TakingCareofGrandma.com

Whose responsibility is it, anyway?

Millions of Americans contribute unpaid labor in America every single day. 43.5 million to be exact.1 They system has a name for them, but many of them carry out their role unaware that there’s a name for it.

We’re talking about family caregivers.

Family caregivers are out here making the world go ‘round, taking care of their parents, spouses, adult children with disabilities, and other people they consider family. 

Oftentimes, family caregivers are overburdened and stressed out. Even if they had time to search for help, it’s hard to know where to begin if you don’t even know there’s a name for what you are doing. 

We hear the healthcare system saying it’s hard to help family caregivers because we don’t “self-identify.” I guess by “self-identifying,” they expect us to scream from the rooftops that they are helping an aging or disabled loved one in some capacity.

Even when healthcare and social service professionals in the see us in the room and are aware we help our loved ones in some capacity, often the only times our needs are addressed are is when something is seriously wrong. They will document that we are the family caregiver but never actually utter the word.

So, whose responsibility is it to identify and educate family caregivers?

The most common response I’ve heard is “the hospital social worker.” The social workers at hospitals certainly have a critical role in smoothing transitions from the hospital, whether they be to a patient’s home or a rehab facility, but with so many patients to cover, there’s no way they have the time to suggest basic resources. 

What if a person never gets sick enough to go to the hospital, but they still need assistance to make it through their day or manage their affairs? 

Some argue, then, that it would be the responsibility of primary care physicians to inform those caring for aging loved ones or people with disabilities of information and resources that can help them. Medical doctors do not study the same information during their coursework as social workers. Not only that, they are booked back to back to back. Their ability to look outside of the physiological aspects of health are somewhat limited. Our medical system does not allow them the time to look any deeper into what causes our health issues. What makes you think they have the time to become versed in meal delivery programs or how family caregivers can get respite? Unless you have a geriatric doctor, or one with personal caregiving experience, your chances of that are slim.

Why not the nurses? Well, because nurses are even busier than the doctors. They can’t help us figure out how we can get what we need to take care of our loved ones, because they have they’re busy taking care of entire hospital wings.

One of the number one answers we hear is for people to call their local Area Agencies on Aging or Aging & Disability Resource Centers. While Older Americans Act (OAA) funding is available to support family caregivers, according to AARP, of the funds that are “appropriated for family caregiver supports is a small fraction of the unpaid care they provide, less than 1/25th of 1 percent.”2 Here in Kansas City, the AAA’s portion of the funding for supporting family caregivers is 5% of a whopping $7 million budget for their older adult programs.3 Since many of them do not rely on OAA funding alone, most of them are constantly working to fundraise to continue offering services and supports, they have limited resources and staff to dedicate to the needs of family caregivers. And besides, let’s not forget their focus is older adults.

Senior Centers are a great place for family caregivers to get connected to information, that is, if they ever go inside. Senior centers can receive OAA funding to offer info and support to caregivers, but they are also understaffed and underfunded. In many cases, they just refer people back to the Area Agency on Aging.  

For many people in need, 2-1-1s are often their first call. 2-1-1 is a nationwide network of information and referral organizations. 2-1-1s connect millions people with resources to meet their basic needs every year. 2-1-1 is great, but only if a caller is able to articulate to the person on the other end of the phone what kind of help they need. 2-1-1 staff are trained to provide quick answers to immediate needs. They do not provide intensive family navigation. 

Even the federal government realized that it was so hard for people to navigate systems, they have been working on ways to make it easier for people to get the support they need. They launched the No Wrong Door Initiative, geared at helping states connect their multiple points of entry into the service system into a one-stop shop for long term services and supports (LTSS) for anyone who needs help.  According to ACL.gov, “NWD systems provide information and assistance not only to individuals needing either public or private resources, but also to professionals seeking assistance on behalf of their clients and to individuals planning for their future long-term care needs. NWD systems also serve as the entry point to publicly administered long-term supports, including those funded under Medicaid, the Older Americans Act, Veterans Health Administration, and state revenue programs.”4

So what about the No Wrong Door Agencies? Even though there is a movement to streamline the way LTSS are offered to families, most states do their own things. So even with federal support, processes for getting people what they need and getting everyone who helps us on the same page can be cumbersome. 

