My grandma often forgets to hang up the phone after she leaves a voicemail.
Today, I listened to this voicemail and it made my heart melt a little.
Grandma couldn’t remember why she called me, so she asked Connie. Connie answered her question, and then she shared how she sometimes experiences moments of forgetfulness. A perfect response to the confusion and frustration of not being able to remember.
Grandma has some GREAT Sidekicks, doesn’t she?!?! đ„°đ„°đ„°
Oh yes, Alzheimerâs is like The Wizard of Oz.
Our loved ones can spin off on relentless and ridiculous quests for lost items or out of longing for home.
Everyday it can feel like we are venturing into a dream world. Weâre just putting on a show.
Sometimes the show is for our carees. We orchestrate opportunities for stimulation and love and empowerment and carry out our days entertaining our loved onesâ trips down memory lane or voyeurs into la-la land⊠we are constantly performing.
We walk alongside Dorothy, morphing from one character to another, day in and day out.
I’ll get you my pretty…
Sometimes, when we donât take care of ourselves we can get pretty ugly.
Sometimes weâre the villain when we have to make difficult choices for our loved onesâ well-being and safety.
Weâve all played the Wicked Witch a time or two.
Pay no attention to that man behind the curtain!!!!
As a dementia caregiver, we can be both feared and revered.
If weâre not careful, we end up running the show to the end that we are putting on a show. For the world, taking on what can feel like a whole city crying your name trying to prove we are great and powerful. We back ourselves into a curtained booth, hiding behind a scary mask. One false move and we are found out by a tiny dog with a gruesome underbite.
You had it in you all along…
When we are at our best, we are like Glenda the Good Witch. She is full of love and kindness, and her presence is calming. Glenda helps Dorothy find her way home, only giving her enough information needed at each point in her journey to complete her mission. She helps Dorothy realize sheâs had the power she within herself all along.
“He’s really gentle – with gentle people, that is.“
When Miss Murch comes for Toto after he snapped at her, Auntie Em lets her know how she feels about her. Sometimes as caregivers, we have to get in the face of those who are trying to take things away from the ones we love.
At the end of the movie, when she rejoins everyone in reality, their response is one of comfort and reassurance. Auntie Em calmly takes Dorothyâs hand, looks her in the eye, and listens. Uncle Henry goes along with it, agreeing with her reality. Every dementia caregiver knows that our responses to the confusion should mirror that of Auntie Em and Uncle Henry.Â
Dorothy: Doesnât anyone believe me?
Uncle Henry: Of course we believe you.
We offer our love, even when we feel like we have no heart. We put on a brave face, even when we feel like the Cowardly Lion. Sometimes, we get stuck until someone comes along and bend the nail down.Â
Oh, yes, Alzheimerâs is like The Wizard of Oz.Â
Oh yes, the Wizard of Oz is just like Alzheimerâs.
The entire time, Dorothy is searching for her home. She. Just. Wants. To. Go. Home.
She wanders off to a far away land, one with wonder and beauty and moments of great joy.. an adventure fraught with horror and uncertainty.
Will Dorothy find what she was looking for?
How will Dorothy ever get home?
When she wakes up at the end of the movie, she is confused and disoriented.
Dorothy: No, Aunt Em — this was a real, truly live place.Â
And I remember that some of it wasn’t very niceâŠ
but most of it was beautiful.Â
But just the same, all I kept saying to everybody was, I want to go home.
And they sent me home.
When those surrounding her deny the reality of her incredible technicolor journey⊠minimizing it to mere fantasy, Dorothy becomes increasingly troubled and insistent.
Dorothy: Doesnât anyone believe me?
Uncle Henry: Of course we believe you.
Immediately she comes alive. Sheâs happy and knows she is safe and loved.
The only difference is in real life, the movie ends.
The credits scroll.
The music fades.
For the Alzheimer’s caregiver, The Wizard of Oz is the headliner day in and day out.
In my last post, I shared with you how I became an expert on my grandmaâs colostomy. In this post, Iâm going to share with you what Iâve learned about what it means to live with a colostomy.
An ostomy is a procedure in which vital organs are surgically changed to reroute bodily waste. Ostomies can be temporary or permanent. There are different kinds of ostomies, including colostomies, which is what my grandma has.
A colostomy is a surgical procedure in which the colon is rerouted. This normally happens because of an illness like cancer or disease like diverticulitis.
My grandma had a colostomy operation in late 2013 due to a bout of diverticulitis, and it was reversed in early 2014. She did okay for about a year, and then she needed to have a colostomy operation again during a hospitalization, thanks again to diverticulitis.
