Show Notes

Do you understand the power you have to change a person's day? Let’s talk about the ripples we create.

My nieces came to visit me and my family this summer and one day we were hanging out by a pool. The girls sat at the edge and put their feet in. They were fascinated by the ripples they were making in the water. They played with kicking their feet fast and then slow to see how it changed the ripple pattern in the water. 

I realized that whenever I see a picture or think of a scenario of ripples in the water it is usually caused by something being thrown into it. So the fact that they were experimenting with the control they had of the water drew me in. Maybe, I was fascinated by it because they are super cute girls but I think what really caught me off guard was the fact that instead of a person throwing something in the water they were physically in the water causing the ripples. 

As caregivers, we are physically in the water making the changes. You see, when something is thrown in the water and you happen to see the change it makes the change is usually an after effect. But when you are in the water, moving it around, actively changing the speed to adjust the ripples that spread out into the pool you are causing change on purpose. 

Every decision we make has an effect on the people we care for, on the people we live with, the care our loved ones get, the relationships we have with them, and the life we get to live. 

Sometimes we may feel like we were pushed into the deep end and we find ourselves thrashing, trying to keep our heads above the water making it a sea of foaming waves as we struggle. Other times we may feel like we are dipping just a toe in and causing very little change at all. 

No matter what, we are creating change. We are just usually too busy, too stressed out, and too tired to realize it. 

There are positive and negative ways to make a change. 

Let’s look at the same scenario in two different ways. 

If you wake up grateful to have the opportunity to be on earth with the person you care for and spend the day trying your best to make it a good day for not only them but also you, then you have the opportunity to have a positive effect on the world. Just looking at the day as an opportunity will create ways for you to bring positivity and love into your day. That can be a gift to the person you are caring for and the people you come in contact with throughout that day. 

Maybe you had something delivered to the house and when you met the person at the door you simply said thank you with a smile. That could have been the only positive thing that happened to that person and they could have gone home a little bit happier because of it possibly sharing that good feeling with their family. 

Or, you actually take a moment to see the person you care for and despite the pain and fear that their health brings… you see THEM and you smile and hold their hand and they feel, for at least that moment, that things can be ok. That is how you positively impact their life at that moment. 

But let’s flip those two scenarios around. 

What if you opened the door to accept the delivery and you don’t even look at the person. You just grab the package and slam the door. That translates to the delivery person feeling angry that you didn’t even acknowledge them and they huff back to their truck. They drive away angrily and get home in a mood and yell at someone there to let their frustrations out on them or at least retells the interaction to their family making them angry about it. 

Or 

You don’t take a moment to see the person you are caring for and you spend all day busy, in the same house or even in the same room but not connected.. extremely distant because the fear and sadness created by their health challenge are overwhelming. And they lie there feeling lonely and abandoned and full of despair. Maybe they react to you angrily because of it or they withdraw because the cue you are giving them is that they are a burden. 

Which scenario feels better?

Now you might say - I don’t have any control over how people react to what happens to them. That delivery driver made a choice to go home angry or my loved one made the choice to feel hurt when I was just doing everything I can to keep things in the house running for their benefit. 

Sure, we all have control over how we let things affect us. That’s true. But we can also take responsibility for the change we create in the worlds we live in.

When we can bring positivity to our world and the people around us then they don’t have to work to counteract that. In fact, they might not even realize why they felt so happy after being around you but it would effortlessly be passed on just by them being a little bit happier even if they don’t know why.

However, if you bring negativity to the people around you… they would have to actively work against that affecting their day. Angry ripples in the water are strong and hard to avoid. They push you around and stir up emotions that are hard to let go of. They can ruin a person's day and it would be hard for them not to pass that negativity on to other people they come in contact with. 

Sure they have the power to brush it off but they are actively trying to undo something you created. 

Maybe you are saying - I don’t have the capability of doing any more than I already am and taking the time to care about how other people feel will take more energy than I have. I hear ya. This isn’t about caring about how other people feel. This is all about understanding how you can affect a person’s life. The responsibility of being a caregiver is overwhelming but it is important to note how much of an effect you have on the life of the person you care for.  When they are scared you can help them find courage. When they are sad you can help them see that there is hope. When they feel lonely you can sit by their side and help them notice there are people who are rooting for them. 

When you are the person taking care of someone you have a direct effect on the type of day they are going to have. Sure they may feel grumpy or find themselves having a bad day but that doesn’t mean you have to enhance that difficult emotion or make their day worse because they should just be happy that you are there. We have to remember that they are people with feelings too. Most of us are caregivers for family members because we love them in some way. The hardships that come with caregiving make it easy for us to forget that.

Maybe you are thinking…No one is nice to me or helps me so why should I be nice to anyone else? That’s just riding that big wave of negativity and fueling it so it can just break through other people’s lives like a tsunami. When we are negative because we feel the world is against us we are making that choice. And if you ask me I think having a bad day because someone else is having a bad day is offensive. Sure it’s easy to let it happen and I’m not saying it doesn’t happen to me but if you think about it… you’re letting them dictate how your day will go. You’re giving up your control of how you want to live that day because you’re letting their mood affect you and then turning around and passing it on to the people you care for. 

Here’s a secret… caregivers who seem to be enjoying their lives are doing so in spite of the difficulties of caregiving. Their lives are difficult, however, they chose to find ways to enjoy living as a caregiver. It’s not either-or… it’s both and. They are working hard to find ways to laugh, enjoy their families and do things that they love while traveling far with their loved one every six months to have scans and Drs visits, or taking them daily to physical therapy or changing adult diapers every two hours. They smile at you when you pass in the hospital hallway or hold the elevator open for you because they know how hard things can be without even knowing your story. Sometimes they walk into a Dr’s office full of hope and leave crying only to wake up the next day with hope because that is the only option they give themselves. 

Caregivers that seem to be loving their life don’t always have good days but they rebound from those days and wake up ready to start fresh. They still feel fear and sadness and loss and they invite these feelings to come up when they show, instead of hiding and suppressing them, so they can process and move on.

They do this because they know they have a responsibility and the opportunity to be able to help someone they love. They know that their actions cause ripples in their world and they would like to do their best to do things that can bring joy to people’s lives. 

As difficult as it is to be a caregiver, we have to decide what kind of lives we want to live. We have the choice to find ways to make our lives positive or allow them to be negative. I’m not saying that it’s easy but the most important choices aren’t. Choosing to find ways to love your life isn’t just about how you can bring positivity to the people around you. It’s about finding ways to love living. As soon as you help another person you instantly feel a little better. Smiling as a stranger and getting a smile back from them feels great. Making positive connections with other people enhances our lives. 

Sometimes it feels like we’ve been beaten down and overwhelmed for so long that finding ways to be positive, to have fun, to enjoy the person we are taking care of is impossible. But if you feel that something needs to change because you can’t continue to live this way. If you feel that you would very much like to find ways to love your life again and still be a caregiver I know you can do it. Caregivers all do big things and this is one thing you can do. I’m here if you need a little help finding your way. Just send me a message and we’ll work together to find how to get you on the path towards loving your caregiving life. 

