An Open Letter to the U.S. Congress

Dear Senators and Representatives of the United States Congress,

My name is Gary M. Votour. I have lived in Columbia, SC for the last six years. Although I am disabled, I volunteer my time as a personal health care advocate. As a Christian, I follow the teachings of my savior, Jesus Christ. I follow my calling and help my fellow men and women when they are dealing with complex medical issues by helping them prepare for life-threatening treatments. I assist them in getting second opinions, understanding informed consent, assigning health care proxies and preparing living wills.

That is not what I am writing to you about today. In 2006, my first wife and I lived in Massachusetts. She was diagnosed with a rare form of bone cancer, and a high-risk surgery to arrest its development went horribly wrong. Ischemic strokes during the surgeries left her almost completely paralyzed and in constant pain for the rest of her life. After 6 months in 3 different hospitals, we were fortunate enough to return to our rural home where she struggled to continue living in spite of what happened. After 30 months of ICU level home care, she gave up and stopped eating and drinking. She died in 2008.

Throughout the hospitalization and home care period, I never left her side. Her strength and determination inspired me to dedicate my life to helping others. After she died, I returned to school, obtained a Masters Degree in Health Care Administration and became the advocate for others I am today.

When her surgery went badly, her employer terminated her. For eighteen months, the Massachusetts Medicaid program, MassHealth, reimbursed us for the COBRA payments needed to keep her private insurance. MassHealth also paid for virtually everything not covered by her HMO. This included visiting nurse visits several times a week, home care supplies, physical therapy, and most importantly funding for the staff we needed at home to help me care for her. A special program funded by MassHealth paid for 90 hours of staff weekly, that we could hire locally and train. Without MassHealth, her care at home would not have been possible.

After the 18 month COBRA period ended, her HMO would not insure her. Her “pre-existing” condition gave them the right to deny her coverage. Medicare became her primary insurer, and MassHealth continued to fund what they did not cover. We were fortunate enough to be in the only state in the country that had adopted such a progressive Medicaid program. This was because our state legislation had passed what was known as Romneycare, named for our Republican governor Mitt Romney. That is the program, as I am sure you know, that the Affordable Care Act’s (ACA) Medicaid expansions were modeled after in 2009 for the entire nation.

If we lived in South Carolina today, and this happened to us, the outcome for my wife would have been very different. Because this state has not expanded and strengthened their Medicaid program under the ACA, caring for my wife at home would have been near impossible. The best care we could have hoped for here would result in her being warehoused and left to die in a nursing home, with a standard of care far less than what we were able to provide for her at home. Even that meager care for her likely shortened life would most certainly have meant foreclosure on our home and bankruptcy for me before she would have been eligible for any Medicaid assistance once her COBRA protected insurance ran out.

After the ACA was passed, I hoped that every state would expand their programs using the freely available funding provides by the ACA. Unfortunately, as you also know, a six-year political struggle between liberals and conservatives decided otherwise in 19 states, including the one I know call home. The originally partisan ACA became a victim to political battles, and thousands of people have already died as a result in those states that did not expand Medicaid to cover their working poor.

As an advocate for the ill, I can tell you there is no shortage of need here in South Carolina. As an advocate for those in need, I must urge you to reconsider giving any support to the American Health Care Act (AHCA).

The AHCA includes changes to the law that would allow insurers to charge extra for those who may have preexisting conditions. That alone should mandate your opposition, and I write to you today to remind you that what happened to my wife could happen to any of us at any time. No one should lose their insurance when they become ill or are dying. The ACA made it mandatory that insurers offer affordable insurance to all, regardless of their medical condition.

You must see that there, but for the grace of God, goes any of us.

Also, Medicaid is a vital program designed to protect all of us in times of trouble, whether it be financial or medical. We both know that if the presidential election was decided by popular vote, the 19 remaining states would likely now be expanding their programs to do more for the poor, not less. Block grants for Medicaid will cause the eventual destruction of the program, as State’s will be forced to ration care to the needy. You will, in effect, be creating the mythical Obamacare “death panels” people theorized about years ago, but they will be at the state level as they are forced to do less and less for the poor into the future.

