TO Say I Had The Blues after the accident that paralyzed me would be an understatement. Before the accident, I had worked as CEO at a prestigious medical center; after the accident, I was unable to feed myself, go to the bathroom on my own, or even comb my hair. I had permanently lost the life I loved, and after the shock wore off, I was engulfed in grief.
Experiencing an ANI—whether it’s a stroke, SCI, or TBI—is a profoundly life-changing event. The life you had is gone in an instant. And the awareness that your life will never be the same is inescapable. No matter how well your recovery goes, there will always be a distinction between before and after.
When you suffer an ANI, you’ve lost something that can’t be retrieved. Your grief for that loss is as real as experiencing the death of a loved one, and it is to be expected, acknowledged, and addressed with care. And the sooner the better. It’s the first important step in your rehabilitation.
But grief isn’t the only mental health complication that may arise—and this is something that doctors often don’t address. At least half of those who suffer an ANI experience depression, anxiety, and/or post-traumatic stress disorder (PTSD). I say at least half because the number is almost certainly higher. While these mental health disorders should be expected, too frequently the questions that would elicit your need for help are never asked. Why? Doctors and nurses often don’t have this conversation because they believe it will take a long time. And it certainly does take a long time to arrive at an effective treatment; much of the therapy is hours-long one-on-one conversations and adjustments of medications, which may take months. And unfortunately, if left untreated, these conditions will greatly hamper your rehabilitation, degrading your quality of life as well as the lives of your loved ones.
There are two other related psychological health issues that can occur after ANI: 1) substance abuse, such as a dependence on narcotics and/or alcohol to numb painful thoughts, emotions, and memories, and 2) complicated grief, which is characterized by prolonged grieving and emotional instability (see page 26).
Further complicating the situation is that symptoms of these mental health disorders sometimes occur months after the accident, leaving you, your family, and your caregivers confused. But if you’re prepared, you’ll know how to ask for help. Addressing your mental health needs after ANI is essential to your functional recovery; without a sound mind, you can never restore a sound body.
There are six important points to keep in mind when it comes to finding a treatment plan that addresses your psychological needs:
• Don’t wait. Think about the event that caused your grief, depression, anxiety, or PTSD as damage that requires immediate attention. Early intervention has major long-term benefits. Stated simply: The sooner you get mental health help, the sooner you can begin to rehabilitate effectively. If you stay in a state of shock or rapidly sink into depression, you lose a golden window of opportunity to regain function. If your medical team doesn’t ask you about your emotional state, raise this topic with your doctor as soon as possible.
• Call in the troops. You’ll need a multidisciplinary treatment plan to help address any mental health issues. Establish a coordinated network now; it will serve you well for many years. The team should include your primary care physician, your psychotherapist, a loved one who is responsible for your care and is in communication with your health care team, and a representative from the insurance company who addresses financial issues.
• Mental health therapy works. Psychotherapy—cognitive behavioral therapy (CBT) in particular—should be your default choice for treatment because it has no harmful side effects and it has been shown to be of significant benefit for people from all walks of life and for a variety of mental health disorders, including complicated grief, depression, anxiety, and PTSD.1 To find a CBT therapist, ask your doctor and/or your close friends for recommendations.
• Consider medications. Medications will likely be necessary to deal with the mental health disorders that arise after an ANI. In fact, I recommend that people with an acute ANI be started on an antidepressant as soon as they are medically stable. More than 50 percent of ANI survivors will develop depression, and because it takes several weeks for most of these medications to become effective, valuable time for rehabilitation may be lost while the person experiences the consequences of depression, such as fatigue, lack of motivation, and difficulty sleeping. Combined with CBT, drugs can be incredibly effective at treating mental health disorders. It’s also worth inquiring about other non-drug therapies that have shown to be highly effective, such as electroconvulsive therapy (ECT) and transcranial magnetic stimulation (TMS)2; see this section for more on these therapies.
• Explore complementary medicine. Complementary medicine treatments, which complement and strengthen the effects of modern Western medicine, include acupuncture, chiropractic treatment, hypnotherapy, massage, mindfulness, tai chi, and yoga. (You’ll find out more about these therapies in chapter 8.)
• Resilience and hope enable recovery. Resilience means bending, not breaking, and then gradually coming back to a new equilibrium from adversity. It requires hope, the expectation that you will find new meaning for your life and recover enough function to enjoy it. Nurture your resilience and hope by enjoying as many of the activities that you enjoyed before your injury as possible. Perhaps that was spending time with family and friends, being outdoors, playing sports, reading, or praying. It’s important to accept help that is offered (and make sure that you thank people for helping), while also reaching out for help when you need it. You may find hope and comfort by joining a support group or perhaps in the pages of this book.
Let’s take a look now at how you can deal with your grief, depression, and anxiety so you can focus on recovery.
The best-known model of grief is the Kübler-Ross model, which moves from denial to anger, bargaining, depression, and, finally, to acceptance. Not everyone will experience all of these stages, and you may not experience them in this order. For ANI survivors, the process usually starts with shock, which is where we find ourselves before the grieving process can truly begin. It’s important to recognize shock as an initial stage, so that you can allow yourself to grieve properly.
