Dealing with a Diagnosis of Chronic Illness

Dealing with a Diagnosis of Chronic Illness

By Robert M. Oliva, ND, LMSW

 

Having a loved one diagnosed with a serious chronic illness can have far-reaching effects on the patient and on every member of the caregiver’s family. A loved one’s illness can descend like a tidal wave filled with shock, anger, fear, resentment, worry, and frustration.

The ill family member may be emotionally shocked at the diagnosis and experience shame, fear, guilt, or intense denial. Grief is very commonly experienced by the newly diagnosed. This may coincide with a loss of physical mobility, depression, and a loss of personal confidence and integrity. Relationships may suffer due to both physical incapacity and emotional distress. The sufferer may no longer be able to participate in the normal network of friends and activities that were taken for granted prior to the diagnosis. If negative life events, stresses, and depression preceded the diagnosis, the chances of more severe depression occurring are very high.

The same may be said for caregivers and their families. When a family member is ill the entire family suffers. The caregiver and family can become physically and mentally exhausted, have bouts of sadness and helplessness, experience lowered immunity to colds and flu, become impatient with the ill family member and with each other. Family relationships may falter, children may exhibit problem behaviors, and frustrations with spouses may become damaging.

 

A Personal Note

Recently, I received a phone call from my mom’s neighbor. She let me know that mom had fallen and been taken to the hospital. The call started a two-month odyssey for me and my wife. Since my mom lives alone in another state, other family members, for various reasons, were unable to make the trip.

I was flooded with questions as to the severity of the fall, what would it mean for her ability to be independent, would she recover, and what would it mean for us. As it turns out, we had to spend two months as 24/7 caregivers in another state having left behind our family and friends.

When we arrived, my mom was much weaker and dependent than I had imagined. Shopping had to be done, doctors’ visits made, occupational and physical therapy instituted, meals prepared, emotional support given along with the uncertainty as to whether mom would once again be independent.

Even connecting with our absent family members and friends demanded establishing a network of communications that enabled all to keep informed and be supportive.

 

Coping with Chronic Illness

Coping with chronic illness is a reciprocal endeavor for every member of the family. The ill person, the caregiver, and the caregiver family form an interlocking system that must redefine itself to meet the challenge.

When navigating the consequences of a diagnosis, the following suggestions may prove helpful for all involved:

  • Confront the illness. Facing the diagnosis is the best long-term strategy for the person diagnosed as well as for the caregivers. Denial, as much as it is tempting, does not work.

 

  • Seek out social support. Social support can help everyone cope with the challenge of chronic illness. Creating a strong social network that is dependable makes a world of difference when the going gets tough. A haphazard approach and one isolated from necessary support structures, groups, and friends can lead to greater stress, depression, and burnout. Communicating with support networks can help the family more effectively address the circumstances it faces as the illness progresses.

 

  • Develop a plan of action. Communication with family, friends, physicians, social workers, and support personnel such as physical and occupational therapists enables the illness to be faced actively. Getting to know what to expect physically and emotionally from the disease process offers a greater sense of control.

 

  • Minimize unnecessary obligations. Stick with what you can handle.

 

  • Seek professional help. Managing a medical diagnosis can be hard on everyone. Psychological assistance can be accessed through the APA’s Psychologist Locator.

 

Conclusion

The diagnosis of a chronic illness reverberates throughout the family. By accepting chronic disease for what it is, there may be less need to hide our fears and apprehensions. Through shared effort, greater familial resilience and patience may strengthen tattered bonds. Accepting the pain and uncertainty of illness may kindle a greater capacity to move forward. Hopefully, this leads to less stress and conflict, while providing patient and family the emotional sustenance needed during trying times.

Chronic illness is never easy. Sharing the struggle together may help fashion the hope that carries us through.

 

 

Dr. Robert M. Oliva is a New York State licensed Master Social Worker, a traditional Naturopath, a certified Holistic Health Practitioner and a health and fitness writer. He is a member of the American Naturopathic Medical Association, the American Association of Drugless Practitioners and the National Association of Social Workers. Dr. Oliva is a former Adjunct Assistant Professor of Sociology at Brooklyn College (CUNY). He can be contacted at: healingactions@gmail.com.

