We are Simply Human: A Caregiver’s Perspective

We are Simply Human: A Caregiver’s Perspective

By Stuart Smith.

I have been a caregiver for my wife, Ellen, for the past ten years of our 44 years of marriage. Ellen braves two distinct and incurable conditions: Ehlers-Danlos Syndrome and sarcoidosis. There have been times, over the last decade, when the impact of Ellen’s symptoms has proven incredibly painful and temporarily disabling. My wife has faced the possibility of an untimely death or spending her life in a wheelchair. While a cure for either of her medical conditions appears unlikely in our lifetime, medical science has ameliorated some of the more severe symptoms of both conditions, allowing Ellen to more comfortably adapt to her new physical limitations. Dramatically altering previously sought-after goals and activities has enabled Ellen to find new meaning and purpose—so critical when building a hopeful perspective on life. Ellen is alive, vibrant, mobile and more importantly, looking to the future with a positive attitude.

Stuart Smith

Looking back over the last ten years, which has included 24 surgeries—many out-of-state—and often stressful recoveries, I’ve come to realize that the greatest challenge for me and perhaps any individual caring for a loved one with chronic, incurable conditions, is managing one’s fear of the future. While we all may have fears of a future not known, for the medically complex patient population, this fear can be particularly acute and often demanding; combatting such trepidation necessitates considerable psychologic and physical energy. The primary challenge to those caring for loved ones may be in not allowing their own fears and anxieties to overwhelm them and become debilitating for them as the caregiver. I am well aware of the extreme hazard which caregiver anxiety can present.

While nobody is immune from the possibility of being overwhelmed by stress, there do exist strategies which can serve to support one’s capacity to manage stress overloads experienced while caring for a loved one living with chronic conditions. The fear created by an uncertain future in these circumstances may never be eliminated, but services are available, and techniques can be learned to assist individuals in managing the very real possibilities of anxiety relapse resulting from intense stress and disappointment which can accompany such episodes. My own belief is that long-term caregivers must attempt to focus on the present. Ellen and I are all too aware that, short of medical breakthroughs on her condition, we are confronting the inevitable setbacks that may come from her health. We’ve come to understand the necessity of embracing the good days with enthusiasm to get through the unavoidable, difficult periods.

Ellen Smith

Approximately two years ago, Ellen underwent critical neck surgery. This procedure proved to be a success and, as the result, yielded us the luxury of two of the best years of our past decade. We engaged in a whole host of productive and rewarding activities. Our lives were as close to “normal” as we might have hoped for. We were once again able to engage in purposeful endeavors that previously would have proved too vigorous. Ellen would still continue to confront physical constraints and a level of pain but did so with this new-found hope. The two of us believed this recent optimism was leading us to a less challenging future.

We were wrong.

This past fall, any semblance of normalcy and the continuation of this encouraging sense of well being came to a crashing halt. Ellen experienced a physical episode that left her temporarily catatonic and unresponsive. For the first time in my life, I endured a panic attack, leaving me psychologically dysfunctional amid my wife’s medical spell. I was hospitalized for the better part of a day. My oldest son and daughter-in-law responded to the crisis and saved my wife’s life.

I learned a valuable lesson that day. I realized that, like all humans, we have limits in terms of our capacity to manage psychological pressures. Apparently, I had reached my limit. This event led me to appreciate that there is no shame in recognizing your very human thresholds. The challenge is acknowledging you have the ability to adapt to those mental and emotional confines. Effective long-term caregiving requires that caregivers make every effort to recognize that fear is an unavoidable part of human existence. For the caregivers of the chronically ill, fear of what the future may hold is much more palpable, often intense and, perhaps, as in the case of my panic attack, temporarily disabling.

Ellen continued enduring devastating episodes. Her condition deteriorated rapidly and significantly due to neck instability. It was determined that more neck surgery was required as soon as possible. It was during one of Ellen’s physical meltdowns that I would experience another panic attack which left me incapable of caring for my wife. I would enter psychological counseling for a brief period and was provided with anti-anxiety medication that I have not yet had the need for, since the initial panic episode.