If you'd like more caregiving support find me at www.loveyourcaregivinglife.com

Last night I was watching Ted Lasso, one of my favorite series to watch, and it ended up being a Christmas episode. Now usually I don’t watch episodes that are holiday-specific but this time I kept it on. It’s one of those shows that make me feel happy to watch and I always look forward to it when there is a new episode. 

Now I really like holidays. I’m up to celebrating anything and sometimes we have mini celebrations at home - just because. So watching a Christmas episode in the middle of August made me look forward to winter which is a crazy thing to say because summers in the midwest aren’t very long, to begin with. 

While I was watching it I started to think of all the traditions I love that really run from Thanksgiving to New Year. A month of decorations, excitement, and anticipation. The movies, the music, the family activities. 

Then someone on the show had “It’s a wonderful life” on in the background and I thought of how I’ve never watched that movie but always have it on my mental to-do list for December.

It’s something that I always say I want to do but never do. Now, that is a movie and, frankly, inconsequential. My life is ok without seeing it. However, it made me wonder… how many things do I put off until later that would actually make a difference to me now?

What have you been putting off that would actually change your life in some way if you did it? Do you use caregiving as a reason why you don’t do it?

You see… If I don’t do something I love to do for a holiday, during that holiday, then I would probably just wait until next year and hope to remember it then. For example… apparently the last two years I have not dyed easter eggs with my teenage daughter because when I was cleaning out a cabinet recently I found a couple of egg dye sets. We didn’t make the time to do it and kept the kit but then bought another one the next year (probably because I forgot I saved the one from the year before) and still didn’t make them. That means we haven’t dyed eggs together for almost three years. 

I really like sweet potato casserole for Thanksgiving but one year I forgot to make it and waited until the following Thanksgiving to eat it. Meaning I waited two years to eat sweet potato casserole even though it’s something I enjoy. 

Looking back at this I am alarmed by the fact that - I limit myself to making these things, that bring me happiness, to just one time a year AND I am living as if there will be a next year.

Caregivers, out of all people, should have a pretty good understanding that there are no guarantees in life. Once you become a caregiver you find out that life is not actually under your control and it zigs when you think it is going to zag all the time. 

How can we spend so much time fighting to keep someone alive and not fight to actually live?

This isn’t about Easter eggs and Thanksgiving casseroles…

This is about the I Love You’s you don’t take the time to say. The hugs you will give next time. This is about not putting the effort in to try to see people that you love. It’s that art class you always wanted to take but you’re waiting for the right time. It’s taking the time to learn how to meditate. Having a romantic meal with your spouse. Spend the day having fun with your child. 

It’s the Somedays

Maybe laters

When I have time

When she gets better

After the cancer is gone

When he is able to walk again 

Type of things

What is that thing? Write it down in your phone so you can be reminded of it later. 

Then think of what it is that’s stopping you?

Why are you living as if there is an abundance of time when you know that isn’t guaranteed?

Why are you denying yourself joy and happiness now… hoping to have time for it later?

Maybe it’s because Joy and Happiness don’t have the same value as busyness and stress do.

You know when you meet a person and they seem so interesting because they go on trips and have cool hobbies? The only difference between you and them is they don’t wait. They think of something they’d like to do and they do it. 

So why not eat dyed eggs any time of the year just because they make your boiled egg a moment of joy?

Why not make that casserole in the middle of summer?

Why do we put constraints on when we can do things that make us happy? 

Denying yourself a day with your husband as he’s recovering from surgery doesn’t get you any further in life. It just makes you lose out on a day of connecting with someone you chose to live your life with.

Sure trying to do things that are fun can feel awkward. It might have been a while since you last remember laughing. Maybe your body doesn’t know how to giggle anymore. But I swear it’s still deep down in you somewhere and all you have to do is open the door to let it out. 

Take that trip. Read that book. 

Live your life seeking ways to fully immerse yourself in it. Be curious. Love deeply. Laugh loudly. 

Stop putting it off until later

Because that opportunity might not ever come and being miserable with life until there’s time for happiness is an unfortunate way to live. 

Caregiving sucks! It turns your life upside down. This isn’t what you planned on doing at this point in your life. However, caregiving can be difficult and you can still enjoy your life at the same time. If you need help figuring out how to find information on how to work with me at www.loveyourcaregivinglife.com

Show Notes

:45 - Intro

1:05 - Cameron shares stories with us about her parents and family. How she came about moving back home and was able to catch changes she saw in her mom.

2:30 - The signs of Alzheimers Cameron began seeing with her mom.

4:07 Her experiences and how she included her mom's Dr and had her tested for Alzheimers.

4:43 Cameron’s mom had a friend that suggested she get tested for Alzheimers that ultimately diagnosed her at 65.

5:08 How it feels, as a caregiver and child, to receive the Alzheimers diagnosis for a parent.

5:31 Cameron describes what legal documents she knew she needed to set up so she could help her mom in the future when she needed it.

6:00 Cameron describes how her mom’s Alzheimers progressed. The support she set up for her mom while she still lived on her own. 

7:00 Protecting her mom from financial scams and realizing it was time for her mom to move in with her. 

7:40 Cameron sets up services and support for her mom to help her care for her and still be able to parent her children and continue to work. 

8:00 Cameron shares how she worked to balance caregiving along with everything else in life she was responsible for. 

9:00 Benefits of having mom stay at home with them as well as difficulties. 

9:45 The effect of the stress of caregiving and realizing that she couldn’t give her mom the care that she needed. 

10:23 Memory care.

11:00 Cameron shares how she prepared herself for the inevitable challenges and outcome of her mother having Alzheimers

12:24 The different phases and change in roles for Cameron and her mother. 

14:25 Parental/ child role reversal. Taking care of her parent and the difficulties that role created. 

15:30 How memory care allowed Cameron to focus on being her daughter.

16:00 The work Cameron did as a caregiver while her mom was in memory care.

17:20 The benefits of having outside help with a family member who has Alzheimers.

19:00 Different ways of caregiving and how everyone has to make it work the way it should for their family.

20:00 Cameron tells us how great it was to move her mother closer to home and recounts the happy moments her children had with their grandmother.

22:17 Early 2019 Cameron’s mother is diagnosed with cancer. She shares the difficulties of having to help hospital personnel with her mother.

28:00 Cameron gets another call from her mother’s facility. She needs to be checked for recurring cancer but if she leaves she has to quarantine for 10 days before going back to the facility. Cameron found a facility her mom could quarantine in. 

29:00 Cameron describes how covid policies created more difficulties for her and in getting her mom to the hospital for a biopsy. 

30:00 Cameron finds out her mom’s cancer is back and has spread to a lymph node. She realizes that the treatments available would be impossible due to her mom’s progressed Alzheimers and Demntia. 