 

 

Six Ways To Make This The Best Spring Ever

Six Ways To Make This The Best Spring Ever

Introduction

 

Congratulations overwhelmed caregivers! You made it through yet another winter!

 

Days of navigating your loved ones through sleet and snow in order to get them to their doctors’ appointments are slowly fading into memory. Soon flowers will be in bloom; overcoats, boots, and scarves will be tucked into the back of the closet while windbreakers and sweaters are brought up front.

 

For many of us here in the United States, we’ve already unofficially welcomed Spring. That was done on March 11th, when we turned our clocks forward and on March 20th, we officially welcome it.

 

It’s cliché to say that Spring is synonymous with renewal and rebirth but the truth of the matter is, it is. I mean, all we have to do is look out our window to see it. Depending on where you are, the crocuses may be out, blades of grass beginning to peak through the ground.

 

Why even the holidays we celebrate in Springtime are all about renewal. I mean, just look at the symbolism.

 

If one were to look up the meaning of the word “renewal” one will find many definitions. One that comes from Merriam-Webster I just love. It says that renewal is “to become new or as new.”

 

Isn’t that beautiful? After a long, dark, cold winter we can become new again.

 

But the question is, how as overwhelmed caregivers, busy all day long with our kids, our spouses, our house, and our care recipients, are we able to do that?

 

 Ways We Can Make This The Best Spring Ever

 

1. Conduct a thorough Spring Cleaning and no, when say that I don’t mean tearing the house apart and cleaning it to an inch of its life. What I mean is:

 

:: Go through diets, pantries, and refrigerators. Assess what foods are no longer serving us in terms of our health and nutrition and replace them with better food that’ll better support our goals.

 

:: Review exercise regimes. For those already exercising (woot-woot!), keep it up. For those who don’t, I want to be the voice of encouragement. One evening, instead of collapsing in front of the TV, try going for a little walk (providing you can leave your care recipient on his/her own). If your care recipient can’t be left alone, try walking around the house, going up and down the stairs a few times, putting on a CD or something on one of those streaming channels and dance around the living room. Provided there are no medical contra-indications to exercise, exercise provides energy and a rise in endorphins, which lowers stress.

 

2. De-clutter your life. Assess which friends and which habits support the goals of health and relaxation. Keep what works and discard the rest. So, if you have a friend, for example, who loves to dictate how they would take care of your loved one if they were in your place (so obnoxious, isn’t it?) my experience is that the best and healthiest thing to do is simply walk away.

 

3. Create a meaningful daily ritual. Read the Bible. Pray. Sit in meditation or take a few deep breaths with the eyes closed.

 

4. Try something new; something never tried before. A new hobby. Painting. Learning how to knit or crochet. Maybe start a vegetable garden in the backyard.

 

5. About life in the future. A new job. Or a new career. Maybe a dream vacation. To the tropics? A tour to Alaska? A cruise along the Mediterranean? Go ahead, plan it out. For a week? How about two?

 

6. Sit down and assess what attitudes and strategies are still working and what aren’t. Those that are still working, keep. Those that aren’t, how about discovering (or re-discovering) ways that things can flow more easily?

 

Conclusion

 

While each season has it’s own gifts, Spring’s gifts is that of rebirth and renewal. If we can embrace those gifts and learn the lessons they have to offer, then we can reduce our stress and the overwhelm it brings, thereby making this Spring the best ever.

 

 

 

Karen Bromberg is the founder of Help You Thru, LLC, an online resource for family caregivers offering resources, relaxation and relaxation techniques to overwhelmed caregivers. Feel free to contact her at staff@helpyouthru.com. Want more information about how you can make your caregiving journey easier? Join our mailing list.

What To Do When There’s Caregiving Love in Your Heart, But Nowhere To Focus It?

What To Do When There’s Caregiving Love in Your Heart, But Nowhere To Focus It?

by Karen Bromberg

Introduction

 

Answer a question – Do you assume your caregiving ends when your care recipient either is no longer here or is being cared for by others?

 

As most of you know, my parents passed in late 2016; my mother in early November and my father in early December. But this isn’t just about what happens with caregivers when a care recipient dies.

 

It’s also about those caregivers who, until recently, have provided 24/7 care for their loved ones but have had to put them into an assisted living or a nursing home. It’s about those who have had to hire someone to come into the house even if it’s a couple of hours a week and it’s for those who have taken advantage of respite care even if only once every so often.

