TakingCareofGrandma.com

The H-Word (or Why I Haven’t told the Whole World my grandma’s on Hospice)

Hospice.

The utterance of “hospice” typically unleashes a wave of alarms that pulses through a family’s social network at the speed of sound. 

Being one that works hard to avoid knee-jerk reactions and values privacy,  I have held off on informing everyone that my grandma is now on hospice.

Until now.

That’s because the more I’ve become entrenched in this caregiving journey, I have come to realize that the vast majority of people who are familiar with this word mistakenly associate it with providing comfort care to a person who is in their final days and hours. 

Yes, it’s true that society has the who, what, when, where, and how of hospice all f*#)ed up.

I’m here to set the record straight on what hospice is and what you can expect. 

Who:

Hospice is not just for the patient. Hospice is for the entire network of people that is supporting the patient. That includes not only their close family members and loved ones that are caring for them, but also any paid caregivers. Yes, hospice provides comfort and support to a person who is experiencing a terminal illness or close to the end of life. Hospice also provides relief, counseling, and help with navigating this common rite of passage to those who are close to that person. 

Where & What: 

Repeat after me: Hospice is not a place.

Okay, hospice is not necessarily a place, although there are hospice homes that people may choose if it is appropriate for their situation.

Hospice is a *service* comes to you wherever you are living. If your loved one is in their own home, hospice goes there. If your loved one is in a facility, it enhances the care they already receive. 

Hospice is a service and a philosophy. The philosophy of hospice is providing comfort and making the transition to the next chapter of life easier for everyone involved in a care team.

Hospice is like a hug at the beginning of the end, saying, “We are here for you.”

The hospice we know as a service provides wrap-around support to patients and their families. This includes a care team that offers support with personal care, therapies and treatments, monitoring your loved one’s condition, securing and delivering equipment and supplies, and counseling and emotional support to wade through the grief.

The hospice care team can include:

  • A nurse or nurse case manager
  • A bath aide
  • A social worker
  • A chaplain

Hospice care is covered by Medicare and Medicaid. 
(Learn the specifics straight from the horses mouth.
Medicare & Hospice https://www.medicare.gov/coverage/hospice-care 
Medicaid & Hospice https://www.medicaid.gov/medicaid/benefits/hospice-benefits/index.html) 

When you sign up for hospice, you accept palliative (that is, comfort) care and waive coverage on treatments aimed at curing illness and prolonging life.

Perhaps the most important thing you should know about hospice is that calling in hospice does not mean you are waving the white flag. 

Calling in hospice is smart. 

It means you realize it’s quality over quantity.

It means you know you can’t do it alone (nobody can) and you want to help your loved one be as comfortable as possible as they experience illness and end of life. 

When: 

Hospice is normally called in when a person is expected to have six months or less to live. Just because you found out that hospice may be appropriate or you have begun hospice, it doesn’t mean your loved one will die this week, this month, or even this year.

People sometimes get better and then don’t need hospice. They may hop on and off hospice for many years. 

Nobody has a crystal ball that can tell you when the right time for hospice is. The best thing you can do is learn as much as you can about it, so when you have even the slightest inkling that you might be ready for it, you can make the call.

How: 

You or your loved one can initiate hospice yourselves. Your doctor has to sign off on it, but your hospice provider can normally help with all of that. You can find a hospice provider by searching on the web or in the phone book, and if your loved one is in the hospital, the social worker can help you explore the providers in your area

I have found asking your friends to be the most helpful approach. Chances are, you know a few people who have been through this before. (And it just might work out that you end up finding someone who can help guide and support you through the emotions and challenges that this season of life can bring.) 

First, your loved one is admitted. If this happens following a hospital discharge, they normally meet you within just a few hours of you being home.

Once you’ve been admitted, then you meet your care team. You might meet them one-by-one, or in pairs. Over the course of the first week, you will have met them all. The first time each of them visit, they will ask you a bunch of questions, take a look around your environment, and get to know your loved one, their condition, and their care needs. 

Once all of the logistics are out of the way, they begin visiting more regularly, normally 2-3 times a week. They will give you a number to call and call it the “new 9-1-1.” They will explain to you that you can call that number if you need anything at all.

If you only take one thing away from this post, store this one away in your memory banks: Hospice does not normally provide around the clock care off the bat.

Don’t assume that because a family has gone on hospice, they have the help they need.