Why It’s not the System’s Responsibility

A significant number of people who are in need of long term services and supports from these systems aren’t even eligible for them in many cases. The majority of formal long term services and supports are tax-payer funded (whether they came out of your check or you donated to the cause). Many of them are based on financial need.

Massive numbers of families putter down the road of aging without ever interacting with the formal service system.

The problem with relying on the service system to give us answers is that the system is not equipped to troubleshoot caregiving. Caregiving is a complex human experience. Beyond navigating services, we need help to navigate the emotions of caring and support to build self care practices. We need different levels of support throughout our journeys. Sometimes we just need quick answers. Sometimes we need our hands held. 

Here’s the real question:

Like Denise Brown at Caregiving.com said, “What if we didn’t wait for individuals to say, “Hey, I’m a family caregiver!” and just assumed everyone is until they tell us they aren’t?”5

Why is it that we’re waiting for encounters with the service system to get them the help they need? Why are we counting on the system to actually be helpful, supportive, and proactive?

Why are we putting the burden of connecting families to the support they are looking for back on them? 

So whose responsibility Is it, anyway?

It is our collective responsibility, as family members, friends, neighbors, coworkers, members of faith communities, and participants in the marketplace, to make sure people know what they’re doing has value and that there’s a name for it. 

The community. That’s who we should be teaching about the common stages, turning points, emotions and needs that people caring for their loved ones have. 

That way, when we walk in their front door, and you see us caring for our mom, dad, grandma, uncle, brother, adult child… you can give us the secret code:

Family Caregiver.

After all, word-of-mouth is still the best referral source. 

How did you first find out you were a “family caregiver?” Who told you? How did it impact your caregiving experience? We’d love to hear your experience. Share it in the comments below.

Sources:

  1. https://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf
  2. https://www.aarp.org/content/dam/aarp/ppi/2019/02/older-americans-act.pdf
  3. https://www.marc.org/About-MARC/finance/2019BudgetandWorkPlan.aspx
  4. https://acl.gov/programs/connecting-people-services/aging-and-disability-resource-centers-programno-wrong-door
  5. https://www.caregiving.com/2017/12/what-if-we-assume-everyone-is/

That Mom Feeling

For a while now, my grandma has referred to me as “Mom.”

Not directly TO me, but when she tells others about the person who is taking care of her, that’s what she says.

This week it clicked.

My grandma is constantly time traveling between the here and now and a chapter of her life where I hadn’t even been thought of yet.

I realized that often when she talks to me on the phone, she believes she is speaking with her mom.

The other night, Grandma went to bed and she said she needed to call her mom. I freaked out because I knew she was going to be calling me, and I still had to do the dishes. I helped her into bed and started washing the dishes. Sure enough, my phone started ringing in the other room. Thankfully she didn’t hear it. Once I was safely in my car, I called Grandma… and this time, I knew she thought she was talking to her mom. I had to laugh. It felt like I had just lived out a sitcom episode.

Last night, I talked to my grandma when she got home from her Bible Study and told her I’d see her in the morning. She called me back a little later to tell me about talking to Rachel and asked me to call and wake her up at 9:00. I couldn’t help but start giggling uncontrollably. The thought of playing the role of Jennie cracked me up.

So all this time, the lady who has been waking her up every morning and talking to her before she goes to bed… and setting up her pills and doing her shopping and everything else… is her mom.

Calling me “Mom” is her brain’s attempt to make sense of me and why I’m on the scene. She knows I take care of her, and she knows we’re very close.

