Many Well Spouses expect that they will survive their ill spouse and thus become a Former Well Spouse (sometimes just called a œFormer). If, like me, you are the kind of person who looks to books and articles to help you with transitions, you might find yourself looking for a book entitled Well Spouse to Former Well Spouse to guide you in becoming a Former. While it is true that there is a lot of literature on grieving and that some of this literature is aimed specifically at spouses, I found that there is little or nothing directed specifically toward people who were long-term spousal caregivers. Also, I could not find any formal scientific studies of that psychological transition. Just as our lives as Well Spouses were misunderstood by most in society (if not totally invisible to them), the stages we go through during our transition from Well Spouses to Formers are also misrepresented, under-portrayed, and under-studied.  

This article is my attempt to rectify that situation by providing a guide that is drawn primarily from my observations about the emotional transitions that I, and some Well Spouses I have known, have experienced as we became Formers.

A rich source of  personal stories can be found by reading Mainstay, the Well Spouse Association™s newsletter, or by browsing through the threads in the œFormer Wellspouse section of the Well Spouse Online Forum.

My guide expands on the readily available grief literature to share how some Formers feel that their grief process was different from that of widows and widowers who had never identified themselves as Well Spouses. Also, as many Well Spouses share that they feel like they are living in a separate world from the mainstream œwell world and œat war with their partner™s illness, this article explores how the transition of Well Spouse to Former might be similar in many ways to the psychological transitions of veterans returning home from a war zone and of people returning to their homeland after living in a different country for a long time. 

I hope this article will help others as they transition from Well Spouse to Former by suggesting some larger context in which to place their journey. Even more, I hope that this article will prompt discussions and research on this transition.

The Transitions: An Overview

Many Formers share that, as they moved from Well Spouse to Former, they went through not just one transition, but three. These transitions are:

1. Grieving the loss of your spouse
2. Reentering the land of the well
3. Co-creating new intimate relationships

As with most emotional transitions, these transitions (and the stages or tasks in each of these transitions) do not follow a distinct separate order. You do not finish one before you begin another. Although people usually find they must be through the most painful, active part of their grieving before they even think of reentering the world or creating new relationships, Formers report that most of the time they felt like they were working all three of these transitions at once. No wonder the overall transition from Well Spouse to Former often feels overwhelming!

As with any other transition, you will probably find your transition from Well Spouse to Former made easier if you have support of others who have traveled this road before you - that is, other Formers. Talking with them and with understanding friends, family and counselors can provide you with validation and support, thus reducing your sense of loneliness and frustration. (You want to avoid the situation of trying to go through these transitions all by yourself as was common for returning Vietnam veterans and which, unfortunately, increased their chances of experiencing PTSD.).

As you go through your transition from Well Spouse to Former, know that you are not alone in whatever you are feeling and experiencing. Other Formers are going through this process too and having similar feelings and experiences. At the same time, remember that your journey is unique and that the suggestions people give you (including those in this article) are only suggestions and may or may not prove helpful. Only you can decide what is right for you.

If you find yourself feeling overwhelmed by emotional pain or œstuck in any stage, please talk to a professional counselor. As many of us learned when we were Well Spouses, you do not have to do this alone and even your closest friends and family members cannot always give you the support and help you need; sometimes it is best to turn to professionals for help.

Grieving the loss of your spouse

First and foremost, like other widowed people, long-term spousal caregivers grieve when their spouse dies. Since other grieving spouses can be your most helpful supporters as you grieve, many spousal grievers participate in a bereavement or grief group to help them through the grieving process.

As you will discover if you join a bereavement group where counselors often present material on the grief process, there are many different descriptions of that process. Some of those descriptions talk of stages and others of tasks. No matter what you read or hear about the grieving process, it is important to realize that your grieving experience is unique to you. Also, even though you might experience each stage as you grieve, you might not experience the stages in any particular order; and, most likely, you will visit some stages more than once. Also, though most of the emotions felt by grieving Well Spouses are the same as those of other grievers, the grief process sometimes differs for long-term spousal caregivers. Understanding those differences can help you through the grieving process.

