One Illness; Two Victims

This comment just came in on an older post. I think it is well worth re-posting:

Married 36 years and the last 7 years my husband has been a paraplegic due to a mass on his spinal cord. There are TWO victims here. Him and I, and I feel like I am paralyzed right in the middle of my life. I wish I were the one dying or dead. I was not happily married to him before his surgery and I was waiting for the kids to at least be in college before I left the marriage. Now I am stuck taking care of a man who hit me and verbally abused me up until the day he got sick. Now I do it to myself because I am too much of a wimp to leave him. Thank you for letting me say this out loud, my mom died 6 years ago and I have no one to hear my pain.

I have found readers of this blog to be very sensitive to the complexities of living with illness as part of your relationship. Solutions can be elusive. Problems are complicated and simple advice that usually has the word "just" in it (like - "why don't you just leave him" or "why don't you just eat less and get some exercise) often isn't substantive enough to be of real help.

What thinking can you offer the writer of the comment above? What have you learned from your experiences as ill partner or well, caretaking partner that you can share with this author?

How To Claim Your Alone Time

How do you let your partner know that you need alone time?

Chronic illness is a demanding intrusion. It can determine when you and your partner can go to a movie, what you can eat, and even when you can be intimate. At the same time, illness can force intimacy in areas where it may not be wanted -- discussion of bodily functions, acts of physical caretaking like dressing or washing, exposing helplessness.

The experiences of the ill and well partner are different. Both may feel sadness and anger - at the illness and at each other. But the experiences that provoke strong feelings can be different. And both may need a break from each other in order to simply be quiet or to re-energize or to not feel obligated or dependent.

How do you take a break from your partner without wounding him or her? How do you claim your alone time without without giving the impression that you are rejecting your partner?

For some couples this may be easy. They may have even built alone time into their weekly routines. For others, especially where communication is more labored, taking alone time can be more fraught.

Richard and I both require lots of alone time. That is our nature and it was part of our relationship before chronic pain entered our picture. So now, if one of us closes the door or walks out of the room, the other is not wounded or offended. Sometimes we will say to each other, "Time for alone time."

Do you need alone time? How do you communicate this to your partner?

Being Selfish

Richard has a rash on his feet. It's gray and white. It puddles mostly around his toes. It looks like pond scum. He is treating it with ointments and antibiotics. He has to steel himself to keep from scratching it. I have very little sympathy.

In fact, I am a bit disgusted. Mostly avoidant. I don't want it to get on me, anywhere. I want it to go away. And if it is on him, I want him to keep away.

I am being utterly selfish. And, it feels OK. Maybe even good.

I also know that this is about as minor an ailment as it gets. And it will go away with no harm done.

But I am asking myself, if this kind of response is in me for an insignificant thing, will it be in me for more serious health matters? Have I already been hard-hearted when he suffered with cardiac symptoms or vision problems? How awful is that?

Is it OK to be ungenerous when your sweetie is ailing?

I would tell anyone else -- of course it's OK. It's normal to have moments of wanting to run away. And it's healthy to actually get away from time to time. Replenish yourself before your well of empathy runs dry.

But right now, I don't feel as liberated as I did when I began to write this post. I think I'll go find Richard and tell him that even though I don't really care about his foot condition, I do care about him.

Taking A Break

Caretakers - when do you take a break? I don't mean the kind of break where you go to work, or drive the kids to soccer practice, or sit down and close your eyes for a moment. Nor do I mean a solely a physical or geographical break. I also mean an emotional break. When do you take the time and the space to separate yourself from the labors of caretaking and from the accompanying heartache, anger, and emotional weariness?

And ill partners -- you may not be able to take a break from your own body and its symptoms, but do you take a break from the emotional suffering illness arouses?

For my partner's birthday, I gave us both the present of attending a four hour long program given by a renowned Tibetan Tulku and meditation master. The topic was loving-kindness. We are not Buddhists or meditators, but I thought we both needed some spiritual rescue from the all-encompassing fatigue of living with illness.

