through the rest of the year. Each month she bought some little ornaments to reflect each season and turned the lights on each evening. She only took it down when her husband passed away that fall.
Why would I tell you this? Every day we have a choice. We can focus on all of the shit dementia hands us or we can find something to buoy us and find little bits of joy. Trust me when I say I know how overwhelmingly dark and oppressive these feelings can be. I’m not blowing sunshine up your skirt in saying that finding joy can help us get through, but I am saying that recognizing that HOW we choose to work through these things is a choice we can make to help. Recognizing our choice in the situation can help us accept some of the feelings that can come with it. We CHOOSE to be a caregiver, therefore we CHOOSE to accept the challenges that come with it. In accepting this role and all that comes with it, we can find ways to work through the emotions too.
My husband’s friend talked us into an overpriced life management class years ago. I honestly think I fell asleep at one point (which tells you the overwhelming value I found there), BUT I do remember them talking about choice and acceptance. The example they used was that if you choose to drive a car, you also choose to accept all that comes with it. Part is the freedom to go where you want when you want. Part is that it could break down while on the road. This very thing happened to me not long after this class and I realized that in recognizing my acceptance of the role of a car owner, I was much calmer while dealing with the less-than-optimal aspects as well. I find this can work with our role of caregiver as well. I think part of the challenge is that no one tells you the dark and gloomy places dementia can take us. Everyone focuses on the possibilities while sometimes we just need the truth.
All of this being said, if your emotional state is more than just seasonal blues, PLEASE seek help. Find a coach or therapist who truly understands dementia and how it impacts you as the caregiver. This is different than other forms of emotional distress and requires the perspective of someone who gets where you’re coming from. If you aren’t OK, your loved one won’t be OK. Putting yourself into an emotional sinkhole will not help them be better. It won’t make the dementia go away. By taking care of yourself, you help everyone around you.
Getting back to the holidays, take a few minutes to prepare yourself for what you will do should these emotions well up during the rest of the season. Have a plan for who you will call, who can step in to give you a few minutes to catch your breath, and who you can count on to give you a boost if you need. Talk to these people ahead of time and let them know what you will need and how you would like them to execute your needs. By being clear with them and outlining your expectations, you CHOOSE success. Even if you feel all alone and that no one cares, reach out. You may be surprised to find there are people who have been wanting to support and help you, but simply didn’t know how. How amazing of a Christmas gift would that be?
Avoiding Holiday Hell- part two
OK. Last week we talked about the big F of holidays (family. Family. What word were you thinking?). This week we’re going to look at expectations. Sometimes the person we’re most worried about disappointing during the holidays is ourselves.
When I was just out of grad school I had to go to a training for my job managing a group home. I couldn’t tell you who was speaking or even what it was about but this one line stuck with me and I use it a lot in my life. “Some days you have to accept as close as you can get to what you want.”
What does this mean? It’s all about recognizing that things may not be perfect, but they’re close enough. I’ve found that this has tempered my expectations and possible disappointment in my everyday life. A day where my patients all make great strides toward their goals. Great. A day where everyone is miserable and not working on anything I have planned? Great. Knowing that the day is going to get me as close as I can get to what I want in that moment makes it easier to accept both the good and the not-so-hot.
How can we use this for the holidays? Well, just like it sounds- we’re going to accept as close as we can get to what we want. We’d prefer to spend a full 8 hours with our family, but dementia decides that 3 hours is enough. Close enough. Three is better than none. We'd prefer to attend five holiday parties, but dementia decides that we can only do one. One is still better than none. We’d love to make all of the cookies and goodies we love this time of year but dementia demands more of our time so we end up with goodies from Costco instead. It’s OK. The world will not end. It’s all about accepting what we have and being OK with whatever that is.
Try it for a few days. Start the day with “today I will accept as close as I can get to what I want” and live that all day long. Going in with the full understanding that our best will simply be the best today (even if it isn’t as best as yesterday) can really shift our thinking and allow us to accept all of the good from the day. In doing so, we also ease some of the stress of the holidays and the potentially crippling expectations we tend to put on ourselves.
Cut yourself some slack. Take the gift of as close as you can get to what you want.
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!