Do you find yourself thinking the following thoughts?
“Am I doing this right?”
“Did I do everything I could to make her feel safe and happy? And did I do enough?”
“I want some time for myself, but I feel guilty leaving him alone.”
In today’s blog, I want to talk about caregiver guilt, fear, and anxiety. I notice that all 3 emotions tend to be intertwined, with guilt being the dominant thread in the emotional tapestry. My approach to this topic is beyond academic or theoretical. I was a family caregiver and I was wracked by the same emotions. There were times I found myself doing the exact same things I was telling other caregivers not to do. You see, when I work with people who I don’t know that well, I have no pre-existing ways of communication. I don’t know who they were. I only see what is here now. I have a clean slate and can easily go into dementia mode when working with people living with dementia who are strangers to me.
But as a family member, the dynamics are very different. There are layers to relationships and years of interactions—it is like a very familiar dance that you have done for decades. You know this person so well, you have this rhythm to your relationship. Yes, there were the occasional misunderstandings and conflicts, but you could resolve them. Even the conflicts had a rhythm to them.
And then dementia shows up, and the rhythm is shot to hell. All the ways you used to talk to them, all of the ways you used to interact with them starts to backfire. It is so hard to recalibrate because you have these deeply ingrained patterns of communication and interaction that you have learned and done for decades. You remember what was, and you want it back. There is pain and grieving that colors your interactions. You listen to one of my podcasts, read one of my blogs, or thumb through a chapter in my new book. You learn a new strategy, a new way to communicate. You use it. Hey, it works! But then something happens that takes you off guard. You forget the strategy in the heat of the moment, and you fall back into old “default” patterns and everything goes sideways. Maybe you feel badly. You say to yourself, “I should have known better.”
Here is where I step in and help you release some of those thoughts and feelings that are not helping. Let me start with “am I doing this right?”
No “Right” or “Wrong” Way of Caregiving
First, there is no one “right” way. If there were, I could hand you a booklet with 15 strategies and we would never talk to each other again. In fact, I do have a free booklet with 15 strategies to help people with dementia who refuse help and care, and that booklet is just the start of the journey. There are approaches that work a bit and approaches that work better. The goal is to figure out which strategies work best for your family member in your situation. In fact, I have found that there are specific strategies that are most effective in the early days of the dementia journey, while there are other ones that get better results toward the middle part of the journey.
Every individual has value systems, likes and dislikes, and personality traits. Dementia can make personality traits—both positive and challenging—more exaggerated. Dementia can exaggerate likes and dislikes. Dementia can even change some personality traits and alter likes and dislikes. Here is why. Different dementias cause specific parts of the brain to shrink. A person with Alzheimer’s dementia starts out with shrinkage in certain memory parts of the brain, like the hippocampi. This explains the loss of short-term memory. Their personality stays consistent, at least in the beginning. But fronto-temporal dementia causes shrinkage in the front and sides of the brain, and these lobes are necessary for executive function. Executive function involves planning out activities, rational judgment, logic, and empathy. A lot of our personality quirks live in the frontal lobes of the brain. If you are caring for someone with FTD, you are dealing with a lot of apathy, poor decisions about finances, and a complete disregard for YOUR feelings. I have a blog post titled, “Is my spouse a jerk or is it FTD,” because the changes in personality and value systems usually show up first. The memory problems happen later.
This brings me back to my earlier statement, “there is no RIGHT way.” In my clinic, and in my private consultation practice, I show family caregivers which general strategies are most likely to promote communication and cooperation—and those strategies are different depending on the type of dementia. I then work with them and we tweak the strategies so that the strategies are aligned with the current value system and priorities of the person living with dementia. Here is what I mean by that.
I was working with 2 different clients. Both clients were at their wits end because their loved one with dementia refused to cooperate and was convinced that they were fine.
The first client was caring for her mom, and mom refused to remove soiled clothing. My standard approach is to ask questions about pre-dementia careers, values, and habits. I learned that mom had worked as a domestic, was a savvy businesswoman, and ultimately built up her own cleaning business. I suggested that the daughter, who was my client, tell mom that she would not get paid for the laundry services until daughter had a full load to run—and she needed mom’s soiled clothes to fill the washer machine. I tapped into her mom’s love of efficiency and good business sense. It worked. Mom stripped out of the soiled clothes, and her daughter paid her a dollar. This became a strategy. Over time, dollars were replaced by coins which were easier to find (mom squirreled money all over the house) and less likely to get ripped up. The daughter used this strategy—paying mom for domestic services—to keep mom busy during the day.
My second client was a wife whose husband loved to mow the lawn and tend to the yard. His use of the lawn mower was becoming a safety issue. It was a gasoline mower and her husband was a smoker. She once saw him filling the mower with a gas can and with a lighted cigarette in his mouth. She also was concerned about him getting hurt by the blades. Her initial solution was to tell her husband that he was too sick to mow the lawn and have one of the grand kids take over. This approach backfired. Not only did her husband become very angry, he then became fixated on mowing the lawn because “nobody was going to tell him what he can’t do.” He began mowing the lawn for hours every day, starting around 8 am and going until sundown. He was gouging out chunks of lawn. My client was upset because he refused to stop and come into the house for food or fluids. His anger about the lawn mower was spilling into all parts of their life.
Like the first client, I asked questions about pre-dementia careers, values, and habits. I suggested that the gasoline mower get replaced by an electric mower with the blades removed. I also suggested that the new electric mower show up as a present.
It worked. Their son arrived with a large box covered in wrapping paper and with a giant bow on it. Son’s script was, “Hey dad, I have a present for you. Just because I love you.” My reasoning was that a gift would be better received (no pun intended) than merely swapping out the mower. The gift delighted my client’s husband, who happily unwrapped the large present. The wife’s script was, “Here is a brand-new mower to replace the old one.” Both son and his father assembled the mower—the son did most of it, but the point was to have my client’s husband involved in the process.
As instructed, the son had already removed the blades and had charged up the batteries, so assembly was a matter of attaching the push handle to the main body of the mower. Both my client and her son watched as their loved one with dementia happily mowed the grass, the sidewalk, and part of the gravel driveway. The quietness of the mower was a plus, especially when her husband wanted to mow early in the morning or later in the evening. Another bonus was the electric batteries lasted about an hour and took 90 minutes to charge, which forced her husband to come inside and “take a break” and hydrate.
These two examples show how I helped both clients. Again, there was no “right” way, but there were “best” ways that considered the personality of the person living with dementia and their past lives. And here is another aspect of caregiving that most caregivers learn. What worked one day does not always work the next. If a certain strategy is not working, it is not because of you are doing it wrong. It may be that your loved one is feeling irritable because of fatigue or cranky because of an arthritis flare up.
The Trap of Perfectionism
I’d like to address this statement:
“Did I do everything I could to make her feel safe and happy? And did I do enough?”
Wow, those two sentences are rough by themselves; to use them together is to create your own living hell where you will be surrounded with 24/7 guilt. Here is my suggestion. Whenever those 2 sentences pop onto your thoughts, reword:
“Did I take the necessary steps to keep my loved one as safe and as happy as possible without sacrificing my own mental and physical health?”
The second sentence is much more realistic because it addresses a couple of boundaries. First, phrases like “do everything I could” and “did I do enough” are automatically going to pile on the guilt. Both are unrealistic and set-ups for failure. Caregiving is challenging enough. Piling on questions like “did I do everything I could” or “did I do enough” is picking at the scabs. Eww.
Many caregivers also fall into the perfectionism trap. So many of us were raised to value, and strive for, perfection: perfect scores on exams, the perfect prom gown, the perfect wedding, the perfect marriage, etc. I was raised this way. Nursing school was the worst. We were all held to this perfect nurse standard: we had to look perfect, act perfectly, never lose our cool. We were expected to always say the right, therapeutic thing. Some of that shifted when I landed my first job as an RN at the Philadelphia VA Medical Center. My preceptor had a favorite saying, “Good enough for a government worker.” At first, I was shocked, thinking he was advocating for a half-assed approach to patient care. As I got to know him better, I realized that he was trying to teach me to ditch these unrealistic perfectionistic holdovers from nursing school and to harness my own ingenuity and creativity. You cannot be perfect in an imperfect system. It’s 2 am, I’m the lone RN hanging IV meds, and there are no IV poles to be found. I could go the perfectionist route and delay the medication until I obtained an IV pole from central supply (which would have arrived at 6 am), or I could finagle something that involved waterproof tape, a metal coat hanger, and a roll of gauze. Mission accomplished.
A couple of years ago, I coached a husband caring for his wife. Mr. Smith (not his real name) was upset because she wanted to put on her own make-up. He would tell his wife not to use make-up because she did not apply it “perfectly.” Mr. Smith told me during one of our coaching sessions, “I don’t want my wife to leave the house looking like a clown.” OK, I understood wanting to protect his wife’s dignity. But she was very upset about this issue. I asked to see his wife after she applied her own make-up and to be honest, it looked fine to me. Maybe a little bit of coloring outside the lines for the lipstick, but personally, I’ve always had trouble with that aspect of make-up. The husband and I discussed finding the balance between protecting his wife’s dignity and giving her life meaning and joy. Applying daily make-up was a source of joy for his wife, and I was encouraging him to support her. What soon became apparent was my client’s fear of being judged by others because he wasn’t measuring up to THEIR definition of a good caregiver. He was struggling with perfectionism.
Caregivers, please recalibrate what you mean by “everything” and “enough.” I’m a firm believer in “good enough” caregiving. Let’s face it. None of us can ever “do enough.” That phrase is loaded with a shit-ton of unrealistic expectation. In fact, I’m a complete fan of “good enough” caregiving. When I say “good enough,” I mean that I took the necessary steps to keep my loved one as safe and as happy as possible without sacrificing my own mental and physical health.
Let’s dive a little deeper into “safe” and “happy.” If a specific activity accomplishes both, hurray! But sometimes “safe” overrides “happy.” My family member may be happy if I let her drive the car, but no one—herself included—will be safe. And there are times where “happy” overrides “safe.” My family member is always walking. He walks laps around the facility. Any attempt to have him sit still is met with resistance on his part. He is unsteady at times, and I think that maybe I should insist that he sit in a wheelchair in case he falls. I also know that taking such as step—no pun intended—would make him absolutely miserable. So, I leave the situation alone.
As I noted earlier, you cannot be perfect in an imperfect system, and dementia caregiving is definitely an imperfect system. Which leads me to the last topic: time for myself.
Having some time to and by yourself is not a luxury. It is important for sanity and to recharge. Especially if your loved one with dementia is “shadowing” you and will not let you out of their line of sight.
If your loved one can be safely left alone, take the time to go off by yourself and do something that recharges your spirit. If your loved one cannot be safely left alone, enlist the help of a relative or friend. Especially if someone had said to you in the past, “If you ever need help, let me know.” I would start the conversation off that way. I often hear caregivers express hesitation to ask an adult child “because they are so busy.” Are they truly that busy, or is that a story you are telling yourself? And if their schedule is full, imagine how much fuller their schedule will be if something happens to you and they become the full-time caregiver! I will talk about some ways to meet your self-care essentials in a future podcast.
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.