He spoke for the first two hours about pure love and the importance of focusing on joy. In truth, I couldn't capture much of what he said because the rhythmic way in which he spoke was already taking me to another dimension.

The final two hours he talked us through a guided meditation. I don't think Richard or I have sat still for two hours, in such quiet and peace, in years, maybe decades. Usually, when I'm not distracted or moving, my pain finds ways of reminding me that it has not yet gone away.

This experience (of guided meditation from a master) was much more than an unexpected break from the trivialities and the calamities of illness. It was a boost up to another level of experiencing. We focused on receiving joy and love from a pure source; of infusing every cell in our body with the light of that love; and then pouring that light out into the world to reach every living being.

For a couple of hours, we were part of a cycle that had nothing to do with illness or pain. A cycle that sustained us and engaged us as conduits, participating in creating something bigger than ourselves and our worries.

I have tried to go back to that space in the weeks since we attended this program. On my own, the light is a little dimmer, and my connection to the whole is more frayed. But I do get a break.

Have you found a way to get a break? What is your way?

Unwanted Help

How do you deal with unwanted help?

The good intentions of friends and family in offering emotional and tactical help can sometimes be welcome, and can sometimes be just another burden to deal with when you or your sweetie are suffering from illness or pain.

When I was very ill, I had a friend who would call every day to ask how I was doing and then launch into her stories about pain, in which she generally featured as main character. It was wretched enough to have her use my suffering as a platform for her narratives. It was doubly wretched to be asked, every day - "How are you doing?" That question was just salt in the wound and served not to comfort but to remind me that I was not doing well at all, and that I had no idea when or if my pain condition would change.

I had another friend who called or emailed most every day and simply said, "I'm thinking of you." That was lovely. It felt like the sweet touch of a cool hand on my desperate brow. Not intruding. Not insisting I engage in any way. Just a brief loving contact that I knew could be extended should I need that.

Many people just don't know how to talk to someone who has a serious illness. Out of their own nervousness (and for some, out of their blind self-involvement), they ask too many questions, tell too many stories, offer to do too much. These offers, even if meant benevolently, become extra weight for the ill person to carry. When all your resilience is tied up in just holding your own self together, offers and questions can be the extra straws that break you down instead of fortifying you.

So how do you deal with family and friends who load you down with well-intention extra straws?

Firstly, be aware that this is happening. Don't just respond out of hospitality or habit, and then wind up entangled in a conversation you don't really want to have.

Secondly, know that your taking care of yourself takes precedence over another's hurt feelings. If you need to shield yourself from another's well-intentioned but unhelpful involvement, you must do so, or pay the price later in increased tiredness, pain, depletion.

Thirdly, communicate. People will inadvertently intrude. They don't know what is helpful and what is not. And what is helpful will change over time. Communicate - in person, by email, through a trusted third party -- and let friends and family know what your needs are. Do you want to be left alone? Do you want people to stay in touch, but not to expect any response from you? Do you want people to send you articles or other resources they have found about your condition? Do you want visitors to not drop by without advance notice? Do you want help with specific activities (e.g. drives to medical appointment, grocery shopping, child care)?

Fourthly, know that these efforts come from love. You can appreciate and express gratitude for the love, while setting limits on the involvement.

What stories and ideas do you have for letting your family and friends know what you want and don't want from them?

Finally, an Article about the Caregiver

No news to most of us who either are the caregiver and know how powerful and endearing and demanding a role that is, or are the ill partner who witnesses the caregiver's fatigue. But this article in the New York Times articulates well how vital it is, especially for health professionals, to pay some attention to the caregiver.

Offering Care for the Caregiver

"......For all our assertions about the importance of caring in what we do, doctors as a profession have been slow to recognize family members and loved ones who care for patients at home. These “family caregivers” do work that is complex, physically challenging and critical to a patient’s overall well-being, like dressing wounds, dispensing medication, and feeding, bathing and dressing those who can no longer do so themselves.

Many of these caregiving tasks were once the purview of doctors and nurses, a central component of the “caring professions.” But over the past century, as these duties increasingly fell to individuals with little or no training, doctors and even some nurses began to confer less importance, and status, to the work of caregiving.

