Dating and relationships is not a topic you see me write about much here at TakingCareofGrandma.com.
[Read more…]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…]#87 on the list of things no one wants to talk about ever: UTIs
Urinary Tract Infections.
Admit it, right now you’re getting all grossed out and embarrassed. It’s not a pleasant topic.
UTIs were something I’m sure I never thought about in my pre-caregiving era. When I started taking care of Grandma, it started coming up all the time. I quickly learned that UTIs are a common occurrence in older adults.
I became super defensive against UTIs.
But it is not a game, people.
UTIs are the devil. They make old ladies act crazy and talk about trips to the lake in the 1950s. They also make people fall.
Having learned that, in most cases, falls are not normal and usually an indicator of a physical problem, I would freak out when Grandma fell. My first question would be, “Does she have a UTI?” I even bought the test strips to have on hand when I was worried she might have one.
UTIs mimic the symptoms of dementia in older adults. If a person struggles with ongoing UTIs, it can be mistaken for this condition.
When a person actually has a cognitive impairment dementia, it’s hard enough dealing with confusion and disorientation. Sometimes UTIs exacerbate typical dementia symptoms. That’s how it is for us. When my grandma has a UTI she is EXTRA everything- extra confused, extra weak, extra unsteady.
Older adults are simply more susceptible to UTIs. As time goes on, muscles in your bladder and urinary tract get weaker. Leaks happen. If your loved one has incontinence, it’s especially important to be vigilant in the fight against UTIs. That’s because incontinence creates the perfect environment for infections to flourish.
Even though it’s super yucky and uncomfortable, it’s something we have to deal with. It’s critical to know what the signals are and put all precautions in place to prevent UTIs.
Symptoms of UTIs
| Typical Symptoms of UTIs | Lesser-Known UTI Symptoms in Seniors |
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Source: https://www.agingcare.com/articles/urinary-tract-infections-elderly-146026.htm
SETTING UP YOUR DEFENSE AGAINST UTIs
Make sure your LO drinks plenty of fluids.
If they are not a big water drinker, try to sneak it in with flavoring drops or packets). Offer them something to drink as often as you remember, and be sure and hydrate yourself – modeling the behavior you wish to see.
Get some D MANNOSE.
This stuff is the truth. D Mannose is a sugar that is found in many fruits and vegetables, including the infamous cranberry juice, a common household remedy for UTIs. According to the research, the sugars prevent E. Coli bacteria that passes through our urinary tract from latching on. (You can read more about it here: https://www.healthline.com/health/d-mannose-for-uti#research)
I bought it for Grandma after several people in the caregiving groups I lurk in on Facebook mentioned how it worked for them. Gma has been taking it since January and hasn’t had a single UTI since.
Make sure your LO changes their briefs or pads as soon as they get wet.
Those things are breeding grounds for infection. They never get changed as soon and as often as needed. I was mortified when I found out my grandma was wearing pads 2-3 days at a time (that was back in my freshman caregiving days). She would claim she hadn’t gotten them wet or she didn’t need to change them. I started buying big packs, sometimes two at a time, so she would never worry about running out.
Make sure your LO changes their unmentionables at least once a day.
My grandma and I went back and forth on this forever. To me, it was unheard of to wear your underwear more than one 24-hour period. I’ve noticed that older people like to wear the same clothes over and over for one reason or another. It’s a generational thing. So I bought my grandma literally 12 pairs of underwear. Not having enough will never be an excuse.
Try implementing a bathroom schedule to prevent accidents.
We try to encourage Grandma to get up out of her chair and remind her to go to the bathroom at least every two hours.
If your LO is up peeing all night, if they can get up and move around more during the day, it’s helpful in getting them on a schedule. When you lay down at night, all the water in your legs and extremities heads back to the center of your body, and you guessed it – if you didn’t eliminate all the fluid from your body, you will have to pee.
You can also try having your LO keep their feet/legs up during the day as well, to help fight against gravity.
Discourage and try to limit caffeine and alcohol intake.
It should be obvious that these make you need to pee more often. We switched out Grandma’s tea for decaf and that made a huge difference.
