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Coming out From the Rock: Increasing Joy and Honoring Last Wishes

March 12, 2019

COMING OUT FROM THE ROCK INCREASING JOY AND HONORING LAST WISHES

Beyond the basic activities of caregiving (read: personal and medical care, housekeeping, etc), we family caregivers also often carry the great responsibility of fostering our loved one’s well-being through creating experiences of meaning and joy.

If you haven’t started caring yet, or you are currently caring, my advice is find out right now while they are able to express what they love, so you can make sure these things continue when their abilities change. There is no time to waste!

It is important to collect as much data and information about your loved ones’ preferences and experiences NOW while you can.

You will need to know what makes them “tick” down the road to soothe and console them and, quite frankly, make it worth getting out of bed sometimes.

In this post, we’re going to look at what questions in a conversation around what is important to your loved one might look like.

You might be aware that my grandma has Alzheimer’s. Looking back, one of my few regrets is not spending more time getting to know my grandma as a person. Since I’m her only living family, there’s not really anyone I can ask about her past. I have to rely on what little she actually remembers and build on that. Since I can’t go back in time, I try to look back what things we when as I was a child and try to recreate those moments. I search old photographs for clues.

Even if you feel pretty sure of the answers, it’s still worth talking to your family members (even writing it down) to get an even better idea.

Note: If you read these questions and think to yourself, “Wow, I don’t know anything about my folks,” don’t feel bad. Take the time to get to know them now on a new level as an adult.

Here are some key things you will need to know to be able to increase your loved one’s joy:

What is their routine?

We are all creatures of habit. Our daily rituals and activities mean a lot to us.

As people get older, they gradually become less in control of their day. If we know how the the general flow of their day goes, we are better equipped to keep that routine going for them to the greatest extent possible, so they can feel safe and more in control.

What hobbies did they have when they were younger?

If you asked my grandma right now what her hobbies are, she would only tell you about what she does everyday as of late.

Growing up, I remember my grandma always had a baller flower garden. She had tons of plants inside. She sewed clothes and all types of home goods. She loved reading. There were books and magazines and newspapers piled all over her house.

Talk to your folks if you can, look through mementos, and use your noodle to collect the data you need to fill their time with meaning later on.

What were they known for back in the day?

Even when we are getting older, we have a lot to contribute. If you can find out what their special skills, gifts, and talents are, you can exploit them to add extra meaning to your loved one’s days.

Everyone I have talked to so far says my grandma was super smart and everyone always looked to her for the answers. At her 80th birthday party, one of her childhood friends told a story of them dueling pianos from their bedroom windows. I’ve unearthed old clippings talking about awards and honors my grandma had received over her lifetime.

I use these clues to build on them to create opportunities for her to find joy and meaning in new ways.

What animates them?

Recently Grandma had to tag along to the senior center with me because she didn’t have a Sidekick that day and I had to deliver meals. We planned to have lunch there and we discovered they would be having a Guitar Jam after lunch. People started piling in for it and next thing you know, there are a bunch of folks dancing in the middle of the room. My grandma lit up. She had a smile on her face and a twinkle in her eye. You see, she used to go to the ballrooms to dance with her own folks and that’s how she met my grandpa.

Pay attention to moments like these. Once you recognize them, you can recreate them later.


What are their favorite things?

Food

If your person can’t remember, think back to when you were growing up. What were some of their signature meals? Did they have a special recipe that was handed down from the past? Store these things in your memory bank for later, or when you’re helping them plan and prepare meals

TV shows

My grandma loves soaps and game shows. She always has. I also remember watching ice skating with her when I was little. Before she got sick, on Saturdays she would always turn on Lawrence Welk when I was leaving. Find out what shows they like to watch to help them when mindlessness is needed.

Clothes

We don’t spend a lot of time thinking about this, but we tend to be particular when it comes to what we wear. My grandma used to always wear polyester skirts and her sneakers. She was always very concerned about her shirts. She’ll wear a crew neck or a polo shirt… but forget about a V-neck or anything that is “too revealing.” It’s important for us to know about these preferences, so we can remember them and help our loved ones stay comfortable.

