I was in a conversation this morning about boundaries. The intent there was about the importance of having and enforcing them. To put up walls, so to speak, to keep one’s self from getting too involved or to simply keep others from running us over.
Let’s start with good boundaries. These are the limits we put on ourselves, and in turn, others that protect us. For example, I had a landlord who would text me about the weed (singular) in my front yard which violated the HOA rules at 2 AM. I had to set a healthy boundary with him requesting that all non-emergency communication be conducted during normal business hours. He wasn’t always good at it, but got better with redirection. This boundary was healthy and set limits regarding when we could communicate. I did my best to respect the same for him. We can do the same with family, friends, neighbors, or other people who tend to run us over or take advantage of us. We can start a conversation with “I just need to vent. I don’t want any solutions, ideas, or commentary. I just need someone to listen”. This sets the boundary in the beginning as to what you are willing to accept in the conversation. If they violate that boundary, you can thank them for their information and end the chat, reminding them that their ONLY job was to listen. In the same way, starting a conversation with “I need some advice” lets people know that you’re looking for their input. Healthy boundaries don’t need to be big and scary and limiting. They can be as simple as stating our expectations and holding people accountable.
Sometimes we use boundaries to protect ourselves from everyone and everything. We put up barriers more than boundaries to keep others from getting too close, from knowing what is going on in our lives, and to close ourselves off. I’ve heard families say that you can’t mention a loved one’s diagnosis in any conversation (even with their doctor). I’ve heard co-workers say that getting to know clients and their families violates boundaries and makes it difficult to work with them (which I FULLY disagree with, but that’s a blog for another day). Where is the line between a healthy boundary and an unhealthy barrier?
I think a question to ask is how this boundary is impacting me. Is it helping me stay healthy or is it putting me into denial? Is it putting limits on the people who tend to overstep, overbear, or overrun, or is it simply hiding me from everyone? Is it empowering me or overpowering me? Is it hurting others or helping? Sometimes new boundaries can appear hurtful to others. This is especially true if it is stopping those who have been happily walking all over us in the past. People don’t really love when we stand up for ourselves. Too bad. If they love us, they will understand and respect our request. If not, then the boundaries can be strengthened further as needed.
Boundaries can help us live a healthier, calmer, and more peaceful life while dealing with dementia. Dementia knows no boundaries and will continuously push them. Taking some semblance of control in establishing some healthy boundaries can help us set up some parameters to guide others in our life toward helping us on our journey or stepping aside and letting us move forward as we need.
This has been on my mind this week. What do you feel you’re worth? I’m not just talking about pay (which will NEVER match our value). I’m talking about all of the other things that contribute to our self-worth.
I’ve been hearing this from people from teachers, to therapists, to support staff, to caregivers like you. We feel undervalued. We feel overburdened. We feel we’re not being heard. Our thoughts, feelings, concerns, and values seem to be lesser than those around us.
I’m here to tell you all of that matters. YOU matter.
You are worth being heard. You are worth being taken care of. You are worth so much more than you think.
Here are some things you can do to show yourself some love:
YOU are a precious gift. Treat yourself accordingly!
This is something I hear from caregivers all the time. As professionals, we regularly tell caregivers that they need to take care of themselves and find some time for themselves to make sure that they are well enough to keep up with this demanding role. But what does that even mean?
There are people who feel like “me” time needs to be a day at a spa, a day to get caught up with friends, spending quality time in their garden or out for a hike, or working in your shop, or simply watching movies or enjoying a good book. Sadly, when you’re a caregiver, these luxuries are not always possible. Like so many other things, we have to adjust our expectations.
What could “me” time be when we’re feeling buried under the responsibilities of caregiving? It could be giving yourself permission to order dinner or zip through a drive-thru on the way home to give yourself a break or have a few minutes to “relax” later. It could be purchasing nail polish stickers to keep up a manicure without having to worry about the time to apply polish and wait for it to dry (and they have fun patterns so you can perk up your day that way too). It could be listening to your favorite songs or a recorded book while attending to household tasks. It could be finding a few minutes to engage in meditation, deep or rhythmic breathing, or simply catching your breath.
Another option is to ask for a little help to lighten the load. While we like to take care of everything ourselves, sometimes we need to let go of the things we can in order to focus on the things that are most important to us. Hate doing yard work? See if a neighbor is looking for some extra money and is willing to help. Hate cleaning your house? Look into having someone come even once a month to do the deeper cleaning and freeing up some time for you. Really just need to get away, there are agencies who can come and sit with your loved one or a neighbor might be willing to help out as well. Plenty of youth programs require volunteer service. Perhaps they could provide some help. More times than not, when caregivers take advantage of these opportunities I don’t hear about the expense. I hear “why didn’t I do this sooner.”
Don’t wait to take care of you. Seek out even small victories of “me” time. Cherish them and use them to fuel your way moving forward. The honest truth is, if you’re not OK, your loved one isn’t OK either. Fill your cup so you can continue to fill theirs!
Wouldn’t it be amazing if dementia came with an instruction manual? There are plenty of books out there that give you the impression that if you just follow these five simple steps or if you do what this professional says your life will be a piece of cake. And we read them, devour them, and hang our hopes on these steps and tricks only to be disappointed or more frustrated. They didn’t work the way we wanted. They might have helped, but only momentarily. Why? Because they forgot the biggest part of dementia care. Each person is different. Each comes with their own history, coping skills, and quirks.
Why am I sharing this? Because we all want to know the right thing to do at the right time. We’re barely treading water and will latch onto any life ring we can find. I’m here to tell you that you’re going to make mistakes. You’re going to snap at your loved one when you know you shouldn’t. You’re going to forget that they don’t remember and get frustrated. You’re going to doubt all of your life choices and think about running away. It’s all normal. Forgive yourself and move forward with this new information. Instead of viewing mistakes as failures, choose to see them as learning opportunities. If you have children, you know this is how you became a better parent. Kids don’t come with instruction manuals either. We learned as they grew. It works the same when living with someone with dementia.
Each person living with dementia is unique. While the disease process may be similar, the experience is purely individual. Same for you. Your special talents, skills, and life experience colors how you will respond and react. Blanket recommendations and techniques have great aspects but may not work for you or your loved one. Find the bits that make sense to you and focus on those. Know that some things that sound ridiculous today may be perfect later. Stop beating yourself for not knowing what you didn’t know. None of us know everything. None of us. We each know just as much as we know right now, but we do have the capacity to learn as we go.
Be patient with yourself. You know your loved one best. And you know more than you think. Be open to new ideas and suggestions, but know that not everything is for everyone. You are amazing and can do hard things. You are writing the instruction manual as you go. By trying different things and learning what works for you and what doesn’t, you are formulating your success. Trust yourself. You’ve got this!
Welcome! Welcome to the messy, confusing, overwhelming, and challenging world of being a caregiver for someone with memory loss/dementia. My name is Dr. Becky Wellman. I have been working with older adults with memory loss for almost 30 years and have a special passion for helping them and YOU live your best life despite all of the challenges that come with this journey.
These “newsletters” will be short and sweet. I know you don’t have time to sit and read dissertation-length “how-tos”. I know you are feeling overwhelmed and like life is spinning out of control. I’m here to help. That said, this is not a sunshine, rainbows, Skittles, and unicorns approach. Living with someone with dementia is none of that. It’s difficult. It’s frustrating. It’s ugly. Let’s face it, it sucks. I embrace the suckiness and help find ways to help you navigate through it. If you’re looking for the straight and honest truth, you’ve come to the right place!
Dementia sucks. Caregiving sucks. Welcome!