Iâm by no means a medical professional. To learn about ostomies, I suggest you check out https://www.ostomy.org/what-is-an-ostomy/
I do, however, know what itâs like to be a caregiver to someone living with a colostomy. If youâve recently found out your loved one needs one, or you are new to colostomy care, I hope this post will give you a glimpse of how life changes when a colostomy happens.
Here is what it means to live with a colostomy:
Living with a colostomy might mean you need thicker skin.
Your colon has been re-directed and now your bodyâs waste comes out of a âstomaâ – the new opening of your colon – which empties into a device (often called a colostomy bag) worn on the abdomen. Thatâs right, your poop (often called output) goes straight into a plastic bag worn underneath your clothes.
If you’re squeamish at the sight of blood or get freaked out by medical shows, youâll want to brace yourself. Itâs time to get brave. You will be in close contact with an internal organ. You will have to be careful. If you have a tendency to rush, it will really test your patience.
Living with a colostomy means you will have to become an expert at a nursing task often carried out by skilled professionals.
When you have the operation, your healthcare team should teach your loved one (and you) how to care for the new colostomy. Youâll learn how to change the bag and clean it out, receive guidance on proper nutrition post-surgery, and hopefully get some coaching on what a healthy stoma looks like.
Over time, youâll work out a rhythm of caring for your colostomy, and it will become part of your routine. Through trial and error, youâll learn how your diet and activity impact your output.
Living with a colostomy means redefining your relationship with food.
Food can become your worst enemy for a while after you get used to a colostomy. Once you have a colostomy (especially post surgery) you find out that certain foods are off limits. Certain foods are known to cause blockages. Some foods basically cause diarrhea. When you get used to a colostomy, you eventually become an expert on how foods affect you.
You will likely have to make some changes to what you put into your body.
It may affect your social habits slightly. It may mean declining the occasional dinner invitation or spending time educating people close to you about your new dietary needs. You might develop a habit of showing up fashionably late đ
Read the Food Alchemy post coming later in the series to learn more about my experience supporting Gma with nutrition and her colostomy.
Living with a colostomy means accepting a new definition of being prepared for the worst.
It means lots and lots of cleaning and plenty of loads of laundry. Youâll probably want to invest in a couple weeks worth of underwear and several more pairs of pants, IJS.
If you werenât already, when you learn about the risks that bacteria and germs bring with them, you might find yourself on a whole new level of clean freakiness.
Youâll definitely be adding some more items to your emergency kit, and youâll want to make sure that you have a few daysâ worth of ostomy care supplies in your hospital go bag (because they never frigginâ have the appliance you use ââđ€Ź)
Speaking of going to the hospital, you will probably rush to the ER more than you’d like and may have to stay a few times, as colostomy (and really any bowel) issues can get pretty serious pretty quickly.
It sounds pretty serious, but the devastation you feel when you initially hear the words âsurgeryâ and âcolostomyâ will eventually wear off. They may resurface from time to time when a hospital trip is looming due to a blockage or you have to rush off to a biohazard cleanup in the middle of the night.
You will find yourself wondering at times how you ever became so concerned with the consistency of poop and how often your loved one has a bowel movement.
Certainly, living with a colostomy or caring for someone who has one can be challenging at first. Over time, just like anything else, with plenty of experience under your belt, you will grow accustomed to caring for a colostomy. You’ll figure out what works and establish a new normal. Eventually you will learn to live with a colostomy.
Does your loved one have a colostomy or other healthcare need that you attend to?
I’d love to hear what you’ve learned. Drop your wisdom in the comments!!
My grandma had her second colostomy in June of 2015. Her first colostomy (October 2013) was reversed (February 2014). By the time she had her second colostomy, she didn’t remember having the first one.
For a long time after she initially came home, she managed the colostomy on her own. The rehab facility worked with her to learn how to do it. They did not offer to teach me. At the time, I was already dealing with so much stepping into my new role, I didnât think to ask, either.
So, she changed and emptied her bag and she ordered her supplies. The only thing I had to do with her colostomy was pick the supplies up at the Ostomy Care Center when she ran out. I didn’t see any reason to learn too much about her colostomy, so I kept my head buried in the sand.
For the most part, we did pretty well. I had my fair share of emergency biohazard cleanup calls in the middle of the night, but I never changed her bag myself for nearly three years.
