Generally speaking, the familiar or the ordinary in our lives gives us a feeling of comfort or safety. A known quantity or experience to be relied upon. However, there are times when the familiar or the ordinary or what has become so, is not a good or safe thing.
My second marriage became an unsafe one in many ways and anyone hearing any of the details of the marriage often would question why I would stay in such a situation. The answer is not easy to give, especially if the person asking the question has no experience of living in an unsafe environment with a person who governs your every move. May I just point out, that this is not my marriage to my children’s father by the way. When living with a controlling and abusive person, especially if they are stronger they have power over you in many facets of life. You become accustomed to managing your own behaviour to avoid the repercussions that follow ‘unacceptable behaviours’ in the eyes of your abuser. So, when I finally found my now husband, I had a ‘conditioned response’ to his quite innocent behaviours towards me. As an example, if he was seen by me to frown, rather than my thinking he might be deep in thought or some other explanation, I immediately leapt to thinking, ‘what have I done?’ and what was he going to do in the way of negative reactions. Not long after we got together we were on a beach and he had a kite that he was flying. He then asked me if I wanted a turn and I said that I would. He held the kite up for me and I just couldn’t get the hang of it and after the second or third try, the kite hit the ground. As he bent down to pick it up, I saw him frown and burst into tears, much to his surprise. I had a ‘conditioned response’ and said to him that I though he was going to get angry with me. He, of course had no thought at all of doing so and after talking it through we were okay and he understood – a least a bit – what had been happening for me.
There is an experiment that illustrates this response it’s worth having a look at and it is often referred to as ‘Pavlov’s dogs’ https://www.simplypsychology.org/pavlov.html.
Now, you may be wondering why I am talking about these things in this blog and rightly so. This life we lead with Parkinson’s can certainly have some rough patches and for some there exists a power imbalance where the person with Parkinson’s relies on the carer or their partner for everything. The carer can enter a world where they respond to situations in a way that can be unhealthy for both the carer and the person with Parkinson’s. The actions of the person with Parkinson’s over time can lead to a conditioned response by the person in the role of carer. This response initially may be a positive response to the needs of the pwp, but for some as carer stress becomes part of the equation, the response can become unhealthy. For the person with Parkinson’s, the relationship may become one where they are almost wholly under the control of another – and this could also be formal carers – because their need may be high, they may come to accept negative interactions as normal.
This can be hard for outsiders to respond to for, as many have said, none of us really know what is happening in other people’s homes. But, this is the more negative end of the spectrum of the ordinary becoming unhealthy for both the carer and the pwp.
Even in the most loving couple, there is likely to come a time when carer stress can erode their health and they can become so accustomed to putting the pwp (person with Parkinson’s) first that they neglect their own health. They may not make time to see their GP for health issues and they can then become major health issues. I know, even now that my husband puts my needs ahead of his own and asks very little for himself. For me, I try to ensure that he has the breaks he needs to cope with the level of support I am currently needing due to my back injury while I wait for surgery. I hope that this will very much be a short-term situation and we can soon get back to a more equal footing in our relationship. The last thing I want is for his health and/or our relationship to suffer because of my needs.
My husband and I have had talks right back at the time of diagnosis, that I have said if either one of us becomes unsafe, then I will agree to going into a rest home. Being unsafe may not necessarily mean that I am falling but may be things like my husband not getting enough sleep. No rest from my demands as I become less aware of them becoming difficult and burdensome for my husband.
In a relationship that has spanned over 20 years and which has been a positive and supportive one, the last thing I want is for a life of stress and lack of sleep or support risks the relationship that I have had and it becomes less than positive. That it becomes normal and accepted that my husband is my carer ’till death do us part’
So, the familiar and the ordinary, far from bringing comfort can bring with it risk if there is no-one to support us on this journey.
My journey with Parkinsons 