When I regained consciousness after my initial surgery, I found myself in a state of shock. I looked at my body and didn’t recognize it. There was a tube in my nose, a breathing tube down my throat that prevented me from talking, a feeding tube that went into my stomach, a catheter in my bladder, and numerous intravenous lines. I wasn’t able to move or feel below my neck, and I felt like I was floating in space with no sense of time or place. All of this made it difficult to know who I was, since I kept thinking about what I’d lost. I wondered about my future and was filled with fear and dread. I was mentally overwhelmed, and I couldn’t even talk about it. Moving past the initial shock is different for everyone, but what helped me was communicating using a letter board (which allowed me to spell out words—a tedious and slow process), and my daughter Mariah’s ability to read my lips. Later, small signs of progress, such as being able to move my left big toe, gave me something positive to focus on. As you work through recovery, hold on to these small signs—they could be what propels you out of your state of shock and allows you to begin the grieving process.
Most of us are not strangers to denial. With ANI, these feelings become a coping mechanism that serves to protect us from becoming overwhelmed by the enormity of our situation. But denial can be harmful if it persists because it prevents optimal rehabilitation and it can complicate therapy. If, for example, your feelings of denial about your condition cause you to think that you don’t need psychological counseling, you are more likely to experience chronic grief and depression. To overcome denial, you must first acknowledge the reality of your situation. Your doctors, therapists, and friends can help—if you trust them, they will help you process the reality that you have experienced a major, life-changing event.
After ANI, feelings of anger can arise as an expression of intense frustration. It can be very frustrating for you to lose your independence and have to ask others for help. You may even be angry at yourself, blaming your actions for your injury. These are all very valid feelings, and you should allow yourself to take the time to feel them. But it’s also important for you and your family to recognize that sustained anger will drive away the very people who can provide you with the greatest emotional assistance. A good therapist will help you address these feelings of anger from the start, before they become sustained and complicate your recovery. Because, when harnessed properly, anger can actually be a useful tool in the recovery process. I felt my loss of independence and self-reliance severely, but I was able to use that anger and frustration to work harder at my own rehabilitation.
If you are feeling particularly hopeless, you may find yourself turning to bargaining, thinking back to the events before your accident or even trying to make a deal with God. For me, this sounded like: If only I had waited one minute longer before going down that hill, I wouldn’t be in this situation. This thought ran through my mind constantly. This is called magical thinking, and it serves to protect you from the weight of your grief after ANI. But it’s not helpful to remain in this stage, nor is it based on an acceptance of your new reality. As you’re going through it, know that you’re not alone—it’s a universal stage and can help you progress to the next one.
In the depression stage, you may feel sad, confused, and overwhelmed. Depression isn’t limited to feelings of sadness, however; you may also feel physical symptoms, like fatigue or headache, and you may engage in destructive behaviors. It’s not uncommon for people with depression to withdraw from social interactions for a period of time. For ANI survivors, this withdrawal can continue for years, becoming chronic depression. Being sad is a normal part of the process, but being depressed is a serious matter and not something to take lightly. But you don’t have to live with your depression. If you find yourself in a sustained period of depression, seek support from your loved ones and treatment options from your primary care physician or therapist (refer to this section for more on this). You don’t have to suffer alone.
Acceptance is the recognition that the loss of function due to your injury is likely to be permanent, but some recovery is possible. Acceptance is essential to beginning the process of functional recovery because it “ends” the grieving process and allows you to move into recovery. This doesn’t mean there won’t be setbacks, days when all you want to do is cry, but when combined with hope, acceptance enables you to maximize your physical and psychological recovery.
Whether your grief follows the Kübler-Ross model or a different path, you should take all the time you need to grieve, and you should be supported through your experience.
Diagnosis: If you’re not able, for whatever reason, to experience your grief fully, you may develop complicated grief. Complicated grief becomes apparent when your feelings of loss do not lessen over time and become both mentally and physically debilitating, in some cases even leading to suicide.
Treatment: The best approach for treating complicated grief is cognitive behavioral therapy (CBT; see page 77). Together, the patient and therapist identify and discuss the recurring behaviors and thought patterns that have the person “stuck” in complicated grief. Then, the therapist works on strengthening key relationships that provide emotional support and on helping you visualize a future life. A CBT program will require three to four months of weekly therapy sessions and should be effective in about 70 percent of patients.3 Therapy can help you move on, restoring a meaningful life in which you feel valuable to family, friends, and society.
I found that creating a mantra was very helpful in my healing. Mine is forgive, let it go, move on. At my toughest moments of recovery, repeating this mantra would help to calm me. I was able to make peace with my past by using the phrase back in the day as a shortcut for admitting to myself that I would never have the same abilities I had before my injury. Focusing on the positives helped—I could still perform a lot of the activities of daily life such as eating, brushing my teeth, and cooking (microwave only!). Of course, the mind can still play tricks: In my dreams, I’m never in a wheelchair!