It comes as no surprise, then, that physicians now rarely, if ever, learn about what a family caregiver or health care aide must do unless they are faced with caring for their own loved ones. We doctors don’t know or aren’t always fully aware of what it takes to care for a patient after we leave the room......"

"........“Normally everyone is always focused on the patient, patient autonomy and the patient’s wishes in terms of the ethical standpoint,” said Dr. Virginia L. Hood, chairwoman of the Ethics, Professionalism and Human Rights Committee of the American College of Physicians and one of the paper’s authors. “But family caregivers are an important part of the health care team, too. We need to value these caregivers better, think about their needs and consider how they are central to the patient’s care, not just someone who happens to be pushing the wheelchair.”

Of particular importance is understanding how the work of caregiving can also give rise to a new set of medical issues: those of the caregiver....."

Caregivers: Do You Tell Your Ill Partner About Your Stress?

Typically, the bulk of the attention goes to the partner who has the health condition.

Doctors, nurses, clinics, & hospitals make appointments with the ill partner. They run tests on the ill partner to assess the status of the condition. At home, care providers - aides, physical therapists, visiting nurses - focus on the ill partner to find out how s/he is doing and to assess what adjustments might need to be made in her/his care.

Family members, colleagues, and friends call to find out how the ill partner is doing. Even empathic pets tend to curl up next to the ill partner.

And even the well partner focuses most of his/her attention on taking care of the comfort and daily living needs of the ill partner.

So - who is paying attention to the well partner, to the caregiving partner?

Often the answer is no one, not really, not in a sustained way. Yet the physical and emotional stress the caregiving partner suffers is huge. And often s/he feels s/he must keep it boxed up, put on a shelf for later; not to be shared with the ill partner for fear of overtaxing him/her.

The caregiver has not only lost the partner s/he knew, along with the dream of a predictable future, but s/he has also lost his/her best friend and confidante.

Caregivers -- to what extent do you share your stress, your burdens, your worries, your reality with your ill partner? If you have, what has been the result, for you and for your ill partner? If you don't share your stress with your ill partner, what do you do with it?

Caregivers and Suicide

excerpted from the Tampa Tribune:

Caregivers may look to suicide

By Gary Joseph LeBlanc

The rate of homicide-suicide in senior adult couples is 50 percent higher than younger adults. Those who suffer from Alzheimer's, the so-called Caregiver-Dependent Homicide-Suicides make up a large percentage of senior deaths. When a couple who has been married for a long period of time becomes totally dependent upon one another and one or both become irreversibly ill, homicide-suicide may appear to be the only answer. Periods of deep depression may trigger feelings of utter hopelessness, especially on the part of the husband who feels helpless in realizing he can no longer fulfill what deems to be his husbandly duties. This usually has the husband initiating the act. Do not interpret this as a suicide pact; this is an act of desperation and hopelessness.

One caregiver resource report showed nearly 60 percent of caregivers experience clinical signs of depression and 40 percent of former caregivers have mild to severe depression which can last up to three years after the patient has died.

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My Commentary:

Honestly, who doesn't think of suicide when you're living with a debilitating chronic condition that sucks the joy and vitality out of your life - whether you're the patient or the caregiver. I know I have found myself in moments of unrelenting pain thinking about death as the only cure. Having the option of suicide always available ironically allowed me to chose life -- because I knew that death was within a few pill's reach away. I could always swallow that handful tomorrow.

I would really like to know - have you ever considered suicide as your "cure?" What kept you from doing it? What thoughts ran through your mind that made you chose life?

How Much Should the Well, Caretaking Partner Share with the Ill Partner?

Here's a question that some comments caused me to ponder:

How much should the well, caretaking partner share with the ill partner?

The ill partner is suffering from body pain, or fevers, or headaches, or cancer, or from the side effects of treatments. He or she has had to give up full engagement with the world and can no longer do his/her old job or hop into a car to visit friends or go to the movies. Spontaneity has been derailed by the medication regimen. Freedom has been shrunk to fit within the boundaries set by the illness. And, as if this weren't enough, the ill partner is, understandably, depressed over his/her symptoms and limitations.

