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This is a transcript from episode #13 of the Let the Verse Flow Podcast.
Unfortunately, as a woman in my 50s, the "D" word I’m about to talk about is dementia. Yeah, it’s a downer, I know, but if it’s the "D" word you are facing, I have some thoughts I want to share to help you cope during this transitional time.
Perhaps your parents are aging, an older aunt has been diagnosed, or your partner’s parents are starting to fail cognitively. Life can change drastically as you’re thrust into the position of taking care of someone with dementia, arranging healthcare for them (that was nightmarish for me), and saying goodbye to a loved one who may not be able to interact with you in the same way they always have. You have to learn to say goodbye, and part of that may involve putting their belongings away, moving them out of their home (which in my case was my childhood home too), and moving on to a new phase in your life—one where they might not be in your life the same way they used to be.
This kicks up memories, brings on sadness, and evokes anger and frustration. Dementia can kick up all kinds of emotions, at the same exact time as you are being asked to adult with a capital "A." Today, we’ll explore dementia’s effects on our lives, especially as it relates to handling the memories, routines and belongings of a loved one who is transitioning. What will your transition be like? I hope to help.
Dealing with Dementia
If I read another article on how to handle dementia, how not to overreact, how to be gentle with myself, how to realize that this stage will pass. I may scream. I can sometimes melt into that mindset, but truthfully I’m in a different stage right now. After nearly two years of dealing with my mom’s dementia, I’m mad as hell, and I am so tired of adulting. With my rational mind, I know that the dementia articles hold some value, but I wish we could talk about how sad, hard, and miserable it is to see a loved one lose themselves. Any advice or encouragement I can give to you will have to be tempered with a big “if you can today.”
Some days you can’t see how things will ever work out. Some days you are exhausted and don’t want to hear someone ramble on about how this stage of life will have benefits. That does sound like me, but you know I do it because I want you to feel happier. I want to be happier, and I’m trying to see the brighter side if I can on that particular day. But some tasks are super hard.
After arranging for healthcare, feeling the anxiety of losing your relationship with someone and not feeling like you can do anything about it. After healthcare proxies, living wills, ER visits, and feelings like you will go into financial ruin to pay for a loved one’s care, after all that, you have to face losing them. Right now, I’m talking about "losing" our loved ones to dementia, but I know I’ll be losing my mom for good sometime soon.
The Effects of Dementia on Caregivers: My Experience
Let's explore ways to cope when we have to say goodbye to our life as we knew it when a loved one’s dementia changes our relationships to their very core. Perhaps it’s saying goodbye to them in stages like I am; over the years, small changes in my mom’s cognition, communication, and physical state have manifested. She has vascular dementia and Alzheimer’s, but her strokes are the leading contributor to her cognitive and physical changes. After the initial few strokes happened, I thought I could take care of my mom in my home (keeping her apartment and telling myself that she would return to it). I knew that wasn’t true, but in the early months, I told myself that because I didn’t want to add the stress of that reality to my day-to-day stressors.
She lived with me for eight months while I worked full-time and hired an aide to help her during the day. My mom experienced sundowning, where you get agitated in the evening, and for most of the night, she was up. So there was work during the day, work through the night, and then little sleep. Over time, her health worsened, and I couldn’t take care of her anymore; she was also miserable living with me because she didn’t have much sense of community or avenues for creative expression.
I decided to move her into an assisted living facility. She flourished with the care and the community, and our relationship returned to being mother and daughter. It has helped in many ways, but there are added stresses, like how to pay for this very expensive care. Even with my mom’s long-term care insurance, her healthcare bills are sky-high, and that causes me tons of stress as I manage all her affairs.
So, there’s so much happening here—losing her as a mom, watching her health deteriorate, not being able to communicate with her well, and financial stress. My mom lived within three blocks of me for decades, and now lives an hour's train ride away. But one of the hardest things to do was to give up her apartment, sort through her things, and move her out of my childhood home.
Moving Mom Out of Her Home and Into Assisted Living
This type of transition is common when dealing with a loved one’s dementia. You may have to transition your loved one in another way—move them into a nursing home/assisted living facility, take care of them in your house or a sibling’s house, or hire healthcare aides to take care of them in their own home. In all these scenarios, the challenges of “super adulting” and handling transition can try to take you down. Super adulting is what I call having to do emotionally charged and exhausting tasks (heavy stuff like making healthcare decisions, managing finances, and juggling work/life balance as a caregiver) all at the same time. I hope to offer some support as you handle these transitions.