I ask you from my heart to use all of your power as my elected representative to end the forward progress of the AHCA. Force it to be tabled, not amended. Require that it be removed immediately from legislative consideration until both Democrats and Republicans can sit together and craft legislation that guarantees no one will be denied their right to insurance because of illness or income.  Ensure that Medicaid programs in all 50 states are strengthened, not diminished. Create incentives for the remaining states to expand coverage, don’t reward them for allowing their citizens to die needlessly.

Our country is a great nation, a shining light on a hill to the rest of the world. We have a unique opportunity to show everyone that America is indeed the most merciful nation on the planet. As President Kennedy said in 1961, “Today the eyes of all people are truly upon us—and our governments, in every branch, at every level, national, State, and local, must be as a city upon a hill—constructed and inhabited by men aware of their grave trust and their great responsibilities.”  Instead of embracing the slogan “Make America Great Again” let us agree that America is already a great country that can afford to do better for those who have less.

In closing, I leave you with the biblical passage that guides my life in the hope that it will guide your thoughts on this issue.

When the Son of Man comes in his glory, and all the angels with him, he will sit on his glorious throne. All the nations will be gathered before him, and he will separate the people one from another as a shepherd separates the sheep from the goats. He will put the sheep on his right and the goats on his left. Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’

Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you?’ The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’” -Matthew 25, 31-40

I look forward to your reply.

Peace.

Gary M. Votour, MHCA
Columbia, SC 29223

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Keisha’s Kairos Moment

Keisha’s Kairos Moment
By Gary M. Votour, MHCA
A kairos moment in health care… can you name one from your life?
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The ancient Greeks had two words for what we call time. One was chronos, which referred to the linear progression of time itself. Chronos is the one day follows another method we measure the passage of time with, as in “yesterday, today and tomorrow”. Whenever we measure time in seconds, minutes, hours, days, weeks, years, decades or centuries, we are speaking of chronos time, or as we more commonly call it chronological time.
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The Greeks also had another word used to define time, kairos. This unique word is lost in our language, but its meaning is still with us. Kairos refers to specific moment (or moments) of time where we make a decision based on possibilities presented to us in that very moment. What makes these moments in time different than chronos time is their potential. A kairos moment has the potential to change the future based on the decision the person experiencing the moment makes. Obviously, in some ways life is filled with reflexive kairos-like moments. We couldn’t walk down the stairs without falling down them if we didn’t decide to move our feet forward and down with each step. Kairos moments are somehow different, moments where we make decisions we should not make casually or based on reflex.
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kairosA kairos moment can be the second when a  someone decides to say “I do” to a marriage proposal, or it can be the moment you and your spouse decide you want to have children. It can even be the moment you decide to give a homeless person the extra ten dollars you found in your wallet this week. A true kairos moment is when God gives us a unique opportunity to make a mindful decision to make a difference in our own or someone else’s life. A kairos moment in health care is no different, for both patients and providers alike.

Putting aside his own feeling that he has failed to save a life, a doctor decides to advise a terminally ill patient that the treatment they are seeking may prolong their life but will likely have an adverse impact on the quality of the time they have left. He recommends they consider hospice instead of treatment. A nurse chooses to speak up on behalf of a patient in her care regarding the ethics of a doctor, knowing that although it will likely improve her patient’s outcome she will probably have to face repercussions from the respect she is given professionally by that doctor and her own peers in the future. A therapist decides to visit a discharged patient at their home to give them moral support in their recovery, knowing that it is against her employer’s policy to do so and risks punitive action from her employer by doing so.

