A fellow Trust member and I met at a local community radio station yesterday to record a segment for the Trust we belong to. After the recording was finished, we had a bit of a chat with the interviewer about a person she knows who has just been diagnosed with Alzheimers. It seems that his family, as soon as he was diagnosed were trying to push for him to go into care. Part of that may be the relationship he has with his wife, but it all feels a bit of a knee-jerk reaction.
I know that when I was first diagnosed I had a crisis of confidence in those first few weeks, wondering if I could continue to do things that up until the diagnosis, I had not considered would be an issue. For the gentleman with Alzheimers recently diagnosed, I am sure he will be going through his own process and wondering about what he can/should/might be able to do now. To have his family pressuring him almost immediately to go into care, will certainly not help his self-esteem and confidence. For me, it is important that those of us who are in the early stages need positivity and to focus on the things that we can do and the contribution we can make. This may be a contribution as a family member, group, church or work environment, but whatever it is I feel it is important to emphasis our positive contribution rather than looking negatively upon us as if the diagnosis automatically strips us of all usefulness.
Here is an excerpt from a very early blog of mine, titled ‘Confidence’
“It seems from Day 1 in some ways my confidence has been affected. Suddenly, there seemed to come upon me doubt about my abilities in a number of areas.
Is my voice getting too soft?
Do people notice when I lose the thread of a conversation?
Can I think through a solution to problems at work like I used to?
Can I walk up those hills still?
I don’t know why, but my diagnosis has made me doubt myself, yet it is only early days. I need to remind myself that I am still me and still capable in many ways. I went walking in the hills with my husband yesterday. The walk has some reasonable hills which – while my legs warm up – have always been challenging. However, yesterday I found myself thinking, ‘now I have Parkies can I do this?’ in places it took a bit of positive self-talk to get up those hills. Yet, only a few months ago I would have just put it down to needing to warm up and get into it.
I think my mantra should be ‘Parkies is not an excuse’ and get out and get on with it and keep doing or the danger will be that a lack of confidence will rob me of these opportunities way before it is necessary!”
I’m pleased to say that I have moved on from that mindset and very much celebrate and appreciate what I can do and don’t focus on things that may require a bit more thought or consideration. Parkies may effect me in a number of ways in different environments, but I know that I can modify how things are done to minimise any adverse effects. I am probably more organised and take more notes than previously. I will ask for help from colleagues more readily. I will be honest if I am feeling that I have too high a workload. All these things are designed to keep me going in my job and doing so effectively.
One of the things I notice, which may be a Parkies thing, but has gone on for a while is that it takes a bit longer to process when there is a lot of information coming my way. Every morning we have an 8.30am meeting which runs to 9.00am. We talk about our patients and work out a plan for the day for the team. Often there are Social Work things that come up that are highlighted for our assistance.
I have for some time got into the habit of having a coffee break at 9.00am, by myself in the cafe. During this time, I will do the daily Wordle game – great for the brain – drink my coffee and just have 10-15 minutes away from the busy ward. I find the jumble in my head of all the information that has come my way in the meeting, starts to clear and because I am on my own I can process and plan so much more efficiently. Once I have had my coffee, Wordle and sorted through in my head what to do, I can get back to the ward and work efficiently. I know that if I tried to go straight from the meeting to seeing patients, this would not work for me and I would be much less focussed and effective.
I feel it is important to know myself and what I need to function well and effectively. Us Parkies people can still be effective and valuable employees, but we just may need a bit of understanding as we process how best to incorporate ‘the Parkies effect’ into how we function. Doing things slightly differently perhaps and being honest with those we work with and seeking assistance when needed can go a long way.
So, we can still lead a positive and useful life, but may need a bit more collegial support or family support than previously and to me that’s perfectly OK.