Category: Caregiver Guide Insights

Out of the articles I have written and continue to write, the biggest request I get is to share about the guilt that is involved in being a caretaker. There isn’t a caretaker I have met who doesn’t tell me how they feel some sort of guilt.

When thinking back I always considered it a privilege to be able to take care of my husband. I loved every minute that I could share with him. Believe me, I was that person who did it all and still felt like I couldn’t do enough. Sometimes, I wondered if I was just feeling helpless in my caretaking role instead of guilty. What I came to learn is that my sweet husband felt guilty too. He didn’t want to see me exhausted, worried, or anxious. In hindsight I wish we would have talked more about the feeling of guilt that I know we both shared. 

I bet if you were to talk to your loved one about the guilt you are feeling, they would tell you they want you to be happy and rested. It will probably even bring them joy for you to do something for yourself and be able to find release from some of that guilt you are experiencing. If you feel like you are in a situation that you cannot express how you feel, I encourage you to try and come to terms with knowing that you are doing everything you can for this person that you love and take care of. It is okay to turn guilt into peace and it’s okay to reach out to for help. This is why I do what I do..so other caregivers have someone to turn to when they need help. https://ltlagriefcoaching.com/caregiver-guide-services/

Caretaking is the hardest, yet most rewarding thing you can do. I know there is guilt that comes with watching someone suffer day in and day out and you have to be able to find that place of peace in knowing that you have comforted and provided for your loved one to the best of your ability. I remember I would have days where I felt relaxed, rested, and so assured of things (yes, those days did exist!). I used to say those were the days I was floating in God’s “peace bubble”. I was safe in there, no one could get to me, and I felt guilt free for a while. Find your “peace bubble.”

I cannot talk you out of your guilt, and no one could do it for me either. What I can do is offer you hope and encouragement. Chances are, if that person you are taking care of knows you love them and knows the sacrifices you are making for them, they will understand if you cannot be there every minute of every day. I used to say to my husband, “Honey, I do not need a break from you, just the situation.” He completely understood that.

Find a place of encouragement you can go to when you feel overwhelmed by guilt (church, friends, family, support group, grief coach).  We all need encouragement, especially when we are taking care of someone who is ill. You are doing a great job, you are an amazing caretaker, and you will get through this. You will realize you have become a much stronger, confident person in the process.

“If you find it in your heart to care for somebody else, you will have succeeded.” – Maya Angelo

(originally published on Shannon Miller)

In my last couple of articles, I have tried to touch on some of the emotional effects of caretaking.

I don’t know what your situation is right now. Maybe you are taking care of an elderly parent, a sick child, or a terminally ill spouse. Plainly and simply, there is usually fear that comes with taking care of another person who is ill, no matter what the circumstances are. You often find yourself asking, “Am I doing this right? Am I doing enough?”

I would say next to guilt, fear was one of the most frequent emotions I felt during my husband’s illness.  I’m sure you have a list of things that your fear stems from. As a caregiver to a terminally ill patient, I often found that my fear came from the “unknowns” and the “what-ifs” in regards to finances, my husband’s prognosis, the effect of it all on the kids, and the changes in day-to-day life. Fear is natural, but it can be severely limiting.

I think we can become afraid to the point that we are unable to enjoy the time we have with our loved ones. Looking back, there were moments I would let fear take over. I started to realize the value of dealing with my fear and uncertainties in a healthy way.

There’s an old saying that “having a good day is sometimes as easy as choosing to have one.” There’s such great truth in that when it comes to fear. Ask yourself the tough questions: Do you want to base your day on a diagnosis, a pain level, or a distant bill? Or do you want to choose to have a good day with your family and friends in spite of the circumstances?

Attack it from all sides: physically, mentally, and most importantly for me, spiritually. I found great peace in my prayers, and great laughter in some of the more offbeat “adventures” at the hospital or doctor’s office. Fear evaporates in the face of joy. Think about it…when was the last time you laughed and felt entirely afraid at the same time?

As caregivers, we will almost certainly face scary moments and realizations. If you find that these times truly are paralyzing you, I encourage you to seek out coaching or counseling in person and/or place where you are comfortable.  

You will become a survivor in this as well!! You will find the confidence to do and ask things that you could not see yourself doing or asking before. You will hopefully start to realize that you are feeling that fear a lot less, and that you are able to take control of what once seemed like the uncontrollable.

Courage doesn’t always roar.  Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.  ~Mary Anne Radmacher

(originally published on Shannon Miller) 

Being a caretaker is an emotional roller coaster for sure. Personally, I felt the emotional fatigue was much more draining than the physical.

At the end of some days I could not even put a thought together. My mind was flooded with the well-being of my loved one, our future, and the kids. While this is normal in the process of everyday caretaking, it can become unhealthy and often times lead to depression and anxiety if you let these thoughts consume you. You will have to find some ways to occasionally release the thoughts and relax your mind.

What I learned through my own journey is that it was okay and also very therapeutic to cry. I would usually let go of the tears in the evening hours when everyone was already in bed asleep. Sometimes I would cry with my friends, but for some reason I felt like I had to stay stoic and strong in front of my husband and son. I know a lot of caretakers feel that same way. It is important to be able to find your time and place, where you can let go and let the tears flow freely. Many times I would feel a sense of relief after a good cry.

