There are so many families managing illnesses of loved ones every day. From temporary needs to long term, both physical and mental, many people become the primary caregiver of their spouse, parent, child and more during illnesses and diseases where healing happens at home. The role of the caregiver is a lonely, isolating, exhausting, strenuous and stressful labor of love that is also frustrating and overwhelming. There are plenty of tears, moments of laughter, and prayers of hope, every day. Then there are the moments of deep breakdowns and heartbreak in the shower covered by the sound of the water and closed door because you have to be the strong one but inside you simply don’t know if you can do it much longer or what the future will look like.
Taking on the care for a loved one, making the hard decisions and carrying on with daily life is something no one is ever prepared to do. Even at first you think you are, trust me you’re not. The amount of energy alone is underestimated. I certainly wasn’t prepared for it in the least and thought it wouldn’t be that big a deal and I could push through it. There were a lot of things I didn’t know would be expected or needed or what it would do to my own health and well-being along the way.
It is always the right thing do to and yet it is one of the toughest jobs there is.
What caregiving looks like vs. reality
On the surface, many make it look easy. They look like angels, heroes and magicians. The person they are caring for is well-taken care of and is in the best of hands. There is love, positivity, encouragement, chicken soup and magazines. You can feel the caring and devotion being poured into this person in need. It is beautiful and humbling.
Honestly, looking at some of these situations you would never know anything was stressful or overwhelming to these caregivers. This is the stuff of cards and well-wishing that makes it seem it is all done with ease and no one ever gets short tempered from being tired. It is what you want if you are in need of care. That feeling of trust, love and dependence on another that you can focus entirely on healing and recovery because someone has you taken care of.
Under it all though I promise you is exhaustion, stress, worry, concern, sleepless nights and lots of coffee. The late nights, early mornings, prepping for the next day, middle of the night needs, medication to keep straight, assistance dressing, bathing and using the bathroom. Even if you do nurse work as a full time job, it is different when it is your person, your loved one. It is your home, this is your spouse, child, family member who you are used to seeing active. There is a new level of need that is different than the needs we have when we are well. It is smelly, raw and challenging. It is the stuff you need to hold back from gagging on when you uncover the bandages and need to clean the wounds.
There is no break between regular life and caregiving. Along the way they get blended to the point you can no longer tell one from the other as you move from task to task, each pulling on you for their own needs. You constantly move. The quiet times are spend hand holding, talking softly, soothing and comforting, watching them sleep hoping they are comforted.
Even if there is other help you are still the person. You enjoy the brief reprieves you get through the support of others but you are always still the one worrying about your loved one. I even found myself hurrying to get back from breaks so I didn’t overextend the help provided out of guilt. It is challenging to relax and release for your own sanity and self-care when you are someone’s caregiver in these situations. Everyone will tell you not to let yourself go without caring for yourself but it is like being in a storm where you cannot get the shelter door open to get inside it. So instead you take cover under trees and where you can get just a slight break from the wind and rain in hopes it passes soon.
It is not as easy as it looks and there are a lot of held back frustrating things you wish you could say, scream, punch and even cry over. But you don’t and most of the time you cannot because that would disrupt the care you need to give that person. You have to be their strength and grace in these times putting aside your own worry, fear and frustration. They can get frustrated but you have to be that balance for them, inching them back to the positive thinking it will all be alright.
Caregivers know thoughts and words impact health. Healing requires lots of positivity and optimism. Our minds and bodies are so intertwined that not having positive energy around you can actually make your health worse. They are the ones telling their loved ones to focus on healing, giving them encouragement and being the smile to help them. We do deeply want these things too. For our loved one to feel better, recover, resume normal life, be active again. So, we often hold back our own fear, worry, frustration and concern and instead say encouraging things filled with love.
What is caregiver burnout?
It doesn’t matter if care needs are extensive or recovery takes a long time, all caregivers can encounter burnout. It is a risk inherent in the course of caring for another who is enduring an illness, disease, long recovery or life long disability.
The caregiver burnout occurs when there is not enough support for breaks and you forego self-care to the point you do literally forget yourself. Nutrition, exercise, sleep, sunlight, hydration all suffer because your care is being poured entirely into someone else’s needs. It feels selfish to care for yourself sometimes too.
When burnout stage is reached you have a tired in your bones that doesn’t go away. Your mood and energy are depleted. You feel like you’re doing your best but it’s not enough anymore. The stress of the situation is overwhelming and you even feel hopeless.