In grandma’s dementia brain, that feeling is the one only Mom can give you.

I am very familiar with that feeling.

This week I very suddenly and unexpectedly lost my own mom.

She went to work on Monday and suffered a catastrophic hemorrhagic stroke. She passed on Tuesday.

Everyone has been asking me how I’m doing.

Remember as a kid when your mom told you to stay close at the grocery store?

I constantly and deliberately disobeyed my mom’s instructions (what can I say, I was a Strong-Willed Child).

Once when I was little I wandered off in the grocery store to go look at the toys. I couldn’t find my mom and I was so lost.

That’s how I feel right now.

As a woman, your mom is normally the first person you call in times of trouble.

This week, I finally understand why my grandma sees me as her mom. It is a bittersweet feeling.

Please pray with me for comfort, peace and strength as I brave ahead on this journey with my grandma while grieving my sweet mother. It’s not easy to hear the M word right now.

CAUGHT IN THE ACT: Connie demonstrates how to help a person with memory loss feel at ease

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?!?! 🥰🥰🥰

Everyday with Alzheimer’s is like the Wizard of Oz, Part II

Oh yes, Alzheimer’s 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.

http://gph.is/2cvVuc4

Everyday it can feel like we are venturing into a dream world. We’re 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 ones’ 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 don’t take care of ourselves we can get pretty ugly.

Sometimes we’re the villain when we have to make difficult choices for our loved ones’ well-being and safety.

We’ve 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 we’re 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 she’s had the power she within herself all along.

“He’s really gentle – with gentle people, that is.“

http://gph.is/1847S5a

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 Dorothy’s 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. 

Dorothy: Doesn’t 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. 

Oh, yes, Alzheimer’s is like The Wizard of Oz. 

Everyday with Alzheimer’s is like the Wizard of Oz 

Oh yes, the Wizard of Oz is just like Alzheimer’s.

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. 
And I remember that some of it wasn’t very nice…
but most of it was beautiful. 
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: Doesn’t anyone believe me?

Uncle Henry: Of course we believe you.

Immediately she comes alive. She’s 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.

What Living with a Colostomy Means

In my last post, I shared with you how I became an expert on my grandma’s colostomy. In this post, I’m going to share with you what I’ve 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.

I’m 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 it’s like to be a caregiver to someone living with a colostomy. If you’ve 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 body’s waste comes out of a “stoma” – the new opening of your colon – which empties into a device (often called a colostomy bag) worn on the abdomen. That’s 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, you’ll want to brace yourself. It’s 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. You’ll 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, you’ll work out a rhythm of caring for your colostomy, and it will become part of your routine. Through trial and error, you’ll 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 😉

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. You’ll probably want to invest in a couple weeks worth of underwear and several more pairs of pants, IJS.

If you weren’t 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.

You’ll definitely be adding some more items to your emergency kit, and you’ll want to make sure that you have a few days’ worth of ostomy care supplies in your hospital go bag (because they never friggin’ have the appliance you use ‍‍🤬)

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 “surgery” and “colostomy” 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!!

Becoming the Expert on Grandma’s Colostomy

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 didn’t think to ask, either.

Lemon Lime GIF by PlayKids

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.

spongebob GIF

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 couldn’t 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 Grandma’s colostomy. She has only been to the hospital once, for a blockage, since. 

I’ll be blunt. Considering the alternative (read: wiping butts)… I’d say that caring for someone who has a colostomy isn’t so bad. Having and getting used to a colostomy isn’t easy— 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 Grandma’s colostomy. 

I’ll tell you all about what I’ve learned about:

  • What Living with a Colostomy Means
  • Securing Ostomy Supplies
  • Getting the information you need to care for an ostomy
  • Staying on your toes with a Colostomy
  • Teaching other people how to care for an ostomy
  • Ostomy Alchemy
  • Preventing and Dealing with Ostomy Blockages 

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!

Get Out from Underneath all that Caregiving and become the HCIC

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, you’re not alone.

We are often thrust into it without advanced notice and no time to prepare. Since we didn’t prepare, we spend the first part of our caregiving journey catching up on all of the “I wish I would have knowns.” We have to form, storm, and norm all at the same time. 

We don’t have time to rally any troops, so we end up going it alone. 

I’ve 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 Grandma’s future to the back of my mind.  

The first two years I cared for her pretty much by myself. In the beginning, I didn’t think I needed help. Once I realized I did, I was so tired all I could ever think about was my bed. I couldn’t put any energy into even getting started trying to figure out what it would take to make this work in the long run.

It didn’t 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 wasn’t 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 couldn’t deal. I didn’t have the energy reserves to make smart decisions, and I certainly didn’t have anyone who could step in and take the reins for a bit at Grandma’s.  

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 “sick” days, and one major life change later…  

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 doesn’t have to be yours. 

You can resume or rebuild your life if it’s 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 can’t do it on your own. 

Just because you’re not the *only* or the main one doing all of the work doesn’t mean your loved one isn’t your top priority. That was something I had to accept before I could make this work. Accepting that doing it all yourself won’t work for long  and is neither in the best interest of you or your loved one (and anyone else involved). If you’re going to support your loved one to have quality of life for the long haul, you can’t 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:

  1. What the heck an HCIC is 
  2. My journey to becoming the HCIC
  3. The steps to becoming the HCIC and ensuring you and your loved one have the support you need to maintain your direction to your homes and dreams

Save your seat! RSVPs are limited and registration closes soon.

Count me in!

It’s time for another round of… is it a UTI or is it Alzheimer’s?

Sometimes when you’re caring for a loved one in the middle stages of dementia or Alzheimer’s, life can feel like some kind of  warped game show. 

You’re 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

  1. knowing your loved one and their habits and behaviors (you’re already winning there!)
  2. educating yourself on the symptoms of UTIs, as well as strategies for keeping them at bay, and
  3. taking quick action if you suspect your loved one with Alzheimer’s may have a UTI (or any other kind of health condition that may be affecting their behavior and energy level). If you let an infection grow out of control, you run the risk of inviting septicemia in. Going septic can be deadly.

I joke, but it is not a game people!

Learn about how you can prevent UTIs with my recent post:

http://rachelh15.sg-host.com/87-on-the-list-of-things-no-one-wants-to-talk-about-ever-utis/

Our Bathtime Routine

Photo: Rachel in the bath as a young child #TBT

When we are small, bathtime is a big deal. 

As we get older, it’s just part of our day. We think little of it. 

When you get older and begin needing help, bathtime becomes a big deal again.  

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. 

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 doesn’t make sense to bathe more often than that. 

At first, I was set on getting Grandma to comply with today’s accepted standards for personal hygiene. When she didn’t 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 they’re not doing too much and they don’t 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, that’s the only thing we would do that day. 

The longer I spent caregiving, the longer I realized that it really wasn’t worth the fight. 

Once you get past the initial mental turmoil of bathtime, there’s always the risk of falling. 

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.

Grandma's shower
One time, while I was giving Grandma a bath.. the shower doors literally fell off. I left them that way. They were making my life miserable. Now I can get in there with her and we can both move around more easily.

From that point on, we were both much more careful during bathtime. The shower had us traumatized. Grandma couldn’t 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).  

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 “non slip” mats before we finally found one that didn’t slip around too much. 

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. I’ll admit sometimes it didn’t 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 didn’t 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. 

Photo: bath time set up, with towels and toiletries laid out on bed

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. 

“Alright, now let’s go back and take a bath… okay now we’re in the bedroom. Let’s get your clothes off and we’ll go into the bathroom. Okay now let’s get in the shower. Be careful! Okay I’m going to turn the water on…”

You get the picture. 

My grandma can’t 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 👇👇👇

@takingcareofgrandma