5 Easy Ways to Help Family Caregivers who are Dealing with a Loved One on Hospice

This is the most important time to be helping a family through this experience. Don’t wait until the very end, when we typically start to feel like we are being smothered by all the people who want to help out, stop by, or say goodbye. 

As a person has significant declines and/or gets closer to death, hospice becomes more involved. When a person goes “on watch,” that is, death becomes imminent, hospice is usually on the scene 24/7 to provide support and help with care in the final hours. 

So, there you have it. That is hospice in a nutshell. 

My grandma is on hospice. 

Stay tuned.

Helping a loved one manage rental properties… is it right for your family?

If you’ve just begun helping an older relative or having conversations about the future, you may have found out that your loved one owns rental property. You may also be considering investing in rental property now to pay for a family member’s care later. 

Rental property can be a great asset down the road when it comes time to long term care. However, it doesn’t come without its challenges.

In this post, I’ll share my experience as a family caregiver who’s responsible for maintaining a rental property for her loved one and lay out the pros and cons of being a landlord.

My grandma has owned her rental property since she and my uncle Kenny purchased it when I was in middle school. My mom and I were actually living there at the time. He made an offer to buy it after offering to clean it up for the landlord who owned it back then. Once the deal was done, my uncle Kenny moved us over to the other side and with the help of their church, they remodeled one half of the duplex for the pastor of the church (at the time) to live in.

When my uncle Kenny died, my grandma assumed the role of ‘landlord’ at this property. She relied heavily on men from her church to make decisions about what to do and take care of repairs. For a decade, she never raised the rent or renewed any leases. (Selfish Rachel, in her early twenties, didn’t bother to ask Grandma if she needed or wanted help with the duplex–Grandma probably would’ve just declined the offer, anyway.)

When I started taking care of Grandma, I inherited landlord duty. We set up a separate savings account (a *joint* account) for the duplex. I started depositing the rent there. Thankfully, the property isn’t in a hovel or anything. That doesn’t mean we haven’t had to make some major investments and costly repairs. After the first couple of years, I transferred 75% of it to her savings. The money kept building. 

When I created the long term care calculator and realized were were going to be okay, I decided I would use the money she was bringing in from her rental property to pay her caregivers. At the time, it made sense. 

After a year of this, the fund started shrinking. Some costly repairs were needed at the duplex and I wasn’t sure what to do.

Anxious about running out of money, and without an approved long term care claim, I talked to my handyman and some other trusted friends. My handyman suggested raising the rent. (It wasn’t the first time I had heard this suggestion–It had been made much earlier in my caregiving journey, but I figured there was no point in rocking the boat at the time). I bit the bullet and sent the letters out. 

Shortly after that, her long term care insurance claim was approved, and the money started piling up again. Now, we can fix up the rental property and put that rest aside for future care costs and her current quality of life. 

Just like anything else in life, there are both advantages and disadvantages to helping a loved one manage rental properties. If you’re caring for someone who owns their own property, or you’re having conversations about the future and wondering whether maintaining the property is right for you, here are some pros and cons to consider. 

Pros

  • If you feel pretty confident in your loved one’s financial outlook, it’s a great additional income you can use to pay for your loved ones care. As you can tell from our story, if you have someone who is capable of overseeing the upkeep of a property (not just fixing things when they’re broken, but maintaining them), it can be a funding source for long term care.
  • It’s a pretty passive (depending on the condition of the property). If you keep an eye on your property–that is, check on it seasonally, make sure the tenants are changing their furnace filters and doing all of the routine things you do to care for your own home, and fix repairs quickly– you really don’t have to do a lot to keep it going. Just like anything else, once you get used to doing something over and over, it becomes like second nature. OR, you can hire a boss handyman like the one we have, and he can keep an eye on things for you 😉
  • I’ll be blunt: any property is an asset you can inherit. That is why I plan to help my grandma hold on to my grandma’s rental properties. 