As time went on, and I learned more about how to care for a colostomy (usually in response to something going wrong), it became obvious to me that she should not be responsible for taking care of her bag. I realized it was up to me to start keeping an eye on it if we were going to keep her healthy and feeling well.
I talked to the friendly folks at the Ostomy Care Center, and they gave me some printed information about it. He offered to walk me through it if I ever needed some help. I did some research and found Vegan Ostomy and saw how he changed his bag. Then, I asked her to show me how to change her bag and made a point of hanging around when she cared for it.
It was a good thing I did, too.
When she came home from her only hospitalization last year, she couldnât remember how to change her bag. I could no longer put off doing it myself.
There was a sharp learning curve when I became the one entirely responsible for taking care of her colostomy. I quickly figured out that what she ate had a direct impact on what came out of her bag. I started enforcing a flexible menu to control her output. (I call it Ostomy Alchemy.)
We began changing her bag on a schedule, and it became part of our routine.
For a while, it felt like my whole life revolved around that bag.
Thankfully, we have done pretty well dealing with Grandmaâs colostomy. She has only been to the hospital once, for a blockage, since.
Iâll be blunt. Considering the alternative (read: wiping butts)… Iâd say that caring for someone who has a colostomy isnât so bad. Having and getting used to a colostomy isnât easyâ neither for the person nor the people who may support them, but it is manageable. Just like anything else, having an ostomy can become the new normal. With enough information and practice, you can actually learn to live with an ostomy.
In the next few posts, I am going to share with you how I became the expert on Grandmaâs colostomy.
Iâll tell you all about what Iâve learned about:
Have you had to care for a special medical need like an ostomy?
I’d love to hear how you learned to cope. Please share your experience in the comments!
Caring for a loved one and feeling fatigued?
I know just how stressful and confusing it all can be. If you feel like you lost a life you loved thanks to caregiving responsibilities, youâre not alone.
We are often thrust into it without advanced notice and no time to prepare. Since we didnât prepare, we spend the first part of our caregiving journey catching up on all of the âI wish I would have knowns.â We have to form, storm, and norm all at the same time.
We donât have time to rally any troops, so we end up going it alone.
Iâve been caring for my grandma since 2015. We never had any conversations about it before she began needing help. As her only living relative, I assumed her safety and welfare would eventually fall on me. The egotistical Rachel said, I got this.. and pushed Grandmaâs future to the back of my mind.
The first two years I cared for her pretty much by myself. In the beginning, I didnât think I needed help. Once I realized I did, I was so tired all I could ever think about was my bed. I couldnât put any energy into even getting started trying to figure out what it would take to make this work in the long run.
It didnât take long for that to wear me down. It left me with no time for myself or anything I cared about.
It was really no life for either of us.
Once that sunk in, I slowly started working toward a solution. After all, I was putting in 40 hours a week in the office, 20+ hours caregiving (which meant an extra hour of travel round trip).
Most likely in response to a crisis or meltdown, I eventually hired a gal to come in and provide companionship. As Grandma declined, I brought in another one. I felt peace of mind knowing that she had someone with her now for a little while every day. I wasnât getting any relief, though, because I had them coming during the day. The evenings and weekends were still all me. I grew wearier and wearier.
I was so burnt out and emotionally spent that when another loved one was dying and needed my help, I just couldnât deal. I didnât have the energy reserves to make smart decisions, and I certainly didnât have anyone who could step in and take the reins for a bit at Grandmaâs.
So, I quit my job. Soon after, my loved one passed. Life as I knew it had flipped upside down within a calendar month. I asked myself, What am I going to do now?
I had Grandma. And a new business to launch unless I wanted to move in with her ;).
At first, it was all good. I filled the empty times during the days and worked in the evenings. On the days she had help, I could focus on my projects. Soon, my business was consuming all of my extra time.
I had a choice to make: keep spending all these hours caring for Grandma and limit my ability to grow my new business⊠or figure out a way to get out from underneath all the caregiving.
So we launched an in home care business that exists solely to provide support to my grandma. We bill the long term care insurance. I supplement the support she receives from her paid caregivers to keep costs down, but I am no longer providing all of most of her care.
After a two and a half year saga marked by hours on the phone with the long term care insurance company, hundreds of trips to the bank or atm, too many hours of lost productivity, *all* of the vacation and âsickâ days, and one major life change laterâŠ
My grandma has a team of ladies that live to come to work and be with her, and I am freed up to build my empire.
A lot of people will have you thinking that caregiving will completely and permanently disrupt your life. That is their experience. It doesnât have to be yours.
