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Advocacy

As a caregiver it’s important to know what’s going on in your community and the caregiver community at large. There are many issues that caregivers face. Knowing your rights and what protections exist are key to being an effective advocate for your loved ones. When you are armed with information, you will be able receive and provide the best support for those in your care. The Advocacy section will alert you to changes in legislation and tips on how to help you navigate the process.

Happy New Year!

We have been gifted with the ability to begin again. Some of you may have experienced some grief – grieving a loss of a loved one, mourning a change or experienced unexpected challenges in your health, life, and/or finances.
But guess what, it may not seem like it, but I have to repeat it… we have been given the gift to begin again and move forward. It’s ok to feel what we feel but we must continue.

I invite you to join me on this journey to Be Well & Be Swell. It is not a static thing. It is an ongoing thing. In life there will be ebbs & flows ups and downs. Truth be told – we are not immune to any of it. I fell into a rut as I was side tracked in 2019 with an unexpected health issue but I decided to get up and begin again.

Whether you are caring for your Mom or Dad, sibling, spouse, son or daughter or other family member and even just looking after yourself…. we can do it together. We are not meant to move about on this journey alone.

I’m here to share my experiences as we navigate this caregiving journey and serve with more E.A.S.E.

One of the goal of BeWellBeSwell.Com for this upcoming year is to help you to be an EMPOWERED ADVOCATE by sharing tools and resources that SIMPLIFY your life through EDUCATION.

So jump back in with me! We can explore, learn and move with momentum together building the life we desire during this new decade!

Be Well,

Denise

When the caregiver becomes the patient: Where am I going?

Yes folks – We left off as I was about to discuss my particular ailment. ( If you missed it, click here for Part I.) I have developed – white coat syndrome. What is this you might ask?

White coat hypertension, more commonly known as white coat syndrome, is a phenomenon in which people exhibit a blood pressure level above the normal range, in a clinical setting, though they do not exhibit it in other settings. It is believed that the phenomenon is due to anxiety experienced during a clinic visit.]

Since when did this become my issue? Good question- now I have something else to worry about. I say to myself, “They are going to think I’m sick!! Next think you know I’ll have to go on meds and be handed a prescription! Ok snap out of it Denise, you’re fine, it’s just nerves!”

When the nerves are running high and anxiety is at its peak – you worry what will the doctor say? I try to calm down and slow my breath because my heartbeat is rapid. I appear visibly calm – because I am great under pressure -but on the inside I am so nervous. I hear Ms. Bampoe – Ok I guess it’s my turn. I walk down the hall to the next available room set up just for me and before I prepare to disrobe, the nurse asks for me to roll up my sleeve so she can take my blood pressure – anxiety sets in. She takes it and its sky high – ok this is not normal and if it were, I wouldn’t be able to sit there and function. It’s not normal but what’s normal these days – I’m under a lot of stress -actively caregiving, managing a household, work and now this unexpected event manifests itself and you want me to calm down and take it easy??? I can’t calm down; but I need to. It won’t change the outcome. So there’s the diagnosis and fears compound. The doctor leaves the room and you wait for results and each sound as you sit on the exam room table is filled with trepidation. Each squeak…is that the doctor? What will she say? More tests? More scans? A procedure?

Geez. It was then that I realize that I’m out of control. I’m not dealing with stress as well as I thought, nor am I fearless.

And all that I feared was confirmed it was – more tests, another scan ending with a procedure.

This is what my parents felt as I shuffled them off to doctor’s visits and to specialists and procedures. It’s nothing like it until it’s you that is personally going through it. This is why time, healing, and reflection is important. It’s key to do this not only when you are sick but exercise self-care while you are well. It will equip you to handle things a little bit better when things get off track. I’ve learned that things eventually get off track but we, as caregivers, are all resilient beings and are more than capable of rebounding if we allow ourselves the time.

