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  • Writer's pictureBarbara Huelat

Things I Wish I Knew as a Dementia Caregiver




When I first became a caregiver for my grandmother, my mother, and finally my late husband Joe. I had no idea what I was getting into. I knew that they had dementia from vascular disease, Parkinson’s disease, and Alzheimer’s, but I didn't realize how much the diseases would change them and me. They became forgetful, confused, and sometimes even aggressive. I was overwhelmed and didn't know how to cope.


I felt like I was losing them one, by one, and I didn't know how to help them. I didn't know where to turn or who to talk to. I ended up in the hospital with a stress related heart attack.


My physician gave me a referral to a therapist who gave me a book about dementia – The 36 Hour Day. The book educated me about the diseases, talked about the challenges of caregiving and how to cope with the stress. It also talked about the importance of getting support from others.


Reading that book gave me hope. I realized that I wasn't alone, and that there were people who could help me. I started to reach out to other caregivers, and I found a support group in my area.


Being a caregiver is still hard, but it's not as overwhelming as it used to be. I know that I was not going to change the course of my loved one’s disease, but I was able to make their life a little more comfortable and that I could survive caregiving. And I can do that with the help of others.


Dementia is a progressive brain disorder that causes a decline in cognitive function. It is a challenging disease for both the person with dementia and their caregiver. As a caregiver, I have learned a lot about dementia over the years. Here are some things I wish I knew when I first started caring for my loved one:

  1. Understanding the disease. It is important to understand the different types of dementia and how they affect the brain. This knowledge will help you to understand the challenges your loved one is facing and how to best support them.

  2. Learning how to ask questions. People with dementia may have difficulty remembering things, so it is important to be patient and ask questions in a simple and direct way. Avoid asking multiple questions at once, and don't be surprised if your loved one doesn't remember what you asked them.

  3. Remembering that dementia is the disease, not the person. It is important to remember that dementia is a disease that affects the brain. It does not change the person's personality or core values.

  4. Understanding that people with dementia live in the current moment. People with dementia may not remember what happened yesterday or last week. It is important to focus on the present moment and to avoid talking about the past or future.

  5. Avoiding certain behaviors. There are certain behaviors that can be harmful or frustrating for people with dementia. These behaviors include arguing, demanding, ignoring, scolding, and punishing. It is important to avoid these behaviors and to focus on being patient, understanding, and supportive.

  6. Remembering that dementia is more than memory problems. Dementia can also affect a person's emotional well-being. It is important to be aware of this and to provide emotional support to your loved one.

  7. Finding ways to communicate with your loved one. People with dementia may have difficulty communicating verbally. It is important to find other ways to communicate, such as through non-verbal communication, body language, and touch.

  8. Working with the emotional part of the brain. The emotional part of the brain is often unaffected by dementia. This means that people with dementia can still experience emotions such as joy, love, and sadness. It is important to work with the emotional part of the brain by providing positive experiences and by connecting with your loved one on an emotional level.

  9. Taking care of yourself. Caring for someone with dementia can be a stressful and demanding job. It is important to take care of yourself physically and emotionally. This means getting enough sleep, eating healthy foods, exercising, and spending time with friends and family.

If you're a caregiver who feels like you're in over your head, please know that you're not alone. There are people who can help you. There are support groups, online forums, and even professional counselors who can offer guidance and support. Don't be afraid to ask for help. You're not a burden, and you deserve to have the support you need.


I have learned a great deal about the diseases of dementia and now I want to share these lessons learned with you. My book Taming the Chaos of Dementia, and my website – www.barbarahuelat.com offers valuable resources, questions and answers about caregiving issues and blogs on dementia concerns. I ask for your comments, help and your stories to share. We are all in this together to make this a more dementia friendly world.


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cartercom2212
18 ago 2023

Thank you so much for sharing your experience and the wisdom gained, Barbara. I look forward to reading the book (ordered today) and applying the lessons learned in our family's journey with our loved ones. Warm regards and good health, Randy Carter

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