It is important to me, that I enjoy life here and now and don’t dwell on what might happen in the future too much. After all none of us have a crystal ball to predict what the future holds, with or without any kind of diagnosis. However, for me there was a conversation I felt that for me, I wanted to have. My husband was reluctant to enter into any discussion of what ‘might’ happen, saying I have a good 20 years or more before any big life changing decisions might be needed. However, I have seen first hand how hard it can be both for the person with the condition and their husband/wife/partner when a change in living arrangements such as residential care is needed. So, for me personally, I wanted to have the conversation about this, while I am freely able to do so and express my wishes. I know my husband loves me dearly, he proves it every day in many ways. I know he will give me all the love and support he can for as long as he can. But I wanted him to know this, that if I become unsafe at home, if he cannot manage to look after me – even with a package of care – it is OK if I need to go into care. I know he will do the best by me and if the decision needs to be made, it will not be an easy one. But, I want him to know it’s OK. I want my children to know it will be OK and it won’t be because he doesn’t love me, quite the opposite. It will be because – if it happens – he wants the best care for me and to keep me safe.
Now that I have had the conversation, like Life Insurance (we don’t want to think about that either really) I can tuck these thoughts away and forget them for now. I feel free to focus on loving and living life, whatever that looks like with the man I love and my beautiful family.
As we say in New Zealand, ‘Kia Kaha’ – be strong.
My journey with Parkinsons 