Welcome to takingcareofgrandma.com! takingcareofgrandma is my platform for sharing my personal journey in caregiving and practical advice for caregivers.I have been supporting my grandma to age in place as her primary caregiver for about two years now. I have to share what I’ve learned with everyone. I just can’t keep it to myself. I will be sharing my own personal experiences.
Welcome to the the second in my series of Bible studies about the moral imperative for caregiving.
When I was feeling disheartened about caregiving because everyone was telling me to ‘put my grandma in a home,’ I turned to the Bible to give me hope and encouragement to know that I was doing the right thing. Turns out, that God has a lot to say about the responsibility of taking care of your loved ones.
One of the Bible verses that keeps me going through difficult days and stormy seasons is Hebrews 6:10-12.
“For God is not unjust. He will not forget how hard you have worked for him and how you have shown your love to him by caring for other believers, as you still do. Our great desire is that you will keep on loving others as long as life lasts, in order to make certain that what you hope for will come true. Then you will not become spiritually dull and indifferent. Instead, you will follow the example of those who are going to inherit God’s promises because of their faith and endurance.”
In Hebrews 6, the author is helping the church how they can demonstrate their faith and the rewards that come with obedience. In this particular verse, the author is offering hope and encouragement to continue to fulfill God’s command during difficult times.
“For God is not unjust. He will not forget how hard you have worked for him and how you have shown your love to him by caring for other believers, as you still do. (Hebrews 6:10)
Sometimes, when we’re in the throes of caregiving, the negatives can seem to overwhelmingly outweigh the positives. It’s easy to get discouraged.
When people stop coming around and calling to check on you…. When people say they’re there for you, but don’t really help when you need them… It’s easy to feel forgotten about.
God is an all-knowing God with a perfect memory. He sees what others don’t see- he sees the tears you cry, he sees the sacrifices you have made for your loved one, and he sees when others turn turn their backs on you.
This verse is reassuring the church that God will not let their trials and tribulations go unnoticed, as long as we put our faith into action and show love out of obedience, not just for show.
Our great desire is that you will keep on loving others as long as life lasts, in order to make certain that what you hope for will come true. (Hebrews 6:11)
From cover to cover throughout God’s word, we are mandated to love our neighbors as ourselves.
Everyone has heard the phrase “Walking the talk.” If we are truly to be like Jesus, we have to do what Jesus did and convert our affections into action.
If we are truly saved and truly following God’s word, we have to do more than just say we care for others. We should do things not because of how good they will make us look or the attention we can get from others, but because we are commanded to do them.
If we are obedient to His command, then we will receive our glory (glory from Above, not from man) and reap our blessings.
“Then you will not become spiritually dull and indifferent. Instead, you will follow the example of those who are going to inherit God’s promises because of their faith and endurance. (Hebrews 6:12)
Even when we are knee deep in dirty laundry, soaked from giving baths, and downtrodden by the disappointments of others, we have to persevere out of our duty to love one another. If we are simply doing things to get glory or attention from others, or with the expectation of a payoff at the end of the journey, we are doing them for the wrong reasons.
We have to be careful not become self-righteous and walk in the ways of the world. Somehow the world equates good deeds with righteousness. We as humans are not inherently righteous. Just because we do good things, if we do them on our own for our own sake, they are done in vain. True righteousness comes when you walking with God (Romans 3:10–12). If the love of God is our motivation, we will naturally do what He has called us to do.
Caregiving is truly carrying out God’s command to love our fellow man. The blessings of caregiving do not come from the praise (or pity) we get from others. The blessings of caregiving come when you make love a verb and truly live out your life everyday with the love of God in your heart.
Are there Bible verses that you turn to in times of trouble for a comforting word or a reminder that you’re on the right path? Drop them in the comments!
I’ve been keeping something from you all! If you know me, you know that I have a hard time keeping things in! I’m SO GLAD it’s finally out so I can share this all over the interwebs!
A couple months ago while we were celebrating the TCG Blogiversary, the SCAN Foundation out of California, contacted me about coming out to KC and interviewing me about my caregiving experience with my grandma. Of course I said, “YES!”
I’m proud to present to you What’s the Story?, a video by created by the SCAN Foundation to kick off the Do You Give a Care campaign.
What's the Story? - Vimeo
When I first began my caregiving journey, I felt very isolated. It wasn’t until start the talking about caregiving (by starting this blog) just how many people I know and meet everyday are also caring for someone they love. I realized that there are millions of people like us out there taking care of our loved ones everyday. There are so many of us out there, and we are islands. We have to change that!