Final recommendation – mainly for people whose LOs have dementia or chronic pain
Don’t assume your LO is comfortably able to or remembers how to maintain their personal hygiene.
Women should always wipe from front to back (for women). It might sound basic, but it was a foreign concept to my grandma (maybe because she had two boys)… This may be a word of advice that comes easier from a medical professional, like a palliative care nurse. At some point, if your LO has dementia, they may forget that this is the way to do it… they may forget to wipe at all.
Sometimes, it may be hard for your LO to wipe and they feel ashamed or embarrassed to ask for help. This is a sensitive subject, but it is important to start offering help with this part of toileting when you start having concerns.
In all seriousness…..
I never imaged becoming knowledgeable about urinary tract infections. If you are caring for a loved one, you need to stay on your toes and keep a watchful eye out to prevent them from making your caregiving life miserable!
Have you found remedies or solutions for an ongoing battle with UTIs? I’d love to hear what worked for you. Drop it in the comments below! 👇👇👇
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 go to Starbucks. Thanks for the coffee.
NOW PREMIERING: Taking Care of Grandma Rap
I know you’ve been waiting to see it, because I’ve been telling everyone about it for a month, so I won’t delay any longer…
Without further ado………….
I present to you…………
the Taking Care of Grandma Rap!
Now Mike Jones isn’t the only rapper to writing about Grandma 😘
SHOUTOUTS
THANKS TO MY GIRL, RUE, for being my hype (wo)man and singing the hooks in the studio! Seriously, you made the song!
Thanks to Mogul Filming Group for recording this fresh video 📹
Thanks to Jaz at 64111 Studios who helped me lay down this track 🎙️
Thank you to Mill Clinton for the dope beat 🎹
And last but most definitely not least, I couldn’t have done this without the help of Walter Edwin, AKA Walt Lee/Dun Deala/the Popper, owner of the IMKC Store and active making a difference in Kansas City, who helped me figure out the steps I needed to take to produce this song. #salute
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:
- Mood management
- Security – in care and in confusion
- Social Success
- Sense of Control
- Sense of Value
- 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.
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
AFTER
Now, we are ready for whatever (or whoever) comes our way!
A round of applause for Super Fly Karen, who hooked this room UP! 👏👏👏
One Year of Blogging: Looking Ahead
SO MUCH HAS HAPPENED this month. It’s been hard for me to keep up.
My blogiversary month is coming to a close.
It’s been a great party!
I shared the stories of 5 amazing millennials who offered their experience and lessons learned on their caregiving journeys as a gift to you. Watch them all here: http://rachelh15.sg-host.com/blogiversary/
I recorded a rap video (#TakingCareofGrandmaRap Coming soon! We’re putting the finishing touches on it now 😘)
Wait, we’re supposed to be looking ahead.
Here’s what excites me and stresses me about the journey ahead.
What excites me:
NCC19
It seems like a long way away, but the FOURTH Annual National Caregiving Conference is happening in Chicago November 7 through 10, 2019.
The National Caregiving Conference has become my mecca (I talk more about it here: https://www.caregiving.com/2019/05/caregiving-summit-day-2/)
At NCC19, I will be presenting
- From Cash Under the table to Family directing Grandma’s Sidekicks
- Helping Family Caregivers Spell Out What R-E-S-P-I-T-E Means to Me
- Our Amazing Difference: The Anthem
- Recruiting Quality Help
as well as receiving the Caregiver of the Year Award.
Sandwiched KC
I launched a support group for family caregivers in Kansas City early in 2018. This year, we are working on filing our 501c3 so we can become a formal organization offering supports to those caring for a loved one in the KC Metro. I’m so excited to see how this unfolds and the opportunities to make lasting change for people like you and me in KC!
Peep us out at https://sandwichedkc.com
What stresses me:
Grandma’s decline
Over the past few months, Grandma has been falling deeper and deeper into dementia.
Sometimes, she doesn’t recognize me. [Read more: I’m Only Rachel, Sometimes]
I know that this will happen more and more frequently, but it doesn’t hurt any less.
It’s really hard watching someone you’ve seen as a superhero your whole life transform into a completely new identity.
