A little over a month ago I got a call that I have been dreading. Usually the baby will wake me up for her morning feeding, but on this day it was the phone. Never a good sign. Mom had been rushed to the hospital via an ambulance. She had a seizure. My heart stopped when the nurse from her facility explained what happened. What do I do now? My husband had to leave for work and I had two small children. There is no way I was going to wake up the 2 year old and take both girls to the ER. I had no clue what I would be walking into. Luckily, my mother in law came to the rescue to help with the girls so I could head up to the hospital. Side note: I have seriously been Blessed with the world’s greatest mother in law! I can always count on her to help with the girls, great advice or just to listen to me yap. <3
Up until that point my mom had been healthy. (As healthy as one can be with late stages of Alzheimer’s). Seeing her lying in the ER bed was heartbreaking. She looked so frail and weak and was extremely tired from the seizure. I was told that it was almost two minutes long. That day and the day to follow were some of the worst that I have encountered with my mom and this dreadful disease. Being in the hospital is absolutely horrible for most people, but admit someone with dementia and it’s a whole new ballgame. It’s catastrophic. I had to make sure nurses knew so they would treat her differently than most other patients they would have that shift. I helped constantly hold her down or re-direct her so she wouldn’t pull out IV’s and stayed by her side to give her reassurance that she would be ok. She was terrified. As of this point I was still the only person she knew or recognized. The first few hours after her admittance I was constantly in tears. Seeing my strong, capable mom so terrified and afraid broke me. It brought me back to the day we moved her into the first facility almost three years ago. Once we moved all of her things into the assisted living facility and were about to leave she looked at me and said, “Please don’t leave me here Tarah. I want to go home.” I hugged her and reassured her that she would be ok, and I wouldn’t let anything happen to her. And as soon as the door shut I cried. Hard. And being 8 months pregnant it did not help. Here I was once again, my hands tied and praying mom would be ok.
Fast forward to a month ago. Ever since the hospital my mom has slowly started to regress. Her speech was getting more slurred, her walking was labored and she was having smaller seizures though out the day. Even on seizure medication. One day she even lost her smile. That day I couldn’t hide my tears from her. Every time I looked into those beautiful brown eyes that I have seen since the day I was born, my heart broke further and further. What would the world be like without my mom’s amazing smile? The smile that God so graciously gave me also? She is slowly being taken away from me, piece by piece.
A week later I attended the Alzheimer’s Associations breakfast to celebrate the Champions and Grand Champions from last year. I felt so proud to be apart of this group and to know that I had a part of helping to raise money to fight this destructive disease. Even though I went alone and was very much out of my comfort zone, it was so uplifting. I met others directly affected with Alzheimer’s and even met someone my own age who’s mother also has Early Onset. Thank the Lord that I am not alone in this battle being as young as I am.
After the breakfast I had a meeting at my mom’s facility for her quarterly assessment. I went into the meeting pissed at this disease and determined to make a massive difference this year with my fundraising goals. I was on a mission and doubling what I raised last year!
And then, time stopped and I was derailed off my high. After the usual assesment meeting where we go through her day to day requirements and how many points (levels of care have a point scale), the medical director dropped a bomb shell. She suggested that I start contacting hospice companies. Hospice. The word itself sends me into a panic. Hospice is for people who are dying. Mom is still here. In reality though, the most heart wrenching part of this disease is that even though my mom is physically still here, she is a complete new person. Her beautiful eyes, the hands that are so much like my own are here, but she is not here at all. She is slowly dying on the inside and everything that I have known and loved about her is almost gone. She rarely remembers me anymore. She is a shell of my mom.
Long story short, we signed my mom up for hospice that weekend. The realization of the end has finally settled and I am somehow moving more towards some acceptance even though I don’t know if I will ever really be there until she is actually gone. I spend so much time talking to doctors, the facility, medical billing, etc that when that is all over… I don’t know if I will know what to do with that time. Being her caretaker these past four years have been so challenging, yet so rewarding because I know I am honoring my mother.
Mom had an upturn these past few weeks after we took her off a medicine and I am hopeful because she seems to be getting back to her “normal” self that she was before the hospital. Even though some things may be getting better, her manic behaviors are increasing. Since she is stronger and more agile than most patients living at a Alzheimer’s facility everyone is having a hard time medicating her. Her hospice nurse told me last week that mom is her only walking patient. My mom does laps all day around the facility. She never, ever slows down and doesn’t sleep much either. It is exhausting to watch. Sooner or later she will run herself into the ground. Of course we can try different medications to help slow her down, but all come with their own gamut of lovely side effects. It is a never ending battle to find the “right” medications. I honestly believe at this point it is unobtainable.
I am working on giving this burden to The Lord, but trying to do everything on my own is what I do. I have some amazing friends that truly love me and I have no clue what I would do without them. Two of them most recently have gone over and beyond and have been such a light for me during this dark month or so of my life. Jennifer and Christy, thank you both so much for pouring into me. Your love and the love that He shows through you has helped me more than you know.
This battle is far from over. Hurt and heartache are bound to be plentiful ahead, but I am staying firm in my faith. The beauty of this life is that we will always have trials and tribulations. God didn’t make this life on earth easy. It is what you do with the obstacles that we are faced with that defines us as humans.
in all your ways acknowledge him, and he will make your paths straight.”
We are a little over a month away from the Alzheimer’s Walk here in San Antonio,TX. Will you join me in my fight to raise money? To battle this disease head on and shout from the rooftops and heighten awareness that this isn’t an “old persons disease!?” To collectively gather funds so more research can be done so we can eradicate Alzheimer’s!? Let’s put an end to this painful disease that is stealing away our Grandparents and Parents. Let’s make sure our children don’t face this same battle… Join Melanie’s Memories Matter today!
*If you will not be able to attend the walk with us on September 26th you can still donate to our team in honor of my mom or in memory of your own loved one!