I’m partnering with The SCAN Foundation to tell my story to raise awareness, and form an informed, supportive caregiving
community for young people. The Do YOU give a care? movement is empowering advocates to improve the experience for
all Millennials providing care as well as for their loved ones.
Millennials are constantly picked on as being lazy and self-centered. I am honored to be part of this effort to reframe perceptions of millennials and raise awareness about Millennials who are caregiving. As my friend Deb at AdvocateforMomandDad.com said,
“Young caregivers are the unseen soldiers of the caregiving world. With thanks to the SCAN foundation for highlighting these selfless young people.”
I hope this movement will not only bring us closer together, but also help current caregivers identify their important roles so they can get the information they need to support their loved ones and themselves, find opportunities to connect with others, and understand how they can navigate supports.
If you’re a millennial caregiver, join the movement!
Post it to Instagram and Facebook. Tweet it out. Share it to your caregiving groups (if you want some invites, let me know ;)). Write about it and share their materials on your blog. Let’s blast this all over the internet!
I first found out about palliative care back when Calvin was getting ready to go home from the hospital for the last time. Originally, the doctor suggested ‘Palliative Care’ for him upon discharge. I had never heard of such a thing before, so naturally, like you, I had some questions.
What is Palliative Care?
Anyone who is nearing the end of their life, that is they have a a chronic illness or in need of pain and symptom management, is eligible for palliative care support services. Palliative care is a service that is offered by health care agencies, many of which are also hospice providers. It is often covered both by Medicare and Medicaid, as well as private insurance.
The goal of palliative care is to allow people with a life-threatening illness earlier access to the same type of care that hospice patients receive. Even though they have the same goals of helping people have quality of life and live comfortably, palliative care is different from hospice.
Palliative care goes with you wherever you go, so it can be provided in a hospital, at home, in assisted living or a long-term care facility.
When you start receiving palliative care, you get a nurse practitioner and a social worker. The nurse practitioner comes out and checks on your loved one each month (or more as needed). If you are concerned about your loved one, but not sure if they need medical care, they can help you triage what’s going on and even come out and check on them. They can order any tests or labs that need to be done (This really excited me considering the increased risks of UTIs for older people).
You are assigned a social worker who can help you navigate supports for your loved one. They can help you discuss difficult decisions and think through end of life planning. If you don’t have a DNR established, they can help you take care of that as well. The social worker my grandma has literally just offered to come over and sit down and call up her long term care insurance company with me. How cool is that?!
These two people work with a palliative care physician and your existing health care providers to make sure your loved one is receiving the very best care. It’s like your very own care coordination team!
Who can receive Palliative Care?
Ultimately, Calvin went home with hospice, but I found out after my grandma’s last hospitalization that she qualified for Palliative Care. My ears perked right up, because I knew exactly what they meant!
If your loved one has a condition that causes long-term pain and discomfort and/or for a chronic illness that causes periodic symptoms, like:
Chronic Liver Disease
Multiple Sclerosis (MS)
Amyotrophic Lateral Sclerosis (ALS)
You may want to consider starting palliative care. Your person does not have to be dying or shut-in, they simply have to be dealing with symptoms of a chronic condition. Since my grandma has Alzheimer’s, she qualifies for palliative care.
What’s the difference between palliative and hospice care?
If you start researching palliative care providers in your area, you might find that a number of them are primarily hospice providers. Hospice providers are one of the primary providers of palliative care services in the country. The idea is that by offering both palliative care and hospice care, seniors and families will have a seamless continuum of care over the course of a serious illness. The goal of palliative care is to allow people with a life-threatening illness earlier access to the same type of care that hospice patients receive. Even though they have the same goals of helping people who are aging or dealing with illness live comfortably, palliative care is different from hospice. Palliative care is about maintaining a quality of life, where hospice care is about helping people through the end of life process.
If you haven’t looked into hospice, either, you totally need to! It is an essential support for any caregiver to know about!
Palliative care is already a lifesaver for us! I recently called them freaking out about my grandma’s stoma output, and they helped me triage the issue and think through it rationally before rushing her to the emergency room.
If you think your loved one is eligible for palliative care, the first step is talking with your loved one’s primary care physician. They can write a referral for palliative care for you. They can also usually tell you what providers are in your area. You then choose a provider that will accept your caree’s health care coverage and get the ball rolling with them.
