Dementia is a family affair

KayandCarlyMy daughter and I were recently interviewed for a show called We Choose Respect. We shared our story about how to watch, care, and manage through life when you have a loved one, in our case, my parents, with dementia. This is the second interview I have had in the past month in which sharing this journey with my kids seems out of the norm. I didn’t really recognize it, but I know I made this decision purposefully with my husband.

Many parents choose to shield their children from adult topics and issues. In this case, I just don’t know how I would have managed. We spent a lot of time with my parents and my kids witnessed some bizarre things. They also lived through mom running out of the house to help my parents late at night, supported me through visits when things were really wacky and my parents were fighting to maintain their lifestyle, and they have overheard discussions with my husband and siblings about what is going on with “nana” and “pop-pop.”

I believe that having my children understand this journey, helps them understand how to be a loving, respectful, adult child, even when the roles start to reverse. I sure hope my kids won’t have to help us. However, knowing that 7 out of 10 adults that turn 65 will need 3 or more years of long-term care means that the odds are not in our favor. As a country, and a culture, we really don’t know how to address the fact that most of our parents didn’t want to linger, but the reality is that we really don’t have any choice but to keep them safe and comfortable.

I’m humbled by my daughter’s ability to absorb and incorporate what we have all learned on the journey to deliver loving care with grace and humor. As she so eloquently stated, “If someone you love forgets you, well, you remember them, and you can love them as long as you cherish those memories” Cherished. 

To hear this interview, you can find it on itunes, or listen from your computer at http://www.wechooserespect.com/

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Three Tips When Helping a Parent Who Has Dementia

If you are finding it difficult to adapt to and visit a loved one who has any form of dementia (Alzheimer’s, multi-infarct, vascular, lewy-body, and Parkinson’s) here are three tips that helped me to manage through my visit, while helping my loved ones navigate the changes happening around them:

1) Always smile and patiently answer questions. I realized that the emotion of the moment was more of a factor in any interaction with my mom. I would take a deep breath, smile, and answer the question. You can use some simple tactics to redirect the questions by suggesting a new activity (walk, snack break, craft) or excuse yourself for a few minutes (go wash your hands, empty the dishwasher).

2) Don’t say “Remember.” Unfortunately, short-term memory is usually the first to go so recognize that they can’t remember, and reminding them of it may only increase their anxiety and suspicion of you.

3) Explaining only created more confusion. I instituted a rule to tell my parents what was happening once and let them ask questions. Because they didn’t recall the incidents or issues that occurred, explaining details just created more arguments than tranquil moments.

I worked very hard to be respectful, recognize their dignity, and need for independence. As the dementia progresses, your loved ones may be unable to understand or recognize what is changing. I hope these tips help you navigate your next visit. Shared.

I am reposting this video and topic for those of you just starting on this journey. I hope these tips will help you. 

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Ever wonder what you should have in place so that a loved one could help you?

blogtalkradioRobert Sharpe, host of Bringing Inspiration to Earth radio show, interviewed me about my journey to care for my parents. He focused in on the key topic I regularly evangelize — which is getting your documents, accounts and assets in order.

Did you know that Consumer Reports found 7 out of 10 couples didn’t know about or how to access the MAJOR financial accounts they shared? We lead busy lives and today our disorganization has already cost American families $58 billion. How much will it cost you?

We talk through some real life stories and discuss why having a durable power of attorney and medical directives are important for everyone over 18. We also go into the how and why these details are most important to ensure you have the life quality you desire.

To listen to this podcast, visit BlogTalkRadio.

Download a copy of the Important Documents Summary if you need this information for you or your family. Listen to this podcast for a walk through the list and how and why each item is important. Interviewed. 

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The evolution of style in my mom with dementia

nailsOne of my mom’s caregivers dotes on her. She works to make her look good and more often than not, mom now has on blush and lipstick and is put together. Before the 4th of July, my mom told her caregiver she had never worn red nail polish. She said my dad didn’t like it, so she never wore it. I know in general, my mom never wore nail polish at all. I had tried on and off to give her a manicure or do them together, but my mom never enjoyed the process. Only later into her disease did she appreciate having someone do her fingernails for her.

For the Independence Day holiday, this caregiver painted her nails red and added star and stripe designs as an accent on two of her nails. My mom liked the red nail polish but is a little put off by the extra design. However, she accepted the addition and is still sporting her fancy nails.

It’s nice to see that mom accepts getting her nails done, having someone put on makeup and even try new hair do’s. She didn’t allow these luxuries before, but now it’s a kindness that she accepts. I’ve witnessed so many changes in my mom over the years, these are changes that I’m happy to see.  Pleased.


Kate Swaffer is a terrific teacher, mentor, advocate, and human. She’s good peeps!

Today is Kate Swaffer’s birthday and I couldn’t let it sneak by without sending a shout out to wish her Happy Birthday. She was one of the earliest followers to my blog. She began by sending me comments. For a period of a few months, we worked collaboratively to post to The Dementia Dialogues. I had many questions, and she had insightful answers.

Kate Swaffer is committed to meaningful dialogue with a wide range of stakeholders about the critical issues impacting a person living with a diagnosis of dementia and their loved ones. If you have been diagnosed or have a loved one with dementia, you should know about her blog: Creating life with words: Inspiration, love, and truth.

Thank you Kate! Best wishes for another year of inspiration, love, and truth. Encouraged. 

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Aging is like traveling to a foreign country

topofmayanruinsI just returned from a mission trip to Belize. It dawned on me while I was there that planning for aging is a lot like planning for trip to a foreign country. You can read books and learn about what to expect, pack for a variety of experiences, but when you arrive, you depend on the help of those around you to make the most of your journey.

I packed rain boots but didn’t realize that the duct tape wasn’t going to hold so I needed to buy a new pair. My new boots were only $8 and are a unique memento of my trip.

The flies swarm in the rain and I wasn’t even that phased by the fly in the bottom of my cup of coffee on the 6th day.

The warmth of the people and their suggestions on how to cure heat rash (rub a lime on your skin), avoid the killer bees, and even the tasty chew on the leaves of the all-spice tree enhanced our journey.

As American’s we are fiercely independent but need to learn how to trust and depend on others. The fact that 7 out of 10 Americans turning 65 today will need 3 or more years of long-term care requires that we share life plans, our weaknesses (not just our strengths), and accept help when we might need it most. Discovered.

Life is a journey, and I hope to make the best of it even up to the end, when most likely, I will need the help from others to manage even my day-to-day activities.


The benefit of a memory care community

I am currently in Belize with my daughter and our church Youth Group. I can’t imagine trying to manage a week away if mom were living with my family. As a sandwich generation caregiver, I want to make sure I don’t short change my daughter and miss the opportunity to be a good mom to her. She is pictured below being silly and showing me how to have fun with he “panoramic” picture feature on my iPhone. We are spending the week painting the 4 room schoolhouse in the Cayo district of Belize as well as getting to know the many children that attend the school.  
Thankfully, my parents saved and told us they never wanted to live with us. It would have made things simpler had we had a conversation years ago with the amount of care they have needed and the complications that dementia brought as we worked to transition them into a safe environment.

Right now I’m happy that my mom is in a community and we have the extra care she needs in place so I can also have the time to focus on raising my kids. Pleased. 


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