Cons

  • When things go wrong, it can consume a lot of time and money.
    • Repairs: if you are not Bob Vila and you’ve never been responsible for fixing problems with a house, it can be very stressful. In most situations, you have to do plenty of research to understand what’s going on, carefully weigh decisions to make sure you’re getting the best price and hiring the most reputable businesses. Not to mention they can cost a lot.
    • Renters: Sometimes, you can get great people who pay their rent every month, on time, and take very good care of your property. Sometimes, you get people who you tear S&#( up on purpose (Well, that’s how it feels). Sometimes, you have to deal with difficult situations like people losing their jobs or having other hardships and you have to make tough decisions. If caregiving is stressful enough already, you may not want to be a landlord. That means you’re basically responsible for the roof over your own head, the roof over your loved one’s head, and the roof over your renters’ heads.  That can be a lot of roofs to worry about! 
  • Too much income can be a problem, especially if you’re running out of resources and are looking at government benefits and community services. If you’re considering nursing home facility placement- beware! It’s expensive! What you think might have been a lot of money in savings can be depleted in just a few months’ time. If you couldn’t oversee their care at home, chances are, maintaining a property is outside of your bandwidth as well. 
  • Typically, you can own property when you are eligible for Medicaid. However, in some cases, a lien may be put on it if your loved one enters into facility-based care so the state can recoup the costs of their care. 

How do I know what’s right for our family’s situation?

Contact an “elder care” or “elder law” attorney. They will be able to guide you through all the factors you should consider in planning for future long term care.

PRESENTING.. The Long Term Care Calculator!

I created this calculator long ago before I brought in her Sidekicks to help me see how much it would cost.

Instead of letting it collect dust, I made some tweaks so you can use it to see how much care will cost for your loved one, and forecast the cost of increases of care.

Whether you are leveraging your loved one’s private assets or using a long term care insurance policy to pay for some of their care, this calculator can not only help you figure out how much you can pay your caregivers, but also forecast how much your loved one’s care might cost over time as their needs change.

Tell me more

Join me LIVE!

I will be hosting a LIVE webinar to walk you through how to use the calculator Wednesday, August 7 at 8:00pm central.

To save your seat up for the webinar, go here: http://bit.ly/TCGLTCC

Long Term Care Explained

“Long term care” is a term you might have heard if you’ve ever interacted with the health care system or aging services. You’re going to be hearing it more and more as growing numbers of Americans reach age 65 and the home care worker labor shortage surges to record levels. 

In this post, I’ll break down all the common suffixes that come behind the phrase “long term care.”

Long Term Care as a Service

You’ve been told your loved one needs long term care. When we first hear from a doctor or hospital social worker that our loved one needs “long term care,” it can be daunting. Most of us have no context for what that really means, so our minds go directly to the nursing home. 

[Read more…]

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.

Extreme Respite Room Makeover

A month or so ago, my grandma had a bowel blockage that had her feeling awful. We had to keep a pretty close eye on her, and I pulled a couple of all-nighters.

She began asking if someone was going to stay with her all night.

I knew that it was time to start preparing for overnight care.

You know how people have junk drawers? Grandma’s house had a junk ROOM. It was the place I put anything we weren’t using or I wanted to get out of my sight.

This was the perfect opportunity to knock out a task that had been hanging on my to-do list for months: clean out the front bedroom.

I just knew that Karen would be the perfect person for this job. She got all the stuff to make this a comforting, calming place to be.

Over the course of the past few weeks, this room has transformed to a respite oasis.

BEFORE

Empty junk room

AFTER

  • the new respite room at Grandma's house

Now, we are ready for whatever (or whoever) comes our way!

A round of applause for Super Fly Karen, who hooked this room UP! 👏👏👏

Barbara’s Sidekicks: the ladies making our everyday lives possible.

In the beginning, it was just me and Gma.

After a couple years of going to work, going to Grandma’s, coming home and going to bed, and then hitting the rewind button every morning, I knew it was time to bring in some outside forces.

We started out with just one companion come over (shout out Karen!!) a few times a week to help me get her to her appointments and add some variety to her life. When my own life got too crazy, we added a couple more ladies to the team. Now, we have a team of six Sidekicks.

At first, I just paid cash. I even Venmo’d Leslie her pay every week. As we added more people to the roster, I realized my under-the-table operation was going to become pretty cumbersome if I had to keep running to the bank every week for cash and communicate with several people at a time.

There laid Grandma’s long term care insurance policy, just collecting dust.

You see, when I first found out about the policy, I called to find out if I could “self-direct” it. Self-direction is a model of support where you recruit, hire, train, supervise, and god forbid, fire your own caregivers. I figured if people on Medicaid waivers could do it, surely I could be able to do it too. After all, it was a *private* policy, one she had been paying a premium on for years.

Think again, Rachel.

It took three times calling and explaining what “self-direction” meant and hearing “no,” for me to give up on the whole idea.