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These are all examples of kairos moments in health care, where health care providers make a decision when they feel God has given them the opportunity to make a decision that shapes lives, a chance to express their compassion and love for the people they care for, regardless of the personal consequences. I have personally witnessed examples of all of these decisions, and can testify to the power they had to make a difference in the lives of others.
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KairosPSD
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It is not just providers that are given these opportunities to make life altering choices. Patients, family members and friends get these wonderfully unique opportunities given to them when someone they or someone they love is recovering from an illness or injury or even dying from a terminal disease. Visiting in the hospital, offering a meal, offering  companionship and even consciously praying for someone all have the potential to be kairos moments. Sometimes it goes even deeper, and we find ourselves challenged by God to make the right ethical or moral choice.
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In 2006, I was living in the ICU of a major surgical hospital in Boston. My wife, Lyn, was struggling to survive a surgical stroke. We were in that ICU together for weeks on end, and I met other family members who were struggling as well.  At my worst one day, when I was filled with self pity and feeling hopeless that we could possibly survive the ordeal, I met a young woman I will call Keisha and her parents. I’ll never forget them. Once I tell you about them, I doubt you will either.
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Keisha was 17. I met her parents in the waiting rooms one day, and they let me visit her whenever I wanted. She was an awesome young lady that I will never forget. She had been having tumors in her brain sue to a rare form of cancer all of her life. Over a dozen surgeries over a ten year period removing tumors had been performed successfully. She was back this time because after a two year remission, her latest scans showed three new ones. Keisha and her parents had decided to tempt fate one last time.
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I first met her a week before her last surgery, so I did not get to know her very well. But I will never forget the first time we met. She was sitting in her bed, her scarred head shaved and prepped. Just sitting looking out the window.  I told her about Lyn, who was three ‘rooms’ away. I asked her if she’d like some company, and she said, “Sure. Pull up a chair”. I asked her what we were looking at. It was snowing outside and we were up on the 12th floor, so all you really could see was the snow swirling around outside the window.  She told me, “Outside.. we’re just watching outside. I need to know it’s still there waiting for me.”
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I sat there, quietly looking outside with her for an hour or so. We didn’t say much. Then she started to cry. I reached over and held her hand, and she said “My parents love me so much… but to be honest with you… I hope I don’t make it through this again. I hate watching them suffer along with me.”
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It was an epiphany for me. My eyes opened through all the pain I felt and saw how hard it must be for anyone to actually be so accepting of their own death. To be so selfless and loving that the only reason a fighter – a survivor like her- the only reason she would give up would be her love of others.
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Palliative-CareI remember holding her hand for hours over the next few days, rather it was her holding mine. I would quietly disappear back to Lyn’s side when her parents were around. After they would visit the three of us would get a bite to eat. They told me stories of their daughter growing up, how strong she was, and how they knew she would survive this and that eventually she would be OK, and I knew Keisha was right. She couldn’t live up to their expectations any longer.

I said goodbye to Keisha after her parents left in preop before her last surgery. We held hands as the meds started to kick in. As she fell asleep, she looked at me and said, “Would you tell them I am sorry?” I promised I would.

She did not survive the surgery. She passed on in recovery. I was with her parents when it happened. I sat and cried with her parents, wondering how I could possibly tell them what she had asked. I knew I would probably never see them again after that day.  Then her mother said “She was always struggling and trying so hard… I knew she did this for us. We should have never asked this of her again.” Through my own tears, I looked at her and said “She wanted you to know she was sorry… she asked me to tell you.” Her dad said, “We know. We were both outside when she told you. It was the last thing she said…”

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Keisha and her parents had created one of the most notable kairos moments in my life. I learned that day that the things we promise to do for those who are dying are not as hard as they may seem. It is an honor and a privilege to help someone at the moment of their passing.  I am honored to have known Keisha. My memory of her and her softly spoken words helped me get through what came in the next few years.
I hope it helps you someday.
Keisha would like that.
I share her story to honor her memory.

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Suicide and Hell

Suicide and Hell
by Gary M. Votour, MHCA

In about two months it will be four years since my wife ended her own life. I still grapple with one very large question… does the act of ending one’s own life condemn us to an eternity of suffering? I believe the answer depends on what you hold as your own spiritual beliefs.

In the Roman Catholic Church, with its strict and literal interpretations of the Bible, the answer would be yes. They believe that suicide is a mortal sin, and that to die with unforgiven mortal sins condemns one to hell instead of heaven. They also hold as truth that Christ conferred the power to forgive sins only upon the apostles and their successors. Anglican and Eastern Orthodox Catholic churches generally agree with this position.