Probably the most well-known description of the grief process is that described in Elizabeth Kubler-Ross' book, On Death and Dying. (Understanding her work is helpful, but keep in mind that her observations were of those who had been diagnosed with a terminal illness, not those mourning the death of a loved one.) The five stages she identified are: 1) Denial, 2) Anger, 3) Bargaining, 4) Depression, and 5) Acceptance. Other people see depression as something that comes and goes throughout the grieving process, so divide the grieving process into the following seven stages: (1) Shock or Disbelief, (2) Denial, (3) Bargaining, (4) Guilt, (5) Anger which might be directed toward the loss, family, friends, whatever the griever believed caused the death, the person who died, or a diety, (6) Resignation at the end of the depression indicating that the truth of the loss has been accepted, and (7) Acceptance and Hope. Additionally, some people suggest that although healthy grievers always get to the Acceptance stage, some also move from that stage to a final stage they call Empowerment. In the Empowerment stage, the loss is integrated as part of the person™s identity and that generates a newfound hunger for life that drives the person forward.

Dr. Roberta Temes in her book, Living With An Empty Chair: A Guide Through Grief, simplifies the description of the grief process to three behavioral stages: 1) Numbness (mechanical functioning and social insulation), 2) Disorganization (intensely painful feelings of loss), and 3) Reorganization (re-entry into a more 'normal' social life). Others talk about the tasks of grief, such as: 1) Accepting the reality of your loss, 2) Allowing yourself to experience the pain of grief, 3) Learning to adjust to your present environment where your loved one is missing, 4) Moving on by taking the emotional energy that you have invested in your grieving, and investing it in new relationships (not necessarily intimate ones with the opposite sex).

As a grieving Well Spouse, while reading this type of material and listening to others at bereavement or grief support groups, you might notice that you are experiencing your grief somewhat differently than others:

• If your ill spouse had been diagnosed with a progressive terminal illness, you might already have experienced what professionals sometimes call œanticipatory grieving. You might have played out the loss in your mind and your heart a million times. You might already be so practiced at grieving real and anticipated losses that you are sort of an œexpert at grieving. You probably lost friends, monies, and hobbies. You might have lost your job. For years, you probably watched your spouse™s body slowly losing function after function. Maybe your spouse lost his/her mind to dementia. Maybe your spouse even had a near death experience and then pulled back into life at the last possible moment, much to your psychological confusion. You might have already grieved the loss of the person whom you married. You might have even felt like a widow or widower, but not yet free. You might have felt like the spouse of a soldier who is MIA and œpresumed dead; and when your spouse died felt a sort of relief at having his/her status clarified.
   
• You might have lost sight of yourself after caring for another for so long. It might be hard for you to identify your feelings, wants and needs. You might have neglected your own physical health (which seemed so much better than your ill spouse™s health) and, thus, you might suddenly become aware of the fact that you are not in perfect health yourself. Just as wild animals lose their exploratory behaviors and pace in a circle when they live in a cage, from living an isolated existence with your late spouse, you may find you are uncomfortable initiating and exploring new behaviors. Having had your schedule determined by another™s unpredictable progressive illness for so long, you might find it difficult to initiate actions on your own behalf, to make long-term goals, or to act spontaneously.
   
• You might not have a support group. If your spouse was ill for a long time, you might have lost many friends and family members along the way and not made any new friends. Even if friends and family that once disappeared now reappear, you may have changed so much that you seem like strangers to one another; or your anger at them over disappearing may get in your way of letting them support you now. On the other hand, you may have made new friends while you were a spousal caregiver, and these new friends may think of you primarily as a caregiver for your late spouse and not know you as a healthy separate individual. In some cases, your most intimate friends may also be caregivers and find themselves either unable to identify with or envious of your new widowed, caregiver-free state.
   
• As a long-term spousal caregiver, you might have come to identify yourself as a member of the disabled community (or at least as a dual member of both the well and disabled communities). You might be more comfortable with the disability culture than you are with the mainstream well culture. Reentry shock is experienced when someone comes home from living in a different culture. You might experience reentry shock as you begin living in the mainstream world all of the time. As discussed in œReentering the land of the well (in the following section), processing reentry shock involves additional, slightly different emotional tasks than those involved in grieving the death of a person.
   
