If I can be honest with you, friends, I will share that so far 2017 has not been treating me well. What normally kicks off a season of positive change and excitement for most people, has not been so for me. While there are many things I can be (and am) grateful for, there have also been quite a few moments of frustration, sadness, and uncertainty that have led to nearly two months of being in a fog. And I hate it.
What has been going on, you ask? Well, it started shortly after New Year’s Day with a more aggressive progression of my father’s dementia and decline in his health. In the last 6-9 months, he has gone from being able to walk with a walker and eating normally to being bed-ridden and needing to be fed. Despite that, he was still generally healthy. Yet, in the last 2 months, he progressed further and is now on a puree diet since he is unable to chew and swallow food. Well, unable is inaccurate. Physically, he is able, but the dementia prevents him from doing so. (In essence, his body has forgotten how to swallow.)
Even with pureed foods, he is still having difficulties eating and often times begins to choke due to not swallowing the food. He even has issues with liquids, causing concern for dehydration. All of this, of course, is incredibly frustrating for our family, but especially for my dear mami, who is his primary caregiver and the one that feeds him. Continuing on this path of progression, we all know the inevitable reality – my papi will one day stop eating altogether. We just don’t know how long before this unfortunate scenario occurs. This knowledge is what eats me up inside.
I hate to sound overly dramatic, but the truth is that it feels almost like I’m grieving something that I know is coming (soon?). “It’s weird to feel like I’m grieving something that hasn’t yet happened,” I told a friend recently. But, this is honestly how it feels. I know that the outlook isn’t great. I know that this is a reality our family is facing. And though we don’t know if my papi will continue to eat his pureed foods for years or months, either way feels like a bandage on an ever-bleeding wound.
I share all of this because I know the struggle of dealing with dementia and seeing a loved one suffer from this life-robbing disease is one that many people also experience. Perhaps some of you can relate or are currently in similar situations. While I wish I had some hopeful or encouraging words, I can only say that I understand. Maybe one day I will look back on this phase and after some reflection be able to see some light in this bleak moment. For now, I will try my best to be a light for my mami, as I personally struggle with the daily thought that my papi is succumbing to the dementia.
All photos © Melanie Edwards/modernmami™
I am so sorry, amiga. I have been thinking of you since finding out a few months ago that my paternal grandmother in Ecuador has Alzheimer’s disease. To see her slowly deteriorate and start to forget how to say certain words or stories and songs she used to sing to me hurts me. And it hurts even more to know that it will only get worse, she’ll forget me and my kids, and I live far away from her.
However, I can see God’s merciful hand through this. She is a very loving person with her family and loved ones, but she used to hold grudges with some other family members for decades. Now she has forgotten about it and no longer holds grudges against them! She also quickly forgets if something problematic arises, which used to be very frustrating for her. 🙂
Estaré rezando por ti y tu mami que tanto lo necesitan. Y para que tu papi sienta paz y confort de alguna forma en esta época tan dura de su vida. Te mando un abrazo grande.
Thank you, Denisse. I’m sorry you and your family are going through a similar situation. It’s definitely hard, but it can be nice to find some good in all of it. 🙂 Muchas gracias y abrazos para ti también.
Your story really spoke to me and I am sending hugs your way. It is so hard to see the decline of someone you love. My father had a stroke in July that severely impacted his ability to talk and swallow. He has a feeding tube that goes directly into his stomach now. I am very thankful for every hour and every day that I get to be with him. There is something special about the resiliency of the human spirit and I wish you and your family lots of strength.
Thank you, Elsie. I’m sorry about your father. It really is extremely hard.
Melanie – I’m so very hard to hear this. Thinking of you during this difficult time for your family – I can’t imagine how emotional this must be for you. Sending love from afar. xoxo
Thanks, Colleen.
I applaud your honesty and sharing the stress of what you are going through. When my dad was dying from cancer this past fall, I learned that pre-grief is a real thing – which is what it sounds like you are doing – pre-grieving. Watching a parent suffer and decline is one of the most painful and stressful experiences. It is like daily whiplash. Remember to be kind to yourself along this path. Xoxo
Pre-grief, I suppose that’s what it is. I am so sorry about your dad, Monica. Thank you for the reminder – I am trying.
Melanie, I am so sorry. There is nothing worse than watching someone you love struggle with health issues, especially when you don’t have any way to fix it. You’re not being dramatic at all. We are praying for your father and for peace for your family. ?
Thanks so much, Chantilly. It is hard knowing there’s nothing we can do, as you said.