Fast forward to last summer. I had some help. Self-employed and unsure of what to expect, I started covering some of Grandma’s daytime hours. It didn’t take long before word got out that I had launched my own business and people were knocking down my door to find out if we could work together. I knew I needed a solution, and fast.

I let some close connections in my circle know that I was going to start looking for help and put some feelers out.

https://gph.is/2JhUUvk

It just so happened that I had heard through the grapevine that my colleague from my past life, Julie, had launched her own business too, Simple Living Solutions. Julie provides fiscal intermediary services and program compliance support for individuals and family members who are self-directing their Medicaid Waiver supports in our area. In a nutshell, that basically means that she handles all the financial responsibilities of payroll and getting taxes paid and oversight to be sure those working with her are successful (auditing documentation and providing coaching on training and supervision).

I figured she already had the system in place that I needed to access my grandma’s long term care insurance. I sent her a message on Facebook and we were talking the next week.

After what seems like a million phone calls and meetings, some of which we spoke to the long term care insurance policy together, our claim was accepted earlier this year and we are now billing her long term care insurance. For a small fee, Julie collects and audits the paperwork and turns it in to the insurance company. She invoices me, we pay her using Grandma’s money, and then the long term care insurance company issues a check to reimburse us.

We now have timesheets, schedules, payroll… we are TOTALLY LEGIT! I am the supervisor of Grandma’s Sidekicks. I wrote the care plan. I train the ladies on what they need to know and make sure they have everything they need to support my grandma to have the best life possible.

So…. without further ado, I’d like to introduce to you….

Barbara’s Sidekicks!!!!

All of Gma’s sidekicks are wonderful ladies. Except me and Leslie, they are all super active women, married with children, so I knew they’d be a great match for her (and can make up for my lack of knowledge about certain things due to my spinsterhood).

Starring… (in order of appearance)

Leslie is a good friend of mine. I met her in grad school while we were working on our MPAs. She’s a smart cookie and well known in our community. Leslie responder to the SOS signals I sent out when Calvin went on hospice. When the time came for me to bring on more help last year due to my booming business and Gma’s changing abilities, Leslie gave me Mimi.

Mimi is like a saint! What drew me to Mimi was that she’d adopted an elder widow in her church who has dementia and was helping her, and so I knew she would be perfect for Gma. Mimi is a calm and peaceful presence. She is very sweet and loving. And she gave us Bridget!

Bridget and Mimi are best pals. When Mimi found out about the Sidekick opportunity and that we had more positions available, she asked Bridget if she was interested. Bridget is patient and quick thinking and gets my grandma playing the piano. We got dealt the best hand!!

Eileen is a friend of mine. When I put out our announcement, it wasn’t biting like I wanted it to, so I turned to the Contacts in my phone. I scrolled through the names asking myself, who do I know personally that is a decent, upright lady??? And then I came upon Eileen. I met Eileen in my past life when she was a volunteer in my office. Eileen and I had a good time. We were always laughing and joking around. She also has a super badass mom vibe and made me feel good, so I knew it would work out when I texted her my ad. We met for coffee and she said yes!!! It just so happened that this comes at a perfect time in her life- as a special needs mom whose son is getting closer and closer to transition, Eileen is brainstorming creative strategies for helping him be self sufficient and is planning on putting her Sidekick money away from that. It was like serendipitous that this all happened! Eileen is such a joy for my grandma. My grandma literally calls me every single week and tells me, “Eileen is such a good person to be with me.” I think that says it all.

I cannot tell you how much of a blessing these ladies have been to us. Not only that, I find delight in the fact that my grandma can be a blessing to them. We have such a great team!

Let’s hear it!

A round of applause for Barbara’s Sidekicks, the ladies who make it possible for Grandma to have a good life and for me to go after my dreams!

Want to get your own team of helpers for your loved one?
You need the Head Caregiver in Charge Handbook! The Head Caregiver in Charge (HCIC) Handbook will guide you through the process of determining what help you need, how you will get the help you need, and how to keep it going once you’ve set it up.

Sign up for the TCG Mailing List to be updated when the HCIC Handbook drops, along with all of my other awesome blogiversary festivities!

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What Barbara & Rachel have been up to

Dear family and friends,

Things have been going well. This month was our first full month with a full team of Sidekicks. Barbara really likes all of them and they are wonderful ladies. We are so blessed!

Easter Egg Extravaganza

Photo: Easter Eggs

Each year, Grandma’s church hosts an Easter egg hunt for the community and solicits candy-filled eggs.

