Welcome to Caregiver Friday!
I’ve been thinking about all the responsibilities that you, a caregiver, take on when someone you love is diagnosed with a chronic or other life-altering illness. It’s mind-boggling the amount of stress involved (thus the term caregiver stress) and the commitment to your loved one to help them through this challenging time in their life. When we think about caregiving it’s easy to believe that once you begin this journey it’s never-ending, but that’s not the care. The obvious ending of the caregiver role is if your loved one dies, but there is another time when this may be the case; when your loved one is doing better.
This last hiatus in caregiving would apply to those patients who are in remission and I’m not just talking about cancer. If the symptoms and disease progression are at a standstill then it may not require you to devote so much time to caregiving. I began thinking about this yesterday when I went to the doctor and we had our usual discussion about my health. I’m in an in-between state of my bodies rhythm where it could go either way depending on the next steps by me, the new medication I was prescribed and how my body reacts. Up until recently things have been smooth sailing, so is the case for many patients, and then there’s a precipitating event require the support of you, a caregiver.
How do you feel about stepping in and out of the caregiver role? Is it easier to be in caregiver mode all the time, or are you comfortable stepping in and out of the role as needed? It’s an interesting question, and a question that you may need to wrestle with depending on the diagnosis and disease progression of the one you love. It can be confusing to know when and where you need to step in as a caregiver unless you and the patient have well-defined parameters and a solid foundation for your communication.
This is one of the reasons that it’s so important for caregivers to have a support system for themselves. The possible revolving door type of caregiving is becoming more and more prominent as new medical treatments are coming on the market helping patients on the journey to health and healing become better or well.
How do you feel about this type of caregiving? It would help all of us if you would share your coping strategies, simply hit the comment button and share your thoughts or you can always e-mail me at firstname.lastname@example.org.
Welcome to Caregiver Friday!!
We’ve been exploring the roles and characteristics of caregivers. Did you realize how diverse and complex you are as a caregiver? It’s like peeling back the layers of an onion. Caregiving often reveals parts of yourself you never knew existed or you knew were there but haven’t been conscious for some time. Bringing these characteristics to the foreground allows you to acknowledge, validate, and celebrate your gifts, talents, and attributes. It’s often unfortunate that many don’t realize these gifts until someone becomes ill and you step into the caregiver role; but you’re doing it now and that’s what counts.
E is for Egoless
We live in a world that if often focused on the individual. We’re socialized to look out for number one and do whatever it takes to come out on top. I took a training once where someone got up and said, “You know what EGO stands for? It stands for Edging God Out”. I took that to heart and have carefully considered when my ego was getting in the way of making good decisions and proper judgments on any and all situations. It’s difficult to do and takes a lot of practice, but it’s possible.
Caregiving seems to allow you to abandon the ego because caregiving, unless you’re a martyr, isn’t about you. It’s not about looking good to others. It’s not about being the best, the brightest, or the most successful. Caregiving is a heartfelt and heart driven experience. Unless you’re a professional caregiver (and some are driven strictly by the heart) you’re devotion and commitment to the caregiving process is egoless. You, as a caregiver, are committed to helping, assisting, and partnering with someone who is ill or injured because you have a relationships and it’s part of the moral contract. It’s a heart contract.
I know it’s difficult to abandon the ego while caregiving, but you shouldn’t think about it as abandoning. Actually, I hope your ego is expanding within your own heart and soul. As you have new experiences it will serve as a catalyst and stir up emotions, thoughts, and ideas in your mind and your soul. I hope you take these opportunities to expand who you are as a person allowing the caregiving experience to be a springboard for your own personal expansion.
I’d love to hear about how of if you experience egolessness and the impact it has on your caregiving experience.
Welcome to Caregiver Friday!!!
I’ve been thinking a lot about the caregiver experience over the past couple of weeks. The literature focuses a lot on caregiver stress and burnout looking for the reasons they occur and how to avert those challenges. I’ve been thinking about caregiver stress on a more internal, depth level of meaning. This isn’t about how experience broadens your horizons or your innate ability to show compassion gets punctuated during these times, but more pointedly, how are you doing and how do you get from day-to-day?
It would be wonderful if the person you’re caring for asked how you’re getting through the day, but I think that’s a bit much to ask. That’s why when I speak to caregivers, both personal and professional caregivers I always start by saying “thank you”. I take the proxy for all the patients in the world and share my gratitude since it is so often overlooked.
I’d like to take it one step further today and simply ask, “How are you doing?” I’m not asking you about how are you coping, but how is your soul holding up with these new responsibilities. I’m wondering how in times when your personal resources are continuously depleted, you get the opportunity to replenish your inner storage tanks to take on another day.
