For me, the trauma of caregiving didn’t begin until five weeks before my father ultimately passed away. For others, it begins somewhere in the caregiving journey. I read another Substack article recently about the trauma of death, and it triggered this thought for me.
Trauma can come from anywhere, but for some reason, as caregivers, we’re seen as the one who steps in where nobody else wants to go.
You’re the one who finds him or herself changing adult diapers when you never thought you would have to do something like that.
I’m the one who had to call the police on my 86-year-old father so he could receive the proper medical care.
We’re the ones who slog through some days, waiting for bedtime and for what we hope will be a full night’s sleep.
We’re the ones who wake up some mornings ready to take on the world, only to find out we must do just that.
Caregivers are the ones who get yelled at, hit, spit at, and a host of other grossness when our loved ones are trying to express pain, frustration, feelings of isolation, or agitation.
You’re the one who sometimes hides your feelings, cries, yells when nobody can hear, and often feels as isolated and unseen as is humanly possible.
You’re the one who must become a detective, a nurse, a cook, a housekeeper, a mind-reader, a hazardous waste cleaner, a searcher for all things lost, a launderer, a hand-holder, a playmate, and a host of other jobs.
And because you’re the one, you suffer silently, unless you’re fortunate enough to belong to a support group where you can share, unintimidated and unrestrained, and feel heard.
Everyone tells you what a great job you’re doing, and they probably mean it, although they have no idea what the job entails - at all.
So, yea, there’s trauma. Depending on the type of dementia your loved one has been diagnosed with and where they are in their journey, there may be little trauma now or there may be heaps of it.
Where is this trauma coming from? What does trauma look like? How can you deal with it when it hits, because honey, it’s gonna hit.
This is where I stop and think you, my faithful subscribers, for your undying support and dedication. It’s also where I specifically thank you, my free subscribers, because you are the glue that holds this journey together. Your sharp insights through your own writing, combined with your comments, likes, and restacks, light up my day and help me know that I’m reaching people who need to read what I’m writing, just like I need to read what you’re writing. I hope at some point, you’ll consider becoming a paid subscriber so you can hear the rest of this podcast episode and all the others. If not, I understand and I’m eternally grateful for you!
The Caregiving Itself
I had what I like to refer to as Ring Camera PTSD. For the last five nights my father was at home, the ring camera became a friend and enemy all at the same time.
It was a friend because it alerted me to when Dad was heading into the bathroom for what was usually an unnecessary trip, since he was now sporting a catheter. It was a constant battle and one I became weary of very quickly.
The other reason the ring camera became an enemy was because it signaled that Dad was again out of bed doing the same – trying to go to the bathroom.
The problem with this was two-fold. First, he kept Mom awake and a cranky Mom is never a good thing.
Second, it meant yet another catheter battle.
The last night he was home, he was up about every five minutes. We’d get him settled in bed and like a Bobo doll, he’d bounce right back up again.
Caregiving became traumatic, and honestly, I didn’t even recognize it right away. It was Mom who pointed it out a week or two after he’d been admitted to the hospital.
But the trauma continued.
No matter how many times I insisted that they keep the room phone away from my father, someone would always give it to me. Then, he’d either call me or my mother and beg, sometimes demand, to come home. Or, he’d threaten to leave, which wasn’t a possibility since they had a bed alarm on his bed and knew when he got up.
And let’s not forget the morning I got a phone call at 7:30 a.m. The nurse took forever to get to the point. In my head, she was taking a long time to get to the point – which I assumed was that Dad had died.
Truth was that he’d kicked her and another nurse while they tried to care for him, landing him in restraints…again.
And then there’s the most traumatic thing – the phone call. The call I got at 6:08 on November 30, 2024 when they did actually tell me Dad had died. I went from shock to dread so fast it would make your head spin.
I held the news nobody wanted to hear – Dad was gone. How was I going to tell Mom? How was I going to tell my kids? The drive home was one I probably shouldn’t have made because I was definitely somewhere else.
Moving Your Loved One to a Care Home
The only way the hospital would release my father was to locked-down memory care. They made this very clear.
Early in his journey at the hospital, it was supposed to just be rehabilitation due to the amount of time he’d spent in bed. He needed to get his legs back.
That quickly morphed into locked-down memory care, however, and the search was on.
I can’t say that I found this to be traumatic, but I know that other caregivers do.
I observed many caregivers in the Facebook dementia support group express extreme distress over both the decision and the placement.
I don’t think Dad knew what was going on. They wheeled him into his new room, which we’d set up with as many familiar things as we could, on a stretcher and helped him into his chair, which is now back in our living room.
He graciously thanked the two men who had transported him and when he heard that it was dinnertime a few minutes later, he grabbed his walker and shuffled out to eat. It made our transition easier because he seemed oblivious to it.
We snuck out while he was eating. The next day, I went back with more supplies and the nurse told me that after dinner, he went to sleep at 6 p.m. and slept until noon the next day. It made me feel good to know that he felt he could rest there.
But for many caregivers, this transition is not so smooth. I’ve read stories of loved ones who sat in the lobby of the care facility refusing to stay. Loved ones in those situations are asked to stay away for a couple of weeks to allow their loved one to adjust to their new environment.
I asked Dad’s facility about this and they said to play it by ear. If we’d left him alone for two weeks, we would never have seen him alive again – he died 12 days in.
But it is valuable for some, and it’s something to play by ear.
I equate it to sending your child off to a sleep-away camp for two weeks. You aren’t there to see what they’re eating, how well they’re sleeping, what activities they’re engaging in, or if they’re safe.
The fear is in losing control over your loved one’s care and not being sure if the care they’re getting now is as good as the care you gave.
