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

Just for today:

Become aware of your breath.

Forgive yourself for negative thoughts.

Say “thank you” to everyone and everything.

Surround yourself with comforting textures and sounds.

Actively listen to everyone.

Think of a good memory.

Know that you are wonderful just the way you are right now.

Remember you don’t need to please everyone.

Do something big or small just for you.

Take time outdoors.

Set boundaries if needed.

Be kind to yourself.

May you be happy and well.