I don’t want this question to be like the exchanges we have on the street when we see someone we know and they ask, “how are you doing?” and you answer “fine” because that’s the appropriate response. I really want to know how you’re doing because you matter, you count, and your well-being is critical to the equation of universal health and healing.
This isn’t grandiose, but a fact. We’re all interconnected and that connection means that when you’re suffering on some level we’re all suffering. I’d be honored and grateful if you’d share “how you’re doing? so we can diffuse the madness, come up with solutions for wholeness and show the world that your experience is part of the bigger picture, the one where we all matter to one another.
Welcome to Caregiver Friday!!
Everyone deserves a break in their routine. When caring for someone who is sick or injured, although you are doing it from a place of love, it is like a job. Do you take a break? What do you do on when you don’t have to be on high alert or within reach of the loved one you’re caring for? My experience is that getting you, the caregiver, to take a break is a difficult task. I’m not sure if caregivers feel guilty for taking the time or they feel it’s a mark on their “perfect” record in life, but it’s hazardous to your health.
I’ll tell you the personal story from my own family to make this point. My father-in-law (who died this past March) had a massive stroke following open heart surgery. If he hadn’t been in the Intensive Care Unit (ICU) he would have died, but immediate medical attention and technology saved his life. He was disabled after this and my mother-in-law became his full-time caregiver. Over the years he began to decline and you could see the toll it was taking on her health. I recommended that the three kids get together and hire someone to come in so that she could go out without a care in the world and try to regain some aspects of a “normal” life. The respite worker began coming a couple of times a week and my mother-in-law sat with them. She didn’t even leave for a cup of coffee, to read a book, or any other enjoyable activity. It was only a month or two before the respite worker was gone.
You may feel that the world around you is judgmental, but I don’t think that’s the case. I believe it’s the committee in your head that is guiding the actions of caregivers and that committee needs some fine tuning. Respite is that window of opportunity that restores sanity. I have a friend who has two sons who are both disabled. The boys (now 19 and 23) are both enrolled in a program that takes them to a downtown hotel overnight and the group attends some type of event in the city. It gives their mother and step-dad time to shed their caregiver roles and have fun without having to take into account the special needs of the kids.
Respite care is not about abandoning the person you love; it’s about making sure you don’t abandon yourself. If you’re not healthy on the physical, emotional and spiritual levels you’ll have a much tougher time executing your role as a caregiver. Give yourself the benefit of respite care and see how it enhances your life, the life of the person you’re caring for, and how much more effective you become as a caregiver.
Welcome to Caregiver Friday!
How is it that we all have opinions about everything even if we’ve never had the experience we have an opinion about? We self-appoint ourselves as experts as it pertains to everything believing that our opinions will change the world. Well I have news for you, I learned a very important lesson a couple of years ago that I want to share with you.
I was enrolled in a class on “Advanced Spiritual Business Development”. I didn’t get very much from the class, but I did hear one thing that stands out head and shoulders above all the other information…”Speak about what you’ve earned the right to speak about”. Now if you’re a caregiver/wellness partner I’m preaching to the choir. Maybe the real audience for this article are the many friends, family and colleagues who mean well but want to “share” with you how best to care or partner with your loved one.
If it were directly following the diagnosis and you’re in shock the information, although overwhelming, may be helpful. Once the shock wears off the opinions that try and persuade you about the “right” way to be a caregiver can and is often very annoying. So what’s the problem? The problem is that the advice is often given out of love (notice I said often, there are those times when people just want to be a pain in the a–), so how do you cut them off from helping?
As a caregiver/wellness partner I hope you’ll come to understand and accept that you can’t be all things to all people. The only actions and opinions that really count are those between you and the person you’re caring for, the others are miscellaneous noise that distract you from your very important mission.
Understand that you can’t please all of the people all of the time. In fact, understand that you can’t please most or even some of the people some of the time so stop trying. You have a covenant with the person you’re caring for that is based on history, love, and compassion. You’ve reached certain agreements with the person you’re supporting so that you can be of the greatest service while still honoring your own humanity.
No one said caregiving was going to be easy, but don’t make it more difficult by taking any or all of the criticism to heart. Take it as a show of concern and let it fly out the window, up to the sky and into the atmosphere. Who knows maybe it will land on someone who really needs it!
Welcome to Caregiver Friday!!!
When dealing with the medical community does it ever feel like a day at the zoo? That visit to the zoo may continue at home when the pink elephant is sitting in your living room. Okay maybe it’s not a pink elephant; it could possibly be an 800lb gorilla. The fact of the matter is that there are things that you want or need to discuss but you hesitate because of fear. The fear is about offending the care recipient, concerned that your concerns are doubt or pessimism when they are actually the touchstone of reality.
