Managing Healthcare | TakingCareofGrandma.com

What Living with a Colostomy Means

October 21, 2019

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

October 5, 2019

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.

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 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!

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

September 20, 2019

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

knowing your loved one and their habits and behaviors (you’re already winning there!)
educating yourself on the symptoms of UTIs, as well as strategies for keeping them at bay, and
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

September 19, 2019

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 👇👇👇

PRESENTING.. The Long Term Care Calculator!

July 19, 2019

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

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

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

Tell me more

Join me LIVE!

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

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

Long Term Care Explained

June 30, 2019

“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

June 12, 2019

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
Urine that appears cloudy or dark Bloody urine Strong or foul-smelling urine Frequent or urgent need to urinate Pain or burning during urination Feelings of pressure in the lower pelvis Low-grade fever Night sweats, shaking or chills	Confusion or delirium Agitation Hallucinations Poor motor skills or loss of coordination Dizziness Falling Other unusual behavioral changes

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.

What Barbara & Rachel have been up to

April 30, 2019

Dear family and friends,

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

Easter Egg Extravaganza

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

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

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

Blooming Beauty

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

Plumbing Problems

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

Extra Room Extreme Makeover

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

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

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

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

New Glasses for Gma

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

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

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

Back to Mugs Up

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

TakingCareofGrandma.com turning up!

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

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

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

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

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

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

Love,
Rachel and Barbara

How to Survive the Hospital

January 9, 2019

Photo: Rachel (left) and Barbara in the emergency room | TakingCareofGrandma.com

If you follow Taking Care of Grandma on social media, you may know that my grandma and I just survived her most recent hospitalization. She was admitted for a partial bowel blockage and stayed 5 nights.

Fortunately, Grandma’s hospital stays have been few and far between. But when she does go, since I’m her only family, I have to take care of everythang. Calvin spent a LOT of time in and out of the hospital, especially at the end. I have learned a lot about being rushed to the Emergency Room and hospitalizations.

Call up a ride. People who come in by ambulance are situated faster. If you can afford it, and it’s hard to get the person around as it is, just call 9-1-1 and go by ambulance. Plus, if your person is feeling weak, or is severely sick, you don’t want to waste any time or risking serious injury trying to get them around yourself.

You are the expert. You know the most about your caree and have the most contextual information about the situation. Tell them your concerns and suspicions and hypotheses without reserve. If they seem inconvenienced, do not let that dissuade you. Give them all the information you have and don’t stop until you feel you have given them everything they need to know. The health care professionals need all the help they can get. They have a tendency to get stuck in the climax and need a little help to understand the rising action.

Get your rest in with minimal guilt. Face it. For some of us, hospitalizations are the only time we can truly get a break and feel a small amount of relief knowing someone is close by and has an eye on our loved one. It is okay to go up for the day then go home at nite. It’s okay to only spend a few hours if that’s all you have in you, especially if the admitting part wasn’t so smooth. Sometimes, even know I know this, I feel a little guilty. This time, I found out they gave her pain medicine after the fact (lesson learned: demand to be notified before they administer these). Since they didn’t know how to soothe her, they gave her Fentanyl and Morphine. Now, I know that, in all likelihood, they would’ve suckered me into giving her some medicine regardless, or I would’ve been so upset seeing her in pain I wanted them to give her some anyway, but I couldn’t stop myself from feeling bad that she had to suffer the confusion and disorientation from the medicine while she was there. When I start to feel bad, I just tell myself that the people in the hospital are professionals. They deal with this type of thing all the time. And trust that they can handle it. Because if they don’t, they’re going to end up looking realllllly bad 😈😈😈😈

Be prepared for going to the hospital. Last year some time, in anticipation of a medical disaster that never ensued, I packed a grab and go bag and stuck it in a cubby hole with her medical binder (that contains extra copies of my DPOA and Medical DPOA paperwork). I cannot tell you how much time and unnecessary trips back and forth from the house I saved with this bag. It’s basic contents (emergency ostomy Kit, 1 change of clothes, extra underwear and socks, charger, pens, pencils, crossword puzzles). When we were waiting for the ambulance, I tossed in some snacks and her slippers. I didn’t have to go back and grab anything.

Two words: Alimentary room. The alimentary room has ice, water, hot water, coffee, and drinks. It’s allegedly for patients only, but if you want some water or are sick of waiting to the nurse to get it for your person, you can ask where it is so you can get it yourself. (If anyone ever argued with me, I would say that since I consider myself an extension of my caree as their caregiver, I am also the patient). I like to put tea in my purse when I am going to the hospital, and run to the alimentary room for hot water. It’s a great excuse to get out of the room for a few minutes, too.

Two more words: Constant observation. If your loved one has demential, behavioral or special needs, the doctor can order “Constant Observation.” I learned that when my gma’s first major hospitalization in 2015. When she started flipping out from the pain medicine they were giving her, and I wasn’t there to calm her, they out her on Constant Observation so she wouldn’t rip out her G-tube or try to leave the hospital. I later used it for Calvin when his Medicaid in-home supports waiver provider was not able to provide support in the hospital (it’s double dipping). Note: the doctor has to write an order for Constant Observation and has to be for a specific number of hours and discontinued (ie: overnite).

