Jump start your mojo (for caregivers)

I work with sick kids, like, really sick kids. Their health and developmental issues flow into every aspect of their lives from something as seemingly simple as eating or sleeping to socializing and even just meeting milestones or being able to function on a daily basis.

They are in and out of hospitals and have challenges thrown at them from every angle every day. I personally know of babies that have had 6 surgeries before their first birthday. Could you imagine having a surgery approximately every 3 months of your entire life? It’s a life few can imagine.

There is a certain kind of stress that comes along with being a nurse or caregiver of any kind to children like this. Parents, especially, have to put their own lives and health on hold just to keep their little ones afloat let alone thriving.

We’ve all been overwhelmed. Peds physicians, NP’s, social workers, nurses, etc have all had days that have been incredibly overwhelming.

Maybe you are one of them? A parent of a child with special needs or caregiver to anyone really. Maybe you struggle with your own health issues, mental or physical.

There are days when we have to just put one foot in front of the other and try not to think too far ahead or too deeply about it all but instead just get through it.

However, sometimes those days turn into weeks and then months where you’re just trying to get through it all.

If you’re there you know what I mean. The things you once thought were fun don’t excite you anymore. Socializing feels like work. You haven’t exercised or done anything beneficial for your own health for weeks. You’re tired all the time or just feel like you’re running on fumes. You’re own health may be suffering. You’re on edge or maybe just apathetic.

If that’s the case, I have some tips for you. I’ve been there myself and can relate. I can only share with you what works for me as I’m not a psychiatrist or counselor and don’t know your personal situation. But maybe something will help. So here goes.

I can’t stress this enough. If you have trouble sleeping due to anxiety or other reasons it is time to address them. If it takes you forever to fall asleep or you wake up multiple times during the night it is imperative you get a handle on this before you end up with a full blown sleeping disorder. Lack of sleep might be due to stress, hormones, a sleep disorder, shift work (or having to get up many times to care for your loved one), physical pain, restless leg syndrome or many other reasons. I doubt that your family doctor is going to have the time to help you figure it out. They might prescribe a sleeping pill that may or may not help for a while. It is time to examine your lifestyle and investigate what factors are keeping you from sleeping peacefully for the hours that you need. A psychologist might help if you can’t figure it out for yourself. I’ll try to make a post on this some time because I’ve struggled with it a lot myself and have been on different meds (to help me fall and stay asleep and some to help me stay awake), have had sleep studies, etc to help me with my own sleep issues and I’d be happy to share what I’ve learned if it helps someone.

In the meantime, think about how much sleep you need and what’s preventing you from getting it then work on those areas as diligently as you can. How can you expect yourself to function let alone help anyone else if you’re sleep deprived?

In nursing school they teach us not to give “false hope.” It’s not healthy or beneficial to tell parents their paralyzed son or daughter may one day walk again, for example (and in some cases we need to be totally realistic such with this example). But not giving false hope never jived with me. I mean, what is “false” hope, really? Hope is hope. I totally understand the concept but happen to believe that hope is a beautiful thing.

Having a child born with physical or mental issues seems so unfair. These are innocent babies who deserve the whole world that we are talking about.

We have to have faith and hope in something and that there are good reasons that we cannot understand for these things to be happening. To see a child (or anyone) suffer and struggle almost daily would just be too much to handle if it were all for no good reason.

I don’t even like it when physicians give a life expectancy to kids. Unless the child is actively going downhill and nothing can save them, it is ridiculous to say that a child with any given disease will probably live for only so long.

Case in point: When I had my son at 29 weeks gestation 33 years ago, I recall being told that 25 weeks gestation or less was, at that time, considered to be a non-viable fetus. When he was born they intubated him to save him. Luckily for us he was large for gestational age and had no lasting complications. Fast forward 30 years and I was taking care of a baby that was born at 24 weeks and weighed one pound. She has health issues today but has many good days too. She has a family she loves who love her, enjoys playing and interacting with people and is very much ALIVE.

