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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

Manic Monday: Grandma’s Daily Organizer

May 15, 2017

My friend asked me a couple years ago to recreate an organizer she had found online. After my grandma had been home for a few months after a 9 month series of hospitalizations and rehabilitation stints in skilled nursing facilities, I learned a few things. I couldn’t keep it all in my head, and there was nothing out there in the stores that I could buy that followed my train of thought, so I made her daily organizer sheets so we could both be on top of our game.

  1. She was forgetful. As time goes on, she grows increasingly more forgetful. She forgot what she did during the day. So I wanted her to have a way to keep track so we could talk about things in the evenings when I’m with her. She forgot what she ate for breakfast and lunch. So we made a box for that. Grandma was having trouble remembering to take her medicine or when she took it. So we made a box for that. It changed recently, because we cut back on the amount of tramadol she was taking to see if it would clear up some of her confusion and memory troubles.
  2. Like a lot of older people, she answers the phone every time it rings. People she knows and legit companies like the newspaper were calling her, but also scammers were calling her. Every time someone said she owed them money, she’d just pull out her checkbook. Now, she writes down who called her/who she called and we talk about it.  (We’ve also installed call blocking apps to thwart this problem.)
  3. Mail is a big deal to my grandma. She looks forward to getting her mail everyday, and she takes it very seriously. She was getting mail from lobbyists, scammers, fake debt collectors, and all types of charitable organizations begging for money. And she’d constantly pull out her checkbook and just write checks and throw them in the mail before I could intervene. Or she would throw mail away or misplace it. So now, we have a record of the mail she gets so I can ask her about it and we can locate it and file it.
  4. As Grandma got used to being home, she would get bored and lonely. She was calling me at work a lot. Many of the times she was calling me was for little things. I can’t always answer right away, so by the time I’d call her back she would forget what she wanted to tell me. So I created a box for her to write things down that aren’t urgent and necessarily important.
  5. Ostomy care can be overwhelming. My grandma has a colostomy bag. I admit even today that there is a lot I have to learn about her ostomy, because I know eventually I will likely be taking care of that for her. She was having trouble remembering when she emptied her bag or when she put a new bag on. She could never tell me how full it was or what the consistency of her output was. Instead of trying to struggle and remember, first I added a box to indicate whether she changed it or not. That wasn’t really helpful. I found an image of an ostomy bag, and after a little research to the optimum volume to empty it, added hash marks to indicate how full her bag was when she emptied/changed it, and the consistency of her output. This way, if she is having trouble with her bowels, we can look at what she’s eating and add or remove something from her diet.

 

Other features of her daily organizer sheets include:


Tracking Mood, Emotions (and Memories)
After spending a bit of time with my grandma and having some hindsight, I believe she is in the moderate stages of Alzheimer’s (she has a family history, but has not been diagnosed). This isn’t something we talk about in depth, although she admits regularly her memory is failing her. After stage 5, people begin to have severe emotional and behavioral changes. I want to be prepared for this, so I am tracking her mood. If she doesn’t fill it out, I always ask her.

I also want her to take a moment and appreciate the things, people, and experiences that give her joy. So this box makes her pause and
think about something that made her happy that day. It also helps me get to know my grandma and what she likes, so we can keep doing the things that make her happy. If she doesn’t fill it out, I always ask her.

I originally had a box that said “Today I thought about…” and I was interested to see if she had any memories that stood out to her throughout the day or what was on her mind, but she never filled this box out, so I took it off.

 

Don’t Forget box

If something special is going to happen the next day (or a few days in advance), I write it in this box. This box usually lists things like church functions, visitors that day, and important dates like birthdays and anniversaries.

 

To-Do list

We didn’t have a to-do list on the daily sheet at first. I threw it in there to fill some space after I realized she wasn’t getting as much mail and as many phone calls as I made space for. I have found it helpful to write things she needs to do the next day in this space, and I sometimes write down for her to call and check on so-and-so.

 

These daily sheets have been very helpful. It gives us data on her ostomy, mood, and diet, and it serves as a daily journal. It also gives us something to talk about at night. I glance at the daily sheets and if I have any questions about anything on there, we talk about them. On the back of the sheets, I write down the time I was there, what we did, and if we made any major discussions or talked about something important. Using the sheets also helps me stay organized, giving me reminders of things I need to take care of and helping me keep track of her health.

At first my grandma kind of scoffed at the daily sheets. I may be projecting my feelings on her, but I thought she might get the impression I was trying to micromanage her life. I simply explained to her that I am charged with helping her manage her affairs and take care of her health, and so we have to talk about things that come up and track what is going on. Now, she loves them and if she is about to run out, she is constantly reminding me to print her more.

You can check out the different versions of her daily organizer sheets and how it has changed over time below.

Graphic: Screenshot of Barbara's Daily Organizer, latest version 2.3
Barbara’s Daily Organizer, version 2.3
Graphic: Screenshot of Barbara's Daily Organizer, version 2.2
Barbara’s Daily Organizer, version 2.2
Graphic: Screenshot of Barbara's Daily Organizer, Version 2
Barbara’s Daily Organizer, version 2.0
Graphic: Screenshot of Barbara's Daily Organizer, original version
Barbara’s Daily Organizer, latest version 1

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