 

If you’re anything like me, the second the anxiety-fest subsides you don’t know what to do with yourself. You may feel a little lost, confused, maybe somewhat disoriented. I mean, there you were, so busy, no weekends, maybe no evenings, then, suddenly nothing.

 

When my parents passed it was a real challenge for me. I mean, I was functioning at such a fast pace, with so much adrenaline coursing through my system that it took me a while to throttle back.

 

I kept asking myself, “Okay, what needs to be done now? What needs to be done now?” It was like a broken record. Over and over again, the same question as when I was in the throes of caregiving.

 

But the truth was . . . nothing needed to be done.

 

For those still in the middle of their caregiving, let me just say that I get it. I know you’re probably thinking that I’m being ridiculous. Complaining about nothing, like those models who complain about being fat when they themselves are pencil thin.

 

You, who would like nothing more than a good night’s sleep. You, who would like nothing better than a weekend to call your own. You, who may be suffering from caregiver fatigue, caregiver stress, caregiver burnout and would like nothing better than to have a good rest, I want you to know that I totally understand your feelings.

 

That said, the question still remains. What do we do when we still have caregiving love in our hearts, but nowhere to focus it?

 

Tips and Strategies

 

To my mind, there are so many things we can do. The most obvious, of course, is to volunteer and for those so inclined (and who have the time and energy) there are many so opportunities. You can:

 

  1. become a big brother or big sister,
  2. volunteer at a soup kitchen,
  3. read to the blind or
  4. read to the elderly.

 

For many, being with others, helping others, seeing others grow and achieve is precisely what gives their lives meaning. For others, not so much and that’s perfectly okay. We’re all wired differently and as my father would say, “that’s what makes the world go ‘roud.”

 

In a previous blog post titled, “Being Our Own Best Caregiver” I pose the question, “what if instead of putting our needs last, we fold them into whatever we need to do for our loved one(s)? In essence, we become caregivers to ourselves as well.”

 

So, my question is, what if (whether we choose to volunteer or not, whether our loved one has passed or not) take up the mantle and become our own best caregivers? What if:

 

  • instead of focusing solely on Mom getting up, getting dressed and eating a good breakfast the way you always have in the past, you also made sure that you get up in time so that you can get dressed and have a good breakfast?

 

  • instead of focusing solely on Dad having people in his life that he can socialize with, you also made sure that you have people in your life that you can socialize and have a good laugh with?

 

  • instead of focusing solely on making sure that your spouse keeps his or her doctor’s appointments, that you also make sure that you keep yours?

 

You get the idea.

 

And if your loved one has passed, what if you took all that caregiver’s love that’s still in your heart and turn it toward yourself? I mean, who deserves it more?

 

That kindness, that caring and that concern that you so lovingly showered on your care recipient, how about sprinkling some of that on yourself? So much better than hiding it away, thinking it no longer is needed or pretending that it doesn’t exist.

 

Look, we all have the right to do as we see fit and that includes putting our caregiving selves on the shelf, once that part is not needed as much.

 

My suggestion is that we don’t.

 

 

Karen Bromberg is the founder of Help You Thru, LLC, an online resource for family caregivers offering resources, relaxation and relaxation techniques to overwhelmed caregivers. Feel free to contact her at staff@helpyouthru.com. Want more information about how you can make your caregiving journey easier? Join our mailing list.

Overwhelmed Caregiver: A Day In The Life

Overwhelmed Caregiver: A Day In The Life

By Michael Picucci

 

I remember the day we received the diagnosis at NYU hospital. While waiting in the solarium I watched the city lights glimmer against a darkening sky; a colorful sunset was nearly gone peered through the Manhattan skyline. I hadn’t even spoken with the doctor, yet there was a sense of being frozen in time. Charcoal clouds glided over office buildings. The room smelled of disinfectant and institutional food. Girls with red and white striped pinafores over starched white uniforms were carrying fiberglass trays.

 

All of my senses were heightened. It was like looking at the tiniest detail through a microscope. I noticed the girl’s caps and the pointy shape of their white collars. Yet, at the same time, I had completely lost touch with where I was.

 

I could feel my eyes were glazing and I nearly forgot my name.

