Where have I been?

I have considered that but only very fleetingly. In truth, things have really been rather a struggle.

It is so difficult to find the right people to employ for Zach. It may be a mixture of Brexit and Covid but there does not seem to be an appetite for this type of work.

Its a tough job, emotionally and physically (we like Zach to do plenty of activities and exercise) which has poor reward both financially and recognition wise. It’s certainly a job which takes a strong, resilient and very dedicated character.

There are however wonderful rewards.

Despite constant recruitment Zach’s team is down to one permanent member of staff and one part time. This is making life difficult and uncertain as Zach requires 2:1 support. He also needs a BCBA (Board Certified Behaviour Analyst) on the team to keep standards and consistency high.

The stress of this takes it toll on everybody. I worry constantly about whether Zach is getting the support he needs, making the progress we know he can make, doing enough exercise, learning life skills and eating good food. Coupled with that I worry whether sessions will be cancelled which really throws Zach and of course means it is difficult for John and I to go about our daily lives.

The staff struggle has been going on for a long time now and it is not improving which has definitely added to my mojo going missing. It is hard to wake up feeling positive when we are totally unsure of what is going to happen that day/week and what does or doesn’t happen is totally beyond our control.

I lost my dear Dad in March, he was 98 years old and since last Summer had been losing weight and becoming weaker. Not eating and becoming less mobile. It was hard to witness and know what was coming. I know how lucky we were to have my Dad for so long, we lost my Mum at 95 so I do count my lucky stars but at the same time that doesn’t make the loss any easier.

Every time the phone rang for months my heart was in my mouth and during the last weeks of his life he sadly kept falling as a result of his determination to get to the bathroom despite not having eaten anything but a Bourbon biscuit or two for days.

Dad had a peaceful death in hospital on a ward which was very caring and kind. I miss him and for some reason feel like I have lost my Mum all over again. Having spent so much time with Dad in the last months of his life there is a big hole left.

My anxiety every time the phone rings has gone, and Dad is at Peace but it has certainly contributed to my feeling of things being sad and difficult.

In memory of Geoffrey H Bruton 29/07/1924-03/03/2023 who almost made it to a full century.

We are incredibly lucky that Hertfordshire is helping Zach purchase a 25% share in a beautiful brand new house, very close to us and in the town which he has grown up in.

This of course is great news however trying to find a suitable provider to support Zach in his new home is proving incredibly difficult. We need a company who will provide a small team who are well versed in ABA or PBS. I have been in touch with many providers now and am yet to find one which looks suitable and provides this type of support.

Many providers seem to provide support in a property which they own, this isn’t something I would consider for Zach. His home needs to be secure and belong to him. He won’t be a visitor in his own home.

We also found a clause in our ‘Property and Affairs’ Deputyship* which said that we could not purchase property on Zach’s behalf. Anyone who has had dealings with the Court of Protection will know what a long and drawn out process it is waiting for deputyship, filing the right forms, in the right way, all signed in the right place. We are still waiting for our amended Deputyship to be granted and time is really marching on.

Last week I found out the house will be completed three months before the date which we were originally told which puts even more pressure on.

I have decided to try to document on my blog our journey with Zach’s transition into his new home in the hope it may help others doing similar things and that it helps me rationalise and balance in my own mind what is happening.

I would be very interested in how many other families are struggling with support staff for their loved ones. Our loved ones deserve the very best, as everyone does when it comes to care and support and it just doesn’t seem to be there. We all need to work together to try to solve this massive hole in support and care. Without the skilled and knowledgeable workers there is none.

Our enterprise, Spectrum of Misconception is being neglected as a result of all these things which is a shame as we have some amazing new products in the store and also coming. It just feels like one thing too much at the moment but having worked so hard to gather interest and orders I really don’t want to let it collapse.

Please take a look at our website if you have a moment, we are always very happy to receive your orders.

We have a number of events coming up so check out the ‘Events’ part of our site, it would be great to meet some of our present and new customers.

*A property and affairs deputyship is a legal appointment made by the Court of Protection in England and Wales. It is granted to someone who is responsible for managing the financial affairs of someone who lacks the mental capacity to do so themselves¹. The role of a deputy is an important one that carries a great deal of responsibility. They step into the client’s shoes, and ‘become’ them for all financial purposes. A property and affairs Deputy will involve themselves fully in every aspect of the client’s life that will have an impact on both their personal and financial situations¹.

You may have noticed, or you may not that my blog posts have been few and far between. There are a number of reasons for this. I would like to be able to tell you it is because I have what will be a riveting podcast coming out very soon but unfortunately that isn’t it.