When the Medical Side is Under Control
4 years on from Derek twice having his warfarin stopped by a hospital who’s excuse is “Oh, the Dr didn’t realise the importance of bridging” and we have, with very little help from them, managed to get Derek as stable as he will ever be.
We have got his Adrenal Insufficiency as under control as it will ever be. We have worked out through experiement, what dosing works for him (and it’s not what they say in the books). We have added other replacement medication (DHEA, Vit D) which is helping. We are learning the symptoms of low cortisol. We should have learned, we see them frequently. Derek updoses as he needs, which is different to stress dosing when sick, and how to stress dose (double or triple HC) when he IS sick.
He is being driven to work, although he works mostly from home at the moment.
But what is the unseen cost of the medical fraturnity almost killing him?
It’s the costs they don’t compensate you for. It’s the cost of things he can’t do any more. The things we now need to pay to get done. For some it is things like having to employ a builder, for others, it is having to downsize their home, pay a cleaner, pay a gardener, or just not do things any more.
Why is employing a builder a hidden cost of his injury?
Before Derek suffered his CAPS event we used to work together to do renovations to the house. This included turning our downstairs bedroom, shower room, and toilet, into a Master Bedroom with ensuite.
The cost of this exercise was extremely low. We paid just for the materials used. We paid a very small amount to have 2 power points moved. We worked weekends, nights, and took a few days off work.
Top Left is the entrance foyer of our home. You can see the door to the shower room, and the door to the downstairs toilet. The bedroom is the door to the right.
Derek built the new wall (back of new wardrobe). He then demolished the old wardrobe, we gutted the room, insulated, relined, and created a new Master Bedroom.
This was done a year before CAPS.
We have done a couple of small outside projects, with a lot of help from others including building a garden and a garden shed and an deck outside the dining room.
Derek designed the deck, but we had to call on friends and family to build it. It is an amazing asset, and again, we paid for materials, and food for workers. The help to build these things was fantastic. But what about the bigger projects. Something the size of the Master Bedroom. Like a kitchen? Or insulating the Living Room?
We are looking at selling our home in a few years and find something slightly smaller. There is a lot of new building going on around our area and we have to have our home at the right level to get the right money. That means insulation in the Living Room is essential, as is a new kitchen.
Once upon a time we wouldn’t have thought anything of it. We would have just purchased the materials, contracted a kitchen manufacturer to make the cabinets and bench top and over a period of a couple of months, done the work. But not now. And it was too big a job to ask friends to spend 2 days building.
So we had to pay a builder. He is a great builder, with home renovations/alterations as his specialty, but still, we had to pay. We have had to pay him for a lot of the other “little” jobs around as well. Things that would normally take a weekend for Derek and I to do, now either doesn’t happen, or Chris comes to our rescue, but at a price.
So, Chris came in and gutted the lounge. He then built a new ceiling, insulated the entire lounge, relined it. We had to get a plasterer in to paint. We had to get a painter in to paint it.
As for the kitchen. It is a great Kitchen, I love it. But again, we kept Chris employed where we could would once have done much of the work.
With the help of a friend we did remove the old kitchen.
Most of the kitchen was still in good enough shape to be used elsewhere. It was after all, a Designer kitchen. It just wasn’t a well designed kitchen.
Our friend agreed to remove it with her and I doing the bulk of the work including carrying the units down to her trailer, taking them to her place, and putting them in her garage, for her to have installed in her home. Derek did the little bits. He unscrewed units from each other, and supervised, or held things while Sian and I did the hard labour. Thank the Lord for Sian. She has a new kitchen and Derek didn’t end up overdoing things.
But once everything was removed the walls were a complete mess. Patches here and there. Holes in the wall. No insulation, It had to be gutted. We also needed to install a new window as one of the windows was sitting below the height of our new bench.
Enter Chris again. It wasn’t a big room. For someone fit and healthy, which Chris is, it was a 5 day job to put up new ceilings, new wall lining, and install the new window. Working along with the plumber and electrician it took 2 weeks in total. Inbetween that, we had the kitchen company come in and install the units and bench top.
Then Derek and I could do some more work. Well I could do some more work. Derek “supervised”. I plastered, sanded, and painted. Derek did bits and pieces, working as he could, taking extra HC as he needed. It took several days, with me doing the bulk of the work. It was hard work, but rewarding.
Once we had the units installed it was time to put up the tile spashback behind the sink, and along the bench top. Again, Derek cut a few tiles with a motorised tile cutter, and I did the installing of them.
All Up, for the living room and kitchen, it cost us $10,000 for work that 5 years ago we would have done ourselves. This was the cost of employing a builder for work that Derek was once very capable of doing, and in a good timeframe.
So what is the hidden cost of a medical misadventure. So far in the last 12 months it has added up to $10,000 and rising. This, you do not get compensated for.
I understand that others would already have to get someone in for this, but when it is something you would have previously done yourself, it makes a difference. It certainly made a difference to the cost of the Kitchen.
For others it may be something different but there will always be hidden costs that are not compensated for, or that have no real measure and that are not thought about when it comes to the cost of a Chronic, or unexpected illness.