Places & People

Let’s get real here: Since you’ve gotten older, your folks have probably built a life for themselves that you might never know about if you don’t take the time. You’ll want to find out your loved ones’ favorite haunts and hideaways, the places they go “where everybody knows your name.” If you begin caring after a long term hospitalization like I did, you will want this information so you can help them restore those connections and recreate those experiences for them (to the greatest extent possible).

Music

When I was a little girl, my grandma listened to country music. That was it. When I started caring for her, she didn’t really respond to it the same way.

Sometime last year my grandma shared with me that she loved Liberace. This is one of the few very specific things she’s ever told me. Her parents took her to a concert even, when he came to Kansas City. Ever since, we listen to Liberace pretty much any time we get a chance. Liberace is like instant joy for my grandma.

Music is a very powerful tool for caregivers. Just a basic google search on the benefits of music for the brain will tell you everything.

Knowing as much about your loved one as possible will take you far in your caregiving journey.

Resource: If Only You Would Ask

I found this book at the National Caregiving Conference last year. How I wish I would’ve had this like ten years ago!

This book lists questions on a bunch of topics that help you when you find yourself struggling to carry on a conversation with an aging loved one.

Get the book at https://www.amazon.com/If-Only-You-Would-Ask/dp/1627874631

NOTE: Do not use this book if a person cannot remember. We do not want to create feelings of sadness or confusion.

Quality of Life as People Decline

Advanced directives. Living wills. DNRs. These are terms you might have heard in the hospital if you’ve been there with your loved one. They’re part of a subject that can be uncomfortable, but is still important to broach.

If you’re caring for a loved one, you might not want to think about the fact that they are on a downward path. Despite this, before it’s too late, you should talk to your loved ones about what joy looks like, all the way until the very end.

We need to ask questions before people are suffering from a chronic/terminal illness or nearing the end of their life about how they would want to live out their last days.

In the event of life threatening emergencies and illnesses, some of the interventions used can be very painful and can increase and prolong suffering.

While your loved one is able to make informed decisions and express their wishes, you should get clear on what they would want in the event serious life-sustaining measures and medical interventions are needed.

Resource: Caring Conversations® Workbook

The Caring Conversations® Workbook, developed by the Center for Practical Bioethics, can help you through this conversation. It even includes a Durable Power of Attorney for Healthcare Decisions form for your use.

Get the Workbook at https://www.practicalbioethics.org/resources/caring-conversations/

Advanced Directives & Dementia

This blog post recently made big waves. The author recounts her experience with her parents, and watching her father fade away from dementia.

Most conversations around Advanced Care Planning do not dare touch dementia. But the fact remains that no one is safe from dementia, and what a person would want for themselves and those involved should be considered *just in case.*

If you do nothing else as a result of this post, please read With Dementia, More is Needed than a Boilerplate Advance Directive https://theconversationproject.org/tcp-blog/with-dementia-more-is-needed-than-a-boilerplate-advance-directive/

The Inevitable

As much as we hate to think about it, we will all move on to greener pastures.

Here are some questions to ask your loved ones about when that time comes:

  • How do they want to be remembered?
  • Do they want a big funeral or a small celebration?
  • Do they want to be buried or cremated? Do they want to donate their bodies to science?
  • Would they like to establish an endowment or have a memorial in their name?

These conversations are difficult to have. Like many others, I suggest monopolizing on current events in your life or in the news, using them as prompts to begin a dialogue about what the good life will look like all the way through to the bitter end.

Using a tool might help make the conversation go a little easier, too.

Resource: Always Prepared Binder

This free resource was created by a woman after losing her father to cancer. She wanted to have all important information in one place in case of unexpected circumstances. I printed these out and filled them with my grandma, telling her we “were getting organized.” Filling out this notebook is a non-intrusive way of finding out a lot of this information.

Get the Binder: https://www.thirtyhandmadedays.com/always-prepared-binder/

When a person’s final wishes is all mapped out, it’s not just a relief for the person, but also their family. During times of intense grief and loss, it’s hard to make funeral arrangements. If there’s a plan in place, you can focus on what’s important- honoring and remembering and holding onto the joy.

