By: Letitia Huger-Hill
**Trigger Warning: This post contains content related to Alzheimer's disease, dementia, and the emotional challenges of caregiving.**
Right now, as I write this, I’m sitting with my dad. We’re listening to his favorite gospel songs, the ones I downloaded into my Apple Music library specifically for these visits.
I’m a daddy’s girl, and very proud of it. My dad means the world to me, so needless to say, his Alzheimer’s diagnosis was devastating. The journey with Alzheimer’s/Dementia began in November 2017, and if you’ve been on this journey with a loved one, you know it can be a rollercoaster. I’ve learned about my different levels of strength, vulnerability, fear, disappointment, and so many other emotions. Through all of this, he still wants to be sure I’m okay, and I let him know that I am.
There are times when he speaks and times when he doesn’t. These visits mean so much because each one is different. With each stage, I find a new reason to love my father and appreciate who he is at that time. It’s a process of holding on while letting go. I miss him while he’s still here. He loves current events and politics, and I know he would have so much to say about where we are as a country and how apprehensive he is about new technology and the price of food! We would have so much to talk about. I let him know about work and business and how I’m balancing work and life (he’s big on that, and I get it honestly!). I let him know that I know he’s proud of me, and he responds with a smile or a few words of affirmation. I let him know I understand what he wants to say when he struggles with his words. I’ve learned to read his eyes and to ask closed-ended questions so he can confirm what I observe with a yes or no response.
To those who are on the journey of Alzheimer’s with their loved ones, appreciate the changes, embrace every moment. Here are a few things that I’ve learned:
Have a support network: Friends and family can mean so much on this journey. Having someone to talk to can support your well-being. Find comfort in asking for help and support. If this is difficult, a counselor can help you in this area.
Know your resources: The Area Agency on Aging has been a one-stop shop in my experience. They provide information about estate planning, nursing facilities, funding sources, and can advocate for you if needed. They can point you in the right direction if they can’t help you. Each state has an Area Agency on Aging or a similar entity.
Have self-compassion and steer clear of self-judgment: Whether your loved one lives with you and you’re a full-time caregiver or you’ve made the decision to move your loved one into a nursing home facility, it can be easy to judge yourself on the care you are providing. The foundation for decisions will be a combination of resources, what your loved one prefers, what you know is the best option, and just plain trial and error. It may take time to learn what works best for you and your loved one’s situation.
Create meaningful moments: Your loved one is not their diagnosis. Meet them where they are. Talk about the things they want to talk about. Listen to their stories, laugh together, sit quietly together, listen to music together, or share with them what you admire about them.
Take care of your physical and mental health: Caregiving can take a toll on your physical and mental well-being. Be attentive to your own emotional and physical health needs. Remember that your loved one wants you to be well. You can’t take care of their needs without caring for your own as well.
Patience and more patience: Not only for your loved one, but for yourself as well. You are doing the best you can with what you know and what you have.
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