Since this view holds that only the Church itself can forgive sins, a person must do all that they can to ensure one enters eternity with the Church’s forgiveness for all their sins. This is why they administer “last rites” to those who are dying. Since the act of suicide would presumably take place after any possible administration of “last rites”, eternity is entered with unforgiven sins.

The Protestant Christian view of sins and how they are forgiven resembles the actual scriptures more than that of the Catholic position. Protestant denomination believe that the actual scriptures hold greater authority than that of any church. They direct one to Christ as the only true redeemer of mankind and his sins. The Evangelical Christian view holds that all sins are forgiven the moment one accepts Christ as savior. This includes all sins, past, present and future.

This view is mine. I look in the Bible and I find these words that support it:

“For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.” – John 3:16

“For whosoever shall call upon the name of the Lord shall be saved.” – Romans 10:13

“For by grace are ye saved through faith; and that not of yourselves: it is the gift of God: Not of works, lest any man should boast.” – Ephesians 2:8-9

So we can see that one’s own beliefs and interpretation of the Bible must be what shapes the answer to this question. Let us return to the core question… does the Bible itself hold that suicide is justifiable at times?

I believe that the answer is yes, it does.

One specific instance is when the suicide is an act of redemption. Samson, a wayward Israelite judge, had allowed himself to be compromised and imprisoned by Israel’s enemies. His prayer and subsequent suicide appear to be pleasing to God because he was acting to atone for his transgressions. Another specific instance would be a soldier in combat who throws himself in the line of fire to save his comrades in arms. So atonement and selflessness would seem to be justifiable reasons to end one’s life.

Those instances do not apply to one who chooses a subtler form of suicide to end their own suffering, but since there are clear exceptions to the rule, there is room to explore further to find the answer. After all, where there is one exception there must be others.

What about the terminally ill, who have no hope of living and can not expect a high quality of life for what life remains? We accept that foregoing treatment and choosing hospice care is not a sin. It is simply a choice to let an illness run it’s course. See my previous post about the existence of hope in hospice care for more about that at https://fierceadvocacy.wordpress.com/2012/02/22/is-there-hope-in-hospice-care/

Going a step further, what about a person who is stable medically but in constantly increasing amounts of pain? Is it a suicide to stop eating and drinking and let starvation end one’s own life? If it is, does that constitute a sin that will condemn one to hell?

I’ve read a lot on this issue,
and there are no clear answers.

I only know what I know in my heart,
and that is where the answer, for me, must be.

My wife, Lyn, suffered greatly following a surgical stroke that left her mostly paralyzed. The surgery was to delay a congenital form of bone cancer that would have been fatal within a few years. The stroke destroyed parts of her brain that controlled motor control, pain perception and emotional control. After six months by her side in three hospitals, we had returned to our home, which was now an Intensive Care Unit. With 100 hours of staff coming and going weekly, I managed her home care for over two years. In that time she made great strides in recovery… she regained her voice and could eat some solid foods again. She would never walk. She would never smile. Worst of all, the pain she felt continued to increase to the point where to control it, she was practically sedated most of the time.

She fought for 27 months to recover as much as she could, despite the pain.  Awake and alert for only a few hours each day, she eventually decided to stop eating and drinking. She made us stop the tube feed. She said her goodbyes. After two weeks, she took her last breath with friends and myself at her side.

I have at long last concluded that she went to heaven, and no one can tell me otherwise. She had time to make her decision. She had the ability to decide for herself. Her death was not an act of redemption. It was not an act of selfless valor. It was simply what came next. Once no more progress in recovery could be made, she decided what was left of her life was not worth the pain and suffering that each waking moment caused her. So she simply stopped living. Although her technical suicide was a sin, it was forgiven before it was ever committed.

Christ loves us that much.
That is my belief, as it was hers.

When One is Sick, Two Need Help.