So, folks that’s where I have been. I’ve been a patient dealing with all the things – the emotions, vulnerability, diagnosis and fears and just coping and trying to juggle getting back to a normal life while balancing attempting to keep stress to a minimum while not succumbing to my fears. I realize this is what my Dad or my Mom may have felt. While I may have been able to put it into words, my parents may not have been it is a gift to have had those encounters with them and I can call upon that same experience to help myself. Maybe one day I’d share more specific details but until then I am well and essentially I am back!

I’ve been through my own caregiving journey on the other side of the hospital gown. It’s not at all pleasant or pretty but at times these things are very necessary. These set backs come to show you how much you can endure – you learn how strong you are and God reminds you of your purpose. In my own recent experience, I’m reminded of the tools that I created to help me to navigate caring for both parents simultaneously. How to keep track of history, diagnosis, records and dealing with doctors and makings sure quality of care is maintained. However, instead I was in the hotseat and had to rely on hubby to help me out in this situation. For those who have never had to navigate this type of journey before – don’t fret that’s why I am here. If you want to learn more about how I can be of service to you, start here.

I look forward to serving you and helping make your life just a little bit easier while you are caring for others or perhaps caring for yourself.

Be Well,

Denise

When the caregiver becomes the patient: Where have I been?

The first quarter of the year is done and we’re midway through the second quarter. You may have been wondering where I’ve been. Well the tables had turned and I – that’s right …lil ‘ol me became the patient -the care recipient, the caregivee. So what happened? While I won’t go into the specifics of my condition, I will share a snippet of my journey. You haven’t seen me around as I needed to take some much needed self-care moments to heal physically and now I’ve come to realize that I needed to heal emotionally. As a caregiver, you jump into the role of superwoman (or superguy if you’re a male who might be reading this). You zip here and there often to help everyone else. However, you never really slow down because you have work, activities, doctor visits, in between spending time to persuade you Mom or Dad to eat that piece of broccoli which is healthy when they’d prefer to sneak a snickers bar. While you are consumed with doing all of these things, you also never really consider that you may be on the other side of the hospital bed on the receiving end of care.

Being Vulnerable

When I think about this, lots of emotions bubble up to the surface. After the initial shock of the diagnosis wore off and I calmed down… I asked myself the typical questions that anyone would in this situation – Why? Why me? Why now? Only this time as the patient, I was on the other side of the table -the side where the doctors are asking you questions and giving you an unexpected diagnosis. How do you feel? I felt scared and also felt like this is not really happening. Am I in an alternate universe? Am I going to wake up and it will be confirmed that this is all a mistake? Yes, that’s what it is! No – but in actually it was not and won’t ever be.

Now it was my turn to fill out the pages of paperwork at the doctor’s office, pre-testing and of course the day of the procedure. Of course, now I’m suffering small bouts of amnesia – what is my family medical history? When was the last time I experienced this or that? Gosh – I can’t remember. Is this how my parents felt all those times that I filled their paperwork out in the doctor’s waiting room? It is then I want to shake myself and say snap out of it Denise! You know all of this stuff. And then I drew a blank.. and this is when I recall…remember the toolkit.. the one you created for your parents with all the info on them, you should have already done this for yourself!! Dang! I knew there was something I had to do!! It’s too late now. I promise myself to get to this right away after I get through this.

It’s my turn to be under the microscope and now I’m forced to ask for help from others. Now is not the time to be superwoman. As I sit in the waiting room filling out paperwork, I couldn’t help but feel anxious. I’ve recently learned that I have developed this particular ailment….

Stay tuned for next week’s post as I continue my story….

How Can You Make Sure You Are at Your Best While Caregiving?

There are over 44 million of us across the nation who care for the family members and friends who are chronically ill, elderly, or who have a disability. With caregiving comes with challenges but there are also great joys with being able to serve and support a loved one. I especially want to express my gratitude for the work that you do each day to ensure your loved one is able to live in their home and community.

How can you make sure you are at your best during caregiving? One way is to make sure that you are meeting your needs and utilizing tools and resources to help yourself. Let me introduce you to the concept of Be Well Be Swell.

