Category: Caregivers

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Fill My Cup

Today is one of those days when I feel like I’m running on empty. Just like a car, if we don’t refuel it, it will run out of gas and be of no use. So what do we do when our car is empty? We take it to the gas station and fill it up.

Well today I’m on empty, the challenges and responsibilities of life have left me empty. It seems there’s never a reprieve, a time when I can just breathe.

With Mom’s passing, time as not healed my wounds. It seems the more time passes the more I miss her and the reality hits me that she’s no longer with me. The telephone calls every day have ended, just hearing her voice is gone. So I call out to God; be my comfort today.

I’m guessing that most people wouldn’t admit to having a down day. And that’s okay, but for me I like to be real and by doing so to help others. We live in such a world that expects perfection, a ‘me’ society, a cookie cutter mentality of what we are supposed to feel, think and act. I guess I was never drawn into that way of thinking. I am who I am, nothing or no one more, just me. Sometimes maybe it would have been easier if I just went along with the status quo. But I didn’t always chose the path most travelled. Many times I made my own path, I found my own way.

Living with a mental illness can so easily drain you to a point of exhaustion. Every day is a struggle, some less then others. But lots of days I feel like I’m running on empty. Many days I just have to stop and refuel, to breathe.

And then there’s a caregivers life; that means 24/7, 365 days year. I’m not complaining; I would do it all over again if I had to. But I can’t say it’s an easy life, it’s tough, challenging, isolating and exhausting. I love Lauren more then life itself and that’s why I gave up my own life for her. But what I gained was far above anything I could ever imagine. John 15:13 says, “Greater love hath no man than this, that a man lay down his life for his friends”(his daughter, his family).

So it’s those days when I’m running on empty, when it seems humanly impossible to keep going. But it’s those days that I have learned to look to an higher power. To a strength that is not my own, to a God that is in the driver’s seat of my car. I’ve been singing this song all morning and it sums up what I’m trying to say. The words of the song are “my” words, my prayer for today. He is faithful!

Like the woman at the well I was seeking, for things that could not satisfy. And then I heard my Saviour speaking, “Draw from My well that never shall run dry”.

Fill my cup, Lord. I lift it up, Lord. Come and quench this thirsting if my soul. Bread of Heaven, feed me ‘til I want no more. Fill my cup, fill it up and make me whole.

There are millions in this world who are craving the pleasures, earthly things of gold. But none can match the wondrous treasure that I find in Jesus Christ my Lord.

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Mental Illness; the Joy Killer

I’m angry, there, I said it! Maybe angry is a bit of an harsh word but I can’t think of another that sums up how I’m feeling. This has been one of those days when I’ve needed to write but every time I attempted to, I couldn’t. I know if I started writing, I would never stop.

The thoughts and emotions were anything but joyous. I’m angry, angry at me for being me, I hate what mental illness has done to me; it kills my joy and leaves me empty. I need to fight back but I’m so exhausted. And then life itself has been more then any human being should have to deal with. We have fought two near death experiences where Lisa was intubated in order to save her life. This trauma has left us with scars that well last a lifetime. Then I lost my Mom, I loved her more then life itself. We only get one Mom and she’s gone; no second chances. It’s so hard to grieve when you have many other responsibilities that demand your every moment. And then two of our very good friends passed away, it seemed like death was all around us and we were losing those we loved much too soon.

To say the least; 2023 was not without its challenges, hurts, disappointments and pain. Then to top it off, Lauren had two major surgeries in Montreal. Surgeries that we struggled with for so long; were we doing the right thing? Was this in the best interest for Lauren? But what other choices did we have? None! This was early summer and now it’s the end of the year and we have faced so much disappointment. Right now discouragement invades our thoughts, we see little improvement and still so many uncertainties and yes we worry; with good reason.