I had another peds patient recently who was given a life expectancy of 30 years old. I told the parents not to dwell on it too much because anything can happen in 30 years. I told them the story I just told you. If the little baby girl I was taking care of was born 30 years ago, they would have allowed her to die naturally rather than try to save her. None of us really know how many days or years we have left. What doctors can give us is a best guess based on how long people have lived with certain conditions IN THE PAST.

Where do we draw the line on what is true hope or false hope? What is good hope vs bad hope? It’s ridiculous to me. Everyone has a different belief system and I, for one, will never shatter someone’s hope no matter if I personally believe it or not. We are all entitled to believe what we believe. Furthermore, I’ve seen miracles happen on so many occasions. Real miracles. Cases where people outlived their life expectancies by years and years. Cases where parents were told their child wouldn’t survive without a surgery who not only survived but healed. Cases where babies had very little eye sight developed sight.

So have hope. Live for hope. Spread hope. Don’t live a life of depression and anxiety waiting for the day everything falls apart. Instead be grateful already for the wonderful things to come. And if the worst should happen, as we know it sometimes does, know in your heart you never gave up and lived every day to the fullest, all the time believing in your child and yourself and the doctors and scientists and God, if you believe. Because feeling hopeless is the worst feeling in the world and no one deserves to feel that way.

Even hospice patients can have hope for as many good days as possible, pain and stress relief and a pain free death.

No one can do it alone. I mean NO ONE. We can’t live this life alone. We would have literally died if left alone when we were born. We all needed love and someone to teach us from the very beginning. We simply need each other. That’s why we have every kind of profession imaginable. Each one of us has special gifts and talents. We’re given those to help each other. There is no shame in receiving any kind of help you need. Whether it is a babysitter, house cleaner, someone to vent to, a personal trainer, someone to help you manage your finances, a psychologist, physician, coach of any kind, motivational speaker, you name it.

Being brave, strong or so independent that you deny help when it’s offered to you is actually quite foolish.

I used to tell my hospice patients who were very stoic or had an ego to allow others to help them because the helpers needed something to do. People need to feel they are contributing. This allowed my hospice patients to let their ego relax and not feel threatened by any help they received. But I also believe it is true.

If someone offers to help you, accept it. Be grateful you have them in your life. If someone says they want to help but don’t know how then tell them how! Let them bring you a meal, cut your grass, babysit for an hour so you can take a long hot bath or exercise or just come over to have a cup of tea! If no one offers readily then seek help on your own if you need it. As I mentioned above there is a profession in just about any area of your life that you need help with that can help you.

Remember to take care of yourself too. I know self-care is really popular to talk about right now but I think it’s for a reason. Life can be really stressful and hectic. Lots of things are always happening at once. For many reasons life can get really complicated. People are starting to realize that there is no shame in taking care of yourself but it’s actually necessary. It’s ok to say no for your own sanity. It’s ok to ask for help or have a mental health day.

I don’t think this is a trend. We are not meant to pay bills then die. I think people are starting to open their eyes and realize that how we speak to and treat ourselves is significant. If we are kind to ourselves and love ourselves that love flows out into the world. If we’re always thinking and feeling the worst we project that out also. We all deserve to be happy.

Surround yourself with positive people. Be a positive person. Think about how you want to feel and live your life then cultivate your life so that only the things that support your goals are in it. Don’t let anyone else drag you down.

I hope this helped someone. Please give me a like and follow if any part of this was in any way beneficial to you.

Self-Care Sunday: Simplify

FYI: There’s a list of ideas to simplify at the end if you want to skip reading.

Today’s self-care has to do with simplifying. The less stuff you have the less you have to take care of. That’s a big part of simplifying yet there’s a lot more to it than that.

We will be moving this summer so have been trying to declutter our home here and there. I’ve thrown away quite a few large garbage bags full of stuff and have donated about the same amount.

We now have a box in a spare room that we use as our designated donation box. I love having it and know I’ll always have some form of this from now on.

I place anything I think I don’t need or no longer want in it. It stays there for a while (until it’s full) then I go through it once more. If there’s something in it that I find I want to hang onto, it’s no big deal. I know I can take it out or keep it for the next round, if I’m still unsure. Honestly, I haven’t had to do that yet, but knowing it’s an option is reassuring that I won’t miss something.