 

Dr. Wallace, a self-assured specialist invited Sheila’s mom Olga and me into a small office space just off the solarium. We were told that Sheila needed to be admitted immediately.

 

“Sheila has a rare form of cancer in the leg bone,” he started, his expression earnest. “It’s called Ewing sarcoma” He took a pause and looked at each of us before saying, “We’re going to have to amputate Sheila’s leg above the knee. And we have to do the surgery as soon as possible.”

 

He shook my hand and continued to speak with Olga while I walked away. He could probably see that I was holding back an urge to just keel over. I’ve discovered that for most caregivers such a time exists, of feeling crushed. It’s a traumatic inability to face this kind of reckoning.

 

Until Sheila’s passing two years later I was consumed—sometimes consciously, mostly not—by a racy feeling emanating from my stomach then taking over my whole inner condition. She always wanted me, not Olga, to keep her company and to tend to her needs, which where expanding day by day: going through the amputation process, her often-hysterical terrors, being fitted for the prosthetic, phantom pains long after the leg was gone, the chemo, needing to be carried to the bathroom numerous times during the night.

 

Living in Two Realities, The Anguish

 

Simultaneous to all of this I was attending to my new job in advertising, a dream come true. I had to show up and do the best job I could. I would go home at lunchtime to see if I could get her to eat something, as only I was allowed this responsibility. My employer showed extraordinary compassion—the constant having to leave to go with Sheila to a doctor’s appointment or the intermittent crises I needed to attend to immediately.

 

I was living in two incompatible realities. Later I identified this as an often-overlooked suffering of the caregiver. One is the everyday personal existence—self-care, professional responsibilities, social engagement; the other is the intimate world of the sick and fragile loved one, with its ever-changing demands, along with full body/mind consumption.

 

I discovered that I could bounce between the two awkwardly, yet they never felt integrated. These two aspects of my being suffered greatly even at the thought of bringing them together.

 

But I learned how I could resource myself. To learn the techniques on how I did it, and how to resource yourself, please check out Resourcing Ourselves: Three Tangible Shifts.

 

 

Michael Picucci, PhD, SEP is in private practice in NYC and Ulster County, NY. Michael also passionately teaches Focalizing to individuals and groups, mostly with the Focalizing Institute Or you can reach Michael directly at http://www.michaelpicucci.com.

 

 

 

Five Rights Overwhelmed Caregivers Have (But May Not Realize)

Five Rights Overwhelmed Caregivers Have (But May Not Realize)

by Karen Bromberg

 

Introduction

 

When I think back to my days as an overwhelmed caregiver, the one thing that comes to mind was how stoically I went through my days. Oh, I complained. Just ask my friends. I complained about how tired I was and how frustrated I felt. You name it. I’d complain about it.

 

But when all was said and done (and I finally finished my complaining), the one thing I typically said was “ . . . all-in-all, I guess I’m doing as well as can be expected, given the circumstances.”

 

Of course, I wasn’t. Anyone who’s done family caregiving for more than five minutes knows that I wasn’t. But what was I going to do? Tell them that my heart was breaking? Tell them that I was in tears pretty much all the time and when I wasn’t in tears, I was so angry that it took all my self-control not to throw something?

 

How could I say that?

 

First of all, I felt that most people didn’t REALLY care. I mean, they asked but I felt as though they were doing it more out of social obligation than really wanting to know. (As I came to realize, in some cases, I was 100% correct.)

 

I also felt that I wouldn’t be understood and by extension, be judged. And of course, there was the guilt. There was always the guilt.

 

My years of being a caregiver to my parents are over now and what I’ve come to realize (even more now than before) is that caregiving is not for the faint of heart. It’s hard, requiring us to have grit and fortitude, wisdom and an internal strength that those who have never done caregiving can’t understand.

 

On a daily basis it requires us to look at our positive and negative qualities, our wants and desires then take them all and push them to the side in the service of another/others.

 

That said, I’ve also come to realize that caregivers also have certain rights.

 

We have the right to:

 

  1. not want to be a caregiver.

