84 | Lessons Learned from 5 Years of Caregiving

Today, I’m sharing a personal update on my journey as a caregiver over the past five years. My mom was diagnosed with dementia a bit over five years ago, and these years have been filled with challenges, humor, and countless lessons. In this episode, I’ll offer insights into supporting aging loved ones, recognizing that every family dynamic is unique.

As a professional organizer and active member of the Institute for Challenging Disorganization, I’ve gained valuable knowledge about the intersection of clutter and aging. I’ll share practical tips on maintaining a compassionate approach to caregiving, plus key phrases and perspectives that have supported me in this role.

Listen now and join the conversation on how we can all contribute to a more compassionate approach to elder care. I hope this episode offers you valuable insights and support as you navigate your caregiving journey. 

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Transcript

Intro: Welcome to A Pleasant Solution, Embracing An Organized Life. I'm your host, certified life coach, professional organizer, and home life expert, Amelia Pleasant Kennedy and I help folks permanently eliminate clutter in their homes and lives. On this podcast will go beyond the basics of home organization to talk about why a clutter-free mindset is essential to an aligned and sustainable lifestyle. If you're someone with a to-do list, if you're managing a household and if you're caring for others, this podcast is for you. Let's dive in.

Amelia: Welcome to Episode 84, “Lessons Learned from 5 Years of Caregiving.” Hey y’all. I’ve been thinking about the best way to share a caregiving update for the last few weeks. I’ve spent a fair amount of time with my mom recently and each time I do, I recognize how fortunate we both are. My mom was diagnosed with dementia a bit over 5 years ago and saying that out loud seems a bit surreal. We survived the pandemic, and these last few years have been making the best of each moment day in and out. My mother has a great sense of humor, and that’s one element I can always rely upon when reality tries to make itself more present than I’d like.

So, in today’s episode first, I’ll share a few things to remember as your parents or close friends begin to slow down and show their aging. Then I’ll share a few of the key phrases I keep top of mind as a caregiver. I recognize that every family dynamic is different, and symptoms, illnesses, and abilities exhibit themselves differently. I want to make clear that I believe first and foremost that caregiving is a choice, not an obligation. I support both my inner wellbeing and that of my clients from that perspective. It’s a mindset I choose, and it’s one that gives me power and purpose. Those who choose not to assume the role of care partner often do so from a place of care for themselves and their immediate families, and I won’t ever judge you for this choice. The time commitment needed, as well as the physical, emotional, and logistical components needed for caregiving are not to be underestimated.

Again, I want to clarify that for this first segment, I’m speaking from my role as a professional organizer. As an active member of the Institute for Challenging Disorganization over these last four years, I’ve taken a number of continuing classes about the intersection of clutter and aging. They happen to be super relevant, no surprise. I find that it’s helpful – as someone who’s in her mid-forties – to be pushed to shift my perspective into one of a person who’s in their seventies, eighties, or nineties. I think this is often the missing element in care conversations. As the younger person in the dynamic, you may unconsciously have a bias towards youth. In the US, conversations around aging are often more private than public, and as a result, one place to start is to use the tools of curiosity and inquiry to think from and see from the perspectives of the elders in your life.

For example, sensory changes are common as we age. Touch and tactile responses to surfaces may not elicit the same internal responses as they did a few years or decades prior. Sensitivities to temperature, clothing, and water pressure may lead to discomfort or pain. Try to listen for clues knowing that your perception of these things may be different from theirs. Hearing, eyesight, and taste complement one another, and when one sense begins to deteriorate others may compensate. Changes to these senses often happen slowly and can be relatively “invisible.”

Our ability to hear impacts our comfort levels within our environment and can either support or upset our sense of proprioception, or where we are in space. Hearing changes or loss can lead to social withdrawal. Sounds may become garbled causing your loved one to misinterpret your words and intentions. Eyesight tends to decline or change as well, and if vision changes are not addressed, the brain tries its best to compensate for the missing visual information. These changes can often be subtle which is why it’s important to encourage regular exams and input from professionals. The clutter your family member or friend has accumulated may be a symptom of internal physical or mood-related changes, not just disorganization.

You may notice changes in mobility and stamina more readily than changes in processing time or cognition. I encourage you to watch your loved ones carefully. Pay attention to the accommodations they may be making as these are clues to how their lifestyle needs may be changing. For example, they may be navigating their home based on memory of where furniture is placed and where objects may be found rather than the keener vision of their youth. When they misplace an item (or anyone else disrupts the placement of objects), frustration could result. They also may be experiencing pain but are unsure of how to express it or solve for it. Folks don’t love to be seen as needing help and may be delaying requests for additional support for as long as possible.