Letting go of your past life is difficult, but it can be done. Once you’re able to let go and accept your new life, you’ll feel a weight lifted off your shoulders. Some families will want to honor that transition with a planned and meaningful acknowledgment that, ultimately, is all about showing the injured person that they are deeply loved. You may choose to celebrate your progress on the first anniversary of your injury.
Diagnosis: Depression is characterized by an increase in depressive feelings (sadness, emptiness, and hopelessness) and a decrease in pleasurable feelings (enjoyment of life, laughter, and happiness). Physicians make the clinical diagnosis of depression when these symptoms persist every day, for most of the day. Many patients suffer from undiagnosed depression, as doctors can’t predict who will get depressed after an ANI. Surprisingly, for most ANI survivors, there is very little correlation between severity of your injury and depression. Depression can also be difficult to diagnose, since many who suffer from depression do so alone. There’s a stigma associated with admitting depression, so many people are reluctant to talk about it.
Don’t try to “tough it out” if you think you’re depressed, or if a loved one thinks you are. When you do reach out to your doctor, don’t be surprised if they evaluate you for other conditions that mimic depression or that can contribute to it, such as hypothyroidism, metabolic abnormalities (low calcium), anemia, and other infections (which can cause fatigue and lethargy). Your doctor may also address the possibility that side effects of your medications may be causing your depression.
Treatment: The American Psychiatric Association recommends that initial treatment be individualized, so you should work together with your loved ones and your medical team to determine the best treatment for you. Factors that can influence the choice of treatment include the severity of symptoms, coexisting disorders, prior treatment experience, cost, duration of treatment, and patient preference. Options include cognitive behavioral therapy (CBT), drug treatment, electroconvulsive therapy (ECT; see page 29), transcranial magnetic stimulation (TMS; see page 30), exercise, and complementary medicine (see page 118).
CBT is often the best treatment for depression. If you are depressed—feeling worthless and helpless every time you spill something while trying to eat, for example—CBT helps you to be open to the process of learning rather than getting frustrated. Through role-playing conversations with your therapist, you can learn how to have an argument, for example, without being swamped by feelings of self-pity or worthlessness. Techniques that support what you learn in CBT—meditation, mindfulness, and relaxation behaviors, such as slowing your breathing—can also be helpful in treatment for depression.
Antidepressant medication is frequently recommended as an initial treatment choice for depression, often in tandem with CBT or other types of psychotherapy. There are three classes of drugs for this treatment: selective serotonin reuptake inhibitors (SSRIs), serotonin-norepinephrine reuptake inhibitors (SNRIs), and tricyclic antidepressants (TCAs). It’s important that your medical doctor and your therapist have a strong working relationship, as many of the drugs have significant side effects. If you develop adverse side effects, make sure that you contact the doctor who prescribed the medication and that the nature of the side effect is listed in your medical record.
Drug therapy for depression is slow in onset, requiring up to four weeks to show signs of improvement, with maximal benefit requiring as many as twelve weeks. Your doctor may choose to start you on an SSRI, which will increase serotonin levels in the brain, or an SNRI, which will increase both serotonin and norepinephrine levels. Both types of drugs can have significant side effects, so it’s important to be aware of these before you start taking them. SSRIs are associated with nausea, anorexia, diarrhea, insomnia, agitation, and anxiety, and each SSRI has unique side effects with respect to issues such as sedation, constipation, sexual dysfunction, and weight gain. SNRIs have a broader range of potential treatments and may be slightly more effective. This is particularly true for people who also have anxiety, since the brain receptors inhibited by the SNRIs are thought to include some that mediate fear and worry. If the drug is effective, your doctor should continue treatment for at least six months after your symptoms have improved. If the drug is not effective, you can switch more easily to an alternative within the same type, before switching to one from another type. If SSRIs and SNRIs don’t offer relief, your doctor may prescribe a TCA. Though TCAs are significantly less expensive, they are substantially more likely to cause symptoms such as dry mouth, constipation, dizziness, sweating, and blurred vision, and the consequences of overdose are much more serious.
Early Treatment of Depression
Starting antidepressants soon after injury may prevent later depression. This theory has been most extensively studied for stroke, and the American Heart Association recommends beginning therapy with an SSRI when you are medically stable, about one week after your event.4 There are no reliable clinical data on early use of SSRIs for TBI and SCI survivors, but because depression is common in these conditions as well, there may be benefit in early treatment.
There have been several clinical trials to treat depression using anti-inflammatory drugs, particularly for Celebrex (celecoxib), which is a nonsteroidal anti-inflammatory drug (NSAID). Results from these trials appear to show a significant benefit in treating depression.5 NSAIDs such as Celebrex, however, have been associated with hypertension and increased risk of heart attack—risks that need to be weighed against potential benefit. This is particularly true for stroke patients, since many of the risk factors for stroke are similar to those associated with heart attack.
Brain Activation Procedures: For patients who do not improve significantly with psychotherapy, CBT, and/or medications, there are a number of noninvