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Caretaker, Hope

February 13, 2024

5 things I wish I had known before I became a daughter of Alzheimer’s disease.

As someone who lost a parent earlier than expected, it is hard to not go into the month of loss without a certain dread. Even after almost 5 years of my mom leaving this earth, the pain of what could have been will always linger. February will always be a month of remembering Mom.

My sweet mama, Melanie was almost 60 when I started to notice major changes in her. The sudden forgetfulness of things she once did, the hoarding, personality changes, high anxiety, not wanting to do things that brought her joy, and many others. Because of her age, we had to fight for a diagnosis. After many doctors, our greatest fear was confirmed. Early Onset Alzheimers. Alzheimer’s was something that neither of us wanted to hear since Mom’s father had also suffered the same fate in his late 80s. Our journey seemed long (8+ years) and it was soul-wrenching. There are so many things I wish I had known during that time and pray they bring some encouragement to those who may need it.

1. You will have to grow up fast.

As a child, even an adult one it is hard to imagine ourselves in a role that is reversed. Yet, it all happens. We all have a 100% mortality rate, friends. Talk to your parents BEFORE a major illness comes about. As hard as it is to have the hard conversations, they need to happen. Everything from the logistical conversations on wills, DNRs, and funeral plans. Yes, I understand these are hard and uncomfortable but as someone who has been on the other side. It is better. Also, realize some legal paperwork can not be completed once your loved one has progressed in Alzheimer’s or any other fatal diagnosis. In Texas, the person has to be “of sound mind” while drawing up legal paperwork. This means the person has to be aware of what they are signing and be able to communicate their desires. If not, an entirely different legal situation will have to happen and it won’t be cheap or easy.

2. Ask for help!

This one was hard for me at first as I was wired pretty early in life to do things on my own. It didn’t take me long to realize that I was in over my head with Mom’s diagnosis. As a woman in her early 30s who was knee-deep in diapers and 3 toddlers, I was at a loss. Thankfully I was able to get help from the facilities that mom was in. There were also support meetings and other families that I connected with that held my hand and wiped my tears through our journey. Those friends helped me more than they will ever know. They were extremely valuable as I was not physically able to visit every day because of my growing family. They also became my eyes and ears when I was not able to be there. We were also thankful to have a wonderful preschool that my children attended that knew our story and helped me a lot. Extra days and hours of love with my kids, so I could serve my mama the best way I was able.

Another blessing was Mom’s hospice company. This may be a post for another day, but hospice isn’t just for people on death’s door. My mom was actually in hospice for 6+ years. Not only did they help with medications and make me not feel so silly, but they also held my hand every step of the way. The chaplain became a good friend and someone whom I valued dearly up until her last breaths.

The Alzheimer’s Association is also a fantastic resource. Not only do they have a wealth of knowledge on www.Alz.org, wonderful local chapters providing community and support, a yearly walk that I raise money for that helps me feel like I am combatting the disease, but it also has a 24/7 helpline. 1-800-272-3900 is the number to call any time of day for a wonderful person to help with any need you may have.

3. Take time for yourself!

This was something I had to learn over a long amount of time. Sadly, my caregiving season with my mom was also as I had three babies in three years. After a long infertility battle, God sure did have a sense of humor on timing. There was often no time for myself or my needs until she was much further along in her disease. I learned that taking naps when I could, getting a massage when able, and finding something that brought me joy was the only way I would be the best version of myself for all who needed me. Whatever it is that fills your cup, find it!

4. Keep a notebook or digital record of the journey.

As someone who is a writer, I wish I would’ve had the foresight to have all of Mom’s stuff in one location. The doctors that we visited. The diagnosis. The medications that were offered to her. The side effects that she had on them. Major falls. Hospital visits. Facility problems (sadly, there more than likely will be many.) This resource will prove to be something you can refer to often and I highly recommend making this a priority when your loved one is diagnosed.

5. This will not last forever. Life moves in seasons.

Sadly, all of our time will come to an end on this earth. It sounds morbid, yes but helped frame the actual loss for me. If not now, it would happen eventually. Some months seemed to drag on forever as I watched my sweet mama slowly disappear. First with names and dates and then with words, talking, and then forgetting how to properly breathe. The disease itself didn’t take my mama. Aspiration did as her body could no longer swallow and function as it once could. Yes, this time is hard. Heartbreaking, but try to be present in your current moment. Enjoy your loved ones while they are still on this earth.

Friend, this journey will be hard but you aren’t alone. My saving grace was my faith and the people that God placed in my life during that time. Praying for you in this season.

Cheering you on always,

Tarah K.

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