31:15 Cameron, her family, and Dr decide that treatments would not be beneficial and the Dr gets her mom’s facility to take her back instead of having her quarantine in a different facility due to the fact that she had a negative covid test.

31:45 Cameron realizes that when she drops her mom off at the facility with terminal cancer she wound not be allowed in to visit her.

32:10 Mom’s facility allows visiting in the late summer. Her mother doesn’t realize Cameron came for visits because of masking and distancing. 

33:09 Covid causes her facility to close again and in December 2020 covid cases started showing up in her mother’s facility. She is told if her mom tests positive for covid she would have to quarantine in a different facility.

34:00 Cameron starts planning for what she would do if her mom needed to quarantine and coordinated with hospice just in case.

35:25 Cameron’s mom gets her first vaccine and had stopped eating and drinking much and is ready to go into a hospice facility.

35:54 Three days later her mom tested positive for covid and the hospice facility wouldn’t allow her in. 

36:23 Cameron makes the difficult decision to bring her mother home with just a few hours to set things up for her mother. 

36:50 Hospice brings everything needed over to Cameron’s house. Her family moves to different parts of the house before she brought her mother home. 

37:00 Cameron sees her mom for the first time in a couple of months and is surprised at her decline. She shares the difficulties in getting her into the house on her own. 

38:32 Cameron cares for her mom while she has covid, in her home with very minimal help.

39:29 Cameron describes the last days with her mom.

40:43 Cameron realizes she needs more help and has her sister come to assist her. 

41:00 Caring for her mom during her last days with the limitations caused by covid.

41:47 Cameron shares how she wasn’t prepared to watch her mom struggle with pain and to watch her die. 

42:09 You can’t be emotionally prepared for the death of a loved one.

43:00 Cameron's experience with being with her mother when she passed. How she had to deal with the loss on her own because she had to quarantine after her mom’s death. 

45:00 The trauma that Cameron lives with after experiencing her mother’s death. 

46:00 Shares one of the last tender moments before her mom’s death. 

48:54 Discussing the end of life. The importance of sharing our experiences so people can learn more about what they can expect. 

51:08 Cameron’s recommendations for other caregivers

53:45 Recap

Learn more about Cameron and find caregiver support at www.loveyourcaregivinglife.com

“Help…

I need somebody…”

Do you remember the Beetle's song? 

I read the other day that Lennon wrote the song as an expression of the stress he was feeling due to the group’s quick success as a band. It was a song from his heart. He was overwhelmed and knew his lifestyle, as it was, wasn’t sustainable. John Lennon took a look at his life and knew he needed a change and he couldn’t do it on his own.

When was it that you realized you were over your head with caregiving and why is it so hard for you to ask for help?

Write that down if you want… take a moment to think about it. When was it that you realized you were over your head with caregiving and why is it so hard for you to ask for help?

Let all of that anger and frustration come out first. I know it’s there. I’ve had the same thoughts. I know how it feels to be angry with the world. Asking why this has happened to me? This isn’t the life I thought I would be living. I don’t know if I can keep doing this. No one asks or cares how I am doing. Everyone wants to offer help for my loved one but I actually need help too. 

Let that all out. Dump all of those words into a journal or record them into your phone. Don’t let them circulate in your mind anymore. You need to read them or hear them. That way you’ll begin to process those emotions in a different way. 

Then, when you’re done with that, I want you to come to the main questions. 

When was it that you realized you were over your head with caregiving and why is it so hard for you to ask for help? 

I know that the moment you become a caregiver everything is turned upside down and you find yourself overwhelmed with all the things you need to do to fight this threat in your life. The threat of cancer, the threat of a traumatic accident, the threat of disease, and disability. Your brain automatically goes into survivor mode and you find yourself unable to concentrate, unable to function in life, or do anything else. All you are focused on at first is what needs to be done in order to figure out what the heck is going on. How do I keep my loved one alive?

But at some point, you have a break. You have that moment when for maybe just a second you take a breath and realize you can’t keep doing things like this. Without you having a chance to notice, your life is completely different YOU are completely different. 

You realize you can’t do this all on your own. 

That was when you found yourself at a fork in the road. You had the awareness that would allow you to continue on with doing it all on your own or try to figure out how to get some help. 

There are lyrics in the song “Help” that say

“When I was younger, so much younger than today

I never needed anybody's help in any way”

We all remember those days. When life felt so much easier because looking back at it now … looking back at your pre-caregiving life… whatever you thought was hard then feels like nothing now after all you’ve gone through. If you think about it, Lennon was acknowledging that he’s changed. His life is different and he is different.

The second half of that verse is:

“But now these days are gone, I'm not so self-assured (but now these days are gone)

(And now I find) now I find I've changed my mind and opened up the doors”

Lennon realized that he not only needs help but that he is open to receiving that help.

Opening up the doors to receive help

That’s the next step. Knowing you need help and being open to being helped are two different things. Being open to having help means you have to let go of some of the control you think you have. You have to be open to people doing things a different way. You have to be open to things not being perfect. 

It takes energy to ask for help. You need the energy to handle the personal dynamic between you and the person you are getting help from. You need to find the energy to figure out what you need help with. People who care about you might not necessarily know how to help you. That’s why so many times we hear 

“Let me know how I can help” 

or 

“Call me whenever you need something.” 

To a caregiver, that means nothing because it places the burden on us to figure out what and who to ask for help. We can’t change how people offer help but we are in full control of when and how we ask for it. If you’re a caregiver you should know that things don’t happen when you are passive. Not only do you have to advocate for the person you are caring for you also have to advocate for yourself. 

Finding the courage to ask

The hardest part is… asking for help means you have to be vulnerable. You may feel like you should be able to handle everything. You actually may have not asked for help as an adult before and don’t really know how to do it. Or you could see asking for help as a failure on your part to be able to cope. 

Let’s just remember that the person you are caring for has a full team of people who are helping and who are specialized at what they do. Not ever did you think - we can handle that surgery on our own, or we can run those blood tests at home… I’ll figure it out. That is unheard of. You probably emphatically asked - who can help them? Who’s the best surgeon that we can find? 

So why wouldn’t you do the same thing for yourself? Why does it feel so hard or wrong to get together a team of your own?

Our lives have changed

The next verse of “Help” by the Beetles reads:

And now my life has changed in oh so many ways (and now my life has changed)

My independence seems to vanish in the haze

But every now and then I feel so insecure (I know that I)

I know that I just need you like I've never done before

If that isn’t the most precise and beautiful verse to characterize what we all go through as caregivers I don’t know what is!

Our lives have changed without us even being able to have the luxury of witnessing that change. Because of that change in our lives, we become different people and at some point, we might find that we don’t exactly like who we are. There comes a day when you actually… really look at yourself in the mirror and not recognize who you are anymore. Or maybe you had one small second to realize you aren’t very happy. 

Looking back on your life as a caregiver,  you probably can see how you have lost some of your independence. Having this strong sense of duty towards the person you care for you probably let go of a lot of who you are. When we are overwhelmed the last thing we think of doing is to continue our weekly coffee dates with a friend or taking those walks that used to really help clear our heads. You let go of playing or singing that music or reading that pile of books you were excited to have. We lose ourselves in caregiving, especially in the beginning, and because of that, we are filled with insecurities. We become a mess. A bundle of stress and anxiety mixed in with overwhelming worry and feelings of inadequacy because we have been thrown into a role we are not trained for and have no experience to pull from to help us.

Lennon realizes this is where he is and then he says, “I know that I just need you like I’ve never done before.” That line brings tears to my eyes. Here is this man writing this song from his heart and being truly open and honest with what is going on in his life at that moment. He doesn’t close himself off to the people around him but he instead says, I need you!

You have to find the courage to be open and vulnerable enough to be able to ask for help. However, you have two choices. You can continue as you are… angry that no one is really helping you and trying to do it on your own. Or you can let go of some of that resentment and anger towards the world, let down some of that armor you put on to try to protect yourself, and ask. for. help.

What do I need help with?

When I work with caregivers this is a process we go through early on. Sometimes you just need someone that can support you in reaching out to your network of people to ask for help. Oftentimes we are so overwhelmed with things that we can’t even think of what we could actually get help with. However, you need your own support team. Sometimes that support isn’t from what task they can do for you but to just be able to be there to help you work things out in your head. Someone that can support you just by listening or just by being around. There are people who are better suited to help out with tasks. You have to identify what they are good at or the types of things they like to do before asking them to help. There is someone in your life that loves mowing the lawn or shoveling snow just don’t ask them to be the person that bakes you cookies if that isn’t something they know or like to do. 

Once you get yourself to a place where you are ready to ask for help then you have to carefully think of what you need help with and who can fit that role. Sometimes that might mean you hire someone to do it because, just like a surgeon, they are skilled at that one thing. Once you have the tasks figured out and identify who you would like to reach out to for that specific task. Then you need to figure out how you are going to ask for it. 

Asking for help is a big roadblock for the caregivers I work with. Asking for help means that you are opening yourself up for disappointment and rejection. It doesn’t often happen, especially if you have gone through a well-thought-out process of figuring out who and what you need help with but the fear of someone saying no or not showing up is always there. It’s ok to be nervous to ask for help. Think of it this way… you had no problem making that doctor's appointment for your loved one. In fact, you were probably upset that they wouldn’t get you in sooner or that you have to wait for results from a scan. We feel so much more entitled to the help we want for our loved ones and a little bit of that energy can be useful in finding the courage to create your own team of people. 

I read that a Music critic, Dave Marsh, wrote about the song saying “… it’s bursting with vitality… [Lennon] sounds triumphant because he’s found a group of kindred spirits who are offering the very spiritual assistance and emotional support for which he’s begging. Marsh continues to explain the performance “…speak(s) to the heart of Lennon’s passion, and though they cannot cure the wound, at least they add a note of reassurance that he’s not alone with his pain.” (Sullivan, Steve (2013). Encyclopedia of Great Popular Song Recordings. Scarecrow Press. p. 224.)

Listen to (Read) that again. 

Lennon “sounds triumphant, because he’s found a group of kindred spirits who are offering the very spiritual assistance and emotional support for which he’s begging. …and though they cannot cure the wound, at least they add a note of reassurance that he’s not alone with his pain.”

That is what you can look forward to having if you go through the careful process of identifying what you need help with and who the best people are to ask for that help. Imagine, for just a minute, how it would feel to have people in your life that can support you spiritually and emotionally. We try to say that it is the stress of caregiving that breaks us down but that is also because we aren’t continually meeting our emotional and spiritual needs. So to have a group of people that are there just for that could have a big impact on your life. 

Having a team of people helping you also would give you that reassurance that you aren’t alone, you don’t have to do this all alone and that there are people out there that are willing to support you. There really are people out there that truly want to help. Just sometimes we let fear, and pride and stress, and exhaustion get in the way of us asking. 

Finding your own team is one of the most important things for you to do as a caregiver. Often times it is difficult to do on your own and if that’s the case please ask someone to help you figure it out or we can work together and find a way for you to begin to love your caregiving life. If you’d like more information on working with me you can find it at www.loveyourcaregivinglife.com

When do you know when it’s time for them to start doing things for themselves?

That’s a tricky question, isn’t it? We all have different caregiving experiences and the people we care for all have different needs. 

No matter how different we all are there are two things that are universal 

1. People should be allowed, supported, and encouraged to do things for themselves.
2. Everyone needs boundaries to protect the energy they have to live their lives the best way they can.

Learn more on today’s episode.

Transcript

When do you know when it’s time for them to start doing things for themselves?

That’s a tricky question, isn’t it?

There isn’t a definitive answer either because it all depends.

It depends on why they need help. Is this long-term or do they just need help to recover and heal? 

Our personal caregiving is always going to be different than other caregivers so there’s never a book that we can pick up that tells us how to get through life. However, I do think that we can learn from each other’s experiences, and almost always there is something in another’s caregiver story that helps us see things in a different way.

So let’s talk about knowing when they need a little kick in the ass. 

To do that we need to start at the beginning.

When my husband came home from his first cancer surgery I was super attentive. I did everything for him because he was visibly in pain. He spent a lot of time in the hospital and coming home was good for him but we had to work on pain management and getting him to eat and stay hydrated. 

I did everything I could to keep him as comfortable as possible. I made sure things were very conducive for him to rest. I kept the house quiet. I didn’t wake him up unless it was time for his medication and oftentimes I would stay in the room with him so that when he woke up he would know where he was.

My focus was to help him heal by making everything in his life easy for him. 

This phase has not changed. He’s lived with cancer for years now and every time he comes home from another surgery this is what I do. There is no question in my mind that people need a good deal of support when they come home from surgery, no matter what type of surgery it is.

Then we get to the point where they’re awake more. When there is more time in between pain medication and he is up more. This is when he needs to move around. Usually, he comes home from the hospital and his body already hurts from being in bed for so long. So once he’s gone a week sleeping most of the time at home he really needs to move. He sits up more. I have him move to a different part of the house. I have him sit at the table for a little bit each day. It’s difficult, I get it. Coming off of medicine sucks but we both know it needs to be done and that the discomfort of transitioning to just Tylenol is short-lived.

This is when there is a little bit of a battle of wills. 

I feel it is normal for a person to get used to having things done for them,  especially when they are going through something difficult. However, there’s a point where a person should start to do things on their own again because it doesn’t do them any good not to, and there isn’t anything stopping them.

Let me explain…

If my husband is recovering from surgery, he would have no problem letting me do everything for him. In fact, after transitioning to regular activities of daily living he would undoubtedly love it if I still brought him food and made sure he was drinking enough. Who wouldn’t? I think in this caregiving world we live in, not having to do something almost always feels like a treat. When you are under the stress of living with illness or disability, not having to decide what you’re going to eat for lunch is awesome! In fact, it’s a pretty sweet deal for anyone. 

So I can see why it is so easy for the person we care for to get used to having things done for them. 

Some of us then will have a hard time trying to figure out when we are doing too much for them.

Our experiences are all different. 

Sometimes we might want to do everything for them all the time always.

It’s possible that the person you care for has been disabled and you don’t know how to help them learn to start doing things for themselves.

Maybe it’s just easier to do things for them.

Or you could possibly feel stuck because you’ve done things for them for so long you have no idea how to transition out of it.

The thought of transition is an important one especially if you’ve been doing things for them for an extended period of time and are thinking of finally getting them to start doing things for themselves. If it happened over an extended period of time it will equally take a while to make changes. Also, remember that you’ve had time to process the idea of making changes and they haven’t had that luxury.

Helping them too much is not helping them.

If let’s say, you bring your loved one a cup of water and their toothbrush in the morning to brush their teeth but they can actually walk to the bathroom… then consider having them brush their teeth there. Sure it’s possible they couldn’t do that before and if they had a catheter in at the hospital there would be very little reason to get out of bed. But if they can do it… have them do it. 

If they don’t need to be in bed anymore… get them out of bed in the morning. Have them go back for naps and at night but have them get up and move around a little. Remembering of course that if a person has been under anesthesia and has been bed-bound for a while it will take a lot of energy for them to be up for even five minutes. So do it five minutes at a time.

Maybe your loved one is bed-bound. That doesn’t necessarily mean they can’t move. In fact, it’s better for them if they do move. So maybe you get them to sit up and do some movement with their arms, have them move their legs and if they need help moving - help them. 

If they have to have physical or occupational therapy get them to do their exercises at home. If they don’t want to… try to do them together. 

Here’s the thing I see a lot of …

Caregivers doing everything for the person they care for and then they get burnt out and want to stop. Then they get frustrated and angry with the person they care for because they won’t take care of themselves. 

That usually happens when boundaries are not set.

What do I mean by that?

Let’s say it’s midnight… I’m exhausted but not asleep yet. My husband is almost recovered from surgery and is fully able to get in and out of bed and do things for himself. He turns to me and says… I’d really like to have something to drink. Now he probably has water by the bed and I’ll ask him if his bottle is empty and he’d say no but he’s tired of water and would like something different. 

I now have two options.

1. I can check in with myself and see how I feel about that statement. WIth me, there are two options. Options usually are ok fine or there’s nothing wrong with your legs!

If I say Ok fine even though I am exhausted it HAS to be because I am doing it out of love and he has been working really hard at getting back to doing things on his own. Or maybe I know he had a really rough day. Or possibly I am just really happy he is at home with me and feeling better and I’d love to do something nice for him. Doing something out of the goodness of your heart feels good and it strengthens the connection you have with that person. Great then, all good reasons. I go get the drink.

If, when he asks for a drink, I immediately get frustrated or angry. If I start listing in my head the number of drinks I’ve gotten for him in the past week or start asking myself how I became the eternal drink getter… then I know I need to set some boundaries for myself. If I would do it in anger. If I know I would stomp down the stairs and at some point slam the refrigerator. Then it’s a no. I would say to him - I’m really tired and I’d like to go to sleep but you can go down and get something - I’ll wait for you to come back up before turning off the lights. The boundary set is - I won’t do things that cause me extreme irritation, frustration, and anger if I don’t need to. 

There’s nothing wrong with that and both options are done out of love for him and for myself. 

What I won’t do is hear the request, get angry, start complaining about all the things I do for him and why can’t he do things for himself. Continue to yell at him as I huff out of the room. Stomp downstairs. Pour him something in anger. Slam the refrigerator door. Stomp back upstairs out of breath and angrily hand him his drink with daggers coming out of my eyes. I wouldn’t want a drink from myself if that’s how it was to happen.

If it sounds like I’ve had some experience with this type of situation you’re right. It took me a while to figure out how important setting boundaries are in caregiving. The thing is, when you do set boundaries almost always the person you care for benefits from them because you are a happier person around them. 

And this isn’t about a drink. This same analogy can fit in if your spouse refuses to use the bathroom because a bedpan is easier for them. Or maybe someone has to use crutches and you go get them even if they are within their reach. You have to know why you’re doing it and pity is NOT a good reason why.

When my husband starts to feel better I know that I have to start letting him do things for himself and I need to reset the boundaries. I need to start asking if what I am doing during the day is allowing him to do the things he can do - even if they might be slightly difficult or frustrating, but not impossible. Am I taking into consideration the type of day he’s been having and how he’s feeling? Does he need a break - since he isn’t good about asking for them? 

When I start resetting the boundaries he will at some point become cranky about it. I understand that… he is hurting, he’s tired, he’s just done with always needing surgeries, he hates having cancer and just wants to go to sleep. I’mm ok with him getting cranky with things because I know it’s something he needs to go through. I fully support him expressing his frustration but boundaries are always set up in my life on how people can talk to me and he knows to use his words wisely. 

As caregivers, we all need to have boundaries set on how we allow people to speak to us but we’ll have to save that for another episode…

Just these simple things may be difficult for caregivers to do. We all have the ways we like to serve the people in the world we live in and we do it for different reasons. We all have different personalities and different childhood and adult experiences. 

But no matter how different we all are there are two things that are universal 

1. People should be allowed, supported and encouraged to do things for themselves.
2. Everyone needs boundaries to protect the energy they have to live their lives the best way they can.

If you can start to look at your life you might begin to see a lot of places this is applicable. With your extended family, with your parents and children, With doctors and nurses. 

Don’t always jump in to help someone and make sure you are not doing things that suck the life out of you. 

We have to remember that the people we care for are emotional humans. They have fears and experience pain just like the rest of us. When we fail to see them as such and when we live to hate being a caregiver it’s just a sad situation. It isn’t impossible to come back to a place of love and remembering you why but if you can keep yourself from getting there… if you can remember and practice setting boundaries… if you can let them do things for themselves and use empathy and compassion to try to figure out what that is on any given day… then we are putting in the work towards loving our life as caregivers and enjoying being around the person we care for. 

If you need help setting boundaries come to the website www.loveyourcaregivinglife.com and leave me a message.

Do you worry about things all the time? I mean to the point that you can’t stop worrying about them and then feel stuck in that worry?

I was there for a while and it wasn’t a good place to be. 

Right after my husband was diagnosed with cancer in 2013 I jumped into the deep end of trying to find ways to cope with the loss of control of the things that were happening in my life. 

My world wasn’t just being turned upside down… it was taken from me, thrown in a blender, and then thrown back at me to try to make something of it. 

