The symptoms of dementia seem to be regularly washing some of my abilities away, as if at sea, and many of them never quite return. These changes mean I am constantly revising my Bucket list, as some of the things I once wanted to do, are no longer dementia friendly, and some things no longer have the same meaning. As I sat with my husband this morning waiting for him to go into the operating theatre for a Laparoscopic Hernia operation, I realised there are many things I now feel like I am unable to do, and inside my heart I feel like I am failing him, and my boys. We had to catch a taxi there at 7am, as I can no longer drive. My son had to collect me at lunch time to bring me home, as my husband probably will feel like sleeping all afternoon and there is little point me sitting there all day. Then my son has to pick me up to visit him tonight, and bring me home. If something went wrong over night, I would have to catch a cab again, or call someone to drive me in. If something really serious went wrong, with long term health implications, then I would need to pay for assistance in many areas, not just with driving. If my kids became seriously ill, then I would have to rely on others to help me help them, and at some stage, to take over from me if (when) I become incapable of helping them. I may not be able to help them with their grandchildren, in fact if I am alive, I may not even know who they are. Not so long ago, I thought I would be the one caring for others until my own old age.
With my dear husband recovering from surgery, this blog shouldn’t really be all about me (??!!) but as I face up to the reality of my new world, it is hard to ignore. And as the symptoms of dementia impact not only me but many others, I guess it is normal to have these feelings as new symptoms appear for the first time, or old ones worsen. Today I have also spent some time with a girlfriends husband who has just had 5 weeks of intensive radiotherapy for cancer, and who is facing yet another revision of his own bucket list. We talked about how when you first are diagnosed with a terminal illness, your Bucket list has many of the greater travel or ‘to do’ dreams on it, and then as you heal, or go into remission these things fade a little. If you come out of remission, or are diagnosed with another terminal illness, your Bucket list is reactivated, and moderated, and as you face up to worsening symptoms of a terminal illness, or even impending death, this list fills up with more personal goals and dreams, like spending more time with your partner and kids, or building things in your shed, or writing a book. Being on the illness train is lonely, and is heightened by the fact you cannot ever get off if you are the one who has been diagnosed with a terminal illness. Your family and friends can get off the train, even if only for a while, as they are not ‘living’ it in the same way that you are. They may have a dark cloud about their futures without you in it, or their futures living with the changes brought on by your disease, but it is not their bodies or minds that are being impacted by disease and impending death. It might be the shared ‘couple’ dreams they are losing, but not the ones unique to them as individuals.
The other thing many of us facing serious health issues want to talk about is dying. Yes, our own, and what it means to us, and how it impacts our thinking. The way we want to alter or modify the way we live often changes, along with our Bucket lists, and it can be confronting for others. It might be easy to think we should and would want to only think about the possibility of surviving and beating the diagnosis, but given the diagnosis of a terminal illness, once you get through the stage of grief of non-acceptance to acceptance, it is normal and healthy to want to think and talk about it. Being born is a death sentence, and some of us are ‘lucky’ enough to be given a bit of time to get used to the idea, and to get our lives in order. This opportunity also gives us the chance to not only write our Bucket list, but to achieve some of those dreams and goals. When I was nursing I met so many people who were dying, many of them with little notice, and they almost all used to say they wished they had more time to get the things done they had always been meaning to do (like a Bucket list), as well as make plans for their loved ones, and their own deaths. I started this blog as a way of recording my thoughts and the very wild ride of the dementia train. It has been empowering and more importantly, incredibly healing for me, and occasionally informative to many others. Living is good fun. Death is okay. My great grandmother used to say, “You should cry at a wedding, and dance at a funeral”, her wisdom coming from her strong Christian faith, but also her belief that your real troubles start when you marry, and are over when you die! She, and my maternal grandmother have impacted my thinking greatly and are still my mentors even though they have been dead for many years. You live until you die, and I salute them for their openness and honesty with me about life, and about death.