You can resume or rebuild your life if itâs been interrupted caregiving and you will love it.
True, you have to make sacrifices to care for a loved one. But it is not all doom and gloom.
The first step is accepting that you canât do it on your own.
Just because youâre not the *only* or the main one doing all of the work doesnât mean your loved one isnât your top priority. That was something I had to accept before I could make this work. Accepting that doing it all yourself wonât work for long and is neither in the best interest of you or your loved one (and anyone else involved). If youâre going to support your loved one to have quality of life for the long haul, you canât be the one providing all of their care all of the time.
So. If you have been thinking of hiring private caregivers or in home help for your mom, dad, uncle or grandma⊠then you will want to join me for the free LIVE HCIC orientation on 10/16/19. It’s happening right here at TakingCareofGrandma.com.
In this webinar, I will go over:
Save your seat! RSVPs are limited and registration closes soon.
Sometimes when youâre caring for a loved one in the middle stages of dementia or Alzheimerâs, life can feel like some kind of warped game show.
Youâre waiting for decline. Expecting it. Your loved one bounces back and forth between okay and a complete mess.
It can cause you to question your judgement and live in fear of the next cliff.
Common ailments and illnesses that we bounce back from quickly can be serious hazards to our loved ones with dementia. They can mimic and exacerbate the symptoms we are always watching out for. One of these major culprits is the Urinary Tract Infection (UTI).
UTIs can be an Alzheimer’s caregiver’s worst enemy. It can make you think that you’ve been thrust into the progression of a new stage in the disease.
It can make you question your good sense as the expert on your caree.
It can make you feel the urge to go out and buy a bunch of crap to stop UTIs in their tracks or make a potential UTI go away.
It can make you have a full-on panic attack wondering if your loved one has the right amount of support.
It can make you feel like you’re the only contestant on a dark, lonely stage. There are no prizes. No cruises to Alaska or a brand new car.
Only fear, guilt, and uncertainty.
All you can do is try your hardest to provide the very best care of your loved one.
UTIs can happen no matter how many different ways you try to prevent them and how much you pray they would stay away.
If you find yourself feeling spinning in circles due to a loved one’s changing behaviors, don’t worry, you’re not alone. We’ve all been caught up in the Is it a UTI or… game.
The key to winning is to
I joke, but it is not a game people!
Learn about how you can prevent UTIs with my recent post:
When we are small, bathtime is a big deal.
As we get older, itâs just part of our day. We think little of it.
When you get older and begin needing help, bathtime becomes a big deal again. Â
Helping Grandma with her shower used to be super stressful for me.
First of all, it was just awkward.
When you were a little kid, I’m willing to bet you caught a few glimpses of your folks in the nude or on the toilet. If you’re like me, you probably spent a long time trying to block those images out of your mind. That’s because, as a society, we’ve been taught that the human body in all its nekked splendor is undesirable and unnatural.
Small hang-ups like this sometimes become huge roadblocks. These are the types of internal struggles that caregivers have to contend with.
Imagine. If I, Rachel – self-proclaimed professional caregiver – was feeling this level of discomfort, how was my grandma feeling?
Ashamed. Helpless. Humiliated.Â
Even getting to the bath was a struggle.
I say it all the time. Grandma is a product of Depression-Era thinking. My grandma grew up in a time where bathtime only happened once a week. To her, especially in her state of cognitive decline, it doesnât make sense to bathe more often than that.Â
At first, I was set on getting Grandma to comply with todayâs accepted standards for personal hygiene. When she didnât want to or couldn’t take a shower, I would feel like a failure, like I wasn’t even meeting the minimum requirements. (Guilt alert)
The more I looked into it, it turns out that showering once or twice a week works for a lot of people, especially if theyâre not doing too much and they donât smell terrible.
The bottom line is that a shower doesn’t deliver the same sensory experience for everyone. For me, a hot, steamy shower may be just what the doctor ordered. To Grandma, my definition of warm was scalding hot. It became clear to me that getting in and out of the shower and standing all that time was hard for her. It hurt her knees. It wore her out. As time went on, Grandma had less and less energy for showers. Sometimes, thatâs the only thing we would do that day.Â
The longer I spent caregiving, the longer I realized that it really wasnât worth the fight.Â
Once you get past the initial mental turmoil of bathtime, thereâs always the risk of falling.Â
A few months after I got her home from the hospital the first time, my grandma fell in the shower. I was RIGHT THERE with her. She ended up breaking a toe, which led to a huge infection, which led to us finding out she had to have her gallbladder taken out and another two week stint in rehab.