The topic of joy came last, but it might be the most important. We can have joy- no matter where we live or how little we have- as long as we know how to create it. The hope of having joy is what keeps us moving forward everyday. Fostering this is one of the supreme privileges of caregiving.


I hope you found the Coming Out From the Rock Series helpful. These are questions I wished I’d asked and things I wished I thought about before I became my grandma’s primary caregiver. There is a lot more to long term care and caregiving than people commonly think about before they are thrust into it. Hopefully, with a little time and talking, you’ll be more prepared to care.

Coming Out from the Rock:  A series featuring questions to ask and conversations to have about life as your folks get older.
  • Looking in the Mirror: who are you now, outside of caring?
  • All About the Moolah: how will your LO afford to live?
  • Everybody Needs Somebody Sometimes: how will your LO get the help they need?
  • No Place Like Home:where is your LO going to live?
  • Tech Sweet Tech: how can technology help you care?
  • Increasing Joy and Honoring Last Wishes: how will you help your LO find joy and honor them when they’re gone?

· Coming Out from the Rock, Coping with Caregiving, Quality of Life, Uncategorized

Coming out From the Rock: Tech Sweet Tech

February 12, 2019

COMING OUT FROM THE ROCK TECH SWEET TECH

Technology is our life support as millennials. Many of us would not be able to function on a daily basis without it.

Our generation is used to having cameras in our faces. It doesn’t phase us when we get an idea and it’s the first thing that shows up in Google. It just comes natural to us.

Don’t assume that just because you are comfortable with something that your elders even know about it. Just how many times have your folks called you when they got a new device or were setting up a new service and needed your help? Put in some work now, or the calls will just keep coming… and coming.. and coming…

Here are some questions you should know the answers to when it comes to technology and your aging parents.

What kind of phone do they have?

What is their email address?

Do they have an Amazon account?

Are they paying their bills online?

Do they know how to look up an address on Google Maps?

What’s their favorite show on Hulu or Netflix?

They may sound trivial, but if your answers to these basic questions are “I don’t know,” you need to step your game up!

When I sent my mom a PDF to read the other day and she sent me back a Google Doc with comments, I just knew she’d be alright.

My grandma, on the other hand, knew only one of these (her email) when I came on the scene as her caregiver. When I started taking care of her, she had an old flip phone. I had to upgrade her.

The more you can do now to get your loved ones acquainted with and familiar with technology all around them, the better. [Another win: you might end up saving them some money cutting ridiculous extra costs like overpriced cable and internet, stamps, equipment.]

Get to work, right away!

The good news is there is TONS of technology out there, many of it simple stuff you can go out and buy or order online, that you can start using right away to start weaving technology into their daily lives.

Today, technology can be used as a support with many different needs. A beautiful and vast array of devices and services range from simple to sophisticated. Since it continues to creep deeper and deeper into every facet of our existence, the private sector is now entrenched in finding solutions that make our devices and environments smarter. New technologies are emerging all the time to make life easier for everyone.

The future is bright for those who want to age in place and want to rely less on other humans for help.

Check out my grandma turning off her lights with the help of her Google Home Mini.

Watch Grandma get up without worrying about falling or losing her balance using her lift recliner.

Already caring? That’s great. Amazing everyday apps and equipment are out there to boost your caregiving superpowers and enhance your mad caring skills.

Want to explore how technology can help you in a caregiving role? Check out our featured technology resource.

Resource: Tech Ur Elders

TechUrElders matches caregivers of aging parents, grandparents and elders with the right technology for their unique caregiving needs. Their custom technology plans save you time, money and a little bit of sanity. Take control of caregiving, get your custom tech plan today. Get the plug on caregiving technology at techurelders.com

In the next post in the series, we’re going to look at questions related to creating moments of joy and honoring last wishes. Aside from the instrumental activities of caregiving, we also have the important responsibility of facilitating our loved ones’ well-being. Not only that, we are often charged with making sure their final wishes are carried out.

It is important to collect as much data and information about your loved ones’ preferences and experiences NOW while you still can. I will share some questions and resources with you to help you on this adventure.

Coming Out from the Rock:  A series featuring questions to ask and conversations to have about life as your folks get older.
  • Looking in the Mirror: who are you now, outside of caring?
  • All About the Moolah: how will your LO afford to live?
  • Everybody Needs Somebody Sometimes: how will your LO get the help they need?
  • No Place Like Home:where is your LO going to live?
  • Tech Sweet Tech: how can technology help you care?
  • Increasing Joy and Honoring Last Wishes: how will you help your LO find joy and honor them when they’re gone?

· Coming Out from the Rock, Coping with Caregiving

Coming Out from the Rock: No Place Like Home

November 25, 2018

Photo: Orange house sitting on top of a snail, text at left reads Everybody needs somebody sometime... Coming out from the Rock

GIF: Dorothy from the Wizard of Oz saying "There's no place like home"

We all know how Dorothy feels at the end of the Wizard of Oz when she chants, “There’s no place like home.” It’s how we feel walking in the door after a long day or returning home after a trip.

We all deserve to feel at home. The fact remains that it may not always be possible to stay in the place we currently consider our ‘home.’

Have you talked to your folks about this yet?  [Read more…]

· Coming Out from the Rock, Coping with Caregiving, Uncategorized

Coming out From the Rock: Everybody Needs Somebody Sometimes

September 3, 2018

Graphic: Dean Martin black and white photo, text at left reads Everybody needs somebody sometime... Coming out from the Rock

Help. We all need it to get through our day-to-day routines.

Someone turning 65 today has almost a 70% chance of needing some type of long term care services and supports in their remaining years (LongTermCare.gov). Those are some pretty good odds.

What kind of support a person needs and receives has a major impact on their quality of life. It can determine where they live, affect their health, and more.

It is important to think about what that support might look like so that you can have everything lined up when your LO needs it. [Read more…]

· Caregiving Like a Boss, Coming Out from the Rock, Uncategorized

Coming out From the Rock: All About the Moolah

July 24, 2018

Graphic: A pile of money COMING OUT FROM THE ROCK - ALL ABOUT THE MOOLAH

Finances. They determine everything:

  • where you live,
  • what kind of help you get, and
  • what quality of life you’ll have.

Money is a very uncomfortable topic for most people, but it is one of the most important aspects of life to have figured out if you think caregiving is in your future.

Here are some questions and conversations to have around the moolah.

What is their income situation? Will your LOs continue to work full or part time through retirement? Will they be able to draw from retirement or collect monthly pensions? 

You’ll need to have a picture of their monthly income and expenses, so you will understand what they’ll be able to afford.

Social Security isn’t going to cover it. Your LO may be able to receive Social Security (SS), but SS is only one type of pension that older people may be eligible for. Depending on their past employment (public servants, teachers, for example), they might not get a monthly SS benefit at all. 

Payments can vary from $40 to $2,788 for one person, with the average falling around $1,100. Some seniors have their Medicare premiums automatically deducted from their SS payments, so it becomes even less. No matter what end of that range your LO falls, it’s definitely not going to be enough to live off of. You can guesstimate how much your LO will receive at https://www.ssa.gov/oact/quickcalc/

And we are always hearing about how we can’t count on SS as we move into the future with constant threats of it being gutted in the federal budget.

What assets do they have?

Do they own their house or other properties outright?

Do they have investments and stocks? Do they have money in savings or offshore accounts (haha, yah right…)  

These are things you may have to leverage in the future to cover the cost of any support they may need, move into a new home, or buy medical equipment, or just go on a vacation. To be able to use them when they’re needed, you have to know about them!

What does their health coverage look like?

Medicare covers a lot, but it doesn’t cover everything. It’s important to figure out what your LO’s health needs are and what kind of health coverage they will need in the future. If they don’t have supplemental insurance, they may be responsible for some of their health costs out of pocket, which factors in to how much they may/should be putting away now.

And remember, Medicare doesn’t pay for long-term care.  (Teaser: We’ll talk more about long term care and how it works in the next post in the series.) 

 

Who does my LO want to make their decisions about their finances if they’re no longer able to do so?

It is important to talk with your LO about who they trust to handle their affairs in the event they become unable to do so. A Durable Power of Attorney that encompasses finances should do the trick if someone else needs to take the reins. It’s a good idea to have this in place before a crisis hits.