The well partner has assumed more and more of the couple's dealings with the outside world. He/she does the household chores, negotiates with the insurance company, oversees the kids, tries to stay on top of bills & budgets, and goes to work. And, as if this weren't enough, he/she also takes care of the ill partner. He/she helps the ill partner with the daily living activities the ill partner can no longer perform solo. This can include everything from monitoring medication to waking up 4 times a night to help the ill partner get to the commode.

The well partner is physically exhausted and emotionally bone dry. He/she is so busy every moment of the day that he/she can't stop to spare a tear for his/her own sorrow and worry. In those limited moments when there is a brief respite from the storm, he/she starts to feel choked by stress. It is a physical sensation -- as if all the air has been pulled from his/her lungs.

The well partner doesn't know how he/she can go on another minute and at the same time, he/she knows he/she will find the strength somewhere, some how, to continue. He/she doesn't talk to the ill partner about his/her depletion and anxiety because he/she is afraid the ill partner can't bear it -- that it would push the ill partner over some ill-defined edge into full bore breakdown.

This scenario may fit yours, or it may not. Whatever your circumstances are, I'd like to know:

If you are the well, caretaking partner, how much do you share with your ill partner about your situation? What are your choices based on?

If you are the ill partner, how much do you want to be protected from your well partner's state, and how much would you want him/her to share with you? What are your wishes based on?

Well Spouse Caregivers: Do You Ever Say, "Enough!"

The piece below is one reader's comments to my blog post about back pain. I post it here because I think she not only raises a crucial question about the caregiver's responsibility, but she does so with great awareness, openness, and articulateness. And she is asking for support and advice. So please, if this piece speaks to you, help her out by sharing your experiences and ideas. (btw - she gave me permission to repost her comments here)


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My husband and I have been married 18 years. He was in a car accident 12 years ago that left him with chronic back pain. After several surgeries he was left with a failed fusion. We seemed to muddle through our new life ok for a while. But as of late I see him diminishing so much mentally.

We have two children that he simply does not have the "energy to parent" and my emotional needs were put on the back burner many years ago. I have voiced all of this to him repeatedly over the last three years but nothing seems to have the status that his pain has in his life.

I am 38 and he has basically turned our bedroom into the extent of his accessible world. Recently he went past my limit and I had to ask him to leave. He has been living at another house for over a month. I just feel so empty of patience for him. I feel so uncomfortable about making him get out of his comfort zone. But at what point do you just give up when your partner can not or will not see past their own nose?

He is seeing a counselor and is on antidepressants since he left. He has always suffered from some level of depression but of course it is very severe at this time. He is upset with me that I am calling all the shots.

However when someone withdraws form life like he has, they force you into that position. You become the only one that is able to fill the car up with gas or make appointments or pay bills. Every aspect of life outside the house becomes your area.

I am wondering if between the medication, depression and pain (his counselor tells me that over time chronic pain patients brains can actually atrophy?) that he is just not capable of any husband responsibilities. And if that is the case what do you do with a man that is mobile but completely stagnant?

Is there anyone else out there on my side of the situation that has been married a long while still loves their spouse but is past lonely, past hurt, past frustrated? How are you dealing with it?

How Much Do You Involve Your Partner in Health Care Decisions?

When I was at my worst, floundering around with a chronic pain condition with no answers and no direction, Richard came with me to every appointment - from medical specialists to homeopathist. On the practical side, I couldn't drive or remember too clearly, so he was chauffeur and memory. I asked practitioners questions out of a desperate hope for the one pill that would make it all go away. He asked questions that came from a rational, analytic mind. He was as current with my health care status and information as I was. I could not have made it without this kind of support (along with other kinds).

I am curious. To what extent do you, the ill partner, involve your well partner in your health care experiences? Does he/she go with you to appointments? Do research? Stand on the sidelines? Wait for you to bring up health issues? Absent him/herself? How do you balance your health care and your relationship?

