I found a new show recently – “Mary Kills People” on Hulu. It’s about a nurse running around helping patients commit suicide when they decide they can’t take it any more and don’t want to suffer through the future ahead. In the show they talk about the fact that Switzerland allows doctors to help with physician assisted suicide.
The question frequently comes up about why we make family members suffer, unable to communicate, not able to recognize us, unable to move their own bodies – when we treat an animal with a life ending disease in a way that seems more humane. I’ve thought about it as I watch my dad waste away. No longer able to recognize us. I remember the times he asked nurses to help him end it. I’m fairly certain he wasn’t joking. The thing is in my dad’s case it’s easy to see he’s being tortured, he vocalized what he wanted several times… BUT if it was really a thing like in the show how do you decide? How do you separate the family who have just decided they don’t want to pay for more care, or that their family member is taking too much of their future inheritance. That’s really why it can’t happen….
A friend told us about families that just drop parents and spouses at their hospital with no name and leave them. They can’t take the cost, the worry, and all the things that go with being responsible for someone in care anymore. It’s like being responsible for a 200 pound baby. What really makes it sad though is that when you look at this 200 pound baby what you really see is all the memories of the person that was, and though with all your heart you want the person to be who they were before whatever awful disease has eaten away at their body and mind…. it can’t happen. Personally I think it has to be easier for people whose family still have their mind, but I haven’t been in that position…
To help my father feel more comfortable we’ve decided to go with Hospice. He no longer recognizes people, no longer talks, can’t eat, can only drink thickened liquids, he can’t even hardly move on his own…. Hospice will help with pain management and anything else they can do to make him more comfortable. Hospice also works with families to help them deal everything. As much as it seems like it should be easier to make decisions in a situation like this… and like at this point it’s been accepted that loss is inevitable – > There is no magic solution that can make a person with dementia or Alzheimer’s better….. It’s still stressful. You do want the person back and you still have the memory of what you assume is locked somewhere in their mind that they can’t get out anymore.
I’ve had ‘friends’ message me with the, if you just give your father the right diet, he can be ‘fixed’. Then there are the posts from people that think that any post about the difficulties dealing with dementia and Alzheimer’s are a betrayal to the family member and you should just be glad that you can spend time with them…. and finally there are the friends that have recently lost their parent. The friends whose parent died a quick unexpected death or died from something like cancer where they got sick, fought it, the friend stood by their side though treatment and they passed away. I do feel for them, but it’s hard to find the words to respond when you are thinking about the fact that you know your own parent would have preferred to go quickly and unexpectedly. Really though you are thinking you are stuck in the limbo, you are in the group of people that still have their parent… but what you really have is half your parent.
Additionally friends are interested at first, they want to know how your parent is doing… but too much and it drags them down to, so the stress is all your own. It’s the same as a chronic illness. The more you talk about it the less friends and support you have.
We are just beginning our hospice journey though our dementia journey has been going on for a while. It may or may not be a long one, but I think it will be helpful, for all my family….