While packing up and moving my mom’s things out of her apartment, I was lucky enough to have my daughter helping me. It was last June, and she was home from school. Somehow I was surprised when she offered to help me sort through, box up, and move my mom. I thought she’d want to spend those weeks relaxing, having just come home from college. But she said she would do it with me, and I was grateful because one of my daughter’s superpowers is that she isn’t overly emotional. I was going to be an emotional wreck, but she wasn’t. She was the rational one who got boxes, sorted junk from gems, and made decisions about how to move. I leaned on her during this time as we made trip after trip to the dumpster and sifted through my childhood things to figure out what was trash and what was treasure.
All the emotions kicked up in me as I looked over photos, toys, mementos, my mom’s artwork, her jazz collection, and her books. I could also smell her scent throughout the house, and I missed that so much. On the day I wrote this poem, the apartment had been cleared out, my daughter had helped move the last box, and I was in the apartment alone for the last time. My bedroom echoed, and there were no more signs of me, my mom, and our life in those rooms. It was haunting and sad. I wrote furiously that day as I cried. I felt desperate to remember what we had here in this small apartment. Would I remember the room layout, how it smelled, and how I used to stand at the window as a teenager and contemplate my life? I would have to create a container in my mind for all those memories, and I would be doing it as a full-fledged adult. It felt like childhood had really ended, and I was now an adult with a capital “A.” I didn’t feel like someone’s daughter at that moment.
792: The Memory Door
by Jill Hodge
My childhood home
Said goodbye today
Packed up, moving on, across a cold, dark way
Whittled down a lifetime of stuff
Carted essentials—dropped the extra, lost the fluff
Now I sit in a barren room
The echo is haunting, no daffodils in bloom
Have you felt this stillness?
Said goodbye to dust bunnies and bad poetry tucked in corners of a hallow room?
I have just now
Leaving all I’ve known
Has me hallowed out, like mortar from stone
But memories flood in and fill the open spaces
A trunk full of dolls, books and sneaker laces
I set them all free
Out in the open, I revisit what made us “we”
Reliving these memories brings tears for sure
On the other side of the memory door
Hands tremble round a key that turns one last time
Solitary, alone as I leave my childhood world behind
I mourn the time that’s passed and gone, will never again be
I mourn all the things that made us "you," then "I," and then “we”
I mourn my youth, truthful, unfettered unafraid and free
Exuberant times when life jumped off the page
Now just stories, half-truths stored away and diluted by age
Can I recast them?
Rewrite them with a rose-colored pen
Make a tapestry come to life, bound tight by golden thread
Muted hues, garden views and birds that lightly tread
For if I close my eyes, I hear the pop of vinyl
When discs ran in circles and hearts beat to a different drum
Marvin’s Mercy Mercy Me
Jackson 5 ABC
Stevie’s Songs in the Key of Life
Summer Disco Day and Night
Prince’s falsetto, regal delight
Our life had a soundtrack
Keeping time, when times were sweet
Sharing blessings, heavily steeped
Good times reap, sad times weep
Bundled and bound by life’s big beat
What comforts me now, what runs deep?
All the ways our love played out and on repeat
Jill Hodge
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There’s no singular view or pathway you walk when transitioning with a loved one who has dementia. There are many experiences, feelings, and states of mind that you’ll pass through, and the lack of stability can be unsettling and exhausting. At times, like when transitioning out of your childhood home, there can be a flood of visions and memories that accompany you while you sift through years of accumulated stuff. You held on to that postcard, those earrings, or that record because throwing it away would somehow feel like throwing away the person who cherished it. Now faced with sorting and sifting through a loved one's things, you realize you can’t keep it all. You have to make decisions. How do you comfort yourself during this troubling transition in life?
Coping with Dementia (Caregiver Tips)
Just about every “how to deal with dementia” article I’ve read talks about getting support—join a support group, get help with caregiving. This should be top of mind because it can be exhausting (emotionally and physically) to deal with a loved one’s dementia. You are allowed to fall apart—and you will.
You’ll need support, so right alongside caring for your loved one’s needs, you should be setting up a person or joining a group. You’re looking for the people who listen to you rant and rave. The people who don’t try to solve your problems but know that listening is what you need most.
These people bring you food or check in to let you know they are waiting in the wings. They don’t pretend to have all the answers, they are just there for you. If you’re like me, handling this transition will feel like riding a rollercoaster. I don’t like rollercoasters. I like smooth gliding simulator rides, so NO, I don’t want to visit the hospital at 3 a.m. NO, I don’t want to move my mom from her favorite place in the world (her NYC apartment) to my house and then to an assisted living facility. NO, I don’t want to go through all her belongings and pare things down as I move her out. I don’t want to take that ride. I didn’t purchase a ticket, but nonetheless, there I am.
We’ll need someone by our side who understands how hard this is, who knows how we feel about being robbed of the company of someone we love deeply. We'll need allies to get through it. Please start looking for them now.
