Creating life with words: Inspiration, love and truth

My last blog was definitely a hot topic… so much so I am writing a blog-reply today. I think I’m glad to have raised it again, but right now I do wish I was a Lion. They are much braver than me and I fear I will need to be very brave if I continue to raise this particular topic. A young blogger friend of mine had her sister write as a guest author earlier in the week, and was paid what I thought to be the ultimate compliment in being written about as a Lion, one that loves and protects, no matter what. Today I received a beautiful card from a special Aunt, with a kitten on it saying I wish I was a Lion. The synchronicity in my blogging world and life continues on, weaving its perfect magic.

Jeff, I am grateful as always for you reminding me there is another way to view things. Your wisdom and words have ensured I don’t forget my loved ones are in fact being cared for in the best possible way currently available by staff members that do truly care. Robyn S, I know also where you are coming from, and you perhaps more than Jeff and I see the reality as you are working in the field every day. Carolee1945, I feel you mothers pain, and understand how she can feel like she is locked in prison, even though she lives at home. For me, having dementia feels like I am in prison, with absolutely no way home. Worrywarts, I am glad you found it thought-provoking as thinking about our thinking is how we all grow and learn, and perhaps even change the world. My husband did not respond publicly, but said he thought it was a rough read. It is a rough read, even rougher if you are travelling along it personally. Jodi said quite vehemently today after reading it here with me, no-one knows what dementia is like unless they are living with it, or have been looking after someone they love with it. I think we are all right, and all wrong, depending on which position we take, or how we feel on a particular day. Or worse than that, how our loved ones in aged care settings seem at the time we visit. If they appear calm or smile at seeing us we think they are okay, and therefore it is easy to forget they are locked up. Somehow this seems to make it easier to forgive ourselves for leaving them there. Of course they smile if they remember who we are; they are terribly lonely, and yearning to see their loved ones and go home.

Regardless of some outrage, I do still feel that we as a society are not properly meeting our obligations regarding treating the elderly or sick or those with dementia in high care residential settings. We are ignoring basic true human rights. Constantly I ask myself would I want to be kept alive this way. I don’t know about active euthanasia for me, but I do know that if my quality of life becomes irreparably impaired, I won’t want any medication or treatment other than pain relief. No, not even antibiotics for a simple case of the flu. No blood pressure, blood thinning, or bloody-anything else medication to keep me alive without real quality of life. I don’t want to be kept alive for someone else to feel good about visiting me every week, even my beloved husband or kids, if there is no quality of life left. That may seem very selfish, but that is how I feel today.

Somehow I want to help to bring in changes, not offensive or outrageous ones, but rather ones that help to find a solution to stop us locking up our loved ones, or at least changes that stop them feeling like they are locked in prison. It is the model of care being used that is inadequate rather than the actual hands on care. Keeping my father in law medicated for anything other than pain now seems wrong, when I know he hates the life he is currently living, and has stated clearly many times he feels like he is in prison since moving from his own home. It just feels like the wrong thing to do. Why can’t he take back control and not accept medication, and as his legal guardians, why would it be wrong to make this decision for him? His words about prison mean I personally have no option but to face up to the reality of what he says he feels. Without his persistent and continued expression of his own reality, I may never have seen it this way. I wish I didn’t see it this way too, as for now, I can’t see a solution. But I will continue to think and write about it, and perhaps together we can find an acceptable solution. I wish I was a Lion, brave and strong and protective… fighting until the very end.