• As a Former, you might have particular challenges when forming new intimate relationships. You might find yourself ready to enter a relationship sooner than other widows or widowers are, or you might find yourself much more hesitant. When you do enter a relationship, you may have particular challenges regarding dependency and caregiver issues. You might be conflicted about the idea of entering a spousal relationship or marrying for reasons that are different from those given by widows and widowers who were not long-term spousal caregivers. These issues are discussed more fully in œCo-creating new intimate relationships, in the final section.

Reentering the land of the well

Reentry into the world after becoming a widow or widower is difficult for almost everyone. The general difficulties that people encounter with this are covered in bereavement and grief support groups and the general grief literature.

However, for Formers, reentry into the world can have special challenges. After years and years of living as a spousal caregiver in the country of the disabled, former spousal caregivers sometimes find that they, themselves, have become members of the disability culture and community and that they are more comfortable in that community than they are in the mainstream œwell community. While living life as Well Spouses, we have developed new attitudes, values and perceptions; as Chris McGonigle writes in Surviving Your Spouse's Chronic Illness:

Having been a Well Spouse marks us forever¦. We are permanently changed by the experience, and we should be. We have a piercing awareness of the shortness of life, and the uselessness of material things, and we take a new set of values into the life that lies ahead.

These values are often out of joint with the values of others who have never experienced the world of disability, illness and death. Consequently, as Formers, we might experience the reentry shock of trying to come œhome to the mainstream able-bodied or well culture after embracing the culture of the disabled and ill. For some of us, reentry shock is the final, inevitable part of the Well Spouse experience.

What does it mean to be part of the disability culture and the disability community?

In his book Nothing About Us Without Us, James I. Charlton describes the disability culture. Culture is learned behavior, essentially forced upon an individual by society. Learning to live with a disability (or learning to live with someone with a disability) exposes one to the disability culture. Depending on the severity or type of disability, people with disabilities experience the world in ways totally different from anyone else. They have their own language, sports (for example, quad rugby also called œmurderball), modes of transportation (rampvans), and vacation and housing criteria. They even have their own disability or œmedical/illness humor as exemplified by John Callahan™s cartoons in He Won™t Get Far on Foot; forum topics with titles like œ20 Non-medical Uses for Oxygen Tubing; and the lyrics to the song œBrown Sputum which is a take off on the Rolling Stone™s œBrown Sugar and was written by respiratory therapists to help people remember what the different colors of sputum mean.

 Belonging to a community is a choice. We typically think of communities as physical communities; and physical communities of the elderly or severely disabled do exist in assisted-living and nursing homes. However, the largest disabled community is a virtual community that resides on the Internet. This virtual community is structured through associations, forums, and chats for people with illnesses and disabilities. Family members of the disabled and ill also join together and form their own sub-community within the disability community in special forums like the œPartners forum on the http://www.cysticfibrosis.com/ site and in associations such as the Well Spouse Association at www.wellspouse.org .

Disability culture is unique in that no one is considered exempt from becoming disabled and that the culture crosses all economic, gender and race barriers. For example, some in the disability culture do not use the words œwell or œable-bodied for those without disabilities. Instead they use the term TAB (an acronym for œtemporarily able-bodied) since, whether by age or accident, many people currently living without disabilities will one day be living with them.

In the preface to her book Illness as a Metaphor, Susan Sontag wrote that ¦illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship in the kingdom of the well and in the kingdom of the sick. Although we all prefer (in the original) to use only the good passport, sooner or later each of us is obliged at least for a spell, to identify ourselves as citizens of that other place.

To use Sontag™s language, Well Spouses (like interpreters, hearing children of deaf parents, and personal care attendants) are often members of both the kingdom of the well and the kingdom of the sick. They are holders of dual citizenship who enter and leave unafraid of the œnight side.