From that point on, we were both much more careful during bathtime. The shower had us traumatized. Grandma couldnât remember the specific event but could associate the shower with danger. I remembered, though. Too well, in fact. I would have mini flashbacks of her slipping and her bright red toes.
I realized that giving Grandma a bath was going to mean becoming more hands on. So, channeled my inner Cathy Sikorski and started Showering with Nana (pretty much). Â
When she got home that time, we asked Leo to install some *permanent* grab bars outside of the shower to help her while she was getting out.
I swear we tried three or four different ânon slipâ mats before we finally found one that didnât slip around too much.Â
Despite all of the safety precautions we had in place and my new laissez faire attitude toward personal hygiene, showering was stressful AF.
Even getting Grandma to shower once a week was turning into a major feat. Iâll admit sometimes it didnât happen because I was simply too worn out. (Guilt alert #2)
If I asked her to take a shower, she would always decline or say she didnât need one. When we started writing it on the weekly schedule as part of the routine, it was harder to say no. We chose Saturday, so she could be fresh and clean for church. (Being fresh and clean for church in itself is a major motivator.)
I started turning the shower into a performance. Doing it the same way. Every. Single. Time.
Before the act began, I set the stage. I laid out the towels on her bed and in the bathroom and strategically placed all the hand towels, creams and supplies I would need.
When we started heading toward the bathroom, I put on her favorite- Liberace. Playing music during bath time was a game changer. Not only did it help her feel more relaxed, i noticed it helped take the edge off of the experience for me.
From the time she got out of her chair till the time we headed back to the living room after the bath, I started chattering the whole way through.
âAlright, now let’s go back and take a bath⊠okay now weâre in the bedroom. Letâs get your clothes off and weâll go into the bathroom. Okay now letâs get in the shower. Be careful! Okay Iâm going to turn the water onâŠâ
You get the picture.Â
My grandma canât keep up with the steps in our bath time routine anymore, so chattering has become more important than ever.
When it turned it into a ritual like this, it took the stress and worry out of it. Going through it the same way consistently makes it feel like I have control of the situation. It gives me the confidence and assurance I need to turn a stress-inducing experience into a regular chore.
What tips and tricks do you use to make bath time less stressful? Drop them in the comments below!! I’d love to hear your experience đđđ
If youâve 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 memberâs care later.
Rental property can be a great asset down the road when it comes time to long term care. However, it doesnât come without its challenges.
In this post, Iâll share my experience as a family caregiver whoâs 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 âlandlordâ 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, didnât bother to ask Grandma if she needed or wanted help with the duplex–Grandma probably wouldâve 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 doesnât mean we havenât 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 wasnât 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 wasnât 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.Â
Just like anything else in life, there are both advantages and disadvantages to helping a loved one manage rental properties. If youâre caring for someone who owns their own property, or youâre having conversations about the future and wondering whether maintaining the property is right for you, here are some pros and cons to consider.
Pros
Cons
How do I know whatâs right for our familyâs situation?
Contact an âelder careâ or âelder lawâ attorney. They will be able to guide you through all the factors you should consider in planning for future long term care.
Every once in a while, you need a chance to reset and refresh.
For me, that happens at the National Caregiving Conference.
The National Caregiving Conference is organized by CareGiving.com. Family caregivers and allies from across the country and beyond convene in “the Windy City” of Chicago to learn from each other, share their skills and knowledge, and connect with others who know what it’s like to care for a loved one.
I first attended in 2017 and every year go back for the amazing connections and great information (not to mention the respite).
This year marks the fourth annual conference. The conference kicks off Thursday, November 8, 2019. This year’s conference features even more than before.
NCC19 has sessions on topics like legal planning, starting your own business while caregiving, taking care of yourself, navigating services, and so much more.
There’s always a load of great exhibitors, where you can test out and learn about the newest caregiving products.
Each year, the conference features an innovation contest – so you will get to see some seriously game-changing tech at NCC19.
This year, I’ll be presenting at several sessions to share my own caregiving experience. Read more about it here: https://www.caregiving.com/ncc19/presenters/rachel-hiles/
I hope you will join me and my friends either in person or virtually at NCC19. It truly changed my life. Who knows? Maybe it could happen to you, too!
So join us. You won’t regret it!
Register to attend in person đđđ
Register to attend virtually đ»đ»đ»
Learn more about the jam-packed agenda đđđ
This blog post contains affiliate links, which means I may earn a small commission if you decide to sign up for the conference.