I get it. As someone who’s eager to help, it’s hard to take into consideration what may be going on behind the scenes for an older adult if you yourself haven’t experienced it. It’s much easier to interpret it as them having a difficult mood or wanting things done for them when they “seem” perfectly capable. For example, their dexterity with opening mail, reading the fine print, navigating the bill pay system, and maintaining focus – any one of these elements may be an obstacle to staying on top of finances. Again, consider unconscious age bias. Be mindful of hopping to the conclusion that they are forgetful and consider a holistic view of their changing abilities.

The most kind and compassionate approach is to ask rather than tell. Yes, I want you to have hard conversations about belongings and care needs earlier than may seem needed. Yet, in these conversations, do your best to see things from both sides. Downsizing may be necessary in the future whether it’s for safety or simply more enjoyment and less space to care for. So, ask. Ask for their input. Ask if you can support them, and if so how. Don’t expect an immediate response or clear directive the first time. Hone your skills of reading between the lines, checking in with your capacity, and then asking again. There’s no right way, simply your best efforts (and theirs).

Before I transition to sharing from my own perspective, I want to share a few easy to implement tips. Give lots of time for activities and appointments. Slow your pace of being and try to enjoy that pace. Be sure to speak while facing them, instead of turned away to increase understanding. Give an extra second to allow them to process what’s being asked or said. Honor their routine and schedule events at their best time of day. Increase the amount of light in their spaces and explore different accommodations and technologies that may enhance your person’s day rather than expecting them to problem solve on their own. Practice adapting to them, rather than defaulting to expect them to adapt to you.

Alright. I hope I’ve offered a few helpful tidbits about supporting older adults. I’d love to switch to sharing a few phrases or perspectives to support you, the giver of care. The process of supporting another individual is only possible if you take radical care of yourself. You’re more organized than you think. Regularly assess your own energy levels, personal boundaries and filters, and step back from your role when your energy or mood isn’t at your defined minimum standard for delivering care. I’m confident that my mother would always want me to care for myself or my family first and foremost. There’s no need for guilt when you deeply believe that you’re always making the right choice given the information you have at that moment. I return to the question, “What do I want?” over and over to give me the most honest and true answer when a choice of where to put my attention surfaces.

So, the first nugget I want to offer is, “The present moment is the most important one.” Joy or pain from past family dynamics isn’t relevant in the present moment, as we’re creating the present together, here and now. The present moment is the most important one. I can adjust my perspective glasses and let my mother’s mood impact how I’m feeling, or I can decide that her mood has nothing to do with me. I can aim to shift her mood through a story, an activity, or a redirection, or I can be an empathetic witness to her current reality. Either way, I can understand that my mother sees the present moment just a little differently than I do, and that’s okay. Neither of us are sure what tomorrow will bring, so the present moment is the most important one.

Building on that nugget, I’d invite you to consider, “What’s the best possible day look like for this season of life my loved one is in?” There may be illness, chronic pain, anxiety, or depression present. Mobility may be limited. Clutter may be overwhelmingly present. Given the facts of life today, “what’s the best possible day look like?” For my mother and I that may mean going out to eat at the diner or getting a hamburger. It may mean walking several laps around her building having the same conversation over and over. It may mean helping her put together the steps to brush her teeth or to wash her hands. If I’m able to write a caregiving update in a year or two, these small things may no longer be relevant options. Her definition of the best possible day may have changed. It will have changed – with dementia, that’s to be expected. It’s a beautiful question for you to reflect on in your own life, as well. It brings gratitude back to the surface of our hearts.

The last nugget I’ll offer in this episode is to reflect on what you’re learning through your interactions with the elders in your life. Perhaps you’re learning what true boundaries or energy management looks like. Perhaps you’re learning how saying what you mean is more effective than all the fluff. You may be learning why decluttering each step of the way is important. You may be learning how not to take your youth for granted. Conversely, you may be learning how to express what you want for your later years because of the caregiving experience. It’s all relevant, if you take the time to notice.

I know I won’t regret my choice to care for my mother. Yes, it’s taken resources, logistics, time, and emotional energy. In turn, it’s given this stage of my life another layer of meaning. These last five years have probably been easier than the next five will be, yet I try my best to be honest and compassionate with myself each step of the way. Caring and loving is hard, and it’s just one element of embracing an organized life. Talk to y’all soon.

Outro: If you’ve enjoyed today’s podcast and want to stay up to date on what’s happening each month in A Pleasant Solution, I invite you to join my email community. I share relatable stories, post upcoming events, and offer a weekly mini solution. Click on the resource in the show notes or visit apleasantsolution.com to learn more.