TakingCareofGrandma.com

My relentless pursuit for the others – EXCLUSIVE feature on AlzAuthors.com!

I met this amazing group of ladies at the National Caregiving Conference. They call themselves the AlzAuthors.

They are six daughters who have experienced the loss of a loved one with dementia and chose to write about their personal stories to help others along their journey.

Now, they feature hundreds of books and authors of all kinds, from memoirs to practical guides, and yes, even bloggers like me.

Check out my reflection on searching for support, sending out smoke signals, and starting this blog at alzauthors.com.

The link is: https://alzauthors.com/2019/07/09/8946/

If you care for someone with dementia, you need this book

“This is a book about how to create more comfort for both you and your loved one when dementia is present, but I hope I have hinted at another truth: that the essence of family life is care, or serving each other; and that there is joy in service: a joy that enriches both those who serve and those served.”
Cornish, J. (2019). Dementia With Dignity: Living Well with Alzheimer’s or Dementia Using the DAWN Method® [Kindle iOS version]. Retrieved from Amazon.com

Dementia With Dignity, is Judy Cornish’s second book on dementia care. Her first book, The Dementia Handbook, changed my perspective on helping my grandma on her journey with Alzheimer’s (read the review here:
http://rachelh15.sg-host.com/the-dementia-handbook-how-to-provide-dementia-care-at-home/), so when she came out with her second, I had to buy it as soon as the funds became available.

On the plane to my recent trip to Buffalo, I was able to dive in to and digest Judy’s book.

In Dementia with Dignity, Judy gives an overview of her straightforward person-centered framework, the DAWN Method, a set of tools for supporting the well-being of a loved one with dementia.

The DAWN Method offers strategies for coping with the negative emotions like frustration and confusion that accompanying the losses of dementia.

The basic idea behind the DAWN Method is that even though people with dementia lose their rational thought, their intuitive thought functions still remain. Rational thought is what we commonly think of as our left-brain activities‒ making decisions, analyzing facts, and recalling information. Our intuitive thought is what we normally think of when we describe the right side of our brain‒ the artistic and creative domain that helps us appreciate the beauty in music and nature.

Judy shares what she learned from working with individuals and families with dementia, supporting them to remain independent in their homes despite the disease. A major revelation for Judy was the fact that the health care system has long treated dementia through the lens of the medical model, where people with dementia are treated with medicine to address behaviors and defeated by reality orientation — that is, correcting what they believe to be true.

“It is time to recognize what decades of using the appropriate care method and reality orientation in care facilities has demonstrated—that offering dementia care as if we are responding to the symptoms of a disease results in difficult behaviors, costly drugs, and ultimately a form of care that is demoralizing and disempowering. Instead, we can use the habilitative approach: accepting the altered sense of reality that dementia causes, responding to the emotional needs that result, and nurturing the cognitive skills it does not take away.”

CHAPTER 4 – Location 1126
Cornish, J. (2019). Dementia With Dignity: Living Well with Alzheimer’s or Dementia Using the DAWN Method® [Kindle iOS version]. Retrieved from Amazon.com

It has definitely been a challenge to battle my first instinct, but I have seen how reality orientation manifests in real life. When I corrected my grandma, I saw how it made her feel. Judy makes sense of why we should do this by explaining that when our loved ones with dementia are confronted with negative experiences, it can take a while for them to bounce back, because they cling so closely to their intuitive side.

…people who have Alzheimer’s disease experience prolonged states of emotion—that is, states that extended beyond their ability to recall the causes of the emotion… We are usually with our clients for extended periods of time, and we find that when we create positive moods they can last for hours. We have also found that something negative, as with Maria’s conviction that she’d committed a faux pas at the doctor’s office, often remains in a person’s subconscious and might affect their behavior for as long as a week.

CHAPTER SIX – Location 1629
Cornish, J. (2019). Dementia With Dignity: Living Well with Alzheimer’s or Dementia Using the DAWN Method® [Kindle iOS version]. Retrieved from Amazon.com

What I’ve learned from Judy is that when we monopolize on what what remains – the skills our loved ones still have and those intuitive processes in our brains that allow us to appreciate beauty, empathize with others, and be free in the moment, we can help our loved ones with dementia live the best life possible. Not only that, but we as caregivers can build the tools we need to rise above the day-to-day struggles of dementia caregiving.

When people experiencing dementia have companions who support their abilities and recognize the skills they are losing, they can remain safely at home for much longer, rather than be put into care facilities at great expense to their wellbeing and their families.

CHAPTER THREE – Location 717
Cornish, J. (2019). Dementia With Dignity: Living Well with Alzheimer’s or Dementia Using the DAWN Method® [Kindle iOS version]. Retrieved from Amazon.com

Judy outlines how we can help our loved ones with dementia be successful with six tools:

  1. Mood management
  2. Security – in care and in confusion
  3. Social Success
  4. Sense of Control
  5. Sense of Value
  6. Secure Future

One of the biggest things I took away from Dementia with Dignity was a gigantic validation of the care I have been providing for my grandma. Over time, I have stealthily increased her support based on her changing needs, starting with a couple buddies that checked on her a few times a week during the day to break up the monotony and make sure she was was doing things that mattered, to a working with a team of Sidekicks. As time goes on, we take over the reins when needed.

