Tonight my phone rang at 10pm and it said unknown. These last few months an unknown call means it is my mom’s facility. It was late so my heart sank. Is mom ok? For the first time in at least 3 years my mother was on the other end of the phone. As I held my newborn son in my arms, I listened to her as she jabbered on for at least 5 minutes. I say “jabber” because my mom has makes absolutely no sense when she talks. She has recently started to make up words and she has her own language. Almost immediately when I heard her voice, I began to cry.
I have to be completely transparent. I have not seen my mom for three weeks. Three whole weeks. (Almost four) That is the longest I have EVER gone without seeing my mother since she moved to Texas in 2009. About three weeks ago I was able to sneak away and see my mom alone without any of my three children. I could not handle it. Call it post pardom hormones, but after about 5 minutes of being with my mom I had a breakdown in her room. Looking around at all of the pictures we have of us, pictures of my brother and I as kids, pictures of our families now… it was too much. After I collected myself I followed her out to the main dining area to be with the rest of the community. My mom never stays still, she is ALWAYS walking. I saw some of her favorite nurses who asked about my precious newborn son and I lost it again. Ugly cry. Then I felt terrible because these women and men who work in these facilities have a hard enough job as it is. The last thing they need is for a crying family member to further solidify to them that this disease sucks. As I gave my mom a hug I realized how much I really needed her at this moment in my life. My life was harder than it had ever been. A 3 nager who was testing my patience daily, a 19 month old that was becoming Evil Knievel and a 3 week old son. Not to mention that my newborn was giving me the ride of my life with breastfeeding. I needed her advice. I needed the one person in my life who knows me better than anyone else ever will.. tell me it would be ok.
After a few minutes I put my cell phone on speaker so my husband could hear her. He isn’t able to visit her as often as I am and even though I tell him stories he doesn’t understand how bad she really is. And to be honest I think it breaks his heart also. I told her how much I loved her and missed her, but she did not repeat it. Usually she will say, “I love you too, honey.” She then started saying something else I couldn’t understand and then one of her sweet nurses got on the phone. She told me that my mom has been carrying around my picture all day. When the workers would ask about me she would say, I love her.. I love her…I love her. Her nurse said that she making them all cry with how she was acting. They were crying because she knew what she wanted. She wanted me. They asked if she wanted to call me and she said yes. And then my mom, who doesn’t ever stay in one place waited there for me to answer the phone.
She knows. Somewhere in her foggy brain she knows i haven’t seen her in three weeks. She misses me. My mom is still in there.
For some of you that may not know, my mom has late stages of Alzheimer’s Disease. She has had it 5 years and is now in her 3rd facility in 3 years. (That will be an entirely different blog post.) Losing a mom is so very hard. I know that anyone who has lost a mother at any age can relate to the feelings of loss of such an important person in their life.
What I want to convey in this post is why I am so PISSED! Families of people who have Alzheimer’s Disease have to face a double blow if you will. Not only do we all have that feeling of loss, but we actually to watch it happen slowly. Imagine your loved one being right in front of you… You can see that their hands are still the same to hold, their eyes still have that loving sparkle, yet they have no clue in the world that they even know you. Traumatizing.
This horrid disease makes people die a slow and painful death. It is hard on the patient, but even harder on the family. As a young mom of three small children there is no reason why I should have to be facing this. My mom is 66 years old.
For the past three years I have raised money for our local Alzheimer’s walk in September. Every year I have beat my fundraising goals and this year is no different. I can’t physically do anything for my mother anymore, but I can put a name and a face to this disease. Share my stories and my struggles so you know that this is a very real threat. It could happen to anyone.
This year I am starting earlier with fundraising and building my team.
Has Alzheimer’s Disease affected you in some way or are you afraid it might in the future?
Did you know that every 66 seconds someone is diagnosed with Alzheimer’s Disease? It also kills more people than breast and prostate cancer combined! This disease is serious and is only getting worse! Join me in my fight. All proceeds go to funding and research.
