Forget Me Not, Love You Always. Opening Up About My Father & His Lewy Body Dementia.

To date, this has been the hardest story to share for me. To my dad, I love you always.

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For every little girl, their dad is their hero. He’s the first man you love, the man who fights off the monsters and the man who you ask when you know your mom is going to say no. For me it was no different, my dad was my king. He’s always been my #1 fan no matter what I’m doing and through every endeavor in my life, he has always been so proud of me.

Being a pilot, my dad was around for a few days at a time while I was growing up and I remember how excited I would be when he was coming home. When he got home late, he would leave me surprises at the foot of my bed so I would see them when I woke up. He would take me to see him fly the model airplanes he built and without fail he would crash them every single time. He always wanted to make me happy and for that I thank him endlessly. He gave me an immense amount of love every day.

While I’ve never been one to fantasize about my future wedding, the only part I would think about was my dad walking me down the aisle. I would hope and pray that I would be lucky enough to have him in my life for so long.

As the years have passed, those dreams have become less of a reality and more of a harsh reminder that my dad will not be with me for years to come and the day will come where I will have to walk down the aisle alone.

5 years ago, my dad began to show signs of forgetfulness. Things like, “where are my keys?”, “what’s your number?”, and “where’d I put my jacket?”. Questions that to some may seem like nothing, but to us we knew something was wrong. My dad, stubborn to the bone, refused to see a doctor but after countless phone calls to his doctor, we were told that he was most likely showing early signs of Alzheimer’s. At such a young age, only 59, we thought this was rare to have so early but at least we could treat him with medicine to help slow the progression of the disease. While I knew he might forget me, I also knew I had years to enjoy him before that could happen.

Oh man was I wrong. As we come to 2018, his health was declining rather rapidly and in the course of a few weeks, my father had become a completely different person. He was aggressive, experiencing massive mood swings and while never becoming physical, his angry words were enough to leave my mom and I with tears in our eyes more than once.

He began forgetting more and more things, peoples faces were becoming less recognizable, he couldn’t drive and using a TV was a task in its own. Then on Feb. 9 it’s like our lives kind of stopped. What we thought was a trip to the emergency room for severe back pain my dad was experiencing, it was so much more. My dad was admitted on Feb. 9th and thus began a long and painful journey to discovering his true disease. When admitted, we explained to the doctors what had been happening & they kept my dad for testing thinking maybe he had a tumor or seizure causing his severe change in behavior in the previous weeks. They ran test after test and found nothing and as the days passed we saw him becoming quiet, lethargic and showing signs of declining even further. He had also developed pneumonia and his ability to swallow was non existent. After two weeks and countless tests the doctors informed us that what he had was a disease called Lewy Body Dementia, an aggressive and devastating form of dementia most common in younger adults, ages 50-65. This type affects your frontal lobe of the brain causing emotional and personality changes as well as effecting your motor skills.

With this diagnosis came even harder news; they didn’t know if my dad would be able to swallow again & without food he would not survive for long. The cherry on top? They also told us that we would never be able to take my dad home again. No matter what our next move was, he would need to be in a facility where he could receive 24/7 care. This was not the type of news I was expecting nor hoping to hear.

I was in the car with my boyfriend when my mom told me that the doctors weren’t sure how long he’d live for and I promise you in that moment I felt time stop and it was like all the feeling in my body had left me. My dad was dying, and way faster than I had ever imagined. I would no longer have my dad to walk me down the aisle, to meet his grandchildren, to see me achieve my goals. I would never wish my worst enemy this feeling, a feeling of hopelessness and sadness. Point blank, it sucks.

If you could see my dad in the hospital, it was like looking at a shell of who my father was. Skinny, not moving and no sign of emotions in his eyes. He would remember me one day and forget me the next and there were days I’d go where he would just stare into the abyss and not say a word. Whatever was to happen next, I had already lost my dad. While his body was still there, the man who is my father, the loving father and husband, was gone. His mind was no longer under his control and it was evident that things were not going to get much better from here on out.

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In the days that followed, a decision needed to be made. Feeding peg or no feeding peg? While we are not full supporters of a feeding peg, we decided that we needed to try all things before giving up on my dad. The feeding tube was put in and he began to receive nutrients. His color came back and so did a bit of strength, enough to at least sit in a wheelchair. He was then moved to a rehab facility for therapy where we hope his quality of life can improve.

Not much has changed since he’s been there, he still cannot walk or move much and his mind is not there. When I visit, I always pray he’ll know who I am that day and some days my prayers are answered, other days it’s like he’s looking right through me. Things will not get better, I will not get my dad back and he will never be coming home with us again. Although these things have been hard to accept I am grateful for the 27 years I had with my dad. 27 years of love and laughs, adventures, fights, and being a family. No one can take those moments away from me and I know that whatever is to happen in these months that follow, I will forever carry my dad with me. He will never leave my side and I will forever be daddy’s little girl.

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To those who read this and have gone through something similar, my heart is with you. Be strong, know that God has a plan and sometimes God needs his best angels back sooner than we would like.

xo,

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13 thoughts on “Forget Me Not, Love You Always. Opening Up About My Father & His Lewy Body Dementia.

  1. Very proud of you Tiff for posting something so personal, I’m sorry that you and your family are going through this. But, like you say God has a plan, and he doesn’t give a tough battles a warrior can’t fight! I’m sure your dad is strong and that he will get better soon, stay positive 😘

  2. My dearest Tiffany, you are such a warrior and and an inspiration. This is a difficult journey for you and your family. I pray for all of you every day, stay strong.

  3. Thank you for sharing! This touched my heart! I have worked with patients with Alzheimer’s and early onset dementia and I can attest that it’s so hard on family members! I hope God continues to keep your family in his comfort and give your dad the strength to live the rest of his life. Glad you’ve enjoyed 27 years of all his love and I hope you always remember your dad in that light. Lots of hugs from here

  4. Tragic, but beautifully written. Thank you for sharing and spreading conciousness to all. The courage, the decisions, the emotional fortitude you continue to show has already had an impact in the world. We love you and pray for the North Star to guíe you and your family to peace.

    Love,
    Ibis, Omeil y Diego Marcel

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