I tried holding on to something by researching everything I could about his cancer trying to prepare myself and learn as much as I could.

As much as I tried to keep myself busy, I couldn’t stop worrying about things.Worry about getting him into scans and the competency of his doctors.

Worry about how long he would live, his surgery, and the treatments after.

Worry about if cancer would change him, his personality, his ability to love, and how he saw the world. 

Worry about our relationship and if it could hold strong under the stress it would be put under.

Worry that I would miss an important phone call. 

Worry that I couldn’t be as good a mom as I wanted to be.

Worry that I couldn’t be a caregiver.

Worry about what my life would be like as a widow, how I could find the strength and how I could afford to live on my own with my daughter and where home would be.

Worry that if I told anyone that I worried about these things they would judge me.  

The effects of this worry started to show up slowly in unexpected places but it always involved me crying.

It started with sappy commercials, tv shows, and movies. That didn’t feel too alarming. That could happen on a good day. So I wasn’t too worried about it. I figured it was a cathartic way for me to let go of some stress. 

Then it started happening any time things didn’t go right. Break an egg yolk? tears. Forget to do something inconsequential - I’d cry. It started to show up in the morning and at night and I started to become alarmed. 

I would drive to work and cry. I’d have a quiet moment while teaching a yoga class and have to stop myself from crying. 

It was everywhere and it started to worry me. 

So finally I talked to my doctor and after asking me a couple of questions she said.

Charlotte, this is unproductive worry. You have to stop worrying about the things you have no control over. It made me happy to know there was a term for what I was going through but then I asked her what I could do she told me to start meditating and I got pissed!

Not because she told me to meditate but because I was creating and teaching meditation classes during this time. 

I was so stuck in the middle of all this worry while trying to piece together my life and work to help other people through my classes that I didn’t realize I had the tools to help myself all along. 

It was like believing I was going to drown when I was actually only in 2 feet of water. I needed someone to tell me to 

Just

Stand UP

Once I had a way to name what was going on and a tool to use that I already owned I had something different to focus on - myself!

Even though I had meditated before, this time it felt harder. Meditating to work on my worry was difficult to do and I had to be prepared to be uncomfortable. 

When I found myself worrying about something I would stop myself when I noticed it. I would ask myself if I could control what I worried about and then I would sit and breathe without answering that question. After 5-10 minutes of just deep breathing, I would resist what I was worried about and asked myself again if I could control it.

Most often the answer was no. 

Then I would remind myself that worrying about something I had no control over was taking energy I could give to myself and my family. I would try to do my best to distract myself from that worrisome thought instead of fueling it and as hard and uncomfortable that was… it started to work.

After a while, I could spend some time during the day to check in to see if there was a worry I needed to address. Other times, when a worry surfaced I could simply ask myself if it was productive to worry about it or not. Did I have control over what was happening or no?

That’s not to say I didn’t have moments when I found myself crying but it showed up less frequently. I could have a bad moment in a day and then come back to being functional again much quicker. 

The meditation made me more resilient and allowed me to respond to my worries instead of reacting.

We all have the ability to help ourselves, to change our perspective, and to learn how to respond instead of react. 

Sometimes when we feel like we are drowning we need someone to tell us to just stand up

Find more caregiver support and download your "Top 5 Tools for Caregivers" guide at www.loveyourcaregivinglife.com

Today I am sharing with you a caregiver conversation with Robert Pardi. Robert was the caregiver for his wife who had breast cancer. He is now a certified life coach, adjunct professor, international guest speaker, and the author of Chasing Life - The remarkable true story of love, joy, and achievement against all odds. In this episode Robert shares the important lessons he learned while navigating the role of caregiver for his wife and how they both held on to living their lives fully no matter what challenges they faced along the way. 

Show Notes

00:00  Intro

01:09  Robert shares what his life with his wife was like before her cancer diagnosis and how they came about finding out about his wife Desiree’s cancer.

2:16  The role Robert took on as a caregiver for his wife and how he came to become the information holder and gatekeeper of her information.

2:54  Fighting together. All of her treatments. In a state of doing.

3:13  Remission …. Maybe?

3:31  When Robert really felt he became the caregiver and what he felt when he realized he couldn’t fix things. 

4:30  Robert realizes that he had to surrender. Not focus on the end result but only on today. 

5:50  How to identify what your best actually is each day. 

6:22  Nine more years of chemo and life continued for both Robert and his wife. 

6:50  Fixing has nothing to do with caregiving. It is about holding space for the person to be a human and help them live the best quality of life possible.

7:25  Friends and connection during chemo

8:20  People should not be defined by their disease.

8:50  Charlotte shares how she and her husband live with cancer without letting it dictate and define who they are and what they do. 

10:05 First trying to figure out what their life looks like with breast cancer.

10:40 Robert realizes that he needed to let his wife live a life of purpose and not let cancer define them.

11:40 Watching his wife live and succeed made caregiving fulfilling. 

12:00 How they navigated being a couple with cancer.

12:30 Caregiving was the most purposeful thing he could have done.

12:51 Changing the way he views his life, the purpose of life, and what they could get rid of in order to remove the clutter.

13:46 Living a full life vs a long life

14:20 Source of the title of his book.

15:00 “It is only when we value the ordinary moments that we live an extraordinary life”

15:42 You don’t extend death - knowing when life comes to an end.

16:36 How they chased life - lived as fully as they could.

16:53 Parenting as an act of caregiving vs a caregiver of a person who is ill and where hope can be found.

17:15 How they brought hope into their day.

17:44 Charlotte talks about hope and how caregiving is difficult but are still able to enjoy moments of their life. How she and her husband can find levity at the most serious times of their lives.

19:00 How to hold on to your connection and your why. 

19:40 Charlotte’s hope for caregivers to find a way to live a life they love. 

20:11 Obligation or Opportunity - how you can see your life as a caregiver. 

21:00 Possibility to adapt to caregiving and re-evaluating your role in life when you become a caregiver.

21:50 “Beautifully scarred.”

22:54 Remembering to laugh love and enjoy life despite the difficulties of life. 

23:00 Charlotte talks about the importance of understanding and redefining your roles in life - what type of caregiver you will be and create your own team of people who will help you in order to be able to enjoy life.

24:15 Asking for help and the stigma it carries. 

25:00 Robert shares his difficulties as a man and a caregiver. He shares how he finally learned he needed to ask for help he actually felt people saw this as a source of strength from the people around him and that it was his perception that being vulnerable as showing weakness was coming from him.

26:43 Not feeling like the people around him could understand him as a caregiver. The alienation he felt. 

27:50 Vulnerability and surrender as badges of honor.

28:53 How Robert came to the realization that he needed to be able to ask for help.

29:53 Charlotte and Robert talk about how a person’s tribe shifts once they fully step into caregiving. How caregiving changes you as a person and affects your relationship with people in your life. 

