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It’s time for another round of… is it a UTI or is it Alzheimer’s?

September 20, 2019

It's time for another round of Is it a UTI or is it Alzheimer's???

Sometimes when you’re caring for a loved one in the middle stages of dementia or Alzheimer’s, life can feel like some kind of  warped game show. 

You’re waiting for decline. Expecting it. Your loved one bounces back and forth between okay and a complete mess. 

It can cause you to question your judgement and live in fear of the next cliff. 

Common ailments and illnesses that we bounce back from quickly can be serious hazards to our loved ones with dementia. They can mimic and exacerbate the symptoms we are always watching out for. One of these major culprits is the Urinary Tract Infection (UTI).

UTIs can be an Alzheimer’s caregiver’s worst enemy. It can make you think that you’ve been thrust into the progression of a new stage in the disease.

It can make you question your good sense as the expert on your caree.

It can make you feel the urge to go out and buy a bunch of crap to stop UTIs in their tracks or make a potential UTI go away.

It can make you have a full-on panic attack wondering if your loved one has the right amount of support.

It can make you feel like you’re the only contestant on a dark, lonely stage. There are no prizes. No cruises to Alaska or a brand new car.

Only fear, guilt, and uncertainty.

All you can do is try your hardest to provide the very best care of your loved one.

UTIs can happen no matter how many different ways you try to prevent them and how much you pray they would stay away.

If you find yourself feeling spinning in circles due to a loved one’s changing behaviors, don’t worry, you’re not alone. We’ve all been caught up in the Is it a UTI or… game.

The key to winning is to

  1. knowing your loved one and their habits and behaviors (you’re already winning there!)
  2. educating yourself on the symptoms of UTIs, as well as strategies for keeping them at bay, and
  3. taking quick action if you suspect your loved one with Alzheimer’s may have a UTI (or any other kind of health condition that may be affecting their behavior and energy level). If you let an infection grow out of control, you run the risk of inviting septicemia in. Going septic can be deadly.

I joke, but it is not a game people!

Learn about how you can prevent UTIs with my recent post:

http://rachelh15.sg-host.com/87-on-the-list-of-things-no-one-wants-to-talk-about-ever-utis/

· Managing Healthcare, Uncategorized

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

July 12, 2019

Quote: When you realize for the first time your loved one might have dementia, it feels like the ocean is coming to swallow up your island. " Rachel Hiles, Blogger

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/

· Caregiving Like a Boss, Uncategorized

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

June 5, 2019

Graphic: the good news about dementia is there are infinitely more happy times and experiences to be shared together

“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.

· Coping with Caregiving, Quality of Life

One Year of Blogging: Top Ten Most Memorable Moments

May 1, 2019

TakingCareofGrandma.com Turns 2 Memorable Moments

Today, in honor of TakingCareofGrandma.com’s TWO Year Blogiversary, we are looking back at TCG’s most memorable moments over the past year, as selected by YOU!

Yes, that’s right, according to TCG’s site stats, the articles below were the most popular. Check it out!

10

This post shared how I figured out my grandma didn’t have it together like I thought and what I did about it.

http://rachelh15.sg-host.com/when-grandma-has-more-magazines-than-the-law-should-allow/
9

This post announced my participation in the Do YOU give a care? movement. This movement is led by the SCAN Foundation and is dedicated to building a supportive community for millennials who care for family.

http://rachelh15.sg-host.com/join-me-as-a-messenger/
8

In this post, I explained what Palliative Care is and how it can help your LO avoid unnecessary trips for lab tests and doctors visits.

http://rachelh15.sg-host.com/two-words-every-caregiver-should-know-about/
7

Check out our small screen debut and the video that was created to tell my millennial caregiving story with the Do You Give a Care campaign! It was a pretty big deal!

http://rachelh15.sg-host.com/presenting-rachel-and-barbaras-small-screen-debut/
6

This video will show you why I installed Nest.

http://rachelh15.sg-host.com/feel-your-stomach-turn-as-you-watch-this-disturbing-2-minutes-and-47-seconds/
5

This was me justifying my radio silence here at TakingCareofGrandma.com.

http://rachelh15.sg-host.com/raw-life-update-from-rachel/
4

This post gives you a review of book that changed my caregiving life.

http://rachelh15.sg-host.com/the-dementia-handbook-how-to-provide-dementia-care-at-home/
3

IT’S NOT EVEN OUT YET! It’s great to see you guys are excited about the HCIC Handbook!

