I am a planner from way back. I like to know what is happening and when and although I don’t necessarily feel I need to work to a strict schedule, I do like to know I am in control. That makes me sound a bit of a control freak, but it just means that I always need to have sufficient input to feel that my wishes are acted on. So, when it comes to my Parkinson’s, I will try to have at least some say in how my journey goes. There are many things, particularly symptoms that we cannot completely eliminate, but that we can improve with medication, dedication and exercise.
Because of my need to plan, I do something that sounds like I am not keeping with my philosophy of not looking too far into the future. However, the reason I am predominantly able to stay focussed on the ‘now’ rather than ‘then’ or the future, is because at the beginning of this journey I took steps to have control. Amongst those steps was setting up Enduring Power of Attorney, so I would have someone to assist and support me when I may need it in the future. Also, I started a discussion very early on with my husband about facilities. The discussion I wanted to have was to talk about when or if I may need to go into a facility. I know for many this is a very difficult choice as they are often leaving a home and a person with whom they share many memories. When I started to open the discussion about rest homes my husband was very reluctant, saying it was far to early to discuss. However, I wanted him to know that if in the future it gets to the point where staying at home with him becomes difficult and unsafe for either of us, then it is OK to have me move into a resthome or whatever level they may need. Now that we have had that discussion, we can put all thoughts relating to it, into storage somewhere in our brains for if/when we need it in the future.
Often people move into a retirement village where they are still very able and self-sufficient, but have support and social options close to hand. Choosing to move into a village into an independent unit, can make the transition at some point to being in a resthome or hospitable more acceptable. One bonus of moving into a residential situation is that it is possible to make new friends and enjoy social opportunities which may not be available out in the community. Breaking down social isolation is hugely important in keeping someone well.
We are all going to progress at some point and that will be different for all of us. However, for me being able to voice that I would accept a facility in the future, means the big discussion about this option may not be as big a discussion as it would have been.
Having Parkinson’s can limit the choices we are able to make, so for me it is important that I have a chance to choose when I can.
Click below to hear my podcast “Moving on….”
My journey with Parkinsons 