But, of course, you do it. You care-give every day and really, you wouldn’t have it any other way. But let’s be honest, no one ever asked for it. I mean, it’s not like you woke up one day all bright eyed and bushy tailed, excited at the prospect, rubbing your hands together, saying to yourself, “oh boy, I think today I’ll be a caregiver.” No, it’s more like you were chugging along in your life, then one day – BOOM — the you-know-what hits the fan and there you are – a caregiver. Perhaps, your caregiving situation came up slowly. Perhaps you saw it coming. Even so, it probably still caught you by surprise because, really, no matter how much a person prepares, somehow caregiving ALWAYS manages to catch one off-guard.

 

  1. to be angry.

Of course, you do! There you were: being a parent, being a spouse, an employee, a daughter (or son) then all of a sudden you became a caregiver. No preparation. No instruction booklet. And now, here you are on the front-line: dealing with the medical community, dealing with the insurance company, dealing with Medicare or Medicaid. All while the person you love so much is sick or injured. You feel the pressure, having it all in your lap. Having to deal with it day in and day out. Oh, sometimes a relative or friend will step up to help you out, but for the most part, it’s all on YOU. And you get angry. Not at the person you’re caring for necessarily but at the situation itself.

 

  1. to feel resentful.

You look at others: going out to the movies, going out to dinner, going away on vacation, and see them laughing and having a good time the way you used to. Enjoying life. You feel the knot in your gut as you remember doing all the things you used to do and long to do them again. Then there are the times when you find yourself on a bus or in a grocery store or at the newspaper stand and happen to overhear folks either behind you or ahead of you online complaining about their co-workers or their boss, whining about how tough their life is. You feel the grip in your belly. You want to tell them, “Tough . . . you think your life is tough? Try not sleeping for a week because you mother keeps you up at night. Try worrying about how you are going to keep it all together because your boss is getting down on you for all the time you’ve had to take off caring for your Dad. Try figuring out how you are going to do retirement because five years ago you had to quit your job to take care of your dying wife, now that she’s gone no one wants to hire you. Try that out for size then come back and tell me how tough your life is.” Except you don’t. You bite your tongue and move on.

 

Conclusion

 

As caregivers, we so often have to navigate situations and feelings similar to the ones above. We do it so often that we can think that’s all there is. Oh, we remember better times and we may even look forward to having them again sometime in the distant future, but we assume that in the present slogging through our days is all there is.

 

Now, to be clear, not everybody is going to go through all of these at the same time – at least I hope not – but if you do, if you find that your appetite or sleep pattern is being affected by the stress caused by your caregiving responsibilities, if you find you’re dragging through the day, if you find no pleasure in the things that you used to like doing please, please, please, I beg you, seek out professional help and support.

 

Remember, while you have the right to feel all your feelings, you don’t want them getting in the way of your day-to-day life. Remember, too, that even though you are busy caregiving, you have the right to feel joy and excitement, love and a sense of wellbeing.

 

You also have the right to

 

:: ask others for help.

Now, I know this takes courage. Picking up the phone. Making that call. Asking. It sounds easy but in fact, it can be one of the hardest yet bravest things you can do. Being vulnerable. But you might be surprised. People want to help. They just may not know how. Let’s face it, not everybody is equipped to do everything. Your sister might not be comfortable cooking dinner for Mom but she might be perfectly willing, even happy, to take her to her doctor’s appointment. Your brother might not want to change Dad’s Depends but is thrilled to be able to spend one-on-one time with him while feeding him. Ideally, the best thing is to have something akin to “a committee” of people to call on; different people for different tasks. Of course, if this is not possible (because most of the time it isn’t), finding those two or three people who are willing to pitch in, then asking when you need it, can make such a big difference.

 

Not just that, you also have the right to

 

:: receive.

By nature caregivers give. It’s just who we are. It’s what we do. And it’s how we’re comfortable going through life. But giving and giving all the time can lead to our “our cups” being empty which makes it that much harder to give. If it becomes hard to give, we risk burnout. We become burnt-out, we risk becoming less effective caregivers. I know, for those of us wired to give, it takes practice to be able to receive, but it is SOOOO worth it! As the old TV commercial used to say, “Try it, you’ll like it.”

 

Any comments? I’d love to hear it.

 

 

Karen Bromberg is the founder of Help You Thru, LLC, an online resource for family caregivers offering resources, relaxation and relaxation techniques to overwhelmed caregivers. Feel free to contact her, either by email at staff@helpyouthru.com or via phone 929-276-2109. Want to get more information about how you can make your caregiving journey easier, simply fill out the form below and join our mailing list.