Processing reentry shock when returning to the world of the well

Like students and others who expect to experience some form of culture shock when going abroad to live, or soldiers who expect to experience intense emotion when going off to battle, Well Spouses are not surprised by the shock they encounter when their ill spouse is first diagnosed and they both enter the land of the ill and disabled. However, many are caught by surprise by reentry shock (also called reverse culture shock) when they reenter the mainstream world “ the land of the well, able-bodied, or TABs (not that many in the mainstream community use the term œTAB). This reentry shock is the greatest for Formers who had a very limited daily contact with the mainstream community while their loved one was alive.

If, as a Former, you find yourself experiencing reentry shock, try to find others who have experienced the same thing. Also, familiarize yourself with the stages of reentry adjustment. Knowing that reentry has stages in the same way that grief does can provide you with a certain reassurance that your feelings are normal, that the process will eventually be over, and that, eventually, you will feel emotionally balanced and at ease in the mainstream world.

For a Former, processing reentry shock when returning from the world of the disabled to the world of the well involves experiencing the following stages of adjustment:

1. Disengagement
2. Excitement
3. Dampened Euphoria
4. Integration and Balance

Disengagement

Excitement

The second stage of reentry entails feelings of excitement as you reenter the mainstream community. You may be very pleased to be back in the œcountry of the well, and others may be equally delighted to have you back. Actually, you might find yourself euphoric. You may sort of œexplode back into the mainstream community. Your behavior may be so euphoric that it might seem manic and out-of-control to you or to your family and friends. At any rate, the pleasure is so great that you will have no trouble identifying when you enter this second stage of reentry.

However, at the end of this stage, you begin to painfully realize that after people express their pleasure at seeing you again, and listen politely to your stories for a while, they are not particularly interested in what your life was like as a Well Spouse and what you have learned from that experience. Instead, they would much prefer to talk about their own affairs. You may begin to feel that your reentry was too abrupt to allow you to integrate your Well Spouse experience into your persona.

Dampened Euphoria

You know you have reached the third stage when you begin to experience feelings of alienation, frustration and anger. Suddenly you feel irritated with others and impatient with your own inability to do things as well or as quickly as you had hoped. You may feel resentful, lonely, disoriented, and even helpless.

You feel like an outsider - a foreigner in the country of the well and able-bodied. You realize that though you never were entirely comfortable in the land of the disabled, you acculturated well enough that you are no longer comfortable in the land of the well either. You realize you can™t just œcome home again. You wonder if you will ever be able to feel at home in the mainstream well world again. You wonder if you are capable of leaving the world of the ill and disabled - or if you even really want to. You wonder how people live a bi-cultural life or immigrate to another country. You wonder if you will ever feel like you really belong anywhere ever again -or are you now œa person without a country; or if you have developed a new sense (like œsmell) and are now like a dog living in the world of people, rather than a person living in the world of people.

Now that you are living primarily in the mainstream world of the well, you find that it seems different from how you remembered it. People seem more self-centered and materialistic than you remembered. They often are (or seem to be) oblivious to the country of the disabled and the ill that exists parallel to their own country. They might be in total denial that they or their loved ones might ever become members of the disabled world (that is, they may not see themselves as TABs).

You might feel ambivalent about reducing or eliminating contact with the families living with disability who once were your major source of support, even though they don™t really understand what you are experiencing now. You remember how you felt abandoned when your healthy friends left your life when your late spouse became ill, and you feel guilty about even thinking of doing that to others now. Like a soldier returning from war, you might feel a sort of œsurvival guilt and, at the same time, miss the intensity of the battle and the intimacy you shared not only with your late spouse, but also with your other œarmy buddies such as other spousal caregivers and others living with your late spouse™s illness or disability. With your ill spouse gone, disabled community members may not recognize or accept you as a dual member of their community. Like a Vietnam veteran home within 24 hours of discharge, you might find yourself œdischarged from the disabled community without validation for or recognition of your time œin country and without any obvious way of identifying or contacting other œdischarged members.