And for the well partner - how much do you get involved in your ill partner's medical experiences and day-to-day care needs? How much information do you want to know? Do you sometimes feel left out or frustrated with your partner's style of getting (or not getting) care?

No judgments here. There is no generic right way of connecting or disconnecting around health care activities. What worked for me and Richard might seem too enmeshed and could drive another couple crazy.

What works for you?

Caring for an Ill Partner May Extend Your Life

We know how stressful providing care can be, especially if it's your partner who is ill. Here is info from a study reported on MSNBC that found that caregiving may actually lead to a longer life for the caregiver.

What do you think?
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To see if caregiving was truly beneficial to the caregiver, Stephanie Brown (a social psychologist and an assistant professor in the department of internal medicine at the University of Michigan) and her colleagues scrutinized data from 1,688 couples who were at least 70 years old. Over a seven year period, the elderly couples were surveyed four times. During each survey, husbands and wives were asked whether they either provided or received help with such daily activities as eating, dressing, bathing, walking across the room, or using the toilet. They were also asked who performed household tasks such as grocery shopping, managing money and meal preparation.

Brown and her colleagues found that if you accounted for the negative impact of stressing over a loved one’s illness, that caregiving actually led to longer life. During the course of the study, people who spent at least 14 hours a week caring for a sick spouse were almost 30 percent less likely to die during the study period than those who spent no time helping, according to the research recently published in Psychological Science.

The research by Brown and her colleagues fits in with results from studies showing that animals release higher levels of a hormone called oxytocin when they are parenting. That hormone leads to lower levels of stress-linked substances, Brown says. It also makes sense in light of studies showing that people who volunteer tend to live longer than those who don’t, she adds.

When Pain Returns

These have been rough times. For the past six weeks, I've been feeling ripples of the old pain coming back. They usually slide around at a level 3 or 4, which means I can still follow a conversation and drive by myself. On some days they crescendo to a 7 or 8, which means I lay very still and try to make myself as small as possible, as if by doing so I can corral the pain into a narrower orbit.

Each day I wake up with the fervent belief that today will be the turning point. By late afternoon, I'm looking at my array of medications and debating whether I should take them in order of potency or just chug them down like a drunk doing shots. Pain will do that to you.

Richard so easily slips back into sage caretaker mode. We have been on this ride so many times that he automatically knows how to balance intrusion and distance. He also know how to ask to be invited to enter my orbit of pain, rather than clumsily assault me with volleys of helpfulness.

He will say, "Can I sit with you now or do you want to be alone?" "Do you want my help to problem solve about medication or do you want me to stay out of it?" "How do you want me to tell you if I think you are making a mistake?" And most of all, "How can I help you, my love?"

His presence, his questions anchor me to possibility, to choices that point to a realm beyond the pain. He can't actively stop me, but his steadfastness deters me from plunging into the vortex, which is always a pain spike away.

These have been rough times. But at least I am measuring this experience by time and not by eternity. I do now know that I will be helped, and I will, thankfully, find the next path out of pain.

Alzheimer's Caregivers: The Hidden Patient

When any chronic illness takes root in a family, everyone gets sick. But the one whose suffering is often equal to the patient's, and is often ignored, is that of the caregiver. Dementia caregivers in particular, often the partner, suffer physical exhaustion, emotional depletion, and chronic depression.


from Johns Hopkins Health Alerts:

Caregivers -- The Hidden Patients

Approximately 80% of dementia patients are cared for by family members. That's millions of family members who provide care for a parent or relative, many of whom must balance these duties with the demands of their full-time jobs and other family members. If you are caring for a family member or friend with Alzheimer's disease, this Special Report from a recent Johns Hopkins Memory Bulletin offers practical support and advice.

With our population aging and the number of Alzheimer's disease patients in this country predicted to steadily increase over the next two decades from 5.5 million today, the number of caregivers will have to increase as well. If you are not a caregiver already, the chances are high that you will become one at some point.

