Everyone has heard of Alzheimer’s disease and most of us have labeled someone with it due to their forgetfulness but recently I have seen Alzheimer’s in it’s advanced stages and know now more than ever that it isn’t just a disease that effects the memory.
A few months back, I was asked to listen in on a conference call with Dr. Jessica Langbaum, who is helping to lead some of the most exciting and innovative research projects aiming to prevent or even cure Alzheimer’s. I was writing a post on another site about Alzheimer’s research to help spread the word about Dr. Langbaum’s efforts in trying to find a cure. During the conference call she talked about her grandfather who suffered from Alzheimer’s and how the disease personally effected her family, he is the inspiration for efforts. Although she had told this story most likely a thousand or so times, you could hear the pain in her voice, she was still struggling with the heartbreak this disease causes. I felt sad for her and her family, as any empathetic human being would but until this past Thanksgiving weekend I had no idea how she truly felt.
The way my grandmother entered my life was just the beginning of a very long list of her selfless and thoughtful acts. She met my grandfather shortly after his wife and mother of his kids, left him and their 4 young children for good, never to be heard from again. His youngest child was 2 years old at the time and eventually became my father. She married my grandfather and raised his children as if they were her own and even stayed with them through troubled times, which from what I hear were abundant in their household.
One story of that time that speaks to her character is that she has always been an animal lover and could not bare to see an animal harmed in anyway but when money was tight she took a job at a chicken and poultry distributor. She has told me some of the terrible things she witnessed while employed there and when I asked how she could put herself through that, she simply stated her family needed the money and it was a job.
When her children were all grown up, my grandfather and her divorced. She moved in with one of hers sons and helped him raise his family. She would often visit us and stay for a couple of weeks at a time.
Every time she would come visit, she would cook the best meals I have ever tasted and cleaned our house as if the president was coming over.
She would always bring gifts for all of us kids and order a pizza the night she arrived. She was on a fixed income at that time in her 60’s but always insisted on paying her own way and offering to pay for others.She would babysit us kids while my parents went out and whenever their friends would stop by while she was there, they all called her Ma. She is a little Italian woman with lots of spunk and somehow carries around a larger than normal heart inside that tiny little body.
Even at 60 she could have a comeback for anyone that dared to take her on in a battle of the wits. She could curse you out in Italian or English and do it with class. She always had her hair done perfectly and would wear makeup before heading out. She wore beautiful high heeled shoes into her 80’s and could sing Frank Sinatra’s music like nobody’s business. She never missed a birthday or holiday, crocheted a baby blanket for every new child, made a bride doll for every new bride, and a toilet paper holder for every new home. She has been an amazing example throughout my life of what an angel on Earth would look like and a perfect role model of a true lady.
I adore this woman, I wish I had half the heart she does.
Fast forward to 2010, she came to live with my family in Illinois. Although we had talked on the phone at least every Monday for the past 10 years, I didn’t know how much her health had deteriorated. She was having mobility issues, vision loss, hearing loss, digestive problems, and memory loss among other things. I took her to a doctor who prescribed a medicine for memory loss. After taking it for several weeks, she was having so many side effects the doctor took her off the medicine, it actually seemed to be making her memory worse. We decided to seek a second opinion and the next doctor didn’t offer any solution to the memory problems but did say she believed my grandmother had Alzheimer’s.
Apparently, there is no cure, way to prevent it or way to slow down it’s progression, even though it is one of the top ten causes of death in this country!
Alzheimer’s disease afflicts more than 5.2 million Americans. It’s a devastating ailment that wipes out memories, destroys loving relationships among families, and finally robs people of the basic ability to take care of themselves and maintain personal dignity. Every 67 seconds someone gets the diagnoses that they have Alzheimer’s. Pathological changes will occur in the body before symptoms show and the changes in a persons brain with Alzheimer’s start 10-20 years before there are any symptoms.
