The secret life of the terminal illness family....

(Photo Credit Stefan Paetzold)

Sure, we smile, we say we are fine. What would you like to hear? Most people just want to make sure we cope because the alternative is just to difficult to consider ... Maybe you do really want to know the truth, or maybe you hope we just say Fine. Doing OK. But just in case you wonder, here is a little bit of our secret life, because we do live a double life....

It is one thing to see a loved one or friend neatly washed and combed sitting ready to receive visitors. Who, by the way, stay only a little while making it even more unrealistic to get a good idea of what a family goes through...

So, getting to the point of being neatly washed and dressed we jump through a few hoops...with MND you slowly become paralyzed but you can still feel touch, pressure or pain. But as the motor neurons die you might not be able to speak, or turn yourself, or sit up in bed, or even stand. So a strong boy needs to hold his father up in the air so we can get him into the wheelchair or dress him or get him into the shower chair. It is like holding a bag of cement in the air - try it out, it is hard. This we do numerous times each day and for various reasons.

Eating has been compromised so we mix a nutritious powder with water and inject it into a stomach tube. Sometimes it gets blocked and we spray the ceiling, the floor, our faces....sometimes we laugh, sometimes we cry out in frustration, sometimes we just plain cry (mostly me) All in a day’s work. Vanilla flavored showers...

Oh, and talking about showering -those chairs! Not one is adequately designed! We have one that is now a designated towel drying rack with wheels. Either too low to go over a normal toilet or to high so that we struggle to get unto the thing. A bare backrest bores a hole into a very anorexic back...I pad it with towels which fall on occasion into the toilet, sometimes I find it funny, sometimes frustrating, sometimes it just breaks my spirit...the things we have to do and face daily makes us cry inside but also shapes us in ways we cannot foresee. Our secret life is making us stronger, more reliant on God. Who else can truly see into our secret life but Him? This feeble attempt surely does not....

Although MND affects only the voluntary muscles other things go haywire as well. Some parts are just impossible to write about but nonetheless something we have to do every day. We make as if we are not affected at all and joke around to lift the mood, we hold our breath and do our thing. Not easy or thought about by others but we plod on. Trying our best. Living fully with this shadow hovering over us.

Our 19, 17 and 16 year olds have learned to be hospice carers and do so excellently. We are there in the middle of the night when mucus chokes, stuff that can’t be swallowed anymore. We are there when saliva pools and drops down a chin. We are there when a stiff and sore body needs turning every hour of the night, keeping watch over a father during the day ànd night. Always on alert. Sleep is no longer a given. We take turns staying awake, sleeping on chairs, dozing in between the turnings, waking up in a panic when more than an hour has lapsed, checking breathing, falling asleep again. Always that worry in the back of minds...

We are a good team -all working together to get things done. One example is going to Church! Getting there on time takes 4 dedicated people. We “breeze” in and sigh as we sit down on time. We made it. For how long we don’t know, but for now we can still get it done. Part of our secret life is that we don’t know how the day will pan out. Asking about our plans are really distressing as we live day by day. If we do have plans a lot of planning goes into it. Who will be gone, how long, who will be here, how will the ones at home manage? All of this takes huge effort, but we do it anyway. A lovely carer helps us out a few mornings a week, just to make it possible for us to do other normal stuff like school, shopping, short breaks...

And that bring up another thing. Plans. This week the plan works, next time it doesn’t. Time for new plans. New ideas. We get conflicting advice, we sort through them and pray for wisdom. We try something new and it works...or not. We keep on making plans. Thanking God for His wisdom and bottomless ideas.

Our family loves having people over. I love cooking, but all that has changed and I should say “loved”. Now we eat stealth mode. Kind of under the radar. We try not to talk about food too much and decided not to invite people over for meals anymore.....coffee maybe. We practically run this house on coffee! And it is one thing which, with a lot of patience still goes down a throat that otherwise do not want to swallow, slowly dripping in a tiny bit of coffee in at a time. Our very patient carer gets most credit for this coffee drinking technique! 

It is just so hard if you can’t eat or taste anything anymore and delicious aromas waft around...but in heaven there will be a feast! And we find comfort in that while we try our best to make life on earth bearable for now...sacrificing out of love so many things that made us who we were but cannot be anymore. 

Our secret life is about more than just coping with illness; it is living fully with it. We have sad times, we have lots of stressful times, we have funny moments, we loose it at times (me again) we give hugs , we forgive, we carry on by God’s grace. At times we are very good at guessing what is being said, other times not so good. 20 questions turn into 50 and a tired shake of the head leaves all of us feeling perplexed and a total failure. Communication goes literally down the drain. We live in a constant changing state of loss...covering our mourning with being useful, using our sense of humor to get through the day, conscious of God’s sufficient grace that is enough.

In many ways I hate this season, but in many ways I see it forming us - all 5 of us - into what God wants us to be. Yes, failing many times, but getting up again, being brave for yet another agonizing day, trusting God for this day, for this moment. Looking out for that sun that shines undoubtably behind these very dark clouds.

Bella