As a wellness partner you have a unique perspective. You see the impact of the patient’s treatment or reaction to their diagnosis from a bird’s eye view. Your view is more global. You have the ability to take your 360 degree view and come up with valuable conclusions. The viewpoint you develop is crucial to the patient’s welfare. You’re ability to observe and report is a duty not just a possibility and that at times makes you unpopular with the patient. How many times has the patient either avoided the doctor’s question or downplayed the severity of the question only to have you, the wellness partner, bring the focus back on the reality of the situation.
We all have the need to look good in public, not just physically, but emotionally and spiritually as well. As a wellness partner you are the barometer and that’s a difficult position to be in so this increases the need to get rid of the pink elephant in the room and discuss your concerns. Creating an agreement giving you the flexibility and space to speak your truth will honor your role as a caregiver/wellness partner and will preserve your health. Do you have any idea the havoc wreaked by holding your feelings in your body?
If you need a third party to help navigate this arena don’t hesitate. Find a therapist, a coach or a spiritual director who can be neutral and allow all sides of the dialogue to be heard. Creating a safe space to express yourself is critical to your role as a caregiver. Denying the truth will not only cause you stress, and we know caregiver stress is a huge issue, but stifling your voice leaves you feeling powerless. You need to be an equal partner in the process…it’s part of the wellness plan!
To help you navigate the caregiving process easier I’ve added a FREE e-course on the Surviving Strong website which you can access by clicking on the link in the righthand column. My hope is to find ways to serve the caregiving community.
Welcome to Caregiver Friday!
I’ve been reading a lot of accounts of families providing care for a loved one with an illness or injury. The world is filled with unanswerable questions so it’s not uncommon to be stuck in the role of bystander. However, bystanders are usually those who see an event and choose to stand back, stay uninvolved and certainly keep both their physical and emotional distance. Is that even possible?
The one factor most notable about caregivers is that you stand by your loved one. You understand the nuanaces that create the wellness partner dynamic. It’s like a political campaign where you endorse a candidate. You throw your support behind your candidate for wellness; that’s a huge deal. Obviously you can’t campaign for wellness (although an interesting idea), but endorsing someone means having faith in their abilities to return to wellness or to be resilient in their process. We know that not everyone will get better, but we also know that anyone can experience healing and that’s the biggest thing you as a caregiver can lobby for in the illness arena.
Bystanders stand back far enough so they won’t “get in the way”, but when you “stand by” your loved one you help guide the ship. Since I seem to be using political analogies I should keep the ball rolling. When you stand by your loved one you become the “chief of staff” for the person who are providing care. You’re the highest ranking member in the patient’s health cabinet. Your opinion counts…it counts big. You have a unique perspective that needs to be considered if the partnership is going to work and trust me…it is a partnership.
The role your choose is your in fact a choice unlike the patient who doesn’t get to opt-out of their illness. I hope that you honor the choices you make because they are quite impactful. When you have the opportunity to take a stand your voice needs to be strong and loud because it may have to be heard above the roar of the emotional negative committee in the patient’s head. I know it sounds like an insurmountable task, but I know you’re up to it.
Are you a bystander or do you stand by the patient? How do you know the difference in the role you choose? Share your “stand by” experience and how it makes a difference in the world.
Welcome to Caregiver Friday!
Can we be taught to care? Aside from parenting is caregiving something we know or something we’re taught? If we think about nature, we know that animals pick their mates for different reasons. The females pick males they think will be good protectors and providers. Males pick females they think will give birth to healthy offspring continuing their genetic lineage. But what about things that parents teach their children…how do they know when they’ve done their job?
I mentioned earlier in the week that I spent a week with my sister-in-law and her kids helping her while her husband was out-of-town on business. The kink in the armor is that the day before I arrived one of my nieces was hospitalized for an eating disorder. Knowing that the hospitalization was looming was the reason for my trip, because everyone needs help, especially in times of need. My role was to be a safety net for my sister-in-law throughout the week. To close the gaps in schedules, meals and bedtime; allowing her to be a great mom to all the kids, including all the daily visits to the hospital.
During the week I received a call from my dad and I didn’t get a chance to speak with him until I returned home. He simply wanted to thank me for taking care of my family. He wanted to know that he appreciated the compassion and commitment to my family. I was honored, humbled and joyful because he was thanking me for what he and my mother taught me…family first. My parents taught me that it’s easy to put words in the air, but it’s the actions that follow that determine your character.