Although I love Maria Kondo’s methods of tidying, I do not recommend making a full house sweep. We did that when we moved across the country and truly did regret getting rid of items we had to buy again. When you try to go too quickly the line gets blurred between what you want and don’t, at least for us. It was difficult to even remember what we got rid of or didn’t and found ourselves searching in boxes at the new place for things we actually did get rid of. In my opinion, having tried that approach, it’s better to just make this an ongoing project.

Simplifying and living life with intention are both ongoing. You start in one area of your life, like decluttering your home, for example (which is actually the easiest, as daunting as it may seem), then move on to, perhaps, living greener and maybe working on certain personal goals you have for your health, your career or what you want to put out into the world and it just grows from there.

You become gravitated to certain books, projects and even people that all seem to help you in some way until one day you find yourself living the life you imagined.

Happiness is not about how much you have, your status, title or who you know. It isn’t about anything most of society think it is and continue to strive to obtain.

It has nothing to do with materialism, money, popularity or good looks despite what social media puts out every day.

Happiness comes from the ongoing journey of cultivating your life: bringing only things and people in who add to your life on a deeper level and being willing to let the rest fall away.

When our inbox, home, work and personal life are cluttered with so much stuff, tasks and people to tend to, it doesn’t leave any time for self-care, reflection or to even just enjoy living in the moment.

Don’t be afraid to let things go that no longer serve you. When you have less you truly do have so much more because you have time to focus on what really matters. You stop feeling like a chicken with its head cut off. You stop running around doing tasks and then wondering what you accomplished at the end of the day. You have time to breathe and really enjoy living life. It’s quite a life-transformation. I’m on this journey now and have been really changing a lot in so many ways that have been beneficial. I just enjoy life more lately.

I’ve created the list below to inspire you to try doing one thing each day to simplify your life, then see if any changes take place mentally or even physically, as our body stores tension and stress in many different ways.

The worse thing that can happen is that you’re a little more organized!

Obviously, this is just a platform to jump from. There are tons of others ideas I’m sure you’ll come up with on your own once you get going!

Let me know what you think! Do you already incorporate a lot of these ideas?

May you be happy and well.

 

 

Preventing caregiver burnout

Make no mistake, moms and dads are the most under-appreciated, hardest working caregivers out there!

Spouses are caregivers as well! A caregiver can even be a child.

When you provide assistance to someone who just can’t do it for themselves, whether it is temporary or on a permanent basis, you are giving care to that person.

Care-giving brings on a kind of mental (and sometimes physical) stress that is often overlooked until the symptoms are unbearable.

I think it’s because when we love someone we’re just “supposed” to automatically do whatever is needed without question and no matter what cost it is to our own well-being.

It’s just expected.

That’s why caregiver burnout happens.

We have got to learn to have balance in our lives. I realize that sometimes things truly seem like they are all up to one person to do but oftentimes, upon closer examination, there are other people who can help alleviate some of the burden of care giving.

And yes, it is a burden, which seems to be a taboo word. A burden is a weight, a heavy load, a lot to handle. If care giving on a regular basis isn’t a burden, I don’t know what is. I’m not saying we don’t love the person or would choose another life. I’m just saying the actual daily tasks of care giving is a burden. Step one for preventing burnout is recognizing that fact.

To clarify, I wouldn’t tell anyone they themselves are a burden because people who need help are not a burden. It’s the situation that is a burden. The mental or physical ailment is the burden. It’s a lot for that person to have to deal with as well as the ones who care for them. Just as we would want someone to care for us if we had a disability of some kind, we should care for others. But no one person should have to bear all the weight alone.

When you have healthy kids it’s a lot less of a burden because as they grow they learn to do things for themselves which takes the load off year by year. It’s a lot more natural. It’s fun to watch their progress day by day and year by year. Each stage of their lives are enjoyable in different ways.

Same with spouses too. As long as the loads are equal it’s totally manageable.

But in either case, even caregiving for a spouse or family can be really difficult if there’s only one person doing it and they also have to work. Single parents are some of the hardest working people I know.

As a matter of fact, if you know a single parent, I challenge you to do one thing for them within the next two weeks. It could be bringing them a meal, cleaning up their yard or even just bringing in the garbage cans on garbage day. Believe me, any help you can do will be appreciated because they have too much on their plate. Put it in your calendar to find a way to help them within the next two weeks!

Here are some ways to reduce or prevent caregiver burnout. Some you may have thought of while others may be new ideas.

1. As previously mentioned, recognize that caregiving is a heavy load to take on. Yes, it’s to be commended. In truth, you may be just doing what needs to be done no matter the cost to yourself. It is, however, a heavy load and you will need breaks from carrying that load or you will break.

2. Don’t pigeon hole yourself into just being a caregiver. You are a lot of different things. Caregiving is just part of who you are right now. You have needs too. You should have dreams and goals for yourself apart from caregiving. That’s normal and necessary to your happiness and well-being. You were not put on earth to only be someone’s caregiver. If you believe that to be true, it’s because you identify yourself as a caregiver and have taken that on yourself. You deserve a life apart from caregiving. As a matter of fact you deserve to be cared for too. No one can be happy every day ONLY caring for someone else. It will get overwhelming and feel like prison. I believe identifying solely as a caregiver is one of the worst mistakes one can make no matter how noble it may seem.

3. Realize and accept you need help. This can be a huge thing for some people to do. If you don’t already have a support system or “team,” start looking around for helpers. Surely there is more than one person who can help. Look to professional caregivers like nurses, CNA’s, psychologists and social workers, family members, friends, acquaintances and even strangers (not the weirdo kind. Lol I’m talking about volunteers here)! If you have a medically challenged person for whom you’re caring, you can start by asking the doctor for resources. They will hook you up with a social worker and you’ll go from there. You may be surprised to know that there are community volunteers who are looking for ways to help people in your exact situation!

4. Learn to delegate efficiently. As the main caregiver or manager of the team you may have responsibilities that no one else can handle. If you’re a parent, you’ll need to be the one to make medical decisions, probably be the one going to doctors appointments and most likely will be the night caregiver as well. You’ll need to make sure there’s enough food and supplies for your loved one and their basic, emotional and physical needs are met. That’s a lot.

So you’ll need to learn to delegate tasks and divide them up. I suggest monthly or bimonthly meetings as well as keeping the team in the loop via emails as to progress being made as well as set backs or areas that need improvement. You’d be surprised how, when presented like this, people will step up to do what they can. Oftentimes, people want to help but don’t know how. You must be willing to identify where you need help, ask for help and accept it no matter what that may seem to do to your ego. It’s just an ego. Get over it. Remember the African proverb, “It takes a village to raise a child.” In other cultures (and even some other animal groups such as elephants!) it is not uncommon for sisters, aunts and grandmothers to play active roles in raising the children of the family. In modern society, that would include brothers, uncles and grandfathers as a well.

5. Trust your team. Once you are able to identify where you need help and have people to delegate or ask for assistance (your team), you need to be willing to allow them to do the task in their own way. Don’t micromanage. It will be the death of you if you expect everyone to do something the exact same way you would do it. As long as they aren’t doing something that could potentially harm your loved one, let them help you and your loved one in their own way. This includes paid caregivers. If you don’t, you will burn them out and push them away. Micromanaging anyone tells them you do not trust them to do the job correctly and that you aren’t appreciative for what they do. Just. Don’t. Do. It. There are many different ways to get a job done just as there are many different ways of loving and caring for someone. You, as a parent or relative, will do things differently and that’s ok. That’s YOUR role. If you want to fluff pillows and dote over someone by having their hair a certain way (if the person themselves don’t even care) or whatever little details they may be, that’s fine, but don’t nit pick others. If someone is willing to help you, let them!

6. Do all the practical things you need to do to take care of your own body and mental health including: getting enough sleep, laughing daily, having good hygiene and taking care of your appearance (I’m not talking about being fully made up here. I’m talking about making sure you have time to bathe and groom properly so you can feel your best), having down time to do something you really enjoy other than work or caregiving (even if you love caregiving and have made it your career or feel it’s your life’s calling) having time for other relationships, your spiritual health, exercise and physical health, etc.