http://rachelh15.sg-host.com/head-caregiver-in-charge-the-complete-handbook/
2

This ode to DSPs shared how being a direct support professional in my formative years has laid the foundation for me being the boss caregiver I am today!

http://rachelh15.sg-host.com/i-learned-everything-i-need-to-know-about-caregiving-from-being-a-dsp/
1

I wasn’t even sure I wanted to publish this post. Money totally freaks people out. But the fact is, if your loved one has assets, you should use those first before draining your own. Every situation is different, but you can see how we have made it work.

http://rachelh15.sg-host.com/how-i-managed-to-not-go-broke-as-grandmas-primary-caregiver/

As always, thank you, dear reader, for stopping by TakingCareofGrandma.com! I hope you find these blog posts helpful and they give you ideas of how you might be able to support a loved one you are caring for.

TakingCareofGrandma.com Blogiversary
Coming up:

Tomorrow, May 2, is #ThankfulThursday and I will be shouting out to someone who has made a HUGE difference in my life!

Next Wednesday, May 8, I will share my caregiving victories over the past year!

· Blogiversary, Uncategorized

The Dementia Handbook: How to Provide Dementia Care at Home

June 19, 2018

Graphic reads: "People do not stop experiencing things just because they stop remembering them." and shows the cover of The Dementia Handbook.

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.

 

Graphic reads: "People do not stop experiencing things just because they stop remembering them." and shows the cover of The Dementia Handbook.I always say I find everything good on Twitter. Over the past few months, The Dawn Method showed up in my cross hairs.

Last week, on a whim, I saw a post on Twitter – and I decided to buy their book on Kindle, The Dementia Handbook: How to Provide Dementia Care at Home, written by Judy Cornish.

This book is a fast read. I read it in just a little over an hour from cover to cover (which I did over the span of two sittings).

Dementia is a broad umbrella that includes a number of diseases, including Alzheimer’s. Alzheimer’s is a type of dementia that causes problems with memory, thinking and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks. 

To learn more about Alzheimer’s you can visit https://alzfdn.org/education-resource-center/

To begin, Judy lays out the basic facts about dementia. If you don’t currently know someone living with dementia, the chances are high that fairly soon, someone you know will be affected by it. Contrary to popular belief, all people aren’t able to be cared for in a residential facility. Nor is that is necessarily ‘best practice.’ So to survive dementia, we have to learn how it affects people and how we can adapt to help them live their best life.

Judy explains how the dementia brain works and the changes that take place when someone is affected by dementia. She covers what people lose (memory, skills), but she also underlines what they keep (the ability to enjoy beauty and live in the moment).

Judy gives a broad overview of what person-centered care for a person with dementia looks like. She shares the key elements of care that can enhance what people keep when their brains and bodies are changing. Then she goes on to give more specific strategies for helping an aging loved one with dementia age in place at home.

She covers a ton of topics, from helping with daily activities and recreation to ensuring safety and feelings of security. She offers advice and tips for everyday life: grocery shopping, finding misplaced items, and communicating with other people.

At the end, Judy shares the rationale for caring for loved ones with a form of dementia at home. I rejoiced when I got to this section. Judy confirmed and validated the values and beliefs that I have come to embrace over the years. She challenges the commonly held misconceptions around elder care in our country. It’s a fact. The current system of long term care is not practical. It is out of reach for many families. But even more than that, supporting our loved ones and aging community members is the compassionate thing to do. After a life of giving back to our communities and taking care of us, it’s time we honor our elders’ choices and rights.

This book helped me realize I was on the right track. It gave me some very smart strategies to act on. More importantly, it helped me understand some of the things that I have been doing that weren’t necessarily therapeutic for either of us.

I’m so glad I found this book. I will be telling everyone about it. Even as I read it, I found myself screen-shotting pages to share with my grandma’s ‘helpers’ to help them grasp my vision for supporting my grandma and reinforce things I’ve been saying all along.

Who should read this book? Anyone who

  • has a loved one who is getting older,
  • works in the health care field,
  • family caregivers affected by dementia (or not).

The tips and strategies in this book can be used to support anyone who is aging or has a disability.

Get your copy of The Dementia Handbook: How to Provide Dementia Care at Home on Amazon. I bought the Kindle version, but it is also available as a paperback.

 

Follow The Dawn Method on Twitter at @thedawnmethod. Visit them online at thedawnmethod.com

· Keeping Grandma Safe, Quality of Life, Uncategorized

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