Grandma couldn’t believe it when she found out I picked up 6 cards at church.

I got all the supplies and her Sidekicks helped her stuff the eggs. We make a great team!

Blooming Beauty

  • Photo: Blooming tree in Gma's yard
  • Photo: Blooming tree in Gma's yard
  • Photo Blooming tree in Gma's back yard

With the arrival of Spring came an outpouring of beauty, with new gifts each day. The trees around Grandma’s house started blooming like crazy. Everyone has just been going on and on about how pretty everything is.

Plumbing Problems

Grandma spent a little bit of the month under the weather due to what we believe was a partial bowel blockage. Earlier this year when she went to the hospital for the same thing, we discovered she had a hernia around her belly button. Instead of rushing her to the hospital and causing delirium and a bunch of drama, we decided to treat the blockage at home with lots of tea, rest and Digize essential oil. Thankfully the blockage was cleared and she’s doing much better.

Extra Room Extreme Makeover

Photo: extra room at Grandma's, full of junk

This month we cleared out the room that has been referred to as the “office” up until now.

Knowing that the time will come where Grandma may need overnight help, we are creating a space that will be welcoming to future Sidekicks who have to stay the night or just need to step away for a few moments.

We picked out a color palette, and Super Fly Karen is putting the room together for us. Isn’t she wonderful?

New Glasses for Gma

Photo: Grandma with her new glasses

Grandma was having lots of trouble with seeing double at church and two of whatever was happening on TV, and her glasses kept sliding down off her nose. Her old glasses just weren’t working for her anymore.

Rachel had suspicions that cognitive impairment was affecting her vision, but it turns out one of her eye lenses has turned in a little bit so they added a prism to her specs and now she says she can see great!

Of course, we love Pastor Randall and everything, but one of him is probably enough 😉

Back to Mugs Up

Since the weather has been getting nice, we were able to get back to our usual Saturday cruises and stop by our favorite haunts. It was nice to see the ladies at Mugs Up and savor their delicious vittles!

TakingCareofGrandma.com turning up!

This month, I was invited to the Missouri Assistive Technology Power Up Annual Conference to share my experience using “remote monitoring technology” (read: Nest) to help Barbara stay safe in her home. It was a great event! I was happy to share what worked for us.

Right now, I’m sitting in a hotel room in Buffalo, New York, getting ready to share my experience as a millennial caregiver at the National Lifespan Respite Conference hosted by ARCH National Respite.

All of that is pretty exciting, but what I was most excited about was producing the TakingCareofGrandma rap, which will come out (fingers crossed) next month for her blogiversary.

  • Photo: Rachel in the studio with Jaz at 64111 Studios
  • Photo: Rachel (left) with The Popper, KC area rapper

Between Grandma and her Sidekicks, and me and my business, we have been managing to keep pretty busy. I am still delivering meals to seniors in Blue Springs. Grandma continues to attend her life group and play bingo at the senior center a couple times a week.

Every day we count our many blessings and can’t wait to see what awesome things the next will bring.

We hope you’re doing well, too, and would love to hear what you’re up to!

Love,
Rachel and Barbara

May is Older Americans Month. Why should you care? #OAM

As of 2016, the population of people in the United States was about 15%. That means 1 in 7 people are over 65. By 2030, the population will be 1 in 5 and could reach as high as 1 in 4.1

This demographic shift is a result of a huge population of Americans born between 1946 and 1964, better known as the Baby Boomers. You might know that the Baby Boomer cohort gets its name from a “boom” in the birth rates after the end of WWII.2

I know you’re sitting there, saying, “Okay, Rachel, but what does this have to do with me?”

Well, it means that if your parents aren’t yet ‘aging,’ they will be within the next ten years, and the realities currently facing older Americans and their families today will become their reality, and thus, your reality.

Realities of Aging

  • Declining health and abilities: Let’s face it – it’s no fun getting old. As people age, they often struggle with chronic and painful conditions and experience sharp declines in their abilities. When we are wise to how our mind and bodies change when we get older, we are better equipped to offer compassion and feel empathy for our loved ones.
  • Isolation: It’s all over the news. Senior loneliness is a public health issue.3 Between the natural order of things (read: time), the complexity of life, and the diminished health and abilities of our older loved ones, many of them lose the close ties and relationships that we take advantage of. Knowing this, we can work harder to make sure that our loved ones know they are dearly loved and don’t feel cut off from society.
  • Poverty: Every situation is different, but increasingly, seniors aren’t bringing in enough income to have quality of life. According to the U.S. Census Bureau, in 2017, more than 15 million older adults had incomes below 200% of poverty based on the official poverty measure (30.1%), a number that increases to more than 21 million (42.0%) based on the SPM.4 Either way you slice it, that’s more than 1 in 4 seniors struggling to survive. Knowing this scary statistic can help us be more prepared down the road by having conversations about assets and how people want to live when they retire.