Do you have at least one person to lend a hand and help you up? I had my daughter, my partner, a good friend, and my therapist. I needed four people, and each one served a different role. My daughter was called on when I needed to handle logistics and when I needed to hear her “what I love about grandma” stories. My partner helped with comfort, holding me when I was sad, listening, listening, and more listening and small gestures of kindness to take the load off my plate. His voice would soothe me as he told me how he understood my pain. My friend checked in with me (sometimes every day) to let me know she thought about me; she sent over food when I was about to crumble and told me I was brave and strong when I felt small and weak. My therapist held me together by helping me sort through what to focus on and what to let go of as new challenges came up. It took four people to help me during my transitions.
Do you notice that when I talk about it in hindsight, my list of these four people (and the kind things they did) reads like a gratitude list? I would not have had these grateful moments if I hadn’t endured my mom’s dementia. That’s the bright side of things peeking through, the aftereffects of going through these painful moments.
I think the most important help you will get isn’t about the facts of dementia but the emotional support you can get from family, friends, and mental health professionals.
There are plenty of resources with facts about dementia on the internet, most written by nonprofits or healthcare organizations. Here's a good guide on dementia. This guide helps family caregivers understand and provide Alzheimer’s and dementia care. I like it because it breaks down the stages of dementia.
My mom is in the late stage of dementia, but I found the guidance outlined in the article in each stage to be on target and helpful to consider. But I often think we may search for the facts as a coping mechanism when what we are really looking for is support. A friendly or familiar voice, a sense that we are cared for and that our challenges matter. I created my podcast (and this website) for that very reason. I wanted to make sure that you are supported by a person who understands your pain and wants to spread a touch of hope and purpose so you can learn and grow from these transitions.
I hope you know that you aren’t alone, that your thoughts and needs do matter, and that you will make it through, but it’s going to be challenging. No pep talk I can give you will take away the pain, but then again, I’m not offering a pep talk here; I’m offering a small inspirational pathway to at least acknowledge that you want to get past your struggles, grow from them, and move forward.
So, find or build a small but mighty support system. If you don’t have one already, reach out to a therapist and pay someone to help you process your feelings. This will be something you give to yourself, and giving to yourself is essential.
The Emotional Impact of Dementia
Next, feel however you feel, and don’t apologize for it. Cry, yell, and allow yourself to feel without judgment. Saying goodbye and going through transitions with our loved ones with dementia or illness kicks up feelings, and on top of that, now we don’t have that person to lean on, to get comfort from. We have to rewrite our comfort scenarios, rely on ourselves more and sit with shitty feelings.
We may put off some of these chores (like clearing out our loved one’s home), and while only you know when it’s the best time to handle this, don’t put it off as a way of avoiding it because you can’t really avoid the emotions you are having. I cleared out my mom’s house over three week’s time. I’d go after work for a few hours a couple of times a week. I only went when I felt emotionally able to handle it on that particular day. Some days I felt OK and relied on my daughter to guide me; some days, I stopped early because I was an emotional wreck. But I got it done. There’s a balance between getting it done and taking time off to regroup, engage in self-care and heal.
Ultimately moving my mom out of her apartment was an important step in my healing. I’ve kept the most important things from our life together, I remind myself that anything I couldn’t carry out physically is still carried in my heart. I am stronger emotionally than I was two years ago. That doesn’t mean my life is all roses and cream, but I’m more self-assured, more compassionate, more self-directed, and more artistic than I was two years ago. I’m more myself, and my mom would be proud of me. She would be proud to know I am taking away those gifts from this challenging time.
📚Journal Prompts for Times of Transition
I know some days you feel like adulting is going to take you down, especially as you help a loved one with health problems transition to the next stage of their life. Your journal can help you uncover what’s beneath the flood of emotions and challenges you are dealing with. It can help you uncover how you are changing and growing too. Here are some journal prompts to help you think about your personal growth during these transitional times in life:
Whether we are dealing with a loved one’s dementia or not, we all need some comfort and support to deal with transitional moments. I hope you find small ways to stay on the bright side of the beat. 🌞
Music: My thanks to all the musicians who make incredible music and have the courage to put it out into the world. All music for my podcast is sourced and licensed for use via Soundstripe.
Songs in this podcast episode:
Endless Sleep by Lost Ghosts; Winning Streak by JeesGuy; Echoes of the Mind by Shimmer; Pyaar Kee Seemaen by Cast of Characters
Related Episodes/Articles: Sitting with Shitty Feelings; The Loved Ones We Carry
LTVF Season One Music Playlist: Check out the songs that inspire me, and connect with artists from many genres who add to our collective, human soundtrack.
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