Alzheimer’s Disease – Natalie Nicole Blue

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.

I received this email and these photos on Monday which sent my feelings pouring out of me. My Dad and I rarely cry when talking to each other because we have to try to be strong but this week I sobbed to him on the phone. We are coming to the end of the road. The end of our journey and the end of our time with my mom. And to be completely honest, we don’t know what to do. Below is an update from my Dad and how he continues to live through Alzheimer’s.

****my dad asked me to proof read this for him and fix any grammatical errors but I think there is beauty in this raw copy. Please forgive any mistakes you may find and understand that this was probably written with wet, foggy, tear filled eyes.

Caregivers are such special people. People that have the endless compassion and the empathy to understand that we all are on the same path, and we all have the same destiny – Sadly some’s destiny reaches the end of the journey before others.

As a Caregiver I learned I needed to dig deep into my mind and heart to find the understanding, find and open the selfless patience, wrap my arms around the meaning of empathy, and most of all confirm my complete acceptance of this is what it is. Make the best of it … Why not ?

Family is so so so affected – Hardest part of this Alzheimer’s Journey is for the Family – After acceptance of that “It is What It Is” The Family must continue on trying to understand how to continue, stay one step ahead of the unknown. Who will step up to the plate and how to be in charge. The reality of deciding what is the best avenue to take for the loved one. I truly believe that the one on one care given by a Family member is the best way to go.

I learned how to try to keep 1 step in front of instead of reacting I keep thinking of how to handle what is coming in the next pages of the book. Being prepared to continue through the chapters of our journey is hardest as the thought process turns toward the time consuming task at hand of taking care of the loved one and leaving little time for the Caregiver day to day needs and cares.

Faith in good sayings have helped me tremendously – I make my own uplifting sayings about this journey that enables me to strive toward them. Gotta love – ” Smiling makes me Smile ” It is so true really I smile driving around all the time. So Blessed – And – ” It is not what happens to you – It is what You do with what happens to you ” Get out of here – That’s one saying for sure to live by.

Country music for me is still and was a great escape for my mind to wander and smile. Most of the Country songs have enjoyable lyrics about quite a few silly life’s situations and are uplifting.

In life I have been Fortunate Not Lucky – The difference is I choose my path by opening doors along the journey. Some doors lead to other doors. Most of the time I didn’t find doors just walls. These walls needed to be climbed or gone around to find the new door on the other side. I always tried to keep moving forward looking forward not in the past. And you have to find the strength and nerves to walk through doors with-out knowing what is beyond.

I am so Blessed by being able to find the resourcefulness, find the ability, let out the ideas instilled in me of keep on dreaming – Dreaming is a very strong way to for me to keep striving and moving on. And accepting that tomorrow will be another great day waiting for me to enjoy this journey.

I have had to file a lot of my memories and learned to go back when I choose to. No need to go through negative times. Uggghhh so hard to go back in the file drawers of memories. Don’t get trapped in the pity party “that these memories are now only mine” because your loved one who helped create and share so many of your life’s memories for so many years doesn’t remember. They can’t laugh, enjoy and share them with you anymore. It gets better in time but will always be there. Shut that file drawer.

Be honest with yourself – This is happening and this is real. So pull up your big boy pants and figure it out so it doesn’t figure you out first. If you get knocked down – dust yourself off and get on with living.

Attitude is self-controlled. I prefer to see the good all around – I made a decision many years ago to be positive, to be proactive and to always keep moving forward … I learned it is easier to live in the now.

You have to learn complete acceptance of “Make the Best of What you Have” and “It is what it is”. This new and always changing journey has no road map. Doctors don’t know – Nobody knows. All I know is that I did the best I could today and will do the best I can do tomorrow. That way you can feel good about yourself.

Sure things don’t always happen as expected but by moving through them with the mind set of “Whatever” you start to understand what really matters in your life. Amazing how that will let the Stress Go – As what is it that really matters in your life.

Get up every day on the right side of the bed … Do the best you can do and then enjoy you did the best you can do – So if what if you only had time to get 25% of it done. That’s 100% of 25% done. Smile and know you did the best you could.

The Responsibility shouldn’t be a burden. Turn your thoughts around and think of how well your loved one is doing. As it really is happening to them not you. Empathy leads to acceptance and acceptance leads to devotion and devotion leads to unconditional love. Unconditional love leads to a much easier journey. This journey is happening, it is real and it is now a major part of your life. Embrace your journey by knowing you would want the same care given to you if you were in this position. With time we all will need the help, empathy and compassion of a Caregiver … Special people indeed.

Caregivers have been chosen for the special job of comfortably helping others transition to the other side of the rainbow. Caregivers are instilled with the love and have found enjoyment by help others.

I have learned when I feel I have way too many things to handle I end up prioritizing and move forward with completing my highest priority items – Because I know I can’t get everything on my shrinking plate done – And then there is what pops or poops up keeping me on my toes and testing my reaction. Ahhh another saying ” Whatever ” I understand the true meaning. Situations happen that are completely out of my control. Could I have done something to change what just happened? If so then learn from it and maybe it was my fault for no thinking ahead to have been able to make it not end up this way. Not feel guilty but learn from it. Really now almost everything washes up – ( well maybe not everything – we can talk later on that ) Most things clean up.

This life journey of yours is not a dress rehearsal – So best way to go is accept, strive to enjoy the ride, look around there is beauty just gotta find it. Smile as smiling will make you smile Come on now smile … Ha see I told you …

I believe in the idea of “Find and focus on the good surrounding you” Good mind set attracts good people. Negative mind set doesn’t attract anything good. Who wants to be around someone who projects poor me, feel bad for me. No one will ever know what you are going through until they have to face the same journey. So get over yourself, your situation. This is not a dress rehearsal. You will never get yesterday back again – So make the best of today. Always Remember:

“It’s not What Happens to You – It’s What You Do with What Happens to you”

Stay steady on the path and look at all the abundant possibilities the Lord has made available for you. I am sorry that this has happened to you. Just you don’t feel sorry it has happened to you and this long Journey will be easier.

John H

Tag: Alzheimer’s Disease

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