Again today I was reminded of just how imprisoned I felt. Lisa had to attend our friend’s funeral alone because one of us had to stay home with the kids. It seems we can do very little as a couple. We are caregivers 24/7, 365 days a year. I’m not complaining, I’m just stating the facts; the reality of the life of caregivers. It’s tough!

I thought by now that things would have gotten a little easier but today just proved me wrong. It felt like my world was crumbling all around me and there was nothing I could do to stop it. And that reality stirred up some very unpleasant emotions within me. It made me feel once again that we were so isolated and that feeling of being alone in a very busy, big world just overwhelmed me once again.

I find it very difficult to look the other way and ignore the state of the world. The war in Gaza, the homeland of the birthplace of our Saviour, is left in ruin and war rages on with no, “Peace on Earth”. No cease fire for the Christmas Season. I believe there’s not much that I can do but I can pray for peace, we can all pray for peace.

In spite of all this turmoil within my own world and the world abroad; I still have to find peace and hope in that baby that was born in Bethlehem all those years ago. He is still in control, He still calms our storms or sometimes He just calms His child.

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The Unseen Caregivers

I just finished watching a documentary called, ‘UNSEEN’. It was a documentary that was so eye opening, encouraging and was produced to show non caregivers an inside look at the lives of parents of a disabled child. It’s not about being selfish  or about complaining but it’s stating the reality of the unseen caregivers. When you have a baby you have dreams for that child, to walk, to talk, to see. Then off to kindergarten, junior high, play sports, make friends, high school graduation. Then off to College and maybe even get married and have kids of their own. It’s just one big ball of dreams.

But then you have this child with confounded disabilities! What Now? Then your big glass ball of dreams just shatters to the ground and explodes into a million pieces. You immediately fall into a state of unbelief and panic. This is not a path that the majority of parents have to walk on but yet there are thousands of us out there; they are just UNSEEN, sometimes by choice, sometimes its easier for the ‘perfect’ cookie cutter parents to just look the opposite way.

Then you wake up one day and realize – this world wasn’t created for your child and that’s the hardest to accept. But you do what you can to give your child the best life possible because you love them, you love them more then your own life. You want nothing less then the best for them, in this imperfect world that was only designed for the ‘perfect child’. You keep going, you have to keep going because your child needs you but you realize it’s a very lonely path.

Home is supposed to be a sanctuary, but it is sometimes far from that. At times it’s more like a war zone. Some days you find you are hanging on by a thread. The screaming, crying, pain, uncertainties, the worries go on and on, you can’t stop it. We thought that as Lauren would get older  things would get a little easier, but it doesn’t, and this can get very overwhelming. It eventually turns into a constant state of anxiety for the whole family. You are living on the edge, you don’t know what a day is going to bring forth. You are in a fight or flight mode. It affects every area of your lives, your family, your marriage. It feels like some days you are just existing.

Our lives as caregivers never ends and will probably never end. It’s not Lauren’s fault, it’s not our fault,  sacrificing your life for another person  for 24/7, 365 days a year; you love them but that doesn’t make it any easier. Parent caregiving never stops, you know you need a break, but how are you going to get it, it’s next to impossible. We need to decrease the stress in our lives but how do we do that? We need to find a balance but there is no balance in sight.

The system has failed us as parent caregivers, we require mental health resources (I’m not just referring to ourselves but all parent caregivers) , more continuous care and respite. There  is no burden of child, if you care about a disabled child, you have to care for the parent caregivers as well. Most caregivers are not fine and are not doing well and that’s a fact. The older we get the harder it gets. We can’t get sick ourselves, for who would become our child’s caregiver?  Our daughter needs us, no matter what and that’s so overwhelming.

Our glass ball fell and shattered into a million pieces, many years ago now. As life become easier? Not at all. We feel just has overwhelmed now as before., maybe more. We feel just as alone as we did on that dreadful day that Lauren got her diagnosis. But maybe one day some of the pieces of that broken glass ball can be put back together. Just maybe! And the UNSEEN caregivers can see a ray of light!