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Journey Through Care: The Five Stages of Caregiving | 007
Episode 723rd October 2024 • The Sharegiving Secret: How to Survive Family Caregiving • Deborah Greenhut, PH.D.
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Diving into the stages of caregiving, I realize it’s a journey full of unexpected twists and deep emotions, not just a checklist to be managed. Whether it’s starting the conversation early with loved ones about potential needs or shouldering the full weight of care responsibilities, each stage demands a different part of you. The emotional load can be overwhelming, especially when it shifts from professional detachment to intimate, familial involvement. It’s a human response to feel worn by the efforts to balance personal grief with the demands of caregiving. Embracing these stages isn’t about getting stuck in the roles we play but learning to navigate them with grace, preparing for the grief that may come, and ensuring we don’t lose ourselves to the emotional undertow. This journey reshaped not only how I view caregiving but also how I see resilience and the power of planning ahead.

About Me:

I have cared for many family members across the life span, experiencing the joys and challenges of child-rearing, the poignance of caring for parents, friends, and elder partners. I realized that I could not handle the stress of family caregiving 24/7/365. It was time for a new approach to caring. My health and happiness were slipping away. This is how Think to Thrive for Caregivers evolved. Let your mind meet your heart so you don’t lose track of your life.

Connect with Me:

https://www.deborahgreenhut.com/

https://www.linkedin.com/in/deborahgreenhut01/

Find my books here

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Transcripts

Deborah Greenhut:

Hello. In today's episode, I want to speak with you about stages of caregiving. You know, outsiders can look at caregiving as a steady, stable undertaking that people can do on autopilot. Experienced caregivers, though, are going to tell you there's a lot more to it. It's true that professional caregivers may deal with more life or death situations than family caregivers do, but they aren't obligated to love their patients. Family Caregivers often deal with crises and unfamiliar events layered with the emotional complications of love, as in any relationship. We can say that there are stages in caregiving. The ending stage of caregiving, to cut to the chase, is often very unlike the beginning, your love may be exhausted and there is no likely next patient to sustain your role so you can move on. A grief process may begin at the ending stage, and you probably didn't have any special training or resources to help you cope. Even professionals need to stop and honor that stage of grief they feel for long term patients, especially those who faced particularly challenging circumstances, with courage and grace. My own parents were medical professionals in war and peace, but I observed even as a child that these experiences did not prepare them for the emotional load of caring for their own parents, their professional distance for illness just collapsed under the weight of their feelings and their desperation in trying to help their loved ones. This is a human response, yet they were frustrated by their inability to assert their professional detachment from these losses, letting go of caregiving and grief were long and difficult stages for them. We can read Elizabeth Kubler Ross's stages of grief and learn to recognize where we are, but living through them as caregivers can be a lot more difficult than measuring and setting boundaries for them, many websites provide generic lists of stages of caregiving, and these are a gentle frame of reference for the experience. It's useful, but we may need to say more typically, we'll hear there are about five. As a playwright of difficult subjects, I'll use the theatrical terms to describe these stages.

Deborah Greenhut:

Stage one, we could call waiting in the wings, if you're dealing with the possibility in a rational way. In this stage, you've realized that you may have to provide care for someone else. So you're possibly gathering information about wills, medical conditions, insurance and preferred treatments, so you'll be ready when your family member needs you. It's a little bit like learning your lines as the understudy. Woe be to you if you didn't learn your lines

Deborah Greenhut:

stage two, we could describe as understudying the lead. Ideally, you transition to a process of assuming responsibilities for your loved one. So you learn it, and then you try to do it. It may not be easy, but easing into it can help you assess what you're in for and start to build routines that serve both of you, you and your parents, so you can predict what other help you're going to need when you start to do it yourself, when you become the lead

Deborah Greenhut:

at stage three, you are the leading actor as a caregiver. Here's where you might be taking over all, or most of the responsibility for your loved one. And it's where the stress really starts to kick in.

Deborah Greenhut:

In stage four, you might be transitioning to the finale when the play is over. This might be the down slope of caregiving for you, where you can begin to see an end. A child might be leaving the nest, if you're a parent, or an illness might have overtaken an elder who's approaching either the end of life or the need for round the clock nursing care or hospice.