I’ve had the opportunity this year to see my parents in action. My uncle was dying of melanoma in May of 2008. My dad talked to my uncle frequently but it was the day my aunt called and said he’s taken a turn for the worse that my parents jumped into action. My parents got on the next flight to be with my uncle and aunt…that’s what family does. What I realized when my father blessed me with his call he was saying to me, the lessons stuck. I had once again demonstrated the assimilation of caregiving into my soul. I’ve always been the caregiver, but I think it’s also one of my parent’s greatest legacies. It’s one of the things being one of their sons that I’m most proud of…the lesson that family comes first, actions speak louder than words and no one should go through strife alone. Love and connection are the two greatest capacities we hold as human beings and there is strength in numbers.
So is it nature or nurture? I think it’s a bit of both. I believe that every family has a culture and this is mine. What’s your family culture? Is your caregiving knowledge and beliefs innate or learned? What activates your caregiving tendencies?
Welcome to Caregiver Friday!
We’ve all heard the phrase “care for the caregiver”. I guess it could become a never ending chain of care since once someone steps in to “care for the caregiver” they themselves become a caregiver. It’s clear that when providing care for someone and making lots of decisions you have to pick your battles. However, it’s really important that you don’t give up ground you’ve worked so hard to gain. There is a dance of seduction that the caregiver gets drawn to because everyone around you knows that you’re a bit compromised. It’s this compromise that can lead you into feelings of despair and hopelessness, so let’s cut it off at the pass.
Yesterday’s post focused on creating boundaries and structure for life’s messes. Creating your own boundaries is a turf battle. You’ve obtained certain strengths and created a certain level of calm and then someone tries to throw you off balance. The biggest tactic those around you will use is either guilt or emotional upheaval. We are all suckers when someone starts crying, so you have to decide if it’s genuine or a manipulation. Once someone knows the plays in your playbook it’s easy to undercut your authority.
Although much of these thoughts are universal; it’s a big factor if you’re caring for a child with an illness. We all have a special spot in our hearts for children, but pushing the boundaries isn’t going to serve them and it certainly isn’t going to be in your best interests. We do have to remember that a child that has an ill may have siblings and these siblings may be suffering silently or not so silently if they are acting out. The structure you can provide is the container that lets them know they are safe. Safety for kids is a key factor in coping with difficult family decisions.
There are no clear cut answers because every family is different. Adults have to provide safety and security for everyone in the family, not just the person who needs care. When people act out, whether they be kids or adults its the equivalent of speaking. Their actions are their vocabulary and if you’re not fluent is their actions you may be missing a lot of the conversation. The key is to set rules and get everyone speaking the same language. If you need to bring the family to therapy do it. There is no time to waste because the symptoms will only get worse and you, the caregiver will become so depeleted that your own physical, emotional and spiritual defenses will succumb to the pressure.
Welcome to Caregiver Friday!
All we hear on the news is about the stimulus package. I guess that’s a good thing since every day more and more corporations are announcing layoffs leaving the American public dazed and confused. The Congress is debating all the options looking for what each party feels is the best solution. This week the mayors of many cities descended on Washington to bring their ideas for infrastructure projects hoping to claim some of the 900 billion dollar package.
The idea that it’s not only the country that has an infrastructure but that each one of us has an infrastructure has to be reviewed. It shouldn’t be a surprise that each of us has a foundation that keeps our bodies, minds and spirits moving at all times. Our relationships are living entities and they too have an infrastructure. The infrastructure of our relationships is love, compassion, friendship, trust and probably a host of other foundation attributes.
As a caregiver/wellness partner shoring up your relationship infrastructure can be soothing, amusing, inspiring and re-affirming. As we’re in the midst of the winter, it’s a great time for you and your loved ones (not only significant others, but family and friends) to create a pocket of warmth and nurturance. There’s a reason that bears hibernate in caves; it’s safe, protected from the elements and there is a reassurance when you’re in a space that feels like a womb.
It’s not uncommon to allow the infrastructure of our relationships to erode over time. Like water on a rock, after a while the responsibilities of caregiving can be tiresome so it’s important to create a preservation plan. This isn’t about conducting a life review, but creating opportunities to fortify what constitutes your relationship infrastructure.
What are some of your personal infrastructure components? Is there one in particular that has been taking a beating and is wearing thin? What’s one thing you can do with the person you’re caring for to regenerate or renew your relationship infrastructure? How might this help ease the tension or the pressure you feel as a caregiver? I’d love to hear your personal stimulus plan and how reinforcing your relationship infrastructure plays a part in reconnecting on a more peaceful level.