Yellow Azalea

Saturday 28 March – Day 3

Today was pretty calm here. Phil had taken on doing the overnight shift as SO doing 3 instead of 4 this week. I stayed up to help get Mitch to sleep and showed Holly how to do some of Mitchell’s cares, so that she can also help out during this time. We are needing to make decisions about how to best manage our safety when using carers in our home. We have been fortunate to get some gloves. hand sanitizer and mask supplies from friends and family, as these are in a shortage and although the government tells us to get them from the DHB, they have declined to supply to us.

I have been active on our Complex Care Group and Individualised Funding (IF) facebook groups with other parents as we try and each work out how to handle our unique situations. While caregivers/support workers in the community are considered essential healthcare workers there are many in our community that share support workers, e.g. they may work in more thn one home. This practice is not compliant with keeping in our bubbles, and as there is a shortage of Personal Protective Equipment (PPE), it is creating stress within our compromised communities.

In our own situation, all of the support workers we use are only coming to work at our place, so we don’t have the as much risk of cross infection from other homes, except for their personal living arrangements. Because of this we have three of our main team on stand down. The others have agreed to work solely with us and also have more easily managed living situations, e.g. live alone or with one other person. Two of our team who just started and work on the weekends, have no other work, so have stepped up to take some of the midweek hours. So, we have patched together a combination of new carers, regular carers and us to manage and supervise Mitchell 24/7. This has taken some sorting, and a lot of reading on what each person is eligible to receive as government support if they are on stand down.

One of the positive things to come out of this, is that we are permitted to pay ourselves or a live in family member up to 40 hours while in lockdown. While not a sustainable option and/or something we want long term, as we normally are here as the back up and work together with the carer, it relieves some of the financial pressure while I am unable to go out to work.

Didn’t do much else today, except that Holly tried to make Anzac biscuits, only to find we had no golden syrup. We substituted maple syrup and honey and called them Canadian Anzacs. They were interesting.

Sunday 29 March 2020 – Day 4

I slept most of the morning as I had stayed up with Mitch on Saturday night and as a consequence could not motivate myself to do any yoga today. Did venture to the supermarket for the first time. We have been trying to get an online booking but still with no luck. So, I gloved and masked up and did a really, really big shop so that we get through the next week and maybe even a couple more days. Phil and I made up a meal plan (another thing we should do regularly) but it was hard to stick to it as the shops are still missing some of the essentials like flour and ICECREAM. What is it with the icecream? Holly gave me 5 flavours in order of preference and I did not get a choice – there was one lonely Deep south tub of mochacchino flavoured icecream and some small Hagen Daas. I got the Mocacchino -hopefully it will taste okay. On a more serious note that we are still unable to get hand sanitiser, dettol or any spray and wipe product. Even vinegar in short supply. I think everyone is missing their takeaways and looking for home treat foods – just as we are.

Spent last night talking online with other members in our CCG and IF groups and have composed some feedback to go to government about health and safety of our carers and our vulnerable who live at home. To add insult to our situation our host advised that those who are standing down can only receive pay for 14 days maximum and that is only if they are infected or at imminent risk of infection. It’s crazy that we are told on one hand to stay home, and keep our elderly home, yet we are not provided with the same protective equipment when in a situation that means we can’t keep distance.

Sometimes I think that life hasn’t changed too much for me during lockdown. Living with a high and complex child for all these years has meant we have often spent weekends at home and/or away from public spaces. For years we didn’t take Mitchell anywhere with lots of people and our house (while not sterile) always has medical equipment and hand sanitiser, gloves and other paraphenalia. We have spent so many years not being able to go places, that we have a good set up at home. I have my crafting space, we have a spa pool, I have a yoga mat, we have TV, books and loads of board games. I miss golf and the social aspect of work but it’s nice for now having everyone home. I know my extrovert personality will go crazy if it goes on too long, but as long as the sun shines and I can get out for a walk I can stay sane.

What scares me the most right now is that I know that putting Mitchell back on a ventilator is really not an option. Before the trache he was intubated and ventilated 13 times, and after his trache he still required bipap up until a couple of years ago. Hearing that there are only enough ventilators to support the ICU beds is a real worry and because he still has such weak lungs, if there is pressure on the system, who is going to get priority? That’s a big worry and for that reason I hope that other people understand that this lockdown is only as strong as the weakest link.

No crafting in the last 48 hours, except a little bit of zentangling. And this writing is therapeutic, so long may it last.

Yours in lockdown

Cherie 🙂