As time went on my grandmothers condition got much worse and she needed around the clock care. My father decided to move her into his home because it was obvious that the stresses of taking care of someone with Alzheimer’s while raising a child was taking it’s toll on me. I felt extremely guilty for not being there for the woman who was always there for me my entire life when she needed help. I knew I was in over my head taking care of my daughter and my grandmother and when my dad offered to take her in, I felt a weight had been lifted off of me, I was relieved.
He moved her to Indiana, about a 4 hour drive from where we lived, along with her 2 birds Mario and Luigi. At his home she had her own bedroom which was already an improvement because at my home she was staying in my living room with hardly anywhere to put her things. His girlfriend was a CNA so she was able to help grandma out with most of her issues and I was able to speak with her on the phone occasionally. Even on the phone I could tell her condition was getting worse but I always was hopeful and would continue to tell her funny stories to keep her spirits up and pretend to not notice her inability to express what was on her mind. It had to be frustrating to her, trying to tell me a story and mid way through her mind just going absolutely blank. I felt terrible for her but some days were better than others and I let myself believe she was just tired or having a bad day. The calls were less and less and I just talked to my dad about her condition instead of subjecting her to a phone call.
As my grandmother’s health steadily worsened she became a danger to herself. My dad would leave work every few hours to come home and check on her then return to work. He would come home to find small fires in the kitchen when she was trying to make a pot of coffee or find her fallen down in the back yard not knowing how long she had been there. She was unable to perform even the most basic tasks for herself at this point. It was obvious she needed professional care that he could not provide her and he decided to admit her to a nursing home.
Obviously the best thing he could have done for her but I am sure it was the hardest decision he has ever had to make.
He would go to visit her and when we would talk he would fill me in on how life was like for her. Then this past Thanksgiving weekend, my family had the opportunity to take a 4 day weekend and drive out to my dad’s, which from where we live now, is about a 6 hour drive. Other family from Tennessee and Illinois also made the trip, so we all went to go see grandma at the nursing home together. My dad had tried to tell me many times before the trip and right before going into the nursing home that this isn’t the grandma I remember and tried to prepare me because he didn’t think she would recognize me.
My husband, my daughter, and myself all felt we had such a special relationship with grandma that she would recognize us but even if she didn’t, we were alright with that. We all filed into a room with a conference table and chairs. Everyone took a seat and waited while a nurse went into the Alzheimer’s unit to get grandma. After what seemed like only a minute, grandma arrived, in a wheelchair. She looked like the same grandma except her hair was long, she always wore her hair very short and she was in a wheelchair. Each of us leaned over to give her a hug and my dad talked to her as I assumed he normally does when visiting her. She began to talk back and it broke my heart, she couldn’t even form a sentence. She stuttered and made no sense when responding. I couldn’t hold back the tears while looking at her and seeing nothing in her eyes anymore. She didn’t know who I was, she didn’t know who any of us were. We would try to jog her memory and tell her who each person was with a little tid bit to help her remember but it didn’t work. She looked at my daughter and said “She’s so pretty” and a few times would make out a word here and there, mostly curse words but none of it made sense. She was sitting right next to me but was miles and miles away. I couldn’t keep it together long enough to take a picture, I was crying so hard. To see this woman I have looked up to my entire life, someone who has done so much for everyone and has received so little in return, ending her life this way ripped my heart out.
Now I understand how Dr. Langbaum felt about her grandfather and how so many people feel who are in the same situation. 1 in 10 adults cares for someone with Alzheimer’s, that means a lot of people feel the same way I am feeling now and we can all do something about this.
Unlike any of the other top ten causes of death in our country, there is no way to prevent, cure or even slow down the progressions of Alzheimer’s disease. However, there are clinical trials going on with new medicines to prevent this disease and not just focusing on people with symptoms. It’s easy to sign up and it will help us all move one step closer to cure this horrible disease.
Joining the registry will allow you to get updates on the incredible progress that is being made with this disease. They will not overwhelm you with emails but will keep you informed. The idea is power in numbers, the more people they can show are dedicated to this research the more help the federal government will be willing to give. We need to push this critical research forward and we will all reap the benefits. There are already over 40,000 people standing behind this cause but imagine how much more of an impact it would be if there were 100,000 or even a million of us showing our support!