Let me tell you this – it isn’t. Know that going in. Do your research and find the best possible care facility your loved one can afford but know that those facilities have ratios of caregiver to resident that are never going to be one-on-one and chances are good there are residents who require more care than your loved one does.
The Challenges of Caregiving Can Be a Source of Trauma
Caregiving comes with its own level of stress and anxiety. There is a constant unknown. How will your loved one’s disease progress? What stage are they in? How much time to they have left?
These concerns can lead to sleep deprivation, stress, anxiety, and a host of other problems.
Additionally, some caregivers feel guilty for a multitude of reasons. If their loved one falls, they feel the guilt – I should have done X differently or I should have known and done Y.
The truth is that you can’t see into a crystal ball to know what tomorrow, or even this afternoon will bring. You can take as many safety measures as you’d like, but I’ll warn you that while your loved one might have cognitive decline, it doesn’t mean that he or she isn’t capable of creative solutions to their perceived problems!
But it isn’t just the emotional traumas that caregiving can provide, there can be physical traumas as well.
For example, if your loved one is battling with mobility issues, you can easily harm your back trying to assist them.
In the process of helping, you could both go down, and both of you can be injured in the process.
Or maybe you try to help them and you fall or otherwise harm yourself.
The physical traumas can then lead to emotional traumas, especially if you find yourself unable to perform your usual caregiving duties. Trauma, and guilt!
PTSD
I know I talked about my ring camera PTSD a while ago, but there are other ways PTSD can sneak in.
Watching my father roam around our home at 2 a.m. that Sunday night/Monday morning caused me trauma that even the police officer who came a little later noticed.
He roamed, room to room, saying Hey guys, this is Wayne. I’m in the kitchen if you want to talk to me.
Or the worst…Barbara – I don’t know where I am, which he said as he was trying to find the door to the basement but was opening the garage and pantry doors instead.
Listening to him yell at me to cut this damned thing off brought back childhood traumas of dealing with his temper as well.
PTSD is fun like that – it rears up on you when you least expect it.
It’s also traumatic to watch medical professionals put your father in a hospital bed, then raise the head and feet of the bed so he can’t get out. All the while, he’s drawing every person on the hospital staff into his hallucinations, asking if they’re painters or playing some other role in his drama.
And the ultimate, get the hell out of here, which he said to me as I stood beside his hospital bed. As I left, he said that’s my daughter; she’s a great kid.
Social Isolation
Social isolation can impact both you and your loved one. If your loved one was social, as Dad could be, missing out on those social activities will have a negative impact.
Additionally, socialization helps your loved one feel less anxious and lonely, feelings that lead them to undesired behaviors or depression.
For you, you may not feel as if you have time for social activities and you withdraw. Perhaps you don’t even realize at first that you’re doing it. You’re so caught up in these new responsibilities that you don’t see what they’re doing to your life.
And that’s not feeling selfish either, by the way. You both need socialization. We’re communal by nature.
The Trauma of Financial Distress
Dementia can be financially draining. There are trips to the doctor, diagnostic tests, medications, and sometimes new equipment that are required as the journey progresses.
And we won’t even get into the cost of assisted living or memory care. For Dad, it was nearly 12K a month, but he also maxed out on the medical care he required. Still, it put my mother into an immediate panic. They had the money, but as part of her decline, she’s focused on financial matters, so it was a big deal to her. She immediately started the activities required to sell their condo and bank the money. She couldn’t see that by paying rent that equaled her mortgage payment, she wasn’t really money ahead, except that she was banking the money from selling. Once he passed, I pointed out that she didn’t need to move anymore, and we stayed.
So What Can You Do?
I catch crap for this all the time, and I hear caregivers write in pushback – not at me, but at the concept in general.
But, I’m gonna say it anyway.
You must find time to take care of yourself and step away for a little while.
You are not superhuman.
Part of the trauma comes from exhaustion and overwhelm.
Taking an hour for yourself a few times a week isn’t selfish, it’s a requirement.
How can you be a good caregiver if you’re so tired you can’t think and you’re feeling so overwhelmed that you don’t know what to do next?
You can’t, that’s how.
Self care is another necessary thing to add to your repertoire, and yes, self care can come during your times of respite.
Take a walk for ten minutes.
Smell the flowers.
Listen to music you enjoy.
Read a book.
Watch a favorite comedy.
Do something to relax your mind and refresh your spirit. If not for you, then for your loved one. If he or she could say it – and knew to say it – they would tell you to do it.
Seek support from either a support group or even a professional therapist. They can both help you navigate the myriad of feelings you’re experiencing. They can help you put some of the things you’re going through into perspective and help you find ways to navigate this difficult journey.
Another thing that might help you is to educate yourself, which you’re doing if you’re following people like me here on Substack. There are so many good writers out there who are all writing about this journey. We all have different things to say and journeys to share, but you also want to learn more about the disease you’re battling. Know what to expect and when to expect it.
And finally, be willing to accept help. There is no shame in saying yes to someone who wants to lend a hand. Many of your friends and family are wringing their hands, not knowing how to help, so they stay away – sometimes out of the guilt of not being able to help.
Let them in. Let Aunt Mary come and scrub your kitchen floor or change the bed sheets. Allow Cousin Diana to take your loved one out to lunch or sit with her while you go out to lunch.
Say yes to the help that’s offered. You do need it!
I know this episode today didn’t come with a lot of research. I tried to find some, and I couldn’t find anything in my usual sources.
So, I decided today’s episode would come from the heart and from experience and a little research.
I want to thank you from the bottom of my heart for being a paid subscriber! It means more to me than you can know! I hope the remainder of this day brings you peace, calm, and moments of joy.
Until next time…
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