Quick note: Throughout the process of detailing my journey here, my goal, above all else, has been honesty. I want to continue to be real and raw about this process. My goal of this blog was to reach those who have family members suffering from Alzheimer’s or terminal illnesses. I want to show people that you can continue to live and find joy in small things while enduring severe suffering and heart wrenching pain. That’s why I am here. I want to say again, in case I haven’t made it clear already, I’ve learned a few things that have really helped me to make it through to this stage in this journey and if there is any way that I can help you in your journey, please let me know.
I think I have finally settled into this new stage of Alzheimer’s. It is not a comfortable place to be but I think I have come to terms with it. As a reminder, last time I visited my family (caregiving dad and mother who is sick with Alzheimer’s) in Hawaii we determined our PLAN, our plan of what we will do when my mom’s body finishes her fight. We decided upon details of how we will tell each other the news, how we want to find out and what we will do immediately following. We also had to plan my moms funeral and make decisions for her, decisions that she should have been able to make for herself. It can be days from now, weeks from now or even years. There is no way of telling.
I want to caution to those who may not be in a place where they can hear this, I’m going to speak below about some of the ways Alzheimer’s patients can die.
There are a few ways that people die from Alzheimer’s. It’s important to keep in mind that the disease itself does not kill you. Instead, it deteriorates your brain cells and causes your body to slowly stop working. The ideal way would be for my mom to pass away peacefully in her sleep. However, that is not always the case. My mom may stop eating and become weak and susceptible to infections. She could become unable to swallow or cough which could cause food or water to get in her lungs and develop pneumonia. She could choke on her tongue and suffocate. Please know that this is not easy for me to type. The least ideal way would be that my mom’s organs stop working causing her to suffer in pain. My dad and his team of hospice nurses have a plan for all of these scenarios. The main goal is to eliminate suffering so that she does not leave us in pain. My dad and the nurses have morphine in the house to use when something starts to occur. There is no resuscitating because there is no hope of recovery and there is no way to cure my mom of this awful disease.
Out of all of the stages of Alzheimer’s, the end stage is the most unique. It has given my dad and I a chance to look back over this journey and feel immensely proud. We are proud of the choices we made in the early stage: to care for my mom at home and cherish the moments when she knew who we were. We are proud of my decision during the middle stage: to continue college, stop being a caregiver and try to go on living my life. I am the most proud however, of how my dad has dealt with the late stage or end stage: moving to Hawaii, building a house suitable for a wheel chair and living out his marital vows, ti’l death do us part. We are going to see this through together as a family and because of that we feel immensely proud.