My grandma used to be loud and commanded the attention of the room. She never forgot a birthday or missed an occasion to send a card. She was always taking care of me.
Now, she is meek and mild. She barely (if at all) remembers what day it is and is starting to forget where she is in time and space on a regular basis.
While preparing for the ultimate loss that lies ahead, I’m engaged in a daily battle against the course of nature.
Thankfully, I found the Dawn Method, a framework that helps family caring for loved ones with dementia learn the tools and strategies they need to support moments of joy, foster emotional stability in the face of uncertainty, and make it safe to fail. We can let her fade away gracefully, with dignity and respect, .
Cost of Care
Right now we’re waiting on insurance to kick in to cover Grandma’s Sidekicks. The waiting is killing me. I know we’ll be okay, and that I need to practice patience, but in the back of my mind, I’m thinking…. what if this all falls apart? There’s no way we can keep this up long term if the insurance doesn’t kick in.
I’m glad that I’m going through this, though, because worrying about a sustainable financial future is a common experience many families go through.
That Dang Ole Turnover
For some reason, when I ventured out to fund our self-directed care with Grandma’s long term care insurance, I figured I wouldn’t have to deal with the typical problems that providers experience.
Once again, reality has slapped me in the face, as one of our Sidekicks moves on to a full-time teaching job. Instead of looking for a backup Sidekick like I should have been the past few months, I was too busy trying to be famous. Now, I will probably have to pick up one of the outgoing Sidekick’s days for the time being.
Who’s going to take care of me?
As I approach my next birthday and inch closer and closer to my mid-thirties, I can help but wonder what the future lies in store for me.
An only child who’s currently childless and unmarried, if I keep going at the current rate, I will be joining the growing number of Elder Orphans (Read more: https://www.chicagotribune.com/news/ct-elder-orphans-met-20161212-story.html) in my golden years.
I pray that the great leaps and bounds the tech field is seeing will continue, and by the time I’m my grandma’s age, tech will make it possible for me to live the life I want… even if there’s no one around to take care of me 😉
What are you looking forward to most in the future? What freaks you out? I’d love to hear from you. If you don’t mind sharing, drop it in the comments! 👇👇👇👇👇
Thankful Thursday: A Community for Those Who Care
The first time I hopped on the weekly #carechat on Twitter (which just so happened to be May 23, 2017), I found out about Caregiving.com. Denise Brown, founder of
Caregiving.com, is one of the leaders of the weekly chats. She was so welcoming and friendly, she sucked me in right away.
When I first logged on at Caregiving.com, knew I was home.
In the stories and chats with real life humans who are caring for families, I found comfort in knowing I was not alone. In the Caregiving Years, I found tools to prepare for the battled ahead. In Denise’s calming voice, I found peace, knowing I would survive now that I had unlocked the portal to the information and support I had been looking for all along.
Of course, I knew there were other family caregivers out there, but nobody ever seems to want to talk about it openly. And I could never seem to find just exactly what I was looking for when I typed my questions and curiosities into Google. I found all of this and more at Caregiving.com .
Pretty soon, I was stalking Denise all of the time, obsessed with all of the caregiving information I could consume. I signed up for all the mailing lists. Subscribed to all the things. She launched the Certified Caregiving Consultant (CCC) training, which I signed up for as soon as I could (PS – thanks Sheli! I will never forget you for that.)
Then, Denise invited me to the second annual National Caregiving Conference, NCC17. At NCC17, I met so many amazing people. People just like myself, who had become family caregivers and now were out pounding the pavement and leading very successful lives sharing their personal caregiving experiences.
Even though, originally, I scoffed at anyone who would tell me that caregiving might result in a change in employment for one reason or the other… hell, I’ll admit I even scoffed at Denise sometimes when I was taking the CCC training, saying,
It doesn’t have to be that way. People just don’t make the right choices or put in enough work. That would never be me, I had the best job….
but after I saw so many other former and current family caregivers making a life for themselves, converting their caregiving experience into not just a living, but a life, it occurred to me. There were other possibilities for the future I hadn’t considered.
