The past couple of years have given me a really good insight into the benefits of building a Core Group of Support Personnel. You see, I don’t just discuss the need for having good decision making skills, communication skills and strong relationships with the therapists who advise you on different aspects related to your Caregiving role, I live it myself. I have lived it for the past several decades and have been on both sides of the fence. The side where I waited to be told how to proceed. And the side where I chose how to proceed.

In recent times I have seen first hand the benefit of building a likeminded team of professionals and expanding the choices I have by doing so.

My son Rob has two sessions a week with a really great Physiotherapist. It has taken quite some time to find just the right person. Mark has only been with us a couple of months and his ability to encourage Rob to push himself and try new things has astounded me to be honest. I know Rob really enjoys his sessions and usually comes home feeling pretty impressed with his efforts. So I knew it was serious when he told me he thought it would be best if he stopped going to the clinic for a while. 

I have always made a point of discussing everything about Robs health and therapies with him so that he would have an opportunity to ask questions. I have also made him aware that having choices is important in order to make decisions. So I simply asked what the problem was and how he wanted to proceed. 

The clinic where Mark works has been going through some changes. The management has changed hands and some of the staff have left to work elsewhere. Mark himself has been working less hours and told Rob he is considering leaving himself. In the meantime he has decided to take some time off and visit family interstate. He assured Rob he will let him know when or where he’ll be when he returns.

Rob told me he had been doing really well and didn’t want to lose any of the gains he had made. On the other hand he knew Mark was away yet again and that he didn’t get the same level of satisfaction from the fill in physios when he had sessions with them. He didn’t want to lose Mark as his physio but he was starting to get worried his therapy might not follow the same path he felt was working so well. Added to that he was concerned that I would be disappointed if he chose not to go to physio for a while. We had a few choices to make and I had a good opportunity to involve Rob in expanding his ability to make decisions. I saw his concerns as a real learning plus, but more than that, I was pleased he actually believed he could make his own decision with my support. 

Firstly we discussed the approaching winter months and determined that colds and flu would be a feature of any clinic situation. If he was going to have a break till Mark came back, the middle of winter was probably a good time. 

The next concern we discussed was how he would continue to improve when he no longer had access to the equipment he was using. Mark would give Rob some stretches whilst sitting in his wheelchair. No problem there I told him. We will do the same at home. Mark had just begun getting Rob to push up from his chair whilst being held so he could start putting some real weight through his legs. They used a series of bars at different levels so he could pull himself up whilst being gently balanced. How could he continue to stand for short times.”he asked”  A little imagination solved that problem though. We purchased a grab rail from the hardware shop and screwed it onto the decking hand rail at the correct height. Rob uses it daily for a few minutes and is happy he is getting the same level of stimulation.

After making those few choices I asked Rob to give me a run down on what he saw as the plan. His exact words were, “I will tell Mark I am staying away for a while but want to come back to him when ready if he can let me know where he will be working. I can do the same stretches and standing as I do at the clinic. I mightn’t do more but I won’t lose this level of improvement.” We agreed that he might even do more now he wouldn’t be waiting on someone to tell him what to do, but was deciding what time of day to excercise himself. Rob was starting to take responsibility for his own decisions by thinking through his plan of action. It was a plan he had mostly decided upon himself and by voicing his plan I was able to add my two cents worth to help find solutions. 

Realizing he could draw on the advice and knowledge of others to help make his own choices was actually a bigger breakthrough than the physical improvement he had recently been experiencing. In the past Rob had always wanted me to work out such issues showing little interest in what I decided. Something had now changed dramatically in his thinking. I expect the small improvements he was making under an encouraging physio had helped him to see the value of setting some goals. I couldn’t be sure but what I did know for certain was because he had formulated a small plan of action he was beginning to set goals. Rob was well on the way to understanding that you can indeed make decisions if you have several choices. This allows a level of personal control that cannot exist if you wait for others to choose the way forward for you. 

I talk a lot about assessing choices and making decisions. I spent the first years of Robs life feeling trapped, unable to move forward without direction and certainly void of the ability to make decisions. I was a world away from having the ability to recognise the choices from which decisions could be made. I know well the damage that can cause to your relationships, self esteem, future happiness and the happiness of the person you care for. Often people become frozen by fear when it comes to making a decision. In fact not making a choice between two different options is in fact making a decision. The decision not to move either forward or back is making a decision to remain frozen in your uncertainty and fear.

Some of the questions we torment ourselves with in order to stay in the void between going one direction or the other include:-

“What if I am wrong?”      If you do feel your decision was less than optimal then you will have some evidence of that. You will be identifying reasons to change tack and try again.

 “What if things get worse?”   Things were already worse you just couldn’t see it. As soon as you see things can be one way or another you are seeing choices. When we put our decisions in the hands of someone else we are saying we don’t want to see the choices. We want that responsibility elsewhere. We think it will save us grief if things go wrong. The grief however, for others decisions made on our behalf still comes home to our door. Some of us choose to allow others to make our decisions so that if things do go wrong we can blame them. I had done that in the past until I came to realise that no matter who made the decisions I was responsible for accepting them.

 “What if I lose some of the support I now have?”     If you lose a support perhaps it wasn’t aligned with your goals or not suited to your present circumstances. It can be deterimental indeed to hang onto services or supports just because they are there. I can give this example. We had a support worker who was a really nice lady. She was never late and really did care about Robs welfare. She refused however to use the lifting machine which helped with moving him from bed to his shower chair. Occasionally she actually dropped him. Rob didn’t tell me this until one day his knee became swollen and I asked what had caused it. He told me he didn’t want to lose her as he knew finding the right person was difficult.  The thing is she already wasn’t the right person and I proved that when I asked her to practice using the lifter and she chose to continue as before. We let her go and eventually found a young guy who was all we could have hoped for. 

We have been going through a difficult time worldwide over the past few years. Many people have succumbed to depression, suicide, marriage breakdown and sadness due to feeling trapped without choice in many areas of their lives. I feel very positive for Caregivers though, knowing the resilience we build as we learn and grow into our role gives us the ability to think outside the box. We are a sturdy bunch who have an ability to problem solve and deal with unexpected issues regularly. Many of us just need to add a few strategies to our tool box of survival tactics. 

If you have a choice between two options, no matter how minor those options may be, a feeling of control grows within you. It’s when you have no options and the control over your life is external, that you begin to feel stress pushing down on you. Moving forward in a positive way become less stressful if you know how to create those options.