As with any challenge you face in your life, there are good and bad days. On the bad days, I used to try and find what I would call my “nuggets” of joy. Sometimes they would be as big as receiving unexpected, good news from a doctor’s visit and sometimes they would be as small as five minutes of quietness while the sun was shining down on my face.  It didn’t matter what form they came in; I was on the daily hunt for my nuggets. I became determined to find some joy because I knew this would eventually help me and those around me.

I encourage you to look for and find your own “nuggets,” particularly on the bad days. Find some good stable, emotional support. Surround yourself with people that want to lift you up and encourage you daily. I easily became very guarded with my time, and I had to be careful not to isolate myself too much. Share your joyful daily finds with your loved ones, and it will bring them some much needed encouragement as well. You never know, they may have a few of their own to share with you too!  The times that my son and I were most joyful and content were the times that my husband’s smile was the biggest.  I hope you will share some of your “nugget” stories with me.

“Joy is the holy fire that keeps our purpose warm and our intelligence aglow.”- Helen Keller

Originally published on Shannon Miller.

I will admit I have a little “June Cleaver” in me!  We had lived in our home for close to twelve years, and for most of that time, you would have found my house spotless with everything in its rightful place. It seemed so important to me at the time, but that quickly changed. Don’t get me wrong I like having my house in order, but spotless became a thing of the past, and the best part is that was okay. It didn’t take long for me to find that it was more important to have medications in order than to have a clean kitchen sink. Don’t feel guilty if priorities at home start to change.

If Nick was in the hospital, home was a place that I would go just for some sleep, a shower, an occasionally mindless TV show, and to spend some sweet time with our son. There was no cleaning or cooking, just a short reprieve in a place that was filled with so many memories and brought me great peace. It was almost like a time for me to try and regroup. My home became the place that I “visited.”

When Nick was home from the hospital, things ran much differently. I wanted home to be that peaceful environment it had always been before my husband got sick. I loved him being home, but honestly these were the times I was in full-on adrenaline mode. I was a wife, mother, caretaker, and nurse 24/7. There had to be schedules of medicines, home healthcare, showers, and so on. I found it helpful to have a big desk calendar that I could write everything down on and review daily. I felt so responsible for taking care of him, and I always felt the need to get it all right.

One of the strangest feelings I encountered during this experience was the way in which my feelings about being at home changed. In many ways, home becomes just as much of a workplace as it is a resting place. Your loved one (depending upon the severity and effects of their illness) may be unable to do many of the practical tasks they were once able to, and these responsibilities are suddenly yours, from getting them out of bed to getting them dressed. Tasks will quickly be overshadowed by daily necessities, but setting up an organized system at home is the best way to help you get it all done to the best of your ability.

You have to find the system that works best for you and your family in your home. For us organization and structure was key to making things work. I would have telephone numbers of doctors, the hospital, and pharmacy out and accessible, with medicines lined up across the counter. I would get familiar with the appointments that we had to be at each week, and often times the hospital would call and add more. If you’re frequently on the go, set up your cell phone to alert you of upcoming appointments. There is no right or wrong way to do this…..find your way!

As far as food goes, you can have someone set up a meal chain for you. If you are not up for visitors or won’t be home, ask a neighbor or a friend if people can deliver food to their home for you to pick up at your convenience. There is a lot of great information at www.lotsahelpinghands.com that can help you get organized with meals and other practical things.

I do not know if this will make sense, caregivers, but you will begin to forget about “you” for a while. This is why it is so important to get some rest and have a good laugh or a good cry whenever you can.

(originally published on Shannon Miller)

As I’ve journeyed through life, one of the most valuable lessons I’ve learned is that you never truly know what someone else is going through. The world around us is filled with challenges, and it’s easy to see how tough times have become for so many. Yet, in the midst of these struggles, there lies a simple but profound truth: offering encouragement can make a world of difference.

When you take the time to encourage someone, you give them a priceless gift—hope. You remind them that they are loved, that someone cares, and that they are not alone in their journey. Think back to the moments in your own life when someone extended a kind word or gesture to you. Remember how it lifted your spirits, how it made you feel seen, valued, and understood. I can personally attest to the incredible impact that encouragement has had on my life. It has been a source of strength, helping me to navigate through some of my darkest days, and it continues to be a guiding light even now.

The power of an encouraging word should never be underestimated. In today’s world, reaching out to someone has never been easier. A simple text message, an email, or even a handwritten note can bring warmth to someone’s heart. One of my personal favorites is offering to pray for or with someone. There’s a unique comfort in knowing that someone is lifting you up in prayer, holding you close in their thoughts and intentions.

Encouragement is about more than just words; it’s about recognizing someone’s needs and connecting with them on a deeper, personal level. Sometimes, you might wonder, “Is there really anything I can say that will help?” The answer is almost always yes. Rarely does anyone turn away from a kind word, especially when it’s spoken with sincerity and love. Over the years, I’ve had the privilege of forming some incredible relationships that began with nothing more than an encouraging word.

