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.
I truly enjoy Halloween. I love thinking up fun costumes, handing out goodies, seeing all of the kids (and not-so-kids) in our neighborhood, and looking at all of the creative decorations. Since I live in the desert, I can sit on my porch and enjoy the evening. For our loved ones with dementia, this may not be as fun of an evening.
The fun costumes that bring us so much joy can become very confusing for those with dementia. When the truth becomes a lie, lies like masks and make-up become absolutely terrifying. The constant ringing of the doorbell by trick-or-treaters, while fun and exciting in the past, can become a source of panic and anxiety now. Having candy in the house can be tempting for the best of us, but compulsive for those who no longer have control or filtered thoughts. Lack of filters could make parties or other social interactions virtually impossible.'
How can we help with this, especially when our loved ones still want to engage in the holiday?
It is SO easy as human beings to want to compare and contrast our lives with others. We look at other people and think how easy their life is, how smart and well-behaved their kids are, how successful they are. It seems we do this even more as caregivers. She seems so calm and under control. He sounds like he’s found all the answers. They never complain about their loved one’s behaviors or challenges.
Want the truth? THEY’RE LYING. It might be to you. It might be to the universe. It might be to themselves, but they are. OK, they might also be new to the caregiving journey and it IS all sunshine and rainbows and unicorns and Skittles...for now. Remember when you lived there? Remember when you thought this would all be OK? Remember when you read all of the literature online, pamphlets from your doctor or some other organization, or the “how to” books on living with dementia? You know, when it sounded like all you needed was some good pre-planning, a little patience, and medication, and you’ve got this? Yeah. I don’t really either, but we were all there at some point. Now, for better or worse, we know the real truth.
So as difficult as it may be, stop comparing your fruitcake with someone else’s apples. Dementia is a journey through the same forest, but we are all on very separate and distinctive paths. We might be able to see through the trees and catch glimpses of other caregivers, but we don’t see them completely. We might see the boulders on ours, but not the tiny rock that will trip you up on theirs (seriously, as a runner it’s NEVER the big rocks that trip me, it’s some little one that I didn’t see that derails me. I’m sure you follow me on this one). They may feel theirs is completely uphill both ways in a raging snowstorm, but not see that yours is all quicksand.
In this world of social media, filters, “influencers”, and other exercises of trickery, illusion, and misdirection we see this more and more. We put our best face forward to hide the pain and struggle that we feel. We appear to want others to feel comfortable and safe when we feel anything but. We look at others doing this and compare our truth with their internet spin. STOP. Stop measuring your success and worth with other people. Stop collecting stats on everyone else and measuring them against yours. Stop looking at everyone else’s loved ones’ path of dementia and comparing it to yours. They are all equally horrible, heartbreaking, frustrating, and difficult. Each person just comes to the trip with a different pack of tools, type of relationship, and attitude. AND ALL OF THIS CAN CHANGE BY THE MINUTE.
What am I saying? Don’t judge yourself against other caregivers. It will honestly only increase your feelings of frustration, depression, and hopelessness. If you really feel that you need a measuring stick, find ones that support and boost you up.
Cut yourself a little slack.
I’ve heard things like this throughout my life, but the way I heard it in my Neurolinguistic Practitioner training resonated a little deeper with me. I heard it again today and it hit me even harder. The way it was approached today was as “tall poppy syndrome”. This is where if you grow too tall, someone will cut you down. These are not the situations we want to find ourselves in or the kind of people we want to be with. We want to be able to grow as tall and beautiful as we want to be.
What do I mean? I mean we want to find and keep the people who boost us up, who let us be who we are without harsh judgment, and only want the best for us. In this caregiving journey (and in life in general), it seems the people who want to drag us down come out of the woodwork. The people who want to tell us what to do, how to do it, and how they know better when they haven’t spent a minute in our situation to know anything about anything. They not only come seeping out, they become very vocal. People we don’t know or haven’t spoken to in years are suddenly the experts on our lives and what we should be doing. Worse, sometimes these are our family and friends.
While it’s difficult, sometimes we have to limit our interactions with these people and focus on those who help us soar. Being the nice people we tend to be as caregivers we don’t feel comfortable telling them to take a flying leap (even when we REALLY want to), but we CAN put limits on our time. “I’d love to talk, but I only have 5 minutes” (seriously, set a timer if you have to). “It’s great talking to you every day, but I really need to focus on my loved one. Why don’t we set up a time to chat later this week?” “There’s someone at the door/the oven timer’s going off/what the? I have to go!” Trust me, I’ve used all of these AND MORE to put some limits out there without feeling like I’m being a total jerk or worse.
There are a million polite ways to end a conversation that is starting to sap your energy. USE THEM. You have my permission to leave the turkeys in the dust while you step in to your regal eagle life!
I was first introduced to hypnosis more than 10 years ago when I was in a funk. I wanted to lose some weight and thought hypnosis would help. I’d heard mixed reviews, but I did some research and decided to give it a try.
I found Ardean and she helped me work on my self-esteem and self-image (which was the root cause of my weight gain). She also introduced me to the world of Silva Method and a whole world of mind over matter. It changed my world. It opened doors for me to feel like I had more control over my life and the situations around me. It made me feel confident and powerful.
This spring I saw an advertisement to learn how to be a hypnotherapist myself. I jumped at the chance. How amazing would it be to help people in the same way Ardean helped me? I enjoyed every minute of the training, engaging with my classmates, and practicing our skills together. I loved it so much that I signed up immediately for the subsequent coaching, neuro-linguistic practitioner, emotional freedom technique, and mastery courses. I spent the next four months spending my free time and two full weeks of intensive training absorbing all I could about these techniques and practicing them with my peers to hone my skills so I can use them to help others live their best life.
What is hypnosis? Believe it or not, you’ve already experienced hypnosis. Ever drive somewhere and now remember how you got there? Hypnosis! Ever daydreamed? Hypnosis! OK, that’s a little oversimplified, but seriously, it’s that easy. Unlike what you see on stage in Vegas, you can only be hypnotized with your permission. A good hypnotherapist uses your own words and wishes in an ethical and ecological way (meaning for the good of all involved) to implant them in your unconscious mind to bring them to fruition. Many people utilize hypnosis to address smoking cessation, weight loss, stress reduction, self-esteem, and similar issues.
Is hypnosis right for you? It most certainly could be. Tapping into your subconscious mind can help you access powers you don’t know you have. Can help instill skills you desire or release habits you don’t. Can implant a sense of confidence and self-worth. Can help you be a better caregiver. Can help you be a better you.
For more information about hypnosis or other services from Turtle Mountain Wellness, please check out our website and submit a client application for direct communication regarding your needs and goodness of fit.
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!