Many of you may be familiar with my story, but you might not know that there are 10 million more people out there just like me. One out of every three Americans younger than 40 are caring for a friend or a loved one.We often struggle to find the balance between our own goals (and day-to-day life) while providing care for someone else. Sometimes we make difficult choices between educational pursuits, career advancement, relationships, and social connections. It can be emotional and isolating.
But today we’re stepping forward and launching a community to share how we give a care and are asking you to join us and answer the question: Do YOU give a care?
I’m partnering with The SCAN Foundation to tell my story to raise awareness, and form an informed, supportive caregiving community for young people.
The Do YOU give a care? movement is empowering advocates to improve the experience for all Millennials providing care as well as for their loved ones.
The Do YOU give a care? campaign is launching next week.
Whether you’re a caregiver just like me, or not, I hope you will show your support, become informed, and join the community.
TakingCareofGrandma.com is excited to join the Carry the Conversation campaign, which empowers millennials to speak out on the need for long-term services and supports financing options.
LeadingAge.org, a nonprofit, nonpartisan organization that provides a voice for aging in America, is launching a campaign asking millennials to speak out on the need for long-term services and supports financing options.
With more than 10 million millennials, or one in three people age 20-36, providing care for a loved one and potentially delaying life experiences due to the time and financial cost of caregiving, LeadingAge is leading the conversation about what millennials and lawmakers can do to create sustainable and affordable financing solutions.
I’m Rachel and I care for my grandma, Barbara. I’ve been doing it for three years now.
The first thing I want to tell you is it’s not the government’s job to take care of you when you get old or have a disability.
A lot of people live with the misconception that the government takes care of people when they get older. The fact is, the responsibility lies solely on us to make sure our loved ones receive the best care in their golden years in accordance with their wishes. If you are not prepared, you will not know what is available to you when the time comes for you to care for an aging relative or someone with a disability.
The good news is, with a little research and planning, you can have conversations now that will help everyone in your family have a direction for a good life, even when someone needs help.
The second thing I want to tell you is the current LTC system is not and will never be able to take care of everyone who needs help.
Silver tsunami. Baby boom. No matter what you want to call it, our country is facing a demographic nightmare.
With all of these people getting older and eventually needing help themselves, there is a shrinking pool of human bodies to fill the gap. Nursing facilities and home care agencies all face the same issue. Finding people to care.
Older Americans use Medicare for their health coverage. Medicare covers a lot of ancillary services, and even home health after a hospitalization, but it does not cover long term care. With terrifying news reports claiming Medicare will run out within the near future, we have to be aware of how we are going to help our aging relatives be healthy and safe. Shrinking budgets means less funding, and you know as well as I do that social services are normally first to be cut.
The fact remains that for many government paid services, you have to be eligible for Medicaid, which means you are living in poverty. Most middle class people simply do not qualify for these kinds of supports. They have to leverage private insurance and their own assets to pay for care.
The majority of older Americans want to live at home. We cannot (and should not) just dump our loved ones in nursing homes. We owe it to our elders to honor their wishes. So we have to figure out how we can support them as their needs change.
As millennials, and the ones who will be soon caring for our parents, grandparents, aunties and uncles, and friends, we have a responsibility to learn about the current status of formal and paid long term services and supports. We have a responsibility to educate ourselves on the policies and practices around aging and family caregiving in America today, so we can make our voices heard for change.
We have to learn about what’s available to everyone in the community that we can build on. We have to explore how innovations in technology and basic tools we use everyday can help keep our loved ones safe and happy at home.
Most importantly, we have to think differently about what long term supports really means. Aside from community and governmental services and supports, we ARE the long term care system in this country. We will be the ones making sure our folks are healthy, safe, and happy. It is OUR JOB.
We need to start having these conversations now! If you wait until your loved one needs help or you’re in the throes of caregiving, it’s too late.
Don’t live under a rock.
LeadingAge.org is currently leading a campaign to raise awareness around long term supports and services. Learn more at http://www.leadingage.org/carrytheconvo
This is not normal. If you notice that your loved one has a million magazines piling up, there is a chance that they have been scammed. (This may also be an indicator that something is off with your loved one, but that’s another blog post for another day.)
Crooked companies target older Americans and put them on “sucker lists.” They will send your loved one information in the mail or call them, notifying they could win or have won a great prize to get them to sign up for inflated magazine subscriptions.