What is Be Well Be Swell? It’s a lifestyle. It’s a concept – something that we all must adapt to is to begin to lead a life of service with joy even in the midst of challenge Why we must adapt to this? it just makes it so much easier to move through life if you are moving on a trajectory filled with joy. When you are moving with joy, it can make things a little bit easier. I find myself sometimes just mulling over things in the past that I have not done. To tell you the truth for the past few months I had been feeling like I’ve been in a cloud or a fog if you will. You know what we get the chance to start fresh brand new every single day.

What I am challenging myself to do now is to #DOITNOW. And also, not only do it now, but take it in small bites. I have a tendency to try to jump in there and try to complete everything. If you’re trying to care for somebody else and you have a family and you have all this stuff going on in your life including work – it is hard to complete all of these tasks. Now I’m finding it a bit more easier to break stuff down and do it in smaller bits. Set a goal and say I’m going to look to doing this a little bit each day, or once a week, or once a month, and then it doesn’t become as overwhelming. This allows my attitude to be better because I’m not as stressed and pressed and frustrated because I haven’t gotten that thing done. I’m going to encourage you to think in terms of “doing it now”.

What is it that you have put off? Is it getting those documents that you need – that power of attorney document- sitting down with your accountant or maybe having that one doctor’s appointment. All of these things are important. One day you are going to wake up and say OMG, I got to get all of this stuff done!! And Now it’s almost the end of the year and I have to finish all of these things. What’s going to happen is that you’re going to feel overwhelmed. Overexcited and then you’re going feel like OMG I can’t do this. Then what happens is that you come to a full stop. You know that I am sooo right. Do you know how I know that I’m right.. it’s because I do it myself. I found that I have been beating myself up for not getting things done. However, there’s a lot of things on my plate. I’m sure that there is a lot on yours too. I keep saying that as a caregiver I wear so many hats – I’m a lawyer, a doctor, a nurse, a chef and all of these things are titles that I have adapted and have done so to accommodate and be in service to other people around me and you just have to stop! You have to say hey.. I”m done for today. I need to go to sleep. I need to get some rest. If you don’t you’re going to find yourself in an exhausted state. If you don’t you’re not going to be able to help anyone. You’ll end up being so empty and tired and won’t have the energy to do anything for anybody else.

I just want to remind you that it’s ok to say no. It’s ok to take a break. It’s ok to put some things off but don’t do it for too long otherwise you’re going to find yourself feeling stressed and pressed to try and catch up on the things that maybe could have been done a little bit sooner. Here’s what I want you to do – erase these words from your vocabulary – should of, could of, & would of. I know this can be hard but to be honest with you, I’m really talking to myself. As of late, I really had to sit back and tell myself this same thing. Sometimes it’s a daily thing that I have to remind myself to take my time, pace it, and get one focus. Take a break and don’t just work through the entire time – stop and take your time to just do a few things. Pick out the most important thing for the day – maybe one or two things or at the max three but that could be pushing it. Say hey I’m going to work on these things today for myself (which may of course be on top of your regular responsibilities. This is why it becomes important to focus on a few things for yourself -carve out some time and break it up into small bites. Maybe tomorrow pick a different category and move from there. Otherwise, you’ll be facing burn out and then comes resentment because you have things that you have to do for others. This often happens because you didn’t take the time out to do things that are important to you. I just want to remind you that these are things that if you do them and especially over time, you’ll reap the benefits and you’ll see that things get done slowly if you take small bites. For the rest of this month I want to encourage you to think of ways that you can be your best at caregiving. What’s one thing that you can do today? I’ll give you one to start – check out the prep guide and get started today!

Join Me – Upcoming Podcast Episode Coming Soon – November 9th

Hi folks,

Can you say excited????

I went to a conference this past August and met Michele Berard. It was in between sessions and I introduced myself and we just started chatting like we had known each other. It was so cool. I shared a little bit of my story as a caregiver and my mission to help caregivers with the tools and resources so they can be the best advocate for their loved ones. After hearing my story, she said she asked if I would like to be on her show!! I graciously accepted and here we are.

So stay tuned!

Check back on the 9th to listen in!