Surround Yourself with Support

By: Emily Wisner

For Destiny, her father’s diagnosis of Alzheimer’s wasn’t a shock. Both of her grandparents and her uncle had passed away from Alzheimer’s. “My brother and I grew up knowing it was always a good chance that my father was next in line, and therefore, it’s been on our radar since I can remember,” Destiny said. “Over the years, my brother and I would fly in, check in on him and look for any signs of dementia. Roughly 10 years ago, we started to notice small signs, and thus our process began.”

In her late 20s, Destiny found herself as her father’s Power of Attorney. “As you can imagine, I grew up quickly given the responsibility and the conversations we were having,” she said. While her father was still self-aware, they worked together to update his will, organize his financial accounts, and develop a care plan. “Throughout the next few years, I served as his advocate with finding the right doctor, getting a diagnosis, observing his behaviors, making sure he was eating the right foods, cleaning the house, filling his refrigerator with food, making sure bills were paid, and checking in frequently,” she said. 

However, with Destiny in Illinois and her brother in New Jersey, it was hard to keep an eye on their father in Arizona. After a few years, Destiny and her brother had growing concerns. “Little by little I noticed the house was a mess, there was moldy food in the fridge, his bathing was lacking, he walked in circles at night, and he wouldn’t know where he was,” she said. “Within 72 hours my brother and I packed up my dad’s belongings, put his house up for sale and had him on a plane to his next stage of his life.”

“We laughed, we cried and had a lot of breakdowns during that short trip, but together we got through it and got Dad to an assisted living facility where he could not be hurt or hurt someone else,” Destiny said. “As Power of Attorney, I was asked to sign him over to the facility, essentially waiving his rights, which was the hardest thing I have ever done.” At 36 years old, Destiny had made the most difficult decision of her life, but it was the safest option for her father. “That was the day he fully lost his independence and when my grieving really kicked in,” Destiny said. “I knew this would be his forever home. I had always pictured it differently, and I know he always saw himself in Arizona, retired, and living his fullest life.” 

At such a young age, Destiny didn’t have any friends who understood what she was going through. To help cope, she started a blog called Conversations with my Father. “My blog first started out by capturing memories of my father’s childhood and upbringing so that I could document them before his mind was completely gone,” Destiny said. “As I continued writing, it turned into more of an outlet for me in dealing with his disease.” As an English major, Destiny found writing to be therapeutic. “Instead of holding onto the pain, it provides a release for me to get it out on paper and to share it with others,” she said. “It is part of my grieving process that gives me permission to feel sad or angry in what the disease is doing to my father and my family.”

Destiny has found numerous other ways to help herself through this journey. She learned to ask her family and friends for support, knowing she wouldn’t be able to go through this alone. “If I needed alone time to process, I made time for myself to do that,” she said. “If I needed to be around friends or family to stay occupied, I asked for that. The hardest thing was being able to ask for what I needed when I needed it, which was not natural for me.” Destiny also created one rule for herself to balance her father’s needs with her own. “When my father calls me from the facility, no matter where I am or what I am doing, I take that call,” she said. “I know one day I will stop getting those calls, and it’s important to me and for my emotional state to take them.  I also know for his wellbeing, hearing my voice even for 5 minutes makes him forget his disease. That makes me smile.” Destiny also talks with her brother and the nurses regularly, and she visits as often as she can. “It’s hard being in a different state, and I get down on myself for that,” she said. “But I know I can provide him support on the phone and through my quarterly visits in other ways.”

In addition, Destiny is naturally organized and logical, which has helped her, her brother, and her father prepare for what’s ahead. “From having copies of his will and understanding his financial situation to checking out assisted living centers and figuring out how Medicare/Medicaid worked, it allowed me to plan, which gave me comfort that I had a direction as things started to shift from bad to worse with my father’s disease,” she said. Destiny also learned everything she could about the disease. “During my planning stages, the reading materials that the Alzheimer’s Association provided by calling the hotline was great. It armed me with information about the disease, and I used numerous checklists to start project planning my dad’s move.” 

One of the resources that Destiny has found most helpful are support groups, although she was scared to go at first. “I was afraid I would not fit in and that I would end up sitting in the pain for the hour that I was in there,” she said. “For a while I had all intentions to go to a local support group but always ended up deciding to do something else at the last minute. I would even order the Uber and then cancel.” After a particularly bad week with her father, she decided to take a chance and go. “In an odd way, I felt more normal in there than I did in the outside world,” she said. “People could relate to what I was going through, and I didn’t feel alone anymore. I felt perfectly comfortable and understood in a room full of strangers.” Destiny found a great network of support, and they are able to learn from each other’s experiences. “It’s been a blessing,” she said.

Although Destiny has found many helpful coping mechanisms, that doesn’t mean the journey isn’t difficult. “The hardest thing for me is watching my father disappear as the man I once knew,” she said. “The sad part about this disease that is very different from others is that although your loved one is still alive, they are not fully there. My father was one of the smartest and most independent men in my life who has now transitioned into someone who can’t shave himself, who can’t bathe himself, who can’t remember his grandchildren or what state he is in.”

As Destiny continues through her journey, she wants to share the resources that have helped her with others going through similar experiences. On the home page of her blog, she wrote that in addition to being an outlet for her, “I also am hoping to encourage others to have conversations with their loved ones and to enjoy the time they have with them while they are present.” She also attends events hosted by the Alzheimer’s Association to further be involved with the cause. “Since placing my dad in an assisted living facility, I attend the local Alzheimer’s Association gala and Walk to End Alzheimer’s to give back and connect with others whose families are affected by this disease,” said Destiny. “This organization has created a community for me.”

For others in similar situations with their loved ones, Destiny has some advice to offer. She says that the disease is not always diagnosed and is often managed poorly. “You must be your loved one’s advocate at all stages of this disease and throughout their care,” she said. “Trust your gut. Make sure you get them to the right doctors that understand Alzheimer’s, ask questions to understand medication choices, understand your loved ones financial and legal obligations and rights, and personally inspect and review assisted living facilities. Never stop asking, questioning and checking in throughout the process.”

Destiny also encourages others to find the same support that has helped her so much. “Whether that’s family, friends, local support groups, a therapist, whatever works best for you, make sure you know who those people are,” she said. “They will be pivotal to your self-care both emotionally and mentally. As a caregiver we are used to taking care of others, but if you are not taking care of yourself, you are also doing a disservice to the loved one you are caring for.”

2 Replies to “Surround Yourself with Support”

  1. Very well said .You are truly ready for this .If you dad could thank you he would,he lovesyou so much and your brother.You have always be such a wonderful kid.love you

  2. Beautiful compassionate story about your Dad , Destiny. My husband Guy and I were privileged to have known your Dad as both a neighbour and co-worker here in Orillia, Canada. It breaks my heart to hear about his desease. He was a special person and sincerely liked and respected by both my husband and I. It is wonderful to know that both you and Shane have taken on his care with love. Sending love to your Dad, you and Shane! Noella and Guy Rubino

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