I recently came across a passage that beautifully encapsulates this idea. In his second volume of the leadership book “Habitudes,” Dr. Tim Elmore compares a person’s spirit to a hot air balloon. He writes, “We fill other people’s balloons by affirming them, meeting their emotional needs, and giving them hope.”

So, who will you encourage today? Whose balloon will you fill with hope? Remember, as Dr. Tim Elmore wisely said, “Encouragement is the oxygen of the soul.” Your words have the power to uplift, inspire, and breathe life into someone’s weary spirit. Don’t miss the chance to make a difference in someone’s life today.

I remember asking myself this question once, and it was certainly a turning point in my caretaking journey. For us, home healthcare (HHC) came in at a time when my husband needed twice-daily IV antibiotics and wound care. It was an interesting point along the road, because it not only made me realize that I indeed could not do everything my husband needed, but it also involved an “invasion” of our own personal, peaceful space.

HHC often involves relinquishing some control as a caregiver. In our first round with HHC, the agency was assigned to us by the hospital. The first appointment was at least two hours spent in my living room going over the loads of information that I was just starting to understand myself. I did not realize at this point that I actually had a choice (or at least as much of one as insurance allowed) in what agency I wanted taking care of my loved one.

In our “rookie stages” of HHC, we had nurses in our home anywhere from 5-7 days a week. Given this time, I picked up a thing or two along the way. HHC is a unique experience, but just as you would with anyone who comes into your home on a regular basis, it is of the utmost benefit for the caregiver of the patient to develop a good working relationship with the visiting nurses.

Honestly, it was a difficult adjustment with some of the initial nurses. I could usually tell immediately if my husband was comfortable with whoever the agency sent. He was the one who was being treated, and if he wasn’t comfortable, then neither was I.  I quickly learned that I could request different nurses. Some nurses might, for instance, be more proficient with PICC lines than others, or even gentler with changing bandages. These are the slight changes that minimize the discomfort as the transition from hospital to home takes place.

Sometimes, caregivers and patients may find themselves in a place where they are just not comfortable with a specific HHC agency. You have the power and the right to choose who comes into your home to treat your loved one. There are definitely some really great agencies out there, and sometimes it takes being a vocal advocate for your loved one to find the one that works.

We were fortunate enough to develop a good “working relationship” with some of the nurses we saw on a regular basis. I learned that there was a bit of give-and-take to making HHC work best for my husband. While doctor’s appointments were virtually impossible to reschedule, most of the nurses were able to work with us to accommodate our time frame. HHC nurses generally make their “rounds” each day, and they can usually be flexible. Don’t be afraid to check.

More often than not, you will be problem-free with HHC. If there is an unfortunate situation where you or your loved one is dissatisfied, there is usually an on-call nurse manager that you can contact. In any case, working with HHC is often a “trial run” scenario. Find who and what will work the best for you and your loved one.

“The blessings that come from reaching out to others cannot be overestimated.” Barbara Johnso

(originally published on Shannon Miller)

I remember that day standing in the emergency room waiting on the doctor’s to come back with the results from the MRI. The minute he showed us the tumor on the spine, we (myself, my husband Nick, and my then 16-year old son Aaron) knew that my husband’s cancer had come back, and we knew that we would be facing a whole new battle as a family.

The moment he delivered the news, I was flooded with thoughts about how this would affect jobs, finances, children…life as we knew it. It was without a moment’s hesitation that I realized my role as a wife and a mother was about to be transformed as my husband became a cancer patient.

I had no idea how exhausting, painful, and transformational this experience was ultimately going to be.

But for the caretaker, these feelings and considerations are certainly not unfamiliar. The very first thing you face is having to understand what this means for you, your family, and your loved one as you take the first step down this walk that will test your physical, mental, and spiritual endurance.

I cannot express the importance of faith in a moment like this. My conversations with God about the changes to come were pretty much the only thing I held on to in those first hours, days, and weeks. I threw myself into this walk 150%. There was no consideration of my own physical and emotional well-being, because I was riding on love, fear, and adrenaline at 100 miles-an-hour.

Looking back, however, I think during this time I gave up my right to take care of me because of an immense devotion to taking care of the man I loved. Yes, this is our call as caretakers, but this does not need to be what defines the caretaker’s journey.

After your prayers, after your tears, and after your first good rest, take the time to figure out how you’re going to keep your life as normal as possible. I quickly realized that my husband was not being diagnosed with cancer every day. The devastation was not going to rule. Life was going to go on, and the only thing I could do was live it.

I hope to be able to share how I learned the importance of taking care of yourself as the caretaker, so that you can be there when you’re needed most. My heart is to be honest about each physical toll and mental struggle throughout this journey, and help others through the many changes you face alongside your loved one.

“When you see obstacles in your path and it seems you are unqualified for the task at hand, know that you will not really be doing the work. God will. He will give you the slingshot to slay your giants or the power to part the seas.” -Kozar and Woody, Babes with a Beatitude

(originally published on Shannon Miller)