On Tuesday as New Zealand moved to Alert Level 1, I dropped Mitchell off at school for the first time since lockdown began in March. He has been home for 12 weeks – without school and without anytime at Wilson Centre for respite. Plus, as you have been reading we have been very short of support workers over this period. Mitchell’s usual supports add up to almost 24/7 care, as he requires night time awake support and also one on one daytime support. Not having all of these has meant that it has been an incredibly tough and stressful time for the whole of our family. Add into the mix the difficulty of explaining why these changes are happening to Mitchell’s routine, and you have a recipe for meltdowns.
So, Phil and I have been under a lot of pressure to manage his cares and supervision, doing up to 100 hours each week in the absence of his regular team. Phil has been sharing the load with me, but as he was still working from home, the daytime load was mostly up to me. I have become exhausted and my moods have fluctuated like one of Mitchell’s ECG traces. One minute a high and then a trough. All over the show. I tend to internalise how I am feeling, even though I am an extrovert, and then I just explode in an angry outburst. I can recognise the signals when I am starting to reach this point, but I just can’t seem to make it go away. Then of course, if I get angry and yell at Mitchell I feel ashamed of myself for losing the plot. The lack of sleep we have been having heightens the inability to cope with the repetitive behaviours, and when you have stopped and started a You Tube clip over 20 times in a hour, so that Mitch can watch the same piece, patience does suffer.
And then he is such a lovely boy. None of this frustration and anger at him, makes him any less a young man who I am proud of. He is a medical miracle, what he has been through and how far he has come would make any parent proud.
But, his care is relentless and without help, quite simply unsustainable. There have been countless times over the last 16 years when I have wished that we could live as a family without a ‘person’ to help with Mitchell.
Lockdown gave us time together as a family unit.
This was a positive.
I noticed that at night, Holly joined us in the lounge while we were getting Mitchell ready for bed instead of staying in her room, and there was a sense of freedom and peace without someone extra in our space. To not have to worry that what we say and do is under their scrutiny and that we were not being judged for what we did (or didn’t do). It was freeing.
But, it also meant that one of us needed to be hypervigilant the whole time.
- that every mealtime was interrupted
- putting down an naso-gastric tube down multiple times per day
- cleaning and sterilising syringes
- ordering oxygen bottles and medicine from the pharmacy
- ensuring oxygen prongs were in his nostrils when asleep
- assisting at every mealtime, bath time, toilet time
- cleaning up after the sterigel, nappy cream or a bottle of water was tipped out or the tap turned on and sprayed everywhere
- changing the sheets and linen more than once a day
- changing the channel on the TV, computer repeatedly
- connecting and reconnecting headphones
- Tidying up all the items taken out repeatedly
- being awake and being present to listen for sounds
- driving to and from the chemist every day for FUN!
- giving water and fortisip boluses 4 times each per day
- giving medicines and puffers as charted
- Setting up and giving the physio vest three times per day
- Cooking and pureeing for 3 meals per day
- managing the Individualised funding budget and communicating with the carers regarding rosters and pay
- training a new team member
- Using the visuals and talker to help Mitchell learn the routines
This past week when I went to stay at my Mum’s for a 2 night break post lockdown, (it was both our birthdays), we were talking about why Mitchell still needs an overnight and stay awake carer. I often thought that when he was decannulated (had the trache removed 3 years ago now) and stopped using home ventilation (BiPap), that we would no longer have need for this, and that the health system would not pay for us to have a caregiver. At that time I was so worried and nervous, that he would be expected to sleep without having a machine take his breath, and that we would not be able to sleep for fear of him stopping breathing. But, post decannulation his sleep studies still show an irregular breathing pattern, a need for oxygen support and because it is imperative that he is kept oxygenated and monitored, we have still got this support. The caregiver, no longer needs to suction and reconnect the tracheostomy, but they do need to ensure his prongs are in his nose and alert us when his heart rate goes too low, or his oxygen saturations are unsafe. Gradually, over time, the chores overnight have lessened medically, but the safety still is an issue. Plus, puberty bought about new challenges that we didn’t forsee with his autism and behaviours. He can, (which means we can) have a night where he does not sleep at all and paces the house, destructing whatever is in his path. With some different medications, this has improved this past year, but you never know when it will reappear. And it is for these reasons that we still have a person who sits up all night in our home.
Phil and I shared a lot of these nights as we had several nights each week without our regular carers. We split the night, he stayed up until 2 am – 4 am, then I got up and started when he finished. Remembering he still had to start work at 9 am, and I still had to look after Mitchell in the day, as there was no school. That is unsustainable. And, I was not even working (well in paid work). There are many days , when I get sad and mad that I have had to give up my own career. I was never sure whether I would be a stay at home Mum or a working Mum, but I have tried to return to work in a professional capacity and I just couldn’t give it the dedication it needed. Combined with managing appointments, sickness and the sheer volume of work that comes with raising a complex child, the stress led me to tipping point and excess alcohol consumption. I am proud however, that during those years I have completed and graduated from Massey University with a BA in Business Psychology. Hopefully, I will get to use this one day.
Now, we have returned to an almost normal situation, but, we are still minus our full time day carer, due to a health issue, and our weekend caregiver, who is having a surgery and will be out for 4 weeks. So, it goes on. Is it worth using temporary people, or sucking it up and enjoying the time in our home without help. It’s nothing short of a balancing act, and one that sometimes is not of our own choice. I have returned to my part time retail job this past fortnight and so far I have managed to find a caregiver to hold the fort while I am at work, but not for when we are in need of rest and relaxation.
Wednesday my friend Christine took me out for lunch (while Mitch was at school) to a new place called The Farmhouse in Clevedon. We had a lovely lunch in a lovely setting, and just like that it feels like we have returned to normal.
Last night I finished a book called,This Messy Magnificent Life by Geneen Roth – in it, she talks about finding ‘What isn’t wrong’, and for today, that’s what I am focusing on. There are positives on not having the overwhelm of other personalities in your sacred space, so while we restore our team and get the equilibrium back, I will try to focus on that.