When One is Sick, Two Need Help
by Gary M. Votour

Introduction

Spousal caregiving is defined as a spouse who provides the majority of care and support for an ill partner for any length of time exceeding a few months. Because this is generally a financially uncompensated (unpaid) role, it is categorized under the term informal caregiving. Spousal caregiving is a difficult thing to recognize or support within the community, as it is often done quietly and in private. Spousal caregiving saves our society a great deal of resources, especially money. Despite how it helps keep health care costs lower for everyone, all too often it is unsupported by the community. After examining some statistics and identifying several important issues, I will set forth some ways that communities can provide more assistance.

Informal Caregiving Defined

What is informal caregiving?  Informal caregiving is the term used to define the unpaid support and help given by friends and family members to people who are either temporarily or permanently unable to function independently. Caregiving is best described as the process of providing support to another person that involves a wide range of activities. This can range from emotional support to direct assistance with personal hygiene. Informal caregivers are rarely paid for what they do and generally have no training that helps them learn how (LA Health, 2010).

Informal Caregiving Value

An estimated 40 million American over 18 years of age have provided unpaid care to another adult in the preceding year. Informal caregivers now provide 80% of the long term care in this country. When considering the financial value this care provides as a component of the larger picture of health care in this country, it is important to consider this one simple fact: During 2007, informal caregivers provided $375 billion or approximately 2.7% of the U.S. Gross Domestic Product (GDP) at no direct cost to society or health care insurers. That amount exceeds the money spent by federal Medicare and state Medicaid programs combined. The increase in informal caregiving is being driven by shorter hospital stays and increased usage of outpatient procedures, both of which are changes being made in this country’s health care system designed to increase profits for health care providers and insurers (LA Health, 2010).

Informal Caregiving Statistics

In 2007, the Los Angeles County Health department surveyed adult caregivers. They found that 16% of adults reported themselves as being informal caregivers.  Most informal caregivers are between 50 and 59 years old (21.3%), and one-third of all care-receivers live with their caregiver (33.2%).  Nearly one out of every ten caregivers are caring for their spouse or partner (9.8%).  Almost half of caregivers reported that the person they are caring for depended on them for assistance with two or more of the following activities of daily living (ADLS): transportation, eating, toileting, bathing, dressing or taking medication (45.7%) (LA Health, 2010).

Maintaining their own health status is a primary concern amongst informal caregivers.  Often referred to as the “Caregiver Burden”, adult informal caregivers are highly susceptible to a state of physical, mental and emotional exhaustion due to the intense demands of caregiving.  This is due to the fact that caregivers have a hard time recognizing their own needs and seeking help for their own exhaustion and frustration, which in turn puts more strain on their health (LA Health, 2010).

The National Family Caregiver’s (NFC) association reports similar findings from their own surveys of family caregivers.  The NFC also reports that 3 out of 4 caregivers report they do not go to their own doctor as often as they should, and over half of caregivers admit to skipping doctor’s appointments for themselves. NFC also found that 6 out of 10 caregivers describe that their own eating and exercise habits become significantly worse after they began caregiving. Over half of family caregivers exhibit clinically significant symptoms of depression, and many of them meet the diagnostic criteria for major depression. One of the most significant findings is that studies have shown that the constant stress combined with the lack of self-care caregivers experience can cause premature aging, often taking up to ten years off their life (NFC, 2011).

Spousal Caregiving Defined

Spousal caregivers are a subset of informal caregivers who are caring for a spouse or partner. They have a complex set of emotional issues that need to be addressed in addition to the physical health concerns. As mentioned previously, an important component of long term caregiving is called “self-identification”, where the caregiver realizes and adjusts to their new role. A spousal caregiver and President/CEO of the National Family Caregivers Association, Suzanne Mintz discusses her own self-realization.

“By identifying ourselves as family caregivers, we are in a position to fight for our rights, to begin to change the way society regards us, to start feeling better about our situation because we are identifying it for what it is-a painful job that we are so often asked to do alone, regardless of physical, emotional and financial costs. For too many years I did not have a name for what had happened to my life when my husband Steven was diagnosed with Multiple Sclerosis. For too many years I was angry and unable to be comfortable with myself.” (Mintz, 2010).