Prepare a basic stock update to communicate easily with everyone. When my gma was in the hospital this last time, I opened up a text message, typed in the basic info about what was going on for the day, then added or subtracted pertinent details based on who it was going to (church family vs her sidekicks vs social media). When she got home, I had a basic written account of her time there and what happened and was able to fill in some specific details. I felt pretty dang smart, I tell you what.

Take everything when you go. Not just your personal effects, but anything that is still open and usable. When they bring things to your room, they scan your bar code and bill your insurance. When you are discharged, they will THROW THEM AWAY. Wipes, briefs, tissues, toilet paper, and on and on. Take it with you when you go. Don’t feel bad. You paid for it.

Give yourself permission to recuperate. We spend days on high alert when our loved ones are in the hospital. Adrenaline pumping, heart racing, blood pressure elevated… defensive against professionals and providers, anticipating the next catastrophe… living in this perpetual state of emergency isn’t gentle in your body. when your loved one does finally get home, make time and space for yourself to get some R&R.

Photo: Barbara and Rachel (righit) in the hospital | TakingCareofGrandma.com

Hospital stays are tough. In the moment, it seems like you’ll never get out of there.

Tell yourself it’s only temporary. Look forward to the end goal, but do as much as possible to keep your loved one comfortable and safe in the moment, and hospitalizations will get less traumatic as time goes on.

If you have any other tips for hospital survival, I’d love to hear them! Drop them in the comments 👇👇👇👇👇👇

Two Words Every Caregiver Should Know About

July 3, 2018

Palliative Care.

I first found out about palliative care back when Calvin was getting ready to go home from the hospital for the last time. Originally, the doctor suggested ‘Palliative Care’ for him upon discharge. I had never heard of such a thing before, so naturally, like you, I had some questions.

What is Palliative Care?

Anyone who is nearing the end of their life, that is they have a a chronic illness or in need of pain and symptom management, is eligible for palliative care support services. Palliative care is a service that is offered by health care agencies, many of which are also hospice providers. It is often covered both by Medicare and Medicaid, as well as private insurance.

The goal of palliative care is to allow people with a life-threatening illness earlier access to the same type of care that hospice patients receive. Even though they have the same goals of helping people have quality of life and live comfortably, palliative care is different from hospice.

Palliative care goes with you wherever you go, so it can be provided in a hospital, at home, in assisted living or a long-term care facility.

When you start receiving palliative care, you get a nurse practitioner and a social worker. The nurse practitioner comes out and checks on your loved one each month (or more as needed). If you are concerned about your loved one, but not sure if they need medical care, they can help you triage what’s going on and even come out and check on them. They can order any tests or labs that need to be done (This really excited me considering the increased risks of UTIs for older people).

You are assigned a social worker who can help you navigate supports for your loved one. They can help you discuss difficult decisions and think through end of life planning. If you don’t have a DNR established, they can help you take care of that as well. The social worker my grandma has literally just offered to come over and sit down and call up her long term care insurance company with me. How cool is that?!

These two people work with a palliative care physician and your existing health care providers to make sure your loved one is receiving the very best care. It’s like your very own care coordination team!

Who can receive Palliative Care?

Ultimately, Calvin went home with hospice, but I found out after my grandma’s last hospitalization that she qualified for Palliative Care. My ears perked right up, because I knew exactly what they meant!

If your loved one has a condition that causes long-term pain and discomfort and/or for a chronic illness that causes periodic symptoms, like:

Cancer
Heart Disease/CHF
Respiratory Disease/COPD
Renal Disease/Failure
HIV/AIDS

Chronic Liver Disease
Multiple Sclerosis (MS)
Alzheimer’s Disease
Stroke (CVA)
Amyotrophic Lateral Sclerosis (ALS)

You may want to consider starting palliative care. Your person does not have to be dying or shut-in, they simply have to be dealing with symptoms of a chronic condition. Since my grandma has Alzheimer’s, she qualifies for palliative care.

What’s the difference between palliative and hospice care?

If you start researching palliative care providers in your area, you might find that a number of them are primarily hospice providers. Hospice providers are one of the primary providers of palliative care services in the country. The idea is that by offering both palliative care and hospice care, seniors and families will have a seamless continuum of care over the course of a serious illness. The goal of palliative care is to allow people with a life-threatening illness earlier access to the same type of care that hospice patients receive. Even though they have the same goals of helping people who are aging or dealing with illness live comfortably, palliative care is different from hospice. Palliative care is about maintaining a quality of life, where hospice care is about helping people through the end of life process.

If you haven’t looked into hospice, either, you totally need to! It is an essential support for any caregiver to know about!

Palliative care is already a lifesaver for us! I recently called them freaking out about my grandma’s stoma output, and they helped me triage the issue and think through it rationally before rushing her to the emergency room.

If you think your loved one is eligible for palliative care, the first step is talking with your loved one’s primary care physician. They can write a referral for palliative care for you. They can also usually tell you what providers are in your area. You then choose a provider that will accept your caree’s health care coverage and get the ball rolling with them.

Want to learn more about palliative care? Check out this great resource, Start the Conversation by visiting http://www.starttheconversationvt.org/palliative-care-hospice

(PS – If the phrase “end of life” kinda scares you, you might have a few issues to work out – Trust me, I was there, too. If you want, we can talk about it. Contact me!)

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