I read a thoughtful post a while back about a family trying to decide whether to have their loved one who suffers from dementia inoculated against pneumonia, the ailment likely to ultimately cause the death of said loved one. What an eye-opener it was for me.
About this time my mom had emailed to inform my sister and me that she and our father had gone to see a lawyer about getting wills written. She added that my dad said he didn’t want a health directive, and asked about our thoughts on that.
My father has dementia. It is believed to be Alzheimer’s Disease, which is what his mother had when she died of pneumonia at the age of 83. My dad is 71 years old. His doctor has not told him that this is what he has, but at this point, it is likely impossible for him to grasp what such a diagnosis means anyway. An MRI two years ago revealed that his brain is only 75% of the size of a healthy brain. Twenty-five percent is just gone. How is that even possible? I don’t really understand it.
What I do understand is that he is increasingly unable to comprehend ideas and complete tasks that he used to be able to comprehend and complete.
He struggles for the words to name the most ordinary of things, he creates false memories, and he forgets basic rules like no left turn at a red light. He confuses his bank account with his retirement account, thinking to get cash from the latter rather than the former. He doesn’t remember conversations, so he gets angry believing we are not telling him what is going on. He says he has lots to do, and then he does nothing.
This is where we are now with the disease. It is hard to prepare for the unknown future that lies ahead. In response to her email, I asked my mother to please try to get Dad to create and sign an advanced directive about his treatment options near the end of life, including the uses of a respirator, feeding tubes, IV hydration, antibiotics, and CPR (all things listed on alz.org’s brochure about end of life decisions — and all things I hadn’t really thought about prior to reading it). A future in which we have to make decisions about these treatments is a frightening one to contemplate. I’m not sure one can ever be prepared for a future such as this.
Rings Inside a Tree 
Thanks for linking to my post. The brain atrophy you describe is more consistent with frontotemporal dementia, not Alzheimers. You may want to research that (it’s what my dad has, too). If he won’t sign an advanced medical directive, you need to sit down and ask him what his wishes are, and even more importantly, make sure you or your mom has medical power of attorney paperwork in place so that you can act on his behalf. I can’t stress enough the importance of this. Hang in there. If I can answer any questions, please don’t hesitate to ask.
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Hi Emily,
You’re welcome. So many of your posts have been insightful, and others are just a good laugh. I have started reading up on FTD as you suggested. Thanks for your other advice as well. It is so helpful to know of someone else out there who is going through this. I hope the hospice care your father is getting is keeping him comfortable. I’m very sorry for the situation you are in. There aren’t good words to express my sympathy.
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