Charles Dickens wrote
No-one is useless in this world who lightens the burden of others
sculpture – “My Boy” by Nathan Sawaya
People to be grateful for
We are very fortunate to be in a place where people are offering to take care of Samuel to try to relieve the pressure on us and allow us to do a few things together as a couple or as a family, however;
What do you do when someone offers you help out of a sincere desire to help carry the burden?
What do you do when you desperately want to say yes… But you can’t?
It’s a question that has confronted us a bit during our time dealing with Samuel, and one that in recent times has become harder and harder to deal with.
We would love to say yes to those offers, and we feel bad when we have to knock back those kind offers.
The context of saying thanks, but no thanks…
The context of why it is not possible to say yes is probably difficult for most people to understand, because we have been reluctant to really spell out difficulties that it might entail.
Samuel often needs suctioning to manage his secretions and keep his airways clear. It’s a process that took us a while to learn and to become comfortable with at the start of our journey. It was also the feature of caring for Samuel that was a major contributor to the difficulties of continuing to be able to send him to school.
Attendant carers needed to be taught how to suction Samuel, a process that would take anywhere up to four hours per carer… But what we couldn’t teach them quickly, or help them become comfortable with, are the signals that Samuel gives in the lead up to needing to be suctioned. If you miss those signals then Samuel will quickly be in the process of choking and this immediately poses the risk of him aspirating. If he aspirates this quickly leads to the onset of pneumonia and all the associated problems that he has experienced repeatedly, and the current reality is an aspiration and pneumonia is highly likely to be fatal.
Another complicating factor with caring for Samuel, or with having someone else care for him, is the existence of some advanced care directives that are in place and what they mean for people caring for him. These directives mean certain things for what the Ambulance service have been asked to do or not do, and in the event that he does go to hospital what care will be provided for him by his Doctors. Despite these being in place our experience is that it is still necessary to advocate for Samuel to make sure that these directives are met, as they may not appear in the information that is given to the Ambulance Officers while they are en route to our place.
The existence of these orders even has an impact on our ability to utilize professional respite services that have been involved Samuel’s care for quite a while, as there is some conflict between their agencies perceived duty of care and the details contained in these directives.
We would not want to place people who sincerely want to assist us in a position where Samuel’s care is precarious and they might have to advocate with Ambulance officers to ensure that our wishes for Samuel’s care and treatment are carried out all in a situation that is highly likely to be unfamiliar to them.
As a result we are extremely reluctant to leave Samuel in a position that could see him inadvertently suffer more by being subject to aggressive interventions that are not wanted, and extremely reluctant to put our friends in a position where this might occur to them.
What does help?
There are however many ways that people have been and can continue to ease the burden during this phase of our lives. The little things that people do, the phone call, the message, the sincere question we when bump into each other.. The acknowledgement that you don’t know what to say (the truth is that there is nothing that can be said…), the joke shared, the cuppa shared, please remember …..
Thousands of candles can be lighted by a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared.
Each of those little things helps keep our candle burning……….