A lot of it really comes down to being person-centered at the end of the day.

As I flipped through the pages, I found myself making notes and snapping pictures of pages and bookmarking passages so I could share them with Grandma’s Sidekicks and After reading Judy’s book, I realized that we are doing a lot of things right, but I also have some things I need to work on.

Dawn Method graphic for grandma - dementia care

One of my favorite parts of the book was where Judy models how a companion for someone with dementia can help facilitate a conversation with their friends in Chapter 9. She provides an example of how we can ask questions and keep a conversation going for our loved ones who can’t recall vital details about their friendships. This is a common occurrence in my caregiving life with Grandma. People at her church and her teacher colleagues come up to her all the time, unaware that she has dementia, and she often leaves the encounters feeling frustrated or confused.

The biggest thing I realized I need to work on after reading Judy’s book is keeping my grandma waiting. Even though my grandma’s habit of being super early for everything rubbed off on me in my early years, ever since I began caregiving, I have not been the most punctual person. Judy explains that when a person has dementia, time gets scrunched and stretched like you are in the hall of mirrors at a carnival.

Judy shares examples throughout the book of real life people and situations to illustrate how the DAWN tools can support well-being and help you turn around when things aren’t heading the right direction.

Who should read this book? Anyone who

  • family caregivers affected by dementia
  • works in the health care field,
  • cares about someone with dementia.

I hope you’ll get a copy for yourself. It’s an amazing book. It will truly change your perspective on supporting a loved one with dementia.

Get your copy of Dementia With Dignity: Living Well with Alzheimer’s or Dementia Using the DAWN Method®  on Amazon. I bought the Kindle version, but it is also available as a paperback.

This blog post/email contains affiliate and referral links which may reward me in the event of a subscription or sale. I use these funds to feed my cats. Thanks for the cat food.

One Year of Blogging: Challenges

Nobody’s perfect. Even though you might see me as a “caregiving expert,” I am still human. I have my stumbles. Things people say and do trip me up— hold me up, sometimes for days….

Even though outwardly it may seem like it’s all peaches and cream over here and I GOT THIS, I’m constantly on my toes,
predicting calamity, adjusting my strategy to counter interference from complexity, responding to all of the people and pressures calling my name, all while trying to maintain some grace and humility on this journey

Reflecting on the past year, here are the major challenges we’re working on overcoming or reined victorious as our rock has completed its 365 rotations. They might sound a little familiar, because they are the same struggles I shared with you last year.

What can I say?
I’m only human.

Dealing with Decline

We are all on a journey with the same outcome in the end. As family caregivers, we must press on, knowing that we are fighting a losing battle.

I carry it with me everyday. The anxiety that I must maximize the efficiency and joy of every single minute, because our precious time is limited (See: It’s Only Temporary).

This year, the connection in my grandma’s brain that helped her remember my relationship to her broke. She’s called me everything from her sister to her cousin and told me people like Uncle Kenny told her “XYZ” thing, when I know it was me.

Even though I have been assuming for a while she didn’t know me but was just masking her dementia, it has become very clear she doesn’t always recognize me.

I wonder, how much longer can I be the Head Caregiver in Charge if Grandma doesn’t remember I was ever in charge to begin with?

Working as a Team (the struggle continues)

forming storming norming performing

All high performing teams have a life cycle. Since last year, we have had a number of changes and transitions when it comes to Grandma’s supports and Sidekicks staffing pattern. Right now, our new team has moved past storming into norming. It feels good 😎😎😎

Despite my best efforts to improve, working as a team has always been challenging for me, especially when it comes to Grandma, because I have been in charge of SO MUCH for SO LONG. Sometimes it’s hard for me to accept the fact that others take some of the stuff off of my plate or let go of it altogether.

Also, I’m an only child. A loner, Dottie.

My friend, Gordon (@gordondym), a fellow family caregiver I met in the #latenite #carechat, calls it “I Spot it, I Got it” mentality.

I’m still working hard to disrupt this mindset by delegating tasks and making sure people have all the pertinent details of how I *expect them* to do that task* so I’m not setting them up for failure and setting myself up for disappointment.

That, and practicing the skill of letting it goooooooooooooooooo!

Managing Work-Life Balance

I’m the kind of person who never feels satisfied unless they are doing something. Sometimes, I find myself feeling slackerish from never stopping to take a break. And then I need to take a break.

I lovingly coined it “conserving energy,” to relieve the guilt I feel from not accomplishing as much as I want to everyday.

As cute as conserving energy may be, now that I’m self employed, time management has become of prime importance. I can’t spend too much time piddling around.

You know the cycle. We feel stressed out. We need to take a break. We are so tired from not taking one, that we give ourselves an even longer break. Then, hilarity ensues as we work to get ourselves back on an even keel.

Photo: handwritten schedule of Rachel's life

I’ve been working on blocking my calendar to include conserving energy so I don’t have to feel bad about it.

In fact, I’ve been working on blocking my calendar for a lot of things – Grandma, my graphic & web design business, my Certified Caregiving Consultant activities, my Sandwiched KC work, and yes, TakingCareofGrandma.com posts and promotion.

I have spread myself pretty thin, huh? Managing the projects that pay my bills (read: work), while making time for the projects that give me joy is always a challenge. That is why I’m trying to rely heavily on leveraging my calendar as a tool to accomplish my goal of taking over the world (MWAHAHAHAHA.. jk kind of).

In my short years here on earth, I’ve fallen prey to Parkinson’s law (the adage that “work expands so as to fill the time available for its completion”) far too often to let the universe suck my time away from me.

Putting Space between Loss

If you have been keeping up with us here at TakingCareofGrandma.com, you know that last year I lost a very close friend of mine after marching onto the front lines to care for him in the final weeks of his life.

Grief comes in waves. Sometimes big, sometimes small. It hits me everyday, sometimes out of nowhere. A person I see at a party who crossed our paths while he was here on earth with us. A familiar smell. A particular date.

All we can do when we lose someone is put some space between our loss and continue to press onward, recognizing that our memories and love for our person will always remain.

I thank God for the challenges I meet on my path.

If it weren’t for experiencing adversity and making mistakes, we would never learn and grow. In our stumbles, we find our steadies. That’s when we reach resilience.

Bring it on, world!

Here’s to the next year of adventures and mishaps!

I hope you’ll stick around with me for the TCG Blogiversary Party activities throughout the month!

TakingCareofGrandma.com Blogiversary #TCGTurns2
Coming up:
Be sure and join us for the Blogiversary Party on May 23, 2018! We will feature videos from real life millennial caregivers.

Get the details about the blogiversary festivities as we add events and more info becomes available! The link is: http://rachelh15.sg-host.com/blogiversary 

I’m Only Rachel Sometimes

Not too long ago, my grandma started referring to me as “Mom” when I’m not around.

Photo: Barbara, at left, as a little girl, with her mom, at right, dressed up for Santi-Cali-Gon

At first, it freaked me out. But the more I thought about it, I became okay with it. Think about how your mom makes you feel. She makes you feel safe, loved, and important. I know that her calling me “Mom” sometimes is just a manifestation of that love feeling we have for our moms.

When she was in the hospital for a blockage, she relayed something I had said to her over the phone, but to hear her tell it, it was my uncle Kenny who told her.

My uncle Kenny was cheerful and wild and everyone loved him. Everything about him was loud and extreme. My uncle Kenny could make you feel like you were on top of the world, and he could also make you feel like WWIII was on the horizon. It’s no wonder sometimes when I get fired up, she likens me to my unk.

When these things started happening, I knew it was no longer safe to assume that she knew just exactly who I was.

Well, it finally happened. Last week, my grandma didn’t recognize me for the first half hour I was with her. Just today, she recognized me at first and then a couple hours later I was someone else. They tell you it will happen, but you’re never fully prepared for it.


If you have been following me on social media, you know that my grandma’s long term care insurance claim was accepted recently.

Photo: group of women sitting around a table, smiling

My friend, Julie, runs a company that helps people with developmental disabilities that have Medicaid waivers self direct their supports. We leveraged her system to carry out the same model of support at Grandma’s house. Being the kickass provider she is, of course wanted to meet Gma and get to know her better. So we devised a plan to invade bingo at the senior center my Gma frequents. Julie’s upbeat spirit infected the table and before you knew it, we were all laughing and smiling and applauding the bingo winners.

The next day, Gma recounted her day as if I was never there. She said, “Those girls sure had a good time with us!!!” I just nodded my head and said something like, “It sounds like you all had fun,” but inside, my heart panged and I could feel the tears rushing to the surface.

It is both heartbreaking and hilarious to me that this is happening. My ego tells me nobody could ever forget who I am. The pragmatic caregiver in me relishes in the fact that I can be someone else sometimes.

Yes, I know my grandma has dementia.

Yes, I know that it means that she might not always know who I am.

Yes, they said this might happen.

Yes, I know I am ignoring completely rational reasons and basic scientific explanations for what was happening.

Yes, I know I may have spent entirely too much time perseverating on this.

The more I thought about it, something occurred to me. I couldn’t help but ask myself: Does she not remember that I  was the one at bingo because “those girls” were bubbly and cheerful and happy to be with her? I realized maybe I needed an attitude adjustment.

After all,

Those girls’ infectious attitudes made Grandma feel good and made bingo special for her that day. They came there just to be with her and have a great time. Maybe I should be doing a little more of that.

So now, instead of getting in my feelings and spending so much time dwelling on the fact that my grandma is losing the ability to recognize who I am, I am working on spending time focusing on what we do have- which is precious time together and infinite opportunities to experience joy. I want to appreciate the fact that I am becoming a special blend  of all the people in her life who have loved her and made her feel safe and secure. I’m looking forward to seeing who I will be tomorrow 🙂

My perspective on dementia has been influenced greatly by the work of Judy Cornish. For great information and strategies on coping with dementia, get her books The DAWN Method and Dementia With Dignity and follow her on social media.

@takingcareofgrandma