In January of this year, Ellen once again underwent life-threatening surgery on her neck; two more vertebrae were fused. While she lost some flexibility, the surgery, if successful, would serve to eliminate or minimize the recent myriad of physical symptoms which had proven dangerous. The surgery appears to have been successful as the severe symptoms of the previous months have not returned. To date, we remain hopeful a sense of normalcy and emotional well being will once again grace our lives.

Absent the painful and often debilitating manifestations produced by Ellen’s condition, I seem to be able to manage the anxiety produced by an often uncertain, and at times frightening future. I recognize that just as Ellen’s pain and emotional discomfort will probably never be extinguished from her every day, likewise, my fears and accompanying anxieties will always be a challenge which I can’t ignore; to do so would be a disservice to her quality of life and mine. I must always attempt to remain conscious of the fact that I am simply human. Caregivers must be kind to themselves and constantly build their self-confidence by keeping in mind the successes they have achieved while navigating the emotional rollercoaster which has become the focus of their lives. A sense of self-esteem in managing this critical task of caregiving for the chronically ill and/or those suffering from long-term disabilities is crucial to maintaining a psychological sense of well being and physical health, both necessary to mitigate the task at hand.

For me, positive affirmations and empowering words have encouraged me to recognize the delicate balancing act caregivers must carry out on a daily basis. By accepting responsibilities that go along with being a valuable caregiver, which includes self-care and identifying psychological limitations, the person living with the chronic condition and the caregiver can embrace and foster a healthy relationship that compliments each other’s needs. I never tire of this quote I once heard when describing the task of caregiving: We walk this path together and if you stumble I will take your hand and if I tremble you will hold me tight and all is not lost. The quote brilliantly displays the unspoken cooperation that makes the unknown more bearable. A successful dynamic between the caregiver and the chronically ill loved one is achieved through selflessness, resilience, and patience. Reaching such an advantageous state between each person takes practice, reminders and time; it is an endless ritual. If you do not have a daily mantra or motto to live by, remember that within the darkness lives hope, and that’s all any of us can ask for.

Stuart Smith is the US Pain Foundation Co-Director for Cannabis Advocacy with his wife Ellen and Vice President for Rhode Island Patient Advocacy. The views he expresses in the story are his own.

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Authored by: Stuart Smith

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Patricia

Thank you so much for sharing.

Lisa Shuman

I hope you all know these pain management Drs do not care about any of us.they know the pain that we all suffer on a daily basis..they are worried about their license..im sorry..if I was a Dr there would be NO ONE TELLING ME WHAT I COULD OR COULD NOT PERSCRIBE…the dea and cbc and all the other Abcs they do not even hold a medical license..how could they tell any Dr anything..it cost them a lot of money to go to medical school and then advance on to pain management…they don’t even have the [edit] to stand up for their patients.cant everyone see this.it does not take a rocket scientist..ive had 2 failed spine surgeries and I can’t even walk except from room to room.i am basically housebound..come on in 54 years old..my need my meds or I don’t walk at all..this is not right..if I was a dr.NOBODY WOULD TELL ME WHAT I COULD DO..YOU SIGNED AND OATH TO KEEP YOUR PATIENTS AS COMFORTABLE AS YOU CAN..NOW GROW SOME [edit] AND STICK UP FOR YOUR PATIENTS..i myself will take my life if I have no access to pain relief and NO ONE CARES.

Maureen M.

Stu, Thank you for writing about your caregiver experiences, effects, and suggestions. I’m a CP person without a spec of support… I do it all on my own which means that I am my own caregiver. You gave me insight on why I experience so much draining fatigue.
I tend to blame it all on my pain and my meds but now I realize that I’m also exhausted from doing it all alone.
You and Ellen are such a beautiful couple. And you are so very blessed to have one another and help guide and support each other. Hang in there and keep strong, but don’t ever forget to be kind to yourself also.
Life is all about lessons….

