Why do I have to take care of things? Why didn’t my loved one do something to prevent this, or to prepare for this?
Frustrated in Ohio
Dear Frustrated in Ohio,
Historically, there has been no way to prevent a regressive degenerative brain disease. Nowadays, we have suggestions about prevention through diet, exercise and brain activity such as Sudoku or crossword puzzles, or the Alzheimer’s Association’s Maintain the Brain program. Despite all this, many people are reluctant to prepare using any of the modern-day tools we have to combat Alzheimer’s. It is my opinion that one reason for this is the fear of admitting something could go wrong for us in the future – or that something could already be wrong. It is as if ignoring bad things that might happen will make them go away, and acknowledging them will make them come true.
You don’t have to “take care of things” alone. You could give the choice and control of decision-making for your loved one to another relative, or even to a trust officer or a guardian. While that is an honest and even factual answer, it seems a very inhumane one. You have either been appointed by your family members or the responsibility has defaulted to you because no one else will take it. Good for you for being angry! While you must still safeguard the feelings of your loved ones, making that statement out loud (even to yourself) will help you maintain your emotional well-being.
The Ten Absolutes for Caregiver Decision Making compares the Alzheimer’s caregiver’s journey to the grief process best described in the book by Elisabeth Kubler-Ross, On Death and Dying. Few people are keenly aware that Alzheimer’s disease is a terminal illness so this book is very appropriate. In the stages of grief, the first one is denial, which is yet another reason your loved one did not prepare. The second stage is anger, which is why I commend you for the ability to express your anger instead of bottling it up. Now that we understand why there are strong feelings involved in this process, we can hopefully move forward in determining what the next steps should be so you can navigate this journey with the best outcome for everyone involved.