32:30 Robert shares how he realizes “I need to shine my light and if the people need sunglasses they’re not the right people for me”

33:00 Becoming a caregiver has a ripple effect on your life and of those around you. Finding out that people you planned on supporting you might leave. 

33:00 Charlotte shares about having to set new boundaries when her husband was diagnosed and only allowing positivity in the house. 

36:00 Robert shares his ideas on being conscious in the way you live your life. 

37:10 Difficulty to make choices when it disrupts the community. Choosing the way you want to live your life. 

37:45 Caregiving is a boot camp for living life lessons that we should wield as a tool while crafting our lives.

38:00 Charlotte shares how caregivers should be highly regarded in their communities as people who also overcome adversity and selflessly give of themselves. She discusses the importance of caregivers advocating for themselves.

39:39 Being proud of the strength you gain as a caregiver.

39:54 Robert discusses how he shared his experience of caregiving.

40:24 Living in a society that finds it difficult and uncomfortable with speaking about death. How caregivers just want to be seen as a person and what they are going through.

42:00 Value placed on things that can be quantified in American society. The softer side of life has little value in American society. Charlotte shares how the softer side of life is what should hold value especially for caregivers and the important place self-care should hold in everyone’s life. 

43:38 Caregivers have no breaks. 

44:40 Life continues and we have to learn how to identify what is really important in our lives.

45:11 Charlotte shares how your values need to change when you become a caregiver and how things need to change from, “I can’t” to “I won’t because it doesn’t fit with my values” and how having boundaries makes decision making much easier because you know why.

46:00 Charlotte shares how sometimes your values have to be challenged for you to understand what they actually are. 

47:17 Robert explains why he decided to write his book. His process and an overview of the message he wanted to make through publishing it.

50:16 How not to let your childhood enthusiasm disappear regardless of what is going on in your life. 

51:31 Robert’s advice for caregivers today.

Find more about Robert at www.loveyourcaregivinglife.com

Have you noticed when you or someone you know buys a new car you start seeing that care everywhere? Or maybe that color care shows up everywhere and even though you know that car or color existed before you never noticed it until then?

That’s how it was with cancer after my husband was diagnosed.

Once we found out he had cancer everything around us had to do with cancer. 

It was as if the universe said - oh, now they know - so now their life feed will be 100% cancer messaging. 

It was everywhere we went to try to relax! 

Every time we watched TV it felt like every commercial was about cancer. 

Cancer treatments

Cancer studies

Cancer marathons

Cancer telethons.

It was cancer season on tv.

Characters on tv shows we liked watching got cancer. 

Famous people seemed to be getting cancer diagnoses left and right.

It felt like it was all around us!

I’m sure it wasn’t any more than it had been before but it was like buying a white car and then only noticing white cars.

I remember going to an action movie, which felt safe to do, there was no mention of cancer so we didn’t even think about that being part of the story but of course it was there.

What I feel was a pivotal moment was when we went to a comedy club and the comedian started telling cancer jokes. There were maybe two jokes but they stung. 

My husband was sitting across from me and we both looked at each other and that was when we could have decided to go into so many directions at that moment.

We could have just started to cry and break down right there. Finally succumbing to what felt like the universe just continuing to throw cancer in our faces. 

We could have gotten indignant and mad and left in the middle of the set in a huff. OR worse yet taken it out on the comedian and heckle him.

We could have not looked at each other and ignored it altogether.

We didn’t do any of that though.

We looked at each other and we laughed.

Not at the comedian. Not at the joke but at the fact that we just couldn’t get away from it. 

It was a shared connection between the two of us. We both communicated through the look on our faces and were just so connected in that moment that we both knew what we needed to do. 

Out of all the emotions I could have thought back at, this the one that has stayed with me is how warm and loved it makes me feel. 

I don’t remember how loud it was or the people we were sitting next to. I vaguely remember the club we were at or who the comedian was. 

What I remember is how good it feels to recollect the connection we had. The look we gave each other that said it all without saying it. The shared experience while coming to the topic from two different angles. At that moment we were in it together equally. It was us against the world that apparently wanted to throw cancer in our faces until something happened.

And it did.

We decided that it wasn’t going to break us. 

That we were going to do this together and somehow we were going to get through to the other side of it. 

Things didn’t get easier after that but it was as if that moment planted a seed of strength in both of us that helped us get through the next phase of his cancer treatment. 

We both chose to be positive that night. There are so many different ways to respond to the world but we knew that at that moment the best way for us to move forward was to find a way through together. 

And after that, cancer stopped showing up everywhere.

For caregiving support and to download your "Top 5 Tools for Caregivers" Guide go to www.loveyourcaregivinglife.com

Those that we care for are people and sometimes we lose sight of that.

No, I get it… you know they’re a person.

But do you always see them for the actual person they are?

I’ve talked about turning off the caregiver switch so you can connect with the person you are caring for. 

Let’s take that one step further to how we regard that person. How do you think of them now that you’ve been caring for them for a while?

Do you still do things with compassion and empathy? Or do you just do them? 

Can you still do things with love when the fatigue sets in?

If not then that is a good thing to know. You can do something with that.

I know that after my husband comes home from surgery I start out his recovery period with a sense of purpose. I might be tired after being away from home and from the stress of him having to have another surgery but I jump right into gear and make sure he has what he needs.

Let’s keep it simple. Out of all the things he needs help with one of the things I always make sure of is that he keeps hydrated. I don’t worry too much about his appetite, especially in the beginning, but I know he needs to drink. I do a variety of different things for him throughout the day bringing up different types of beverages each with a different purpose. One to make sure his electrolytes stay balanced, one that includes a specific type of honey to help his immunity. Cold drinks and hot drinks and everything in between. Just to make sure he is getting what his body needs.

I’m exhausted while I do this but I just do it without a thought and take it to him.

However, a week later I might start getting cranky about it. I might start wishing that I didn’t care so much about if he had something to drink. 

That turns into - why can’t he just come down and get it himself?

Which later turns into a - Here! Make sure you drink it.

And then turns into - He didn’t freaking drink that! Why do I even go through the trouble!

That can dangerously edge towards - screw it… I’m done… I don’t care if he drinks anything today. Let him get dehydrated I don’t care.

I say dangerously because once you get to that point it’s a slippery slope. 

This is the point where it really isn’t about the drink. It’s about the fact that you are tired and overwhelmed and it should be concerning because this is when you’ve already begun to see them more as a person you have to take care of instead of a person you love that needs your help.

I’m not saying that you have to flit around the house cheery and singing and float into the bedroom to deliver to them what they need. But your thoughts - as good as you think you are in hiding them - come out in your actions.

The person you care for knows when you are irritated. It shows in how we speak to them. How we do things. Even the expression on our faces. There are so many subconscious ways we communicate what is going on inside of us that they might not even notice how they know but they get the feeling that something isn’t right. 

 The problem is, if we don’t notice what is happening and realize the path we are taking as a caregiver and as a person who loves the one we are caring for, then we don’t course correct. If we can’t course-correct then our relationship with them starts to suffer. We start to suffer and no one is happy.