If, while you were a Well Spouse for a long time during which you spent very little time in the mainstream community, you might truly have become more familiar with disability culture than mainstream culture. Your favorite sport might now be quad rugby; and you own the movie Murderball. Your favorite recently-read book might be Too Late to Die Young by Harriet McBryde Johnson. Your favorite restaurants might deliver or have drive-in windows for pick up, but few tables for dining. You might find that all of your long-time friends are members of the disabled community. Like a newly-returned veteran who spends his evenings at the Veterans™ Hall or emailing and chatting online with buddies still in the war zone, you might find yourself spending hours online in disability forums socializing with your friends in the disabled/ill community who seem to œget you, rather than leaving your computer to socialize with new people in the œwell world who seem œclueless.

You might have forgotten well culture skills and attitudes and feel incompetent in mainstream culture for that reason. You might feel like a small child who, barely knowing how to use a fork and knife, moved to Japan where she only used chopsticks, and now has returned to her western home where she is unable to eat spaghetti with a fork. Only for you, the skills you have forgotten are not as simple as eating with a fork, but instead skills like walking and talking aimlessly for hours, setting and working toward long-term goals, spending time totally alone without any responsibilities, making priorities for yourself rather than having an illness do that, staying in tip-top physical health, or keeping an almost totally hands-off approach as your friends are confronted by life™s challenges.

While being out with people from the well world, you might notice things that they don™t, and realize that they are not even interested in these things and find it œstrange that you are. For example, you might see a woman in a wheelchair and know immediately that she is a paraplegic with sensate toes because she is wearing soft, lightweight, particularly comfortable shoes on unmoving legs; or you see someone using a new type of oxygen concentrator and wonder whether or not it is approved for use on an airplane; or you identify a Well Spouse in the mall through that person™s interactions with their partner, rather than by noticing that their partner looks ill; or you spot someone with your late spouse™s illness when others cannot. If your ill spouse had issues with accessibility, you continue to notice threshold heights, steps, toilet heights, turning radius in bathrooms “ the list is endless and varied. Almost all Formers still notice and are enraged by cars illegally parked in handicapped spaces!

You might find that you have developed a sense of humor that is, at best, not understood by your well friends or, at worst, offensive. For example, you might suggest watching the movie Passion Fish as a comedy only to find that the well friends watching it with you find it depressing, or that you are laughing alone during many of its scenes. Or a friend might tell you a story about going to the emergency room for something that seems minor to you and include some outraged description of some ER œstrangeness, at which time you make a comment that you think of as a œpunch line to their experience, but that your friend finds tasteless or hears as a lack of empathy on your part.

Even more disconcerting, if you have not completely processed the most traumatic episodes in your Well Spouse life, you might even find you experience something like the post-traumatic stress disorder (PTSD) experienced by some veterans. Sounds and sights (for example, sirens, ambulances, nursing homes, and TV shows or movies about extreme disability, illness and death) might trigger flashbacks that instantaneously pull you out of the present right back into some old Well Spouse experience and feelings.

Integration and Balance

The goal of this final reentry stage is to keep the values and insights that you developed as a Well Spouse in the land of the disabled or ill world (although you may always feel a bit bicultural) while living comfortably in the mainstream community. At the end of this stage, you will have regained your balance, and your Well Spouse experience will become an integrated part of your life like other major life experiences.

You will know that this integration is occurring, not necessarily when you stop noticing the differences between the disabled or ill world and the mainstream world, but, instead, when noticing these differences does not trigger a difficult emotional response. As you become more comfortable in the mainstream community, you worry less about how well you are fitting in. You no longer feel you have to have your œobserver working all of the time in order to œidentify how you should act appropriately in that world. Instead, you begin to have the confidence that if you behave spontaneously, your behavior will be appropriate for whatever world you are in. By this time too, you will probably have some good friends who understand enough of the disability culture (either from personal experience or because of what you have shared with them) that you feel you can be your œwhole self with them.A major task at this stage is to determine how involved you want to be or can be in the disability community. Formers take a wide range of approaches to this decision. Some take the skills and their understanding of the disability culture that they have learned as Well Spouses and change careers to work with the disability community; others limit their contact to the community to only a few people with whom they have had long-time friendships or to one organization; and a few end all association with the disabled community.

