She has been gone almost two years this January 2020, but I miss her as much today as the day she passed. My Mom and I had a special bond and yet there were parts of her that she kept secret and I longed to learn more. I have since heard stories from her siblings of some of the difficult days she faced growing up in rural Colorado. She had a hard life and somehow always kept a positive attitude and gave so much grace to those around her. I hope that through this blog I can honor her memory with some great stories of how she lived her life so unselfishly and share some of the lessons she taught me. I owe a big part of my successes in life to her because of the personal sacrifices she made in her life and the time she invested in me. She was not a saint, but it would be a difficult task for me to come up with many shortcomings. I will always feel lucky to be called her daughter.
She died after an eleven year battle with Frontal Lobe Dementia diagnosed as Primary Progressive Aphasia. She knew her closest family members until the end, but she could not walk, talk, feed or care for herself for the last four years. It was a journey that I wish on no-one and having been by her side through it, I witnessed what an incredibly cruel disease dementia is and what it takes from our loved ones. I have a passion for supporting the work to find a cure, but I also find my heart breaking for those who are living with it now. If there is a way I can support others through this journey, I will. Even though there are sources online to learn more about the disease, I had no idea when and what the next stage would look like. With this blog platform, I hope to share with you some of the realities that we faced on a day to day basis. If you have any questions, I will try to answer them or lead you to someone who can. If you do an internet search for PPA Support Groups, you should be able to find ways to connect to others either online or near you. I was a part of a forum online which was helpful when I had questions and others in the group had experienced similar issues. I also feel strongly that the person is more than the disease even when there seems to be no way to communicate. I will share with you how I stayed connected with my Mom and how I worked with caregivers to see her as more than a dying patient. She was loved by all the staff at the skilled nursing center and I too gained support from them. Whatever you are facing today, I pray that you too can find another kind soul to help you through it and that each day will bring you memories with your loved one to cherish. Thank you for following my journey and may it help you through yours.