Studies that measure depression or distress in caregivers report that rates of these symptoms are two to three times higher in dementia caregivers than in the general population. Other studies reveal that social isolation and family disagreements are more prevalent in Alzheimer's caregiver families than in similar families who are not caring for someone with dementia. What kinds of emotional problems do caregivers of Alzheimer's patients have? Many experience a mixture of feelings, including frustration, sadness, anger, irritability, helplessness, guilt, and depression.

Being a caregiver for a family member or friend with Alzheimer's disease can be so stressful that doctors often think of caregivers as "hidden patients." Because caregivers are often faced with overwhelming day-to-day responsibilities, many stop going in for medical checkups, self-medicate their anxieties with alcohol, don't exercise, and eat poorly.

Not surprisingly, Alzheimer's disease caregiver stress takes a heavy toll. Caregiver stress and burnout symptoms are very similar to those of depression. They include:

• Denial . . . about Alzheimer's disease and its effect on the person affected. "I know Mom will get better. They must have made a mistake."
• Anger . . . at the person with Alzheimer's disease and others. "If he asks me that question once more, I will scream!"
• Withdrawing socially . . . you no longer want to stay in touch with friends or participate in activities you once enjoyed. "I don't care about getting together with the neighbors anymore."
• Anxiety . . . about facing another day with the Alzheimer's patient and what the future holds. "I'm worried about what will happen when I can no longer provide care."
• Despair . . . you feel sad and hopeless much of the time. "I don't care anymore."
• Exhaustion . . . you barely have the energy to complete your daily tasks. "I don't have the energy to do anything anymore."
• Sleeplessness . . . you wake up in the middle of the night or have nightmares and stressful dreams. "I rarely sleep through the night, listening to hear if Dad is out of bed."
• Emotional reactions . . . you cry at minor upsets; you are often irritable. "I cried when the grocery store was out of my favorite cereal. Then I yelled at the clerk."
• Lack of concentration . . . you have trouble focusing, and you find it difficult to complete complex tasks. "I used to do the daily crossword. Now I am lucky if I can concentrate enough to solve one quarter of it."
• Health problems . . . you may lose or gain weight, get sick more often (colds, flu), you may develop chronic health problems (backaches, headaches, high blood pressure). "Since the spring, I have had either a cold or the flu. I just can't seem to shake it."

If you're experiencing any of these symptoms, consider contacting an Alzheimer's disease support group, talking with your religious or spiritual leader, consulting with your primary care physician, or making an appointment with a counselor. Here are some good resources to consider:

• The Alzheimer's Association (225 N. Michigan Ave., Fl. 17, Chicago, IL 60601- 7633; (800) 272-3900). This fantastic group has been at the forefront of helping caregivers and supporting research for more than 25 years.

• Local medical centers. Some medical centers offer caregiver courses that teach practical techniques for managing the anxiety, agitation, aggression, and other upsetting behaviors that people with Alzheimer's disease may exhibit.

• Alzheimer's support groups. Alzheimer's support groups are great sources of helpful information, solace, and compassion. The other people in these groups will understand the complex and sometimes conflicting mix of emotions that Alzheimer's disease caregiving engenders, such as grief, anger, resentment, helplessness, embarrassment, guilt, despair, and even suicidal thoughts.

Caretakers

Over the past ten years, I have talked to many caretakers of ill partners. Many have been angelic; many have been depleted; all, in their own ways, are heroic. Here is a montage of what I have heard. I am interested in what you have to add from your experience



How profound and humbling and degrading to prepare bland, easily digestible foods and spoon feed them to your partner who on that day at that time is too weak or feverish or pained to be able to feed himself. To wipe the sweat from his face after rounds of chemo. To maneuver him into the shower and wash the urine that leaked down his legs from a bladder no longer control in his control. To run to his side when he calls out, fearing that, this time, something really bad happened.

How sacred it feels to read aloud to him from his favorite novel until the strain etched in his face by pain slowly softens, and he slides into sleep. To hear him snore is the sweetest song.