For Formers whose late spouses had a genetic illness, this decision is particularly fraught with emotion. Other family members may have the same illness; and, consequently, any family gathering is, in essence, a disability community gathering. There is no way for these Formers to leave the disability community without also breaking off ties with their late spouse™s family. Some do break ties or distance themselves, and some do not. For most, that decision is based on things other than knowledge that remaining close to the family will keep them in the disability community. However, the fact that even reducing contact might seem like abandoning the disabled members of the family or other family caregivers can make it harder for a Former to decide what to do, or to act on that decision.By the end of stage four, you find that:

• You have reached some decision about how much you will be a part of the disability community:

If you have chosen to leave the disability community, you have done so with grace and with the knowledge that you can reenter it later if you need or want to.

If you have chosen to remain a part of the disability community, you can move back and forth from it to the mainstream well community with ease. For example, you can use mainstream humor in the well world and reserve your disabled culture jokes for the disabled world that understands them.

• Within the well world, you will no longer be shocked or outraged by people™s complaints about minor inconveniences or the time and money they spend on discretionary items such as hobbies, vacations, and upscale merchandise. You will be able to contain your comments about other differences that come to your attention. You will not judge those who have only lived in the land of the well as intentionally blind, self-centered or inferior “ instead you see them more as œinnocents.
   
  
• If, in earlier stages, you had difficulty making long term goals, acting spontaneously, making small talk, indulging yourself, or doing what you want to do just because you wanted to do it, you will find those skills have improved.

Co-creating new intimate relationships

As a Former, you might notice particular difficulties as you begin to co-create new intimate relationships. One reason for this is that frequently the relationship you had with your ill spouse had become so unbalanced by the end that it would have been described as dysfunctional if you had both been healthy. Because of this, you might find it difficult to embrace the give and take, discussions and negotiations that are part and parcel of a healthy relationship. At the very least, most Formers find that they are seriously out of practice living in healthy relationship with another.

You might notice that you have particular difficulty with what you see as œcaregiving in a relationship. Some Formers find that having been a caregiver for so long, they are most comfortable being a caregiver and select relationships where that is their major role. It is almost as though they find some way not to œretire from the œjob of caregiver. You might suspect that is true of you, if early on in your grieving process, you take a caregiver job like being a personal care attendant, or if you seem to be romantically attracted only to people living with major illnesses or disabilities who need your help. At the other extreme, some Formers find that they resist performing almost all caregiver tasks. If this is true for you, you might find yourself doing things like avoiding a friend who is recovering from minor surgery; or be uncomfortable doing someone else™s laundry while visiting a vacation cabin; serving dinner on TV trays during football season; or helping someone else with a home repair that you know how to do much better than they do. Since œbalance is everything and every healthy relationship involves a certain œquid pro quo, your goal in this area might be to learn how to be comfortable sometimes performing what you have come to think of as caregiver tasks for others who sometimes do the same for you.

Dependency issues always come into play when co-creating an intimate relationship, but as a Former these might now be major issues for you. You might have become so accustomed to making decisions by yourself (and not trusting your impaired ill spouse to participate) that now you are not comfortable sharing power at all - even by working with others in a collegial way or by relating with others on an equal basis. On the other hand, after years of being on the giving end of a relationship, you might now want to be taken care of and find yourself choosing to play a more passive or submissive role in your new relationships than you did before you were a Well Spouse. In the worst extreme case, you might find yourself choosing to play the œvictim role in an abusive, controlling relationship. In a more ordinary case, you find you want to be in a spousal-type relationship, but that you don™t want the œhead of household role. One Former described this by saying, œMy late husband™s illness forced me to become the unwilling ˜captain™ of our marriage ˜boat.™ I now realize, for the first time in my life, that I am most comfortable being ˜first mate™. As you work through your dependency issues, your goal in this area might be to learn how to be comfortable in mutually interdependent relationships.

Some Formers have reported moving into new relationships very soon after their ill spouse™s death. These Formers often say that they felt that their marriage (at least in the sense of being a partnership) had ended years before their spouse died. If you share this feeling, you might find that you finish your active grieving and become emotionally available to a new relationship sooner than other widows and widowers do. If you developed a deep non-romantic friendship with another while your ill spouse was alive, you might find this friendship quickly blossoming into love now that you are widowed and available. You might have had a secret love affair with another while your ill spouse was still alive and choose to make that relationship public as soon as you think it will be received at all favorably.

Other Formers have had a hard time letting go of their relationship with their late ill spouse and becoming available for a new relationship. For some Formers, living through the pain and difficulties of the illness with their ill spouse was sort of like being in a foxhole under fire together for years. Consequently, they became more intimate with their ill spouse than they had ever been with another person. It takes a long time for some people to open up, show their œtrue selves, and become psychologically intimate if they are not in a life or death situation. If this is true for you, then, like a veteran returning from combat, you will need to learn how to co-create intimacy without relying on crisis to create it. You will need to relearn how to live and love at a quieter, slower pace - with less drama and with fewer and less extreme emotional highs and lows. You will need to have the patience to wait for intimacy to develop between you and others.

For other Formers (particularly those whose ill spouses lost their mental capabilities), the Well Spouse, like an unrequited lover, maintained the relationship single-handedly without any real input from their ill spouse. If you kept the relationship going all by yourself this way, you may find that your ill spouse™s death almost cannot end the relationship for you. Instead, even more than most widows and widowers, you have to do the psychological work of letting go of your relationship with your ill spouse before you feel single and available. If, in addition, if you idealized your pre- or post-morbid spouse or marriage, you need to learn to remember them more realistically or else it will be almost impossible for a new flesh and blood person to measure up to your late spouse or for any new relationship to measure up to your relationship with your late spouse.

Formers may find they are even more resistant than other widows and widowers to the very idea of developing new intimate relationships that could lead to marriage. They often say that their resistance is not because they are afraid of their new partner leaving them or dying “ concerns frequently voiced by widows and widowers who were not long-term Well Spouses. (Actually, many Formers say they have lost their fear of physical abandonment and death.) Instead, Formers say that they don™t ever want to be in an intimate committed relationship again because: 1) They want to focus almost entirely on themselves now to balance the time they spent as a caregiver, or 2) They are afraid that a new partner would become ill or disabled and, once again, they would be a spousal caregiver. If you find yourself with these feelings, honor them. Focus on your personal growth and the development of close, but uncommitted relationships.

Other Formers want to be in a committed spousal-type relationship with another person, but don™t ever want to be married in a civil ceremony. They resist civil marriage because they don™t ever want to be in a relationship where society holds one partner legally or financially liable for the other. In particular, they do not ever again want to be in the situation where, if one of them became ill, the ill partner would become almost totally dependent on the well partner while the illness ate up the assets of both. Instead, they want a situation where the ill partner could qualify for benefits such as Medicaid without impoverishing the well partner, and where insurance companies (including Medicare and Medicaid) would provide homemakers and personal care home attendants for the ill partner. If you have these concerns, talk to your partner about them so that the two of you can work through them together and so that your partner won™t take your lack of enthusiasm for a civil marriage as rejection or a lack of enthusiasm for a committed, loving relationship.

In summary, have faith that you will not be alone in your new life. You may or may not ever again have a spousal-type relationship with someone. (It is not necessary or obligatory, after all.) However, you will co-create relationships that will provide you with the intimacy and support that you need.
  

Related Readings

Anderson SC. A critical analysis of the concept of codependency. Social Work 1994;39(6):677-685 (ADAI rp 06971).
 

Appel C. Co-dependency: a critical appraisal of social and cultural aspects from a feminist perspective. Contemporary Drug Problems 1991;18(4):673-686.

Charlton, James I. Nothing About Us Without Us: Disability Oppression and Empowerment Paperback University of California Press 2000 ISBN-13: 9780520224810 ISBN: 0520224817

Citron, James L, and Mendelson, Vija G. "Bringing it Home: Resources for Reentry Programming at the Campus Level" document on the Towsend University website http://wwwnew.towson.edu/studyabroad/docs/NAFSApdphandouts/reentry%20session%20packet.pdf (contains list of related websites and comprehensive bibliography)

Citron, James L. Short-term study abroad: Integration, third culture formation, and reentry. NAFSA: Association of International Educators (A NAFSA Conference Paper) 1996.