7. Communicate effectively. Get organized. Prioritize your days. Get a white board so you can keep track of things like supplies or meds running low. Use a Google-share calendar with members of the team. Use email regularly to keep the team up to date. Never assume everyone knows a change in the care plan or schedule unless you have either seen a group email or sent one yourself. Even then, make sure the key members are aware of important changes.

The key is preventing miscommunications rather than “putting out fires” as I like to say. People who are always putting out fires are the ones whose lives are unorganized and chaotic.

Take the time to develop a clear system of where things belong. Identify different roles and responsibilities (never putting too much on one person even if it’s a paid caregiver). Update the white board and LOOK AT IT if team members are using it to give you messages. Don’t ignore other team members concerns. Be respectful, appreciative and conscientious of the fact that someone else has the best interest of your loved one in mind and cares enough to do so by listening to their input thoughtfully, even if you may not agree.

7. Lastly, but most importantly, find time to do something to relieve stress on a regular basis. Watching TV or playing games on your phone is not stress relieving.

For yourself: Try to focus on one task at a time. Planning your day and getting into a routine helps a lot. That in itself is stress relieving. Other ways to relieve stress are doing something creative such as blogging, journaling, making art, coloring, crafting (the ideas for being creative are endless), moving your body as in exercise, yoga or dance, meditation or prayer, spending time with a friend or counselor who can listen to your concerns without judgment (being able to vent), not engaging in drama (and avoiding dramatic people).

PRIORITIZE your life. I can’t stress that enough. As a nurse, I’ve learned that there are more than enough tasks in a day to keep myself busy and then some. I don’t put too much on my plate. If I am asked to do something time consuming I’ve learned to reply, “I’d love to if time allows but have some important tasks to do today.” I use a system I created early on which is to make a daily list of the most important tasks and stick to it. I actually do refer to it regularly throughout the day and even jokingly call it “my brain” because I can’t live without this major daily tracking system at this point. It’s easy to make and stick to. This doesn’t have to be fancy and can be done on a scrap piece of paper or, if you’re super into the electronic way, on a note-taking app. I do the most important things first and let the rest go for another day if time runs out. Some days, just keeping everyone safe and sound is enough. It’s more than enough and a big feat in itself sometimes! Life has a tendency to throw us curve balls. Be prepared for them.

Learning to go with the flow also is a huge stress reliever. You can’t beat yourself up for not being perfect.

Practicing gratitude on a regular basis is also a great way to reduce stress. It turns “can’ts” into cans and makes whatever you have more than enough. Gratitude helps you to focus on what’s important and let go of the rest. It helps you to find the blessings from struggles and is one of the keys to happiness, not just for caregivers, but everyone.

There’s  a lot more to it than this as each case has its own personal quirks. There are always things like family dynamics, cultural and religious beliefs and so much more to consider. However, I hope these things have been helpful as I’ve taken the time to think about ways to be successful in preventing caregiver burnout based on my experience as a home health nurse and what I’ve encountered to be the most effective ways to prevent it.

It always saddens me to see parents and loved ones unnecessarily stressing to the point of becoming physically and mentally ill when there really are practical solutions to prevent it. Part of my mission is to help families in situations like that. They really need it the most.

If you think this could be helpful to anyone you know, please share it. I don’t need credit. Copy and paste pieces to any social media or do whatever you want to do to get this message out: There is help for you. You don’t need to burn yourself out. It’s ok to ask for and receive help. It takes a village.

May you be happy and well.

Resources:

Definition of burnout according to WebMD:

Caregiver burnout  is a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude — from positive and caring to negative and unconcerned. Burnout can occur when caregivers don’t get the help they need, or if they try to do more than they are able — either physically or financially. Caregivers who are “burned out” may experience fatigue, stress, anxiety, and depression. Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones.

Major symptoms of burnout:

Source: WebMD

I made a free blank to-do list here. You can copy, save and print as is or use it as an idea to make your own.

Ways stress (including caregiver burnout) can affect your body:

Ideas others have come up with to reduce stress:

Ways to stay creative:

Little ways to cope with stress: