I was reading a post that was on a Facebook page for people with Parkinson’s and their carers/family/supporters. It is a very useful page, because it gives different perspectives and often the discussions are really useful, those of us “experts” on Parkinson’s can share our experiences and help each other. You will note that I put experts in inverted commas. I have often felt that, although there are medical professionals who support us in various stages of this condition, that the real experts are those of us with lived experience. There is no book, no study, no course that can better inform how to best manage my Parkinson’s or your Parkinson’s or your family members Parkinson’s. Of course they can play an important role, but it is the depth of knowledge about who the person is and has been historically that informs the medical professionals.
So,on the Facebook page, there was a woman whose husband of some 40+ years had become aggressive and suspicious and angry. She stated that the behaviours he was exhibiting were completely out of character and had been building for the past six months. She was seeking advice as to how she could help him and ultimately preserving their marriage. She stated that she was unsure who might be able to assist. There were various opinions offered to this woman, who sounded very much like she was desperately seeking help and didn’t know where to turn.
Now, it is important for anyone reading my blog, or listening to my podcasts that I was a Social Worker for 20+ years working predominantly in hospital. My parents also had Parkinson’s, so my perspective has a dual aspect to it, because of those two things. In fact I have a three way perspective as a health professional, a person with Parkinson’s and the daughter of two people with Parkinson’s. Given all that, the opinions and possible advice I may put on my blog or podcasts are just that, my opinions. I simply seek to help in any way that I can and that is why my blog and podcasts are so important to me. They help me to process and deal with my own thoughts and feelings, but I also hope to help others along the way.
So, I replied to her as follows:
“I agree with those who recommend that you talk with his GP. Did this new behaviour come about over time or did it seem to happen quite quickly? I know when I was working as a Social Worker in hospital that sometimes patients would show confusion, aggression and sometimes hallucinations that came on suddenly and were out of character. The Doctors’ first thing they would do would be to check for any kind of infection, particularly a bladder infection. For people who are elderly and/or could be considered frail, it is surprising how something as common as a bladder infection – from one who has had many – can cause quite significant and concerning symptoms such as those you outline in your post. A trip to the GP would – I feel – be an opportunity to try to get to the bottom of these issues, which may entail a hospital admission to run tests and to observe the behaviours and see if there is anything treatable that can help. Certainly worth a try. Another thing to consider is whether you – at any time – feel unsafe. Even though you have had a long marriage and would know each other very well, changes such as those you describe can be devastating. If there is anything at any time, day or night that makes you feel unsafe, I would recommend a safety plan. One lady I worked with had a good friend and neighbour who gave her a key to her home. So, any time she might feel at risk, she could come next door and be safe while trying to get someone to help them both. As long as he would be safe – for a short time by himself – making sure doors are locked and he is not in immediate danger, I’m sure your husband – when he was not in his current presentation – would want to know you are safe. If this continues, I would certainly seek GP assistance to try to get to the bottom of things for both your sakes.”
I am a person who likes to plan and be organised. I know that being able to plan our lives with something like PD can be very challenging when we don’t really know what to expect. Of course, all of us are different and so our experience of Parkinson’s and it’s effects will be different.
One thing that gets me through this Parkinson’s life, is that I tackled the hard questions ahead of time so my husband and I could get those discussions done long before any action needs to be taken. As an example, we lived in a lovely two storey home with our bedroom upstairs. I knew that at some stage we were going to have to move into a single level dwelling. So, we talked it through and my husband agreed that we could sell our house and find one that had a bit more future proofing. Things like a toilet you could get into with a frame. Wide hallways and doorways in case a wheelchair was needed. Access into and out of the house that was safe and accessible. I wanted to make the move while I could actively engage in looking at houses and choosing where our next home would be. If I had waited till the stairs became too much or other issues with the house, the situation could be that I wouldn’t be able to be actively involved in viewing new properties, packing and unpacking and all that moving entails. So, ultimately we did just that and bought a lovely house in a quiet street with great neighbours and lots of community spirit.
The other thing that my dear husband was reluctant to discuss was the issue of residential care. His response when I brought up the subject of my possibly needing to go into residential care at some stage was very reluctant and again he felt it was far too soon. However, I needed to know for myself that I had discussed this with him well ahead of time. I said to him that at any point along this journey, if either I felt unsafe or felt that he was unsafe in trying to keep me at home, that it would be OK for him to arrange for me to go into residential care. Again, he said that this was far too early to even think about. My thinking though, is that I have had the conversation, I have consented while I am of sound mind and can reason through the need for this decision to be made. So, even if at the time I am not in a cognitive state to agree, that I want him to think back to our conversation and know that it is OK.
With all this planning and looking ahead, it may seem that I am looking too much into the future. I don’t have a crystal ball to know what the future might bring, but also have an awareness that this is a degenerative condition. The thing is, with me, that once I have had these discussions about the future and what might need to happen, I pack them away and focus on the present, on the here and now. I used to liken it to taking out Life Insurance. Something many of us do as an adult decision and a sensible thing to do. However, I am sure many of you would agree that it is not really a pleasant thing to do, as ultimately it is about what will happen after we die. So, for me, when you take out Life Insurance, you have done the sensible thing and then you file it away and forget about it and get on with life. The same is true with the discussions I have had with my husband. We have had the discussion and now it is packed away in my brain, tucked away in a back corner for when it is needed. When these conversations had been had and tucked away for future use, I can then focus on the here and now and getting the most out of life while we can. We certainly try not to put anything off that we want to do. None of us know how long we have got and for me my diagnosis instantly meant that I was determined to make the most of my life with my husband and also was more conscious of spending quality time with my family.
This has been a very long blog today, but I feel it is important to think about and talk about the ‘tough stuff’ sometimes.
Hopefully, the really tough decisions are not looming large in your lives now. But, if they are I hope that you have the support and understanding that you need.
My journey with Parkinsons 