Why else should you give a flip about Older Americans Month?

Your tax dollars are going to their care.

People are living longer, and health care costs are increasing. Our tax dollars fund Medicare, which is the primary insurer of older Americans. According to a Kaiser Family Foundation Report on Medicare, as the population of our parents and grandparents  increases and continues to age, they will require a greater level of care, and therefore, more funding for access to healthcare. “As adults live into their 80s and beyond, they are more likely to live with multiple chronic conditions and functional limitations, and this combination (compared to having chronic conditions only) is associated with a greater likelihood of emergency department visits and inpatient hospitalizations as well as higher Medicare spending for inpatient hospital, skilled nursing facility, and home health services.”1 A greater amount of public spending will be needed to account for Americans living longer lives, while at the same time experiencing declining health and abilities, and there will be fewer taxpayers to fund this need.

You may be forced into a caregiving role.

It is estimated by the US Department of Health and Senior Services that almost 70% of people turning age 65 will need long-term care at some point in their lives. An entire generation is aging out of the workforce, and many of these workers are the ones providing direct support to individuals needing care. This is going to lead to a huge shortage of bodies to provide care to those in need, so even when you can pay someone to help, you may not be able to find them!

It is estimated that 13% of Americans, or 43.5 million people, provide unpaid care to a family member. Known as family caregivers, these people provide on average 24 hours a week of unpaid care. As the aging population increases, we can anticipate this number also increasing.5 Are you ready for this?

Are you prepared to care?
Check out the Coming Out from the Rock Series for questions and things to consider when it comes to your aging loved ones. Direct link: http://rachelh15.sg-host.com/coming-out-from-the-rock/

Our loved ones have worked hard and deserve to have quality of life.

The current systems of support for families, the federal government, and the nation as a whole are not equipped to meet the needs of aging Americans. If we are to support individuals who are aging ensure they have quality of life in their golden years, new ways of thinking about what it means to be happy and healthy while aging are needed.

I think we all can agree that people who are aging should live in environments that meet their needs for increasing levels of support. However, I have noticed, especially among the white middle class, there is a common misconception that as soon as people get old and need help, they should be moved into an assisted living situation or nursing home. “The typical trajectory for older adults is forced relocation through higher levels of care as their health and functional ability declines.  As an alternative, AIP (Accident Injury Protection) coordinates the necessary services enabling a client to stay at home.”6

Despite the delusion that most aging Americans’ is final destination is or should be the nursing home, most older Americans live at home. In 2016, 59% lived at home with their spouse and 29% lived at home6 . More importantly, people want to stay at home. Most older Americans indicate that they want to remain at home as long as they can.  “According to a 2010 American Association of Retired Persons survey, 88% of people older than 65 want to stay in their residence for as long as possible.”7

There is an alternative to uprooting an aging relative from a home they know and love and support them to have a good life. The fields of aging and human/social services have begun to accept Aging in Place as best practice for helping people who are aging retain their independence, dignity, and quality of life. Aging in place means that individuals are enabled to live in the environment of their choice with the support they need to remain in that environment.6

Innovations in technology are making it possible for seniors to age in place in their communities.

Our culture is becoming increasingly connected through the proliferation of technology in our daily lives.  Due to this proliferation, many believe it will empower our society to better support those who are in need of assistance with daily activities.  “The low cost of technology and its ubiquity provides an enabling resource to mitigate risk to seniors and to ameliorate their loss of function as they age in place.” 9

Current innovations in technology are enabling older Americans to stay at home by ensuring control over their environment, monitoring their health, and detecting emergencies in addition to acting as a bridge between the person and the people who support them.   

At the sophisticated end of the technology spectrum is the concept of “Smart Homes.” An emerging trend in health informatics and among savvy homeowners, smart homes are homes that are wired for the infusion of technology in daily life.  “Smart home features usually include motion-sensing devices for automatic lighting control, motorized locks, door and window openers, motorized blind and curtains, smoke and gas detectors and temperature control devices.”9 Smart homes are becoming more and more common as smart mobile technology and high-speed internet become more commonly accepted and widely available and accessible to all citizens.

Those who have successfully applied the idea of smart homes to the aging population have incorporated many different techniques of remote monitoring and environmental control, from the use of in-home sensors that detect a person’s movement and changes in their bodily functions as well as changes in the environment, to cameras and intercom systems that connect to people in the individual’s personal and support networks to facilitate monitoring and communication.6   Technology like telehealth, where patients have a direct connection to the health care professionals who support them, are enabling seniors to receive their health care at home as much as possible, which is an added benefit when transportation options may be limited for seniors.

While just as recently as ten years ago, researchers were dreaming of “A coherent suite of technologies” that would eventually let seniors take charge of their health, assist them with daily living activities and building new skills, facilitating social interaction with loved ones, and ensuring their safety and believed that the influx of baby boomers will result in a “revolution of technology in the home.” 10 They believed future technology would not only assist individuals to age in place and focus on their health and safety, but also incorporate mainstream uses of technology for social interaction and personal entertainment to support and sustain quality of life.

The future holds great potential for enhancing quality of life, not only for people who are aging, but for everyone, as our society makes huge strides in science and technology. Strides that are automating every day activities and enhancing our personal safety.

In conclusion

During Older Americans Month, and every month, I encourage you to keep your loved ones in mind and explore the ways technology can be used to help them stay at home and have a good life. I hope you’ll join me in my adventures taking care of my grandma, using technology as a form of support that enables her to age in place in her home.

If you want to learn more about Older Americans Month and how you can make a big deal out of it in your space, visit https://acl.gov/oam/2019/older-americans-month-2019

Sources:

  1. Neuman, Tricia, Cubanski, Juliette, Huang, Jennifer, and Damico, Anthony (2015). The Rising Cost of Living Longer: Analysis of Medicare Spending by Age for Beneficiaries in Traditional Medicare. Kaiser Family Foundation. Retrieved from http://kff.org/medicare/report/the-rising-cost-of-living-longer-analysis-of-medicare-spending-by-age-for-beneficiaries-in-traditional-medicare/.
  2. Colby, Sandra and Jennifer M. Ortman. (2014, May). The Baby Boom Cohort in the United States: 2012 to 2060. US Census Bureau. Retrieved from https://www.census.gov/prod/2014pubs/p25-1141.pdf
  3. Gerst-Emerson, K., & Jayawardhana, J. (2015). Loneliness as a public health issue: the impact of loneliness on health care utilization among older adults. American journal of public health, 105(5), 1013–1019. doi:10.2105/AJPH.2014.302427. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4386514/
  4. Cubanski, Juliette and Wyatt Koma, Anthony Damico, and Tricia Neuman. How Many Seniors Live in Poverty? Kaiser Family Foundation. Nov 19, 2018. Retrieved from
    https://www.kff.org/medicare/issue-brief/how-many-seniors-live-in-poverty/
  5. AARP Public Policy Institute. (2015). Caregiving in the U.S. Report. Retrieved from http://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf
  6. Rantz, M. J., Skubic, M., Miller, S. J., Galambos, C., Alexander, G., Keller, J., & Popescu, M. (2013). Sensor technology to support Aging in Place. Journal of the American Medical Directors Association, 14(6), 386–391. doi:10.1016/j.jamda.2013.02.018. Retrieved from:
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3683379/
  7. Federal Interagency Forum on Aging-Related Statistics (2016). Older Americans 2016: Key Indicators of Well-Being. Retrieved from https://agingstats.gov/
  8. AARP Research & Strategic Analysis. (2010). Home and Community Preferences of the 45+ Population.  Washington, DC. Retrieved from https://assets.aarp.org/rgcenter/general/home-community-services-10.pdf
  9. Tyrer, H. W., Alwan, M., Demiris, G., He, Z., Keller, J., Skubic, M., & Rantz, M. (2006, August). Technology for successful aging. In Engineering in Medicine and Biology Society, 2006. EMBS’06. 28th Annual International Conference of the IEEE (pp. 3290-3293).
  10. Mynatt, E. D., Melenhorst, A. S., Fisk, A. D., & Rogers, W. A. (2004). Aware technologies for aging in place: understanding user needs and attitudes. Pervasive Computing, IEEE, 3(2), 36-41.  

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.

@takingcareofgrandma