How desperate and hopeful and tedious it feels to discuss endlessly the algorithms of treatment options. Should we (not you) stop this medication, which seems to be losing momentum, and switch to that medicine, which has untested side effects? Should we travel to Johns Hopkins or the Mayo Clinic or the Cleveland Clinic to see the specialist whose monograph on gene therapy or angiogenesis we stumbled across in one of hundreds of web searches? Would it be bad or good to combine acupuncture, Chinese herbs, and chemotherapy? How do we know whom to trust?

How rageful it is to lose the time you were supposed to have, the money that was to build a retirement cottage on the lake, the thousands of moments that were supposed to flow without constraint from one mindless activity to the next.

How tragic when your sacrifices are met with indifference, resentment, or manipulation. When the sick person instead of gratitude, shoves his resentment at his own condition in your face, onto your shoulders, inside your head, and demands of you what will never again be his. And when family and community expect you, without permission, to truncate your world in order to extend his comfort and safety. And when you berate yourself for an instance of selfishness, and eventually have been worn so thin that you can no longer distinguish between selfish and selfless. When automatic pilot takes over your behavior and you shut down all feeling except anxiety.

How relieving and terribly lonely it is when it ends. And what a long way it is back to rebuilding yourself.

On NPR: Championing The Caregiver's Cause

Excellent segment on NPR, Fresh Air. Terry Gross interviewed Carol Levine about being the primary caretaker for her husband in a piece called, "Carol Levine, Championing the Caregiver's Cause."

"For 17 years, home health-care advocate Carol Levine never truly left her job. Levine spent her work days at the United Hospital Fund, focusing on the needs of family caregivers. When she came home, she devoted her time to caring for her housebound husband, who was seriously injured in a car accident in 1990.

In 2007, Levine's husband died. It was, she tells Terry Gross, as if she had lost her husband twice: once in the accident, and then once again when he actually died."

Levine also edited the book Always On Call: When Illness Turns Families Into Caregivers.

The Caregiver Burden

A well written post on the About A Nurse blog written from the perspective of the caregiver:

Friday Fiction #3: Drained

Too often, the caregiver is neglected, taken for granted. Whenever there is serious illness in one partner, at least two, if not more, lives are dislocated.

I would really like to hear from any caregivers out there. What is your reaction to this piece "Drained?" Which parts of it reflect what you think or feel or experience? How do you manage?

What Do You Do When the Caregiver Gets Sick?

When I was at one of many low points with my chronic pain condition, while my doctors remained mystified, and I was still chasing after every new wonder treatment I read about on dubious web sites, Richard got sick. My sweetie, my caretaker, the only one I let inside my black hole of pain and fear, started sniffling and coughing.

I was in a very precarious state. I had been sick long enough to finally know that this nightmare was not a random spasm that would just unwind and disappear. But I hadn't yet found the right balance of care and was still cobbling together a patchwork of treatments that weren't very coherent, and were, at times, contradictory. On the alternative front, my chiropractor instructed me not to bend forward, while my physical therapist prescribed a routine that included toe touches. My homeopath warned me that my acupuncture might be canceling out the effect of her remedies. My acupuncturist scoffed at the idea of anyone seeing a homeopath. My neurologist, gastroenterologist, gynecologist, and uro-gynecologist, had resigned their place on my treatment team with the good news that they could find nothing wrong. All this left me flailing around for an anchor point. Richard was it.

Day by day, his nose got runnier, his eyes blearier, and his cough more pneumonic. This wasn't our contract. I was the sick one, and he was my hero. My pain claimed all the illness space. His cold was puny, a two-bit player in a high stakes game. He took antihistamines and tried to ignore any further leakage. Whenever I asked him how he was feeling, he would wipe his nose and wheeze, "OK."

But there was one aspect of his cold that we couldn't ignore. The contagion. The possibility of infusing his cold into my already mangled nervous and immune systems was untenable, for both of us. The only protection was to remain separated by at least two feet of air or a closed door.

We decided to try this approach. However, after a few days, I only felt more alone in my misery, and Richard felt bereft. He was unable to perform his role of comforter, which was his only shield against his sense of his own helplessness to make me better.