If I hadn’t started running around with these folks, I would never have believed I was capable of anything other than the daily grind I had come to know- working 9-5 and then heading to Grandma’s for a second shift. All of the amazing people I’ve met along my Caregiving.com journey challenged me to think differently about my gifts and abilities and what “work” really looked like. I would never have taken the leap to branch out on my own without the faith and encouragement of the friendships I’ve built there.
Since that time long ago, I have moved on to become a Certified Caregiving Educator and Facilitator. These two certifications, along with my Certified Caregiving Consultant cred elevate my blog, boost my advocacy and awareness work, help me be a better leader at Sandwiched KC, and serve family caregivers better.
Now, I have an entire tribe of people from across the globe who know what it’s like to walk in my shoes, and, like myself, are working as their own bosses to create value and change the lives of family caregivers.
That’s just the beginning!
Denise is always creating new ways and orchestrating partnerships to advance the status and well-being of family caregivers.
This year, she launched the Caregiving Co-op. Through our co-op, we will be able to save on products and services, share equipment and supplies we no longer need, receive support from CCCs and other family caregivers, and receive reimbursement for our expertise.
In our Making a Break project, we meet monthly with family caregivers who want to figure out how they can create space in their lives so they can take a break (or get “respite.”)
From photo projects to contests, she is always finding ways to reward us for thinking creatively. Denise is always encouraging us to tap into our intuitive side. I think she knows that it is key to finding joy and meaning in life.
Denise is a pioneer. Family caregiving was in her crosshairs way before anyone else had it on their radar. She has been working hard for over 20 years to connect us with the resources and supports we need to live our best lives and make an amazing difference while we are caring for a loved one.
So, without further ado, let’s hear it for Denise at Caregiving.com! She is paving the way for the future of family caregiving!
THANK YOU.
Sara & Grandma Hit the Road
Sara is a girl after my own heart, because, like me, she cares for her grandma. We found each other in the Caregiver Collective, a Facebook group for millennial family caregivers.
Sara Bell is a millennial boss. Literally, she runs her own company teaching other people how to be bosses at event management.
Not only is she steering her own ship as a business woman, she is also a published author. Sara wrote a children’s book called, Nana Forgot My Name.
Sara inspired me when she told me about
- taking her grandma on a cross-country road trip (jealous because my gma would never go for anything like that)
- bringing her grandma out of her dementia shell, and
- personifying Alzheimer’s to separate challenging behaviors from her grandma’s identity
Sara also shared her experience searching for a top notch Memory Care Facility for her grandma and the challenges of that process. You can tell Sara cares for her grandma deeply through her desire for a place that would focus on her social and emotional needs, not just her health and safety.
It was a pleasure getting to know Sara and hearing her journey. I know you will just love her smile and story like I did.
Visit Event Planning Support at https://www.eventplanningsupport.com/
Link: Buy the book, Nana Forgot My Name on Amazon
GIVEAWAY ALERT
You can win a copy of Sara’s book, Nana Forgot My Name. All you have to do is
- Subscribe to my YouTube channel
- Comment below who you care(d) for and share something you have in common with Sara as a family caregiver
Rick’s Story: going from bachelor pad with Grandpa to the Memory Care Facility
I met Rick in the Caregiver Collective, a Facebook group for millennials who care.
I’m honored to have Rick share his experience as a male millennial caregiver. Rick cares for his grandpa.
My interview with Rick helped reinforce the falsehoods of two common misconceptions about caregiving:
- caregiving is a female thing. Within the millennial generation, it’s almost a 50/50 split between males and females.
- caregiving is not location-based. It doesn’t matter where you nor your caree live… whether you live together or separately, close by or far apart, if you are contributing to the well-being and daily life of someone you love, you are a caregiver.
Watch this video and lean in as Rick shares
- how he feels he was in a right-place-right-time situation
- the emotions and challenges involved in watching his grandpa decline
- and how he is recovering as a “post-caregiver” and coping with guilt after his grandpa transitioned to a facility.
In our interview, Rick shared the importance of reaching out for help, as well as not getting caught up on comparing your caregiving sandwich to that of others.
Rick is a great guy and an example for many to follow. His love and commitment to his grandpa shines through his story.
I love that he found a lady willing to support his caregiving role. Join me in wishing them the best of luck for a long and happy future!
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