Heidi schlossberg

I literally had to take deep breaths while reading your story. My dead husband suffered from severe neck and lower back injuries from MVAs that left him In severe pain as well as severe sarcoidosis that killed him 10 years after DX in 1999. My daughter was disabled directly from psych drugs she needed to take as a child from severe debilitating psychotic symptoms causing a cascading auto immune disease onset which later resulted in Central pain syndrome. She and I have been traumatized through over 240 ER and inpatient visits in which only a handful haven’t been Abusive and terrifying . Even as a child the scores of hospital and dr visits with innapropriate treatment we had to protect her from , that later was admitted to be dangerous and misguided, has forever scarred me . The severe anxiety not only created by the severe life threatening illnesses of family members ( never mind my own which I’m always diminishing in my own mind since I convince myself I am immortal ) but the abuse and medical mistreatment of us all is too much to bear. I often feel like the person who escaped in Plato’s Alleghory of the Cave. The only thing that keeps me going is knowing that I’m not alone despite feeling that way

nana

Thank you for the timely article. You have helped me personally. I, also am a 10 year plus caregiver. My Husband, 19 years my senior, has some age related issues, a vestibular disorder and a history of stage 4 prostate cancer.

I am the one though with the 8 level fusion. C2-t3. L5-6 as well. And recent cardiothoracic surgery have left me very overwhelmed.

It is like a double whammy. And you are right.. we are human. I am currently taking a 10 day break. I feel very guilty as most caregivers do or so I am told. But I committed to this break and the overwhelming urge to flee back home will have to be physically overcome. I am doing this. We both need this.
Again. Thank you.

Absolutely beautifully spoken. Thank you for sharing this glimpse of hers and your life. In the face of so much adversity, it’s one of the biggest questions I ask myself: Where do I pull the hope from? And the answer is never easy. But there are so many things to live for and find joy in. Thank you.

L M.

God bless the both of you. This brought tears to my eyes. It also gave me hope and strength will struggling with my own chronic illness. ♡

Holly

God Bless you and your wife! I would like to say this..You too look so good together! I commend you two for having 44 years together! I thought of my husband when reading your message. We have been married for 39 years and he is my rock! He has taken such good care of me thru all my surgeries. That’s what it’s all about! Good Luck and thank you for sharing!

Janeen Utley

Thank you so much for sharing your heart felt story and life experiences !! You are an inspiration , both you and your wife , Thank you for reminding to enjoy each and every moment ! God bless you both 🧡🎗️

joanne pluta

You both are truly blessed

Susan

How totally blessed your wife! Having been FT caregiver and FT pt. all my life on the receiving end, I can tell you, It’s far more difficult to be caregiver no matter what the pts dz. Hat’s off to you, Stu. Always remember, the caregiver must first care for the caregiver.

Teresa M Surratt

If only this world had more amazing people like you! How uplifting ! My blessings to your wife who must be just as amazing. God bless you both.

Cynthia

I too have Ehlers danlos,syndrome type 3. I am in chronic pain all the time. I have had my pain management taken. It is by the grace of GOD that I’m pushing forward. Some days I don’t want get out of bed. Not much is known about this,syndrome. No cure and no one treatment. The u known can be scary. God bless u borh

Danny

What a wonderful view of a loving caregiver! My wife is my caregiver, and I almost broke up with her 23 years ago because I was very worried that she didn’t truly realize what she was getting herself into. She refused to allow the breakup for that reason, demanding that I give her the credit she was due for knowing what the future held and had remained by my side for 2 years so far in spite of my flares and disappearances into my pain bedroom. Once we decided to get married, she helped change the blueprints of the starter home we were building to allow for a true pain room to be located as far away from the kitchen & den area as possible in order to relieve my concerns, as much as possible, about my pain interrupting her daily life. Our next home was designed in an even better way for a pain room, including extra insulation and a solid-core door for extra sound-proofing. Our current home includes a large upstairs bedroom w/ full bath which is the best scenario of all. It also includes the extra sound-proofing of our previous home. She can do anything downstairs, including laundry, cooking, putzing around the house and watching television, and I can’t hear anything. It’s a great relief for me that she can live a somewhat normal life in spite of my pain sensitivities.

Those of us who have such loving caregivers are very, very fortunate. And we should never forget the weight of our health issues on their shoulders, and hearts. This article has reaffirmed my appreciation for my wife, and I will be very conscious of expressing my appreciation for her and all she does for me.

Thank you, Stu Smith, for a beautifully written description of your heartfelt and loving description of your caregiver responsibilities. It’s a great view from the “other side”!

Annamarie Fockema

Wow! So powerful!

Jackie Alarie

Thank you for sharing your heartfelt perspective. Best wishes to you both.