Self-Identification of Spousal Caregivers

Richard Anderson, past President of the Well Spouse Association, sums up the needs of spousal caregivers by quoting the motto of Well Spouse, “When one is sick, two need help.”  His experience as a spousal caregiver is typical of other long term spousal caregivers  (Well Spouse, 2010).

“My story, like that of so many spousal caregivers can be summed up by a mantra I adopted: WIT: Whatever it Takes –i.e. resilience in the face of many difficulties. Married to Vivienne for 31 years, I was her caregiver for 29 years. In the first decade she had many symptoms of a baffling illness that was finally diagnosed in 1985 as an auto-immune disorder, scleroderma, in a rare form that affects the internal organs. She died in 2004, only 1½ years after a diagnosis of liver cancer. Although some estimate that 80% of marriages in which one partner receives a diagnosis of chronic illness and/or disability break up, ours did not. She loved me and I loved her and remained committed the whole way through. But it got harder and harder. Change was a constant in our lives, mostly from her illness, and fatigue and other symptoms can strip the intimacy from a marriage, and turn it into more of a parent-child relationship. I felt increasingly alone, I had the feeling that so many caregivers have, that no one understands their situation. Self-identification — recognizing that one is a caregiver — and reaching out for help are difficult for many caregivers. Men take longer than women to do both. And of all family caregivers, spousal caregivers take the longest – due to the more intense nature of the intimacy relationship.” (Anderson, 2009).

Anderson speaks very eloquently on the self-identification problem, often referring to it as the “Keep it all Going, Superman” syndrome.

“Of all family caregivers, spousal caregivers are the last ones to recognize that they actually are doing caregiving. They can go on an incredibly long time picking up the pieces of the household tasks: cleaning, cooking, finances, shopping, as well as helping the ill partner in bouts of illness, or taking them to and from doctor’s appointments and hospital visits… and all this while holding down a full-time job, and sometimes moonlighting at another one as well to keep the finances from totally dwindling. But no, they don’t even consider they are caregivers. They are doing it out of love or duty, and somewhere along the line they lose themselves, and become absorbed by the battle against their spouse’s illness. This is the Superman complex and inevitably, it leads to a crisis point and burnout or even breakdown for the caregiver.” (Anderson, 2009).

Anderson also writes at length about what differentiates a spousal caregiver from other family caregivers. He identifies several key areas of concern.  First of all, spousal caregiving comes from a starting point of great intimacy, and it usually involves a loss of that very intimacy.

“This is probably the sine qua non of the spousal caregiver relationship. No other caregiver – whether of a parent, a child, a friend, a sibling or other further removed relationships starts out with the close intimacy that a couple has, right from the start.  And for spousal caregivers and their ill husbands, wives or partners, the almost universal experience is a loss of intimacy in the relationship. Whether they take note of it, or repress or deny it, this adds another layer of stress, from grieving the loss of the close relationship.” (Anderson, 2009).

Another major difference identified by Anderson is the financial impact that spousal caregiving brings. Most family caregivers live in two-income families, but for the spousal caregiver the norm is one income. Major out of pocket expenses for uncovered medical costs are also more common (Anderson, 2009).

Not all spousal caregivers work through a long period of adjustment followed by a more stable ‘self-realized’ role that lasts for years. Many spousal caregivers are caring for a person who has no hope of recovery from illness or even the possibility of anything but a steady decline in health, leading to a shift from home care to palliative care and home hospice, followed by death.  Since a spousal caregiver is taking care of their partner in life, it often becomes an intimate involvement in the end of the life of that most meaningful person in their life as well. The New England Journal of Medicine reports that there is a significant increase in death rates for spouses when their partner is hospitalized for a serious illness. More importantly for spousal caregivers, there is an even more significant increase in surviving spousal death rates that occurs after illness causes the death of their spouse (Allison and Christakis, 2006).

Compassion Fatigue

Compassion fatigue is a new term used to describe the secondary traumatic stress disorder experienced by many spousal caregivers.  The Compassion Fatigue Awareness Project (CFAP) is an excellent resource for spousal caregivers. They are working to raise caregiver awareness of the possible impacts that caring for a loved one can have on the caregiver. They define the signs of Compassion Fatigue clearly.