One of the primary reasons this occurs is lack of support. It truly is in these times you find out how strong your network is. Everyone has busy lives and I get that. A text sometimes feels like a chore to respond to because you’re busy caring for someone. It can be assumed then you’re not wanting help or have it all under control so they leave you alone. The opposite is true of course and you’re not intending to be rude to the person’s text. It is an unfortunate miscommunication that occurs in our world. People think if you don’t ask for help or respond you don’t need them.
Many families don’t have a large community of friends and family to help in these situation. Often when the illness or recovery is long even those you were relying on inch back into their own lives after a while. It is understandable and I hold no grudge. It does however mean you lack the network you can rely on to run errands, get a break or even just have someone to talk to about what is happening.
Professional services including home health care, are wonderful. They are however expensive and once those benefits are exhausted care does revert back to the caregiver.
Unless you’ve been through a situation like this it is difficult to understand the loneliness and isolation the caregiver can feel.
Natural Support for Caregivers
Having been through this with my own husband’s heart surgery recovery, I can say I have felt it all. The group texts, child care coverage help, lack of breaks, tears, laughter and more. Help will come from surprising places and you’ll be ever grateful for it. Help will also not come and you have to be ready for that.
I cannot say I did it all right but I definitely learned from the experience. Here are some things I found to get through it and keep myself healthy and mentally well as much as possible.
Use downtime while they’re sleeping to take care of yourself. Take a nap, walk, shower, get food, read, pray. Whatever you need do it during these times.
Forget having things perfect. The house is going to get dusty and the plants will lack water. It’s ok. Prioritize what’s really important and recognize the accomplishment and progress there. The rest can be taken care of later.
Hire help. If you can afford it get help. Delegate out yardwork, housework, child care wherever you can. Get reliable services you can count on and that have a good reputation. Check references.
Reach out. This is hard but don’t be so proud you don’t ask for help. Even if none comes, make the effort to ask. I promise sooner or later someone will help you in some way, keep asking.
Meal prep. Your person may have special diet needs but please know you do too during this time. Plan not only their meals but yours too. Freezer meals are a wonderfully practical option to ensure there is a hot meal ready when you can eat.
Grocery delivery and pick-up services. Leverage whichever is available in your area. It is worth the fee. Fill your cart with veggies, fruits and healthy foods that will fill you nutritionally.
Take a walk. When things get heavy or really stressful, it is ok to step away even just for a few minutes to collect yourself and release the stress.
Make lists. Keep lists. This was by far the biggest help to me not only in remembering what I needed to do but when I had help I could look at these lists and delegate some things. Grocery lists, chores, care needs, medication times and types, pharmacy needs, anything at all you need to remember, write it down.
Set automatic features. This is great for bills and recurring things that have the option for automatic processing. You can always remove it later but it sure beats realizing you forgot to pay the water bill at 3AM.
Focus on one thing at a time. If it is your job, your loved one, preparing a meal, taking a shower, give it 100% of your attention. This is a great stress management tool.
Breathe deep. Mindfully breathing especially when we feel stress will not only lower our blood pressure but reset our mind. Use the 4-3-2-1 breathing method as much as possible in your day and before bed.
Use a network community app. I used Caring Bridge (caringbridge.org). This allowed a central place to post updates on progress, ask for help, share photos, get well wishes and questions and eliminated incessant texts and group texts. It really helped with ensuring no one was left out of communications and centralizing information. You can set it up too where you can ask for specific times for help, meals coverage, childcare and errand support and people can volunteer through the app. It is completely free and easy to setup.
Most importantly, is you will hear a lot of people tell you to not forget to take care of yourself. These are great intentions but please realize you will be under incredible stress in this journey. Yes you need to take care of yourself. Yes you need food, water, exercise, sleep, sunlight and down time.
When someone said this to me, I always thanked them and then asked if they would help so I could do those things for myself. Don’t be afraid to ask.
Your schedule and time won’t be your own so have grace with yourself. It’s ok to skip some workouts. Take the time when you get it but don’t make it punishing on yourself. Use these opportunities for releasing stress, resting, gentle movement of your body and nutritious refueling for your body, mind and soul.
Natural health care support
Natural health care can not only help your loved one but you too. These are incredible services that focus on mind-body-spirit health and help you define a protocol to support you during stress and health needs. They are also usually very affordable.
To work with me, please schedule your consultation at dragonspitapothecary.com/book-online