The Journey…

Nov. 29, 2018 – little did I know that morning that this day would forever change my life and my family’s life.

Many years before, my grandma – my mom’s mom – was diagnosed with Alzheimer’s Disease in her early 80s. I was a young wife and mother at the time, so I was very busy with our young new lives, but I was also very aware of the care and time my mom spent with her parents. Eventually, my grandma was moved to a nursing home (unfortunately this was before memory care facilities were available), and my grandpa was moved to an assisted-living facility across the street from her. We watched and loved my dear grandma as she became more and more confused. A clear memory I have of her is sitting in her wheelchair as she just giggled while you tried to talk to her. This is also when I noticed my mom becoming very worried and consumed with the idea of herself falling victim to this horrible disease.

Nov. 29, 2018 – the day this fear of hers was realized as we (my dad, myself, and my daughter, Betsy – also a nurse) sat in her neurologist’s examination room and heard him tell us that my mom definitely had the beginning of Alzheimer’s. This had been a long and difficult journey to get to this point, and although we were not completely surprised, it was breathtaking to hear the words. Later that week, I would show my mom a picture from that day of my dad and I walking in the parking lot holding onto my granddaughter’s hand, and she just cried and said, “That is the day I got ‘the news’.” This just broke my heart.

Looking back, we were able to see some of the beginning signs. I don’t know if we were trying to ignore them or were just too busy to stop and realize, but I now see them: my mom leaving doors and drawers open in her kitchen when we were there for family dinners, my mom writing notes around the house as reminders about words and names, the numerous items around her house that she seemed to be collecting or hoarding (toothbrushes, toilet paper, cleaning supplies, etc.), her becoming a little more anxious about upcoming dates and events, as well as numerous other little signs. Although there were many signs, she also did a very good job at staying the same great wife, mom and grandma she had always been. I cannot imagine how hard she was working to keep things all together.

After her initial diagnosis, her life and ours did not change a great deal. We were more aware of some of her difficulties, but overall, life continued to move forward. We also worked hard to try to keep “life” as “normal” as possible for everyone. I remember that Christmas, still spending Christmas day and dinner at my parents’ home with our family there, but that year we took the ingredients out to her house and my daughter and I helped Mom with all of the cooking – something we have only had to assist with in the past.

I was NOT at all prepared for the changes that would occur in the next year! I am an only child, and I am fortunate that my husband and I live and work in Litchfield where my parents also live. The pain and stress this horrible disease places on a family is indescribable! One of the first BIG changes came when we made the extremely difficult decision to take my mom’s keys away from her. My mom was a very independent and “busy” woman who loved to be running around and doing things for her family and others. Taking her mode of independence away from her was devastating for all of us! It was also life-changing for myself and my dad. Something I regret as I look back was not reaching out to available resources and help. If you are going through this, please reach out and get the help that is available for you and your loved one!

Last year is pretty much a blur as we rode the ups and downs of this disease. I am a teacher, and thankfully my principal and superintendent were very understanding about my circumstance. I missed over 20 days of school last year because my mom and dad needed my assistance. Finally, on March 15, the day everything closed down in Illinois, out of desperation to keep my mom safe and healthy and my dad healthy as well, we made the difficult and heart-breaking decision to move my mom into a local memory care facility. Visiting through her window and watching her confusion and sometimes anger at what is going on is the hardest thing I have ever done in my life. I have never felt as heartbroken and helpless as I do watching the woman I love, cherish and treasure diminish before my eyes without being able to do anything for her.

Important lessons I have learned through this experience:

1. We need much more support and education for Alzheimer’s patients and their families.

2. When I retire in 4 ½ years, I will definitely work with our local memory care facility to help support families of Alzheimer’s patients.

3. Cherish every minute you have with your loved ones. I cannot even begin to count the number of times I go to pick up my phone to call my mom about exciting moments, sad moments, or times I need to talk through something, and I can’t do that anymore.

4. People can stand up and state they are cancer survivors – this is NOT possible with Alzheimer’s – there is no cure.

5. We need to be diligent about finding a cure for this awful disease.

6. Love and support those you know who have loved ones suffering from Alzheimer’s – deserting them in this time of need is NOT what they need. Yes, you may not know what to say or do, but trust me they just need you to be there for them.

7. Having said that, I would NOT have survived last year without the love and support of so many who HAVE stayed by our sides – my wonderful husband, two loving children, an understanding and supportive son-in-law, two adorable grandchildren, amazing friends who have been the rocks I needed, and aunts and cousins who have filled in as the sisters I don’t have. There are not enough THANKS or LOVE to send you.

Mom, I love you and miss you every day. What this awful disease is doing to you makes me so angry! Thank you for all you have been for me and my family – we love you! -Amy