Will you join my team and help find a cure for Alzheimer’s Disease. Or will you donate to our team, Melanie’s Memories Matter to help us reach our goal? Thank you in advance to all that can help. <3
Today I was feeling a bit nostalgic.
I talked to a friend about her recent road trip with her mother and she commented how long it was and how much driving was involved. I quickly responded.. Even though it was long, you made memories!
Almost immediately a ton of my own memories of road trips with my mom surfaced my mind. It was hard for me not to get emotional. One of my favorite things was my summers spent with my mom in Georgia. Mom would say, “Lets get in the car and GO!” I never knew where we were going, but she would have a plan. The trusty map that she kept in her glove box would be newly folded with a route in mind. She had the mileage written down next to each stop that we would take in her trusty notepad. She always had the town that we would stop and get gas in written down and made sure we never had less than 1/2 tank. I still till this day wonder how I have not picked up that habit! I am the 1/4 tank queen! She was always prepared and ready for an adventure. We would visit old towns devastated by the war, Ate Fried Green Tomatoes at The Whistle Stop Cafe, hiked the beautiful falls in Dahlonega, The Cabbage Patch Kid factory in Cleveland, The Cherry Blossom Festival in Macon… you name it! If it was in Georgia or a state close by, we would visit. I loved being on the open road and still do. Part of the reason I went to college at Texas Tech (6 hours away) is the drive. Watching the houses pass by and wondering about who lived in those houses and what they were doing at that very moment. I always loved the fact that there was so much more to this world than just my own. The one thing I could always do without is the smell of mom’s cigarettes. My mom smoked like a chimney. Always had since I could remember and did up until after about two years after she was diagnosed with Alzheimer’s. Right before I moved her into a facility I was having to do everything for her including her groceries and her smokes were always on the list. One day she left them off and I didn’t ask. I had begged her my entire life to quit and she just could not. And from that day on, she forgot she smoked for 45 years. Was the strangest thing. That is honestly when I really started getting worried about her.
I always joke about that day because I had just recently found out I was pregnant with my first daughter. I imagined buying a carton of Marlboro reds being huge and pregnant and the looks I would get. Still makes me giggle. Days like today really I wish I could remember everything about those times with mom. The talks we had in those many hours going to and from our adventures and more about her own past. I would give just about anything to just sit and talk like we used to.
I find myself really being very aware of writing down things that our girls can have it once we are gone. So even when we are not on this earth and they want to feel a piece of us, they will find us in letters. One of the things that I started many years ago before I got pregnant with my first child is a journal for my children and I encourage each and every one of you do the same. Even if your child is 10 years old, DO IT!! I have written in it every month when they were babies and now I write in it randomly with funny stories, or just to say hello. I pray they treasure their journals as much as I would have if my mom had thought of it. Sometimes daddy even writes in it too! With our first daughter it took four years to get pregnant and the infertility journey is all in there. Every painful memory.. the miscarriage, IVF, all the negative tests… She will have no doubt at all that she was so wanted and loved and God had a divine plane for her life. (Side note: starting to think it was because God had to perfectly craft the most strong will child ever) #terribletwos
My mother was diagnosed with early onset Alzheimer’s Disease at 61 years old. It has been the most heart wrenching journey I have traveled thus far. (She is now 65) To see your mother physically and have her not be there at all is absolutely horrendous. I didn’t even think to ask my mom all of the details of my childhood before it was too late and that is why I am giving my girls every chance to not feel the same.
Life is just so very short in the scheme of it all…
All we have when we leave this earth to live the eternal life in Heaven is our memories and our words…
If you feel led to help me fight the good fight against this terrible disease, Alzheimer’s please
join our team to walk here in San Antonio on September 19th, 2015. Any donation is appreciated as 100% go towards the research towards research on prevention and cures.
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!