These questions are literally skimming the surface of all things related to money. They are a good start to get you talking about what your family’s outlook will be in the event they need support. Don’t live under a rock. Have the talk.

Resource: Always Prepared Binder
This free resource was created by a woman after losing her father to cancer. She wanted to have all important information in one place in case of unexpected circumstances. I printed these out and filled them with my grandma, telling her we “were getting organized.” Filling out this notebook is a non-intrusive way of finding out a lot of this information.

https://www.thirtyhandmadedays.com/always-prepared-binder/

—

In the next post in the series, we’re going to get to the bottom of long term services and supports (lovingly referred to as LTSS). A lot of people think that LTSS only come in the form of paid or government services. I will help you see that there is so much more to long term care than what typically comes to mind. We’ll look at some of the questions to ask and points of research to investigate as you prepare to care.  

Coming Out from the Rock: 

A series featuring questions to ask and conversations to have about life as your folks get older.

  • Looking in the Mirror: who are you now, outside of caring?
  • All About the Moolah: how will your LO  afford to live?
  • Everybody Needs Somebody Sometimes: how will your LO get the help they need?
  • No Place Like Home: where is your LO going to live?
  • Tech Sweet Tech: how can technology help you care? (Extra credit: check out Tech your Elders)
  • Increasing Joy and Honoring Last Wishes: how will you help your LO find joy and honor them when they’re gone?

· Coming Out from the Rock, Coping with Caregiving

Coming out From the Rock: Looking in the Mirror

July 19, 2018

Graphic: Rick James looking in mirror in "Give it To Me" COMING OUT FROM THE ROCK - LOOKING IN THE MIRROR

A good first step in being prepared to care is taking a look in the mirror.  [Read more…]

· Coming Out from the Rock, Coping with Caregiving

Coming out From the Rock: Tough Conversations and Hard Questions

July 17, 2018

Graphic: takingcareofgrandma.com presents: COMING OUT FROM THE ROCK: Tough Conversations and Hard Questions

GIF: Patrick Star coming out from under his rock houseLet’s face it. Your folks are getting older.

They might not need help right now (or ever – highly unlikely), but the chances they will need some type of help in the future are pretty high. According to LongTermCare.gov, “Someone turning age 65 today has almost a 70% chance of needing some type of long-term care services and supports in their remaining years.”

As family and friends, the responsibility will fall primarily on us to care for our loved ones (LOs). About 60% of older adults who need long term care rely exclusively on family and friends to provide assistance [AARP]. As my friends Gael and Deb said, “Don’t live under a rock. Caregiving is in your future!”

We are the long term care system of America, friends.

We literally have absolutely no control over what can happen tomorrow. Even with the best laid plans, things can go awry.

Despite this, we can take steps now to have at least an idea of how to ease the transition and how to respond to crises as they come up while caring for aging parents or LOs who need support (or don’t… phew that was a close one!). By having conversations and reflecting inward, we can avoid knee jerk reactions and traumatic events.

The good news is nobody expects you to be the expert. You don’t have to know everything about getting older. There are tons of resources out there to get the information you need and connect with others who’ve walked in your shoes to help you navigate your caregiving journey.

In the TCG Coming out from the Rock series, I will be sharing questions to be asking yourself and your family members to prepare for your caregiving journey as an  Expectant Caregiver™.

These are things I wish I would have asked, discussed, or learned about before my own personal journey began.

In each post, I will share a resource to help you in your investigation.

This series was heavily influenced by The Caregiving Years by Denise Brown, at Caregiving.com.

Coming Out from the Rock: 

A series featuring questions to ask and conversations to have about life as your folks get older.

  • Looking in the Mirror: who are you now, outside of caring?
  • All About the Moolah: how will your LO  afford to live?
  • Everybody Needs Somebody Sometimes: how will your LO get the help they need?
  • No Place Like Home: where is your LO going to live?
  • Tech Sweet Tech: how can technology help you care? (Extra credit: check out Tech your Elders)
  • Increasing Joy and Honoring Last Wishes: how will you help your LO find joy and honor them when they’re gone?

· Coming Out from the Rock, Coping with Caregiving, Uncategorized

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