I don’t know what your relationship was and is with the person you care for, but I care for my husband because I love him.

That is my why. 

When I start to feel like I am doing things because I have to, when I start procrastinating when I find myself weeping over a pot of tea… 

I know I need a break, I need to reset.

I’ve neglected myself because all I had the energy to do was to take care of him.

I get it. I should always be on top of my self-care because that is what I tell you you need. I could very easily come on here and tell you I don’t have any problem with being on top of my self-care 100% of the time but that would be a load of crap. 

I often struggle with self-care because I am a caregiver. It’s as simple as that and it’s important for you to know.

What is equally important is - because of my self-care I am resilient… I don’t break down as often as I could and I can see the cracks early enough to be able to self-correct and readjust.

When I know I need to reset I do just that. I’ll get out of the house and take a drive to a coffee shop or just around town and back - mostly because at this point I don’t want to interact with other human beings. 

I’ll take a nap in a different part of the house where it’ll be quiet and I can be alone. 

I’ll get on the phone with a friend because I probably haven’t talked to anyone in a few days.

Or I’ll take a nice long hot shower or bath.

And while I’m doing these things I plan on what I’ll do next for myself and when. That way I don’t keep slipping back into that place of resentment and overwhelm.

Because this isn’t about tea.

This is about staying connected with the person I care for because they are a person with feelings too. 

You don’t have to understand what they are feeling and going through. I know that my husband would love to not have cancer and have to have surgeries multiple times a year some years. I know he would love to be able to do things for himself all the time. He would love to not feel like crap and most importantly….

He would like to not feel guilty when I take care of him…

I love him…  and I sometimes forget it’s not all about me.

I forget that it’s easy for me to get into my head, focus on only what needs to be done and worry about the things I have no control over.

I forget about the things that actually matter - Finding beauty in the world when things feel the darkest, allowing a place for hope and faith to reside in me when I want to shut it out, and enjoying my life with my husband no matter what phase of illness and caregiving we are in. 

I get it. You might be thinking - I can’t handle the stress of caregiving, all the tasks I have to perform, all the visits I have to take them to, all the times I have to bathe them 

AND

Remember to love them!

Yes, that’s what I’m saying.

When we stop caring about a person because we are too focused on caring for them we distance ourselves from them. 

Just think about that for a moment.

You spend so much time caring for them that you’ve become overwhelmed with the things you need to do and have lost sight of the actual human you’re caring for. 

Too stressed out about all the doctor’s appointments you have to make today to actually sit next to them for 15 minutes and just chat.

Too worried about the surgery they have to have next week to give them the nice long hug you both really need.

Too overwhelmed to tell them that you love them!

Don’t lose sight of you why. I'm guessing the love you have for this person is why you care for them.

When remembering that they have feelings becomes difficult.

When knowing they could really need a hug or for you to just hold their hand for a moment but decided you are too busy, too tired or can just do it later.

When you yell at them, give them an attitude or make them feel bad about something they need for you to do.

It’s time for you to take a break. Find someone to talk to. Ask for help. 

It means it is time to find a different way of doing things for them and finding ways to do more for yourself. 

It’s all under your control..the way you see your world, the way you react to stress the way you respond to people. That’s all you.

There is a lot you can’t control that is going on in your life.. but these things you can and in turn you can make your loved one feel loved or not or whatever that is in between. 

Remember the person they were before they needed you to care for them. See if you can recollect the way they made you feel. 

That person is still in your life. You might have lost sight of that while doing your best to keep them in the world with you.

We spend so much energy fighting, advocating and researching to find ways to make sure they get the care, the doctors and the treatments they need that we lose sight of the fact that 

They 

Simply

Just

Need

Us!

Find more caregiving support and download your "Top 5 Tools for Caregivers" Guide at www.loveyourcaregivinglife.com

You can do this…

I know you feel like you just want to run away…

You want to hide from the world….

You want to wake up and have it all be a bad dream.

But you realize you’re living it.

Like a bad groundhogs day loop where every morning you forget and after stepping out of bed you remember and it brings you to your knees.

All you want to do is

Cry

Yell

Lash out

Get a second opinion….

But you know down deep inside - this is it!

You can’t change it.

You can’t un-hear that diagnosis.

The I’m sorries.

Maybe if you don’t tell anyone it won’t be real. Maybe if the words never leave your mouth your brain won’t have to hear it because saying it will only snap you out of the 

FOG 

You can’t adjust to the fact that yesterday you didn’t even notice how good your life was.

No one warned you that yesterday was the last day of who you were. 

Yesterday you might have worries about soothing but now you can’t even remember what it was because it doesn’t mean shit!

Your mind hasn’t had the time to adjust and it keeps wanting to go to yesterday. Today hurts too much to think about and tomorrow is unthinkable. 

You tell them that they can’t do this to you. They are supposed to be here for forever. Life isn’t fair why can’t it be you instead? You’re going to fight this. They have to be wrong…

But when you look into their eyes you know you’re wrong. 

They know this is real.

So you shut down… 

Maybe for an hour or for days. You shut down and you roll yourself into a little ball and hope that the longer you stay there…

The longer you don’t have to deal with your world…

The longer you don’t have to look into their eyes…

The more of a chance there is that you’ll wake up from this bad dream and find out it isn’t real and you can go back to worrying about the things that are insignificant.

While you’re there you tell yourself that you can’t do this…

It’s as if you are standing at the edge of a cliff and you’ve been told to jump. To have faith that somehow you will make it to the ground alive. Maybe a little bruised and scratched up - but alive. 

But you don’t believe it.

You don’t believe that you can do this. There’s no way you can watch them suffer through treatments and surgeries.

There’s no way you can take care of them.

You just can’t!

You can’t be strong for them because you aren’t strong enough. 

You aren’t the one in the relationship who holds it all together.

You can’t….

I’m here to tell you that you can.

You are stronger than you know.

No, this isn’t fair.

Yes… your life is now changed forever. 

It doesn’t matter because you’ve dealt with changes before - maybe a lot smaller - but you’ve adapted.

You can because you love them.

You don’t have to like it. Accepting that they need you doesn’t mean you are saying this is ok…

You’re saying 

I refuse to give up on life.

I refuse to give up on you

I refuse to give up on us.

Sure you may feel weak right now.

This may feel way too big for you.

You aren’t prepared for this.

Remember that the big things that happen in life are usually a surprise - good or bad - and we aren’t usually prepared for them.

So…

Take one last moment to 

Cry… and Yell

And then tell yourself 

I CAN DO THIS!

I WILL DO THIS!

Because I love them.

Because they need me.

Because ...

I would want the same for myself and I am able to be there. 

You can do this…

I know you can.

I believe in you…

Find more caregiving support at www.loveyourcaregivinglife.com and download your "Top 5 Tools for Caregivers" PDF