We kept this segregation going for a week -- speaking to each other across thresholds, sitting on opposite sides of the couch. Richard gargled salt water and popped vitamin C and echinacea, as I watched from a distance. The loneliness we each felt was brutal, and we knew we couldn't endure it much longer.

Then, Richard's brother telephoned. He listened as Richard explained our contagion vs comfort conundrum. Mark sagely said, "Get in there and hug her. The absence of touch is doing more harm than a two week cold could ever do."

Richard crossed the threshold and cradled me in his arms. We both felt like babes who had been reunited with the good mother.

I never came down with a cold.

When Illness Enters, Both Partners Suffer

This came to me in an email from a blog reader whose partner is ill. It is so truthful and eloquent, I wanted to share it, with the author's permission.


The biggest change for us, and the biggest adjustment we have to make to keep our relationship strong, is that this is really the first time in our life together that the door of mortality has been opened, if only a crack. In some ways, an age of innocence has passed. My wife has had surgical procedures before, for kidney stones, but “potentially life-threatening” has never been part of our vocabulary. Her current condition isn’t really either, not statistically or realistically. But even the thought of cancer, however remote, however treatable, however excellent the prognosis, is a change that requires an emotional adjustment by both of us.

A change has occurred in the way we look at one another and at our relationship. And there is a feeling of loss attached to that. And I guess for me the most important thing I am working on is trying to remember that both of us are suffering from this condition and this uncertainty, that this is something we must both go through together as a couple, that the pain, fear and anxiety this has aroused is something we share equally. And most important, that this condition is something that offers an opportunity to bring us closer together instead of tear us apart.

I know from past experience, when my wife has been operated on before, that sickness can leave the well partner (me!) feeling isolated, separated and alone. There’s the physical separation in that awful moment when the surgeons come into the pre-operative area to wheel your wife to surgery while directing you to sit alone in a waiting area because you’re not allowed or welcome to be with your loved-one right now. And that hurts at an emotional level, never mind the anxiety about the outcome of surgery. And then there is the separation you feel when you see your loved-one drowsy and sprouting tubes in recovery, barely able to recognize or communicate with you. And that is a lonely feeling, eased only by the relief surgery is over and has gone well.

And then there is the process of recovery when your partner of necessity must turn inward and use all her energy to heal herself, instead of devoting that energy towards connecting with you. That’s when I find my need for emotional reassurance the strongest, even as I sometimes scold myself for selfishly even secretly adding to my wife’s burdens, however normal and natural I recognize these emotional demands to be. We rely so much on those little words and gestures and attentions that reassure us that, to our partner, we are the most important person in the world. And it hurts when circumstances prevent us from getting that reminder in the way we want, when we want, even for a time.

What has helped me to ready myself for the emotional chaos I know lies ahead is to constantly remind myself that Tara is not the only one who is sick. She’s not the only one who is a patient. We both are. Both of us will be going through the surgery in our own way. Both of us will be waiting for the results, enduring the recovery and looking forward to good health again. So long as we go through all of this together as a couple, with a full awareness of how it is affecting the other, then these next few scary months need not drive us apart but can bring us even closer together. Thank you again for your thoughts and affirmation. It made me feel better knowing that I wasn’t alone in what I am feeling right now.

Care for the Caregiver

I always thought that I'd rather be the one suffering the illness rather than the partner witnessing and feeling helpless to make it all better. Even though Richard, my partner, went to extraordinary lengths to make my life as comfortable as possible, his quiet tears fell daily because even his most heroic efforts could not stop my pain. Luckily, he had a brother, friends, and business partners who sustained him.

I recently was informed about a caregivers' support organization: Well Spouse which is a national, not for profit membership organization that, for a nominal membership fee, gives support to wives, husbands, and partners of the chronically ill and/or disabled through support groups and information on a wide-range of practical issues facing spousal caregivers.

Richard didn't use a support group, and neither did I. I'd be interested in hearing from caregivers about what support you found helpful; and also where were you disappointed in seeking support. If some of you check out Well Spouse, please let me know about your experience.