Deborah Greenhut:

Stage Five is the bowing out. This is the time where the caregiver will process all that has happened and try to recover or reinvent him or herself. If all goes well, the caregiver will regain or acquire a quality of life, or perhaps the cycle will begin again with a new family member, as we see happening more and more,

Deborah Greenhut:

This list is a somewhat idealized list of stages, though many people find themselves, as I did, jumping in at about stage Three, I had made furtive attempts to help my parents transition to becoming dependent on other people, but they held out until they were seriously compromised. The arrangements we should have made in stages one and two never got done. So in my first and naive weeks of the experience of caregiving, my first. Stage compromised my heroic impulse to go to drastic length to save my father from broken heart syndrome when my mother died unexpectedly. Spoiler alert, I learned that I wasn't super woman. My advice if you think you're entering stage one with a loved one start having those conversations and making those plans. Now, when people become ill or disabled, they may find it difficult to think and plan rationally, and fear of having their rights and wishes disrespected may cause them to be less cooperative than they might be when they're healthy and rational. Help your loved ones Think it through now to avoid the emotional snags later, is your time valuable enough to conserve it by planning ahead? The fable of the grasshopper and the ant might help to explain caregiver burnout pretty well. If we don't store up food for the winter, we will starve. If potential caregivers fail to store supplies, goodwill and solutions, they too will burn out from those shortages.

Deborah Greenhut:

Now, if you haven't done caregiving before, it might seem like a giant, shapeless amoeba full of tasks when you confront it for the first time, whether you're a new parent who has never bathed a baby or the adult child of an aging parent who needs help with personal hygiene, becoming a caregiver means stepping into the unknown with some degree of uncertainty about whether the usual tools will even work. Probably your life before the caregiving emergency had some degree of predictability, and you likely had some system, however rickety it was that worked much of the time. You likely had priorities and dreams of your own. Perhaps you were even driven by them. But as you step into caregiving, all bets might be off. You may have heard that caregiving is difficult, but discovering it in real life is often a ruder surprise. Here's something to think about, whether we're caregivers or not. We each get 24 hours every day, no more, and we must make decisions about how to fill them or not. We can let the world around us take over these hours until we're overwhelmed and unable to act. I can tell you firsthand that burnout is a terrible place to climb out of. Some caregivers don't make it. There's nothing heroic about trying to do everything yourself. You may end up being your own kryptonite if you're not careful, if you habitually weaken yourself this way, you won't be around to be the caregiver You promised to be. It's not unusual for caregivers to become progressively more disabled than the people they care for. For your own sake, some part of each 24 hour day must include personal care, rest and relief from the burden. People cannot solo on this mission. If you think you can, please check your cape for holes. Letting other people's demands run your day is one way to surrender your priorities at the other end of behavior is scheduling every minute down to the last second and becoming frustrated that it's impossible to keep up because of the unexpected disruptions, changes in plans and missing people. If you don't leave some unscheduled time in your schedule, you won't be able to handle the incoming surprises and the schedule is going to become meaningless.

Deborah Greenhut:

I bet you've noticed that some professional caregivers offices are more efficient than others in terms of your wait time. One of their secrets is not scheduling every minute. Try not to confuse busyness with productivity or effectiveness. Everything you don't schedule will cost you time. If you plan for emergencies, they won't set you back as far and please note your self care or your own doctor's appointment should not be your emergencies. In the first case, you could become a doormat for everyone else's expectations, if you let everyone just run over you, and in the second case, you might become the tyrant everyone wants to avoid. Remember Carezilla And you're not still able to motivate anyone to help you when you become that angry and upset, if you're new to caregiving, there may be a lot of trial and error involved in developing a flexible schedule and boundaries to defend it, and there can be a learning curve. When we start out, the demand to be a superhero can press hard on your conscience or activate your thirst for competition, for. These behaviors are like those we see in any workplace, and time management is your best weapon against the stress that comes from them not being able to meet demands, whether they're imposed by others or internal to you. Now, your loved one may not be happy about the new arrangement. Your previous ways of communicating may not help in this brave new world, and a new relationship needs to be cultivated, but neither one of you has to lose the relationship. This is not the time to settle old scores. You may even be asked to overlook, if not forgive, the unforgivable.

Deborah Greenhut:

Communicating is but one challenge among many. For many people, these struggles stimulate creativity and new solutions are discovered beyond the firestorm at the beginning of caregiving, that storming, forming and norming process that most teams go through. You cannot plan for everything, but you can take a serious look at the arc of the strategies you're going to face and figure out what you will need and what you can let go of. The most important thing to consider is how you will share the load, what you will do by yourself, and what you will delegate to other people. People do like to be helpful, and it matters how you invite them to share. It's not what you say, but how you say it. It's a lot to sort out, isn't it? If you're ready for some help with that, please check the show notes for this podcast, or visit my website for some free resources to help you figure out what the questions are. Please look for my survival guide for family caregivers and the pamphlet 52 non negotiables for caregivers to give yourself an overview. Until next time, please keep sharing the share giving secret. We're all going to need it before we leave this world. Thank you and have a great week.

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