“Compassion Fatigue symptoms are normal displays of stress resulting from the care giving work you perform on a regular basis. While the symptoms are often disruptive, depressive, and irritating, an awareness of the symptoms and their negative effect on your life can lead to positive change, personal transformation, and a new resiliency. Reaching a point where you have control over your own life choices will take time and hard work. There is no magic involved. There is only a commitment to make your life the best it can be. ” (CFAP, 2012)

CFAP lists specific symptoms on Comapssion Fatigue, which include excessive blaming, bottled up emotions, isolation from others, substance abuse to mask feelings, compulsive behaviors, poor self-care, apathy and sadness,  and mental and physical tiredness. They have created a caregiver’s Bill of Rights that helps the process of self-realization and healing. (CFAP, 2012)

Strategic Solutions

The successful support of spousal caregivers can be broken down into several layers. Starting with individual action, it is important for spousal caregivers to feel as if they are not doing this alone. They often feel guilty about asking others for help. They often feel a need to keep their own pain to themselves, redirecting sympathy and concern to their spouse. Friends and family can help them with the process of self-realization by encouraging them to discuss it and helping them maintain their own physical and mental health. Simply being there when the spousal caregiver needs someone to talk too, or offering them a ride to a doctor’s appointment of their own, can make all the difference (LA Health, 2009).

Anderson feels that it is also the responsibility of those who have been spousal caregivers to explain this to others.

“Keeping it in the marriage, not talking, not realizing they are caregivers and need to take care of their own spiritual health… is it any wonder that spousal caregivers are under-recognized? A familiar complaint is, many people ask the caregiver ‘how is the ill spouse?’, but don’t ask how the caregiver is. ‘Is he/she better yet?’ is the cry from some, which shows a refusal to acknowledge the ever-presence of chronic illness. So, we need to come out of the closet, so to speak, tell friends, family, and workmates of what our needs as a caregiver are, so that they will know better how they can help.. And yes, there are a lot of good people about, who are willing to help. They just need to learn about the need, and then be asked!” (Anderson, 2009).

Government agencies, community-based organizations and employers can help ease the burden of spousal caregiving as well. They can help by actively educating the public concerning the health and financial consequences, and by increasing the availability of support and education programs. Health officials can develop care interventions designed to identify caregivers as patients, determine their specific needs and connect them with the support services they need.  Health professionals can participate actively in efforts to raise awareness of the importance of identifying the signs of depression and psychological distress in spousal caregivers who are their patients, and to ensure they have access to mental health services (LA Health, 2009).

At the highest level, policy makers across the U.S. need to recognize both the financial burden and the emotional stresses that are placed on spousal caregivers. Employer policies that allow for flexible work and telecommuting options for spousal caregivers can be a great help.  Tax credits for employers who provide job protection for workers who leave the workforce to become spousal caregivers can give them something to return to. The Family Medical Leave Act should be expanded to include domestic partnerships. Medicare and Medicaid should provide reimbursement for providers of spousal caregiver respite services (LA Health, 2009).

As the population of this country continues to age and life expectancies continue to increase, the need for spousal caregivers increases accordingly. Local, state and federal government can recognize and support the immense contribution of spousal caregivers by following the strategies recommended here.  Community health organizations can help by placing an emphasis on the health of spousal caregivers as patients themselves. Most importantly, friends and family can make sure that spousal caregivers do not feel alone. Communities, friends and families simply need to remember that “When one is sick, two need help.” (Wellspouse, 2010).

References

Allison, P. and Christakis, N. (2006). Mortality after the hospitalization of a spouse. New England Journal of Medicine. February 16, 2006. 354:719-730. Retrieved from http://www.nejm.org/doi/full/10.1056/NEJMsa050196#t=articleDiscussion

Anderson, R. 2009. The life of a well spouse. CarePages. Retrieved from http://www.carepages.com/blogs/lifeofwellspouse/posts/april_23_2008

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