Feinberg, Linda. I'm Grieving as Fast as I Can: How Young Widows and Widowers Can Cope and Heal (Paperback) New Horizon Press; 1 edition (June 1, 1994) ISBN-10: 0882820958 ISBN-13: 978-0882820958Figley C, editor. Trauma and Its Wake. Routledge; 1 edition (1986) ISBN-10: 0876304315 ISBN-13: 978-0876304310.

Gray, John. Mars and Venus Starting Over: A Practical Guide for Finding Love Again After a Painful Breakup, Divorce, or the Loss of a Loved One (Paperback Harper Paperbacks; 1st edition (2005) ISBN-10: 0060930276 ISBN-13: 978-0060930271

Green B. Defining trauma: "Terminology and generic stressor dimensions". Journal of Applied Social Psychology 1990; 20 (20): 1632-1642.

Herman Judith Lewis. Trauma and Recovery. Paperback. Rivers Oram Press/Pandora List; New Ed edition (August 2001) ISBN-10: 0863584306 ISBN-13: 978-0863584305

Kubler-Ross, Elizabeth. On Death and Dying .Scribner, Old Tappan, New Jersey, U.S.A. Date Published: 1997 ISBN-13: 9780684839387 ISBN: 0684839385

Lindy Jacob D. Vietnam: A Casebook. Routledge; 1 edition (November 1, 1987) ISBN-10: 0876304714 ISBN-13: 978-0876304716.

McGonigle, Chris. Surviving Your Spouse's Chronic Illness: a Compassionate Guide (paperback) Henry Holt& Co., New York Date Published: 1999 ISBN-13: 9780805055733 ISBN: 0805055738 

Norman, Elizabeth. Women at War: The Story of Fifty Military Nurses Who Served in Vietnam (Studies in Health, Illness, and Caregiving) (Paperback) University of Pennsylvania Press (August 1990) ISBN-10: 0812213173 ISBN-13: 978-0812213171

Rando, Therese A. Clinical dimensions of anticipatory mourning : theory and practice in working with the dying, their loved ones, and their caregivers, Champaign, Ill. : Research Press, 2000. ISBN: 0878223800 9780878223800

Smith, Carolyn D., editor. Strangers At Home: Essays on the Effects of Living Overseas and Coming "Home" to a Strange Land (Paperback)  Aletheia (1996) ISBN-10: 0963926047 ISBN-13: 978-0963926043

Sontag, Susan. Illness as Metaphor and Aids and Its Metaphors : Paperback Anchor, 1989,ISBN-13: 9780385267052 ISBN: 0385267053Storti, Craig.  The art of coming home. Publisher: Nicholas Brealey Publishing; 2Rev Ed edition (2001) ISBN-10: 1857882970 ISBN-13: 978-1857882971

Margaret S. Stroebe, Margaret S., Stroebe, Wolfgang, and Hansson, Robert O., editors Handbook of Bereavement: Theory, Research, and Intervention (Paperback)Cambridge University Press; 1 edition (March 26, 1993) ISBN-10: 0521448530 ISBN-13: 978-0521448536

Temes, Roberta. Living With An Empty Chair: A Guide Through Grief.  New Horizon Press Publishers, Incorporated, Far Hills, New Jersey, U.S.A., 1989 ISBN-13: 9780882820026 ISBN: 0882820028

The National Collaborating Centre for Mental Health. Post-traumatic Stress Disorder (Paperback) Gaskell (2005) ISBN-10: 190467125X ISBN-13: 978-1904671251

Trauma And The Vietnam War Generation: Report Of Findings From The National Vietnam Veterans Readjustment Study Routledge; 1990) ISBN-10: 0876305737 ISBN-13: 978-0876305737

Ward PJ. Intertwined confusion : mapping the journey : through relationship loss and co-dependent grief. Focus Chemically Dependent Families 1988/1989;11(6):18-19,44-7

Yule, William, editor. Post-Traumatic Stress Disorders: Concepts and Therapy (Paperback) Wiley; 1 edition (1999) ISBN-10: 0471970808 ISBN-13: 978-0471970804