How to Recognize a Scam
Here are some tell-tale signs that a company is not legit. Check out my illustrated examples below.
Free gifts and contests for prizes or cash awards:
Are they offering some grand prize or an entry into a contest to win a pile of money? If it sounds too good to be true, it probably is.
Quality of the correspondence:
Look at the letterhead. Is it professional? Are there misspelled words in the letter or advertisement? Is it on cheap paper? Does it have inkjet printing? Chances are, they’re running the operation out of their crappy apartment.
Google it: Look the company up. Do they have good reviews on the Better Business Bureau? Or an endless list of complaints?
Email addresses: Does the ‘company’ use a Gmail email address? Chances are, they’re not legit.
Phone numbers: Are the numbers the same When you call the number listed on what you have received, are you sent to an endless loop of voicemails? Is it someone’s cell phone? Does anyone call you back?
My grandma had so many companies after her that we had to close her bank account. I couldn’t figure out where her money was going so fast! They had her information and were sucking out their ridiculous fees each month. And worse, when they would call her to tell her that she owed money for the subscriptions, she would just hand her financial information right over (That’s another blog post for another day).
The last straw is when a collection agency called her up and collected over $1,000.
I took matters in my own hands. I collected all of the mail and documents that were related to these fraudulent transactions, and followed these steps:
How to Stop the Magazines
Get in Touch with the ‘Business:’ Chances are, you won’t be successful, but your first step should be to contact them to let them know the transactions were fraudulent.
Report the Scammers: Submit the transaction to your bank or credit card holder as fraudulent transaction.
Cancel the Cards: Call and report the debit/credit cards stolen. If your loved one used their checking account information, you will have to close it and open a new one.
Cease and Desist: Prepare a stock letter to send to the ‘companies’ letting them know that you reported them to your financial institution and threaten to report them to your local authorities, the state attorney general office, as well as the FCC. Mail it and fax it. If an email is available, email the letter, too. (If you want me to send you a copy of what I used, let me know.)
Cancel the Magazines: Contact the magazine publishers directly to cancel the subscription and notify them of what happened (It might be a good idea to prepare stock text that you can just copy and paste from – I will be glad to share what I used). You may have to actually mail a letter, but in most cases, I was able to log on with the information on her magazine label and cancel/suspend the delivery of the magazines. You can find this information normally either in the front of the magazine in the list of contributors or in the very back in small print, or you can go onto the magazine’s website and look for the subscribers’ section.
A couple of other steps I took to stop the magazine fiasco:
I am not Responsible: I had to work with my grandma to advise callers to get in touch with her granddaughter, her DPOA, to resolve the issues. Once my grandma let them know someone else was responsible for making her decisions, the calls stopped. Almost immediately.
Seek the Help from the Outside: Sign your loved one (and yourself) up for the Do Not Call List (https://www.donotcall.gov/) and DMAchoice (https://dmachoice.thedma.org/). That will help thwart scam/spam calls and unsolicited mail.
Sign up for Informed Delivery: I have not done this, yet, but the US Postal Service offers a service called Informed Delivery. This service allows you to view images of your incoming mail and track packages. This way, you can see what is coming into your loved one’s mailbox if you are not with them all of the time.
Three years later, Grandma still gets a couple magazines that we just weren’t able to cancel, but she’s no longer being robbed of her hard-earned money, and we don’t have piles and piles of magazines laying around (okay, that’s a lie… but one can dream, right?).
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.
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 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.
For Thankful Thursday, and the final day of the TakingCareofGrandma.com one year blogiversary, I want to extend a special “thank you” to you, the true VIPs!!
Thank you for:
liking, sharing, retweeting, and commenting
listening to my rants
reading with an open mind
telling your friends about my blog
sending me cool resources and information
asking me for review your products and articles to make sure they’re family friendly
dropping me a line to let me know you stopped by and liked what you saw
inspiring me to share my lessons learned
pushing me to increase my knowledge and skills in my caregiving journey so I can report out
motivating me to make a difference for other caregivers
Starting this blog has not only been a source of catharsis for me, it has also opportunities in front of me and brought people into my life in a way I never thought was possible. It truly changed my life trajectory.
So, thank you!!! If it weren’t for you, I might not have ever decided to share my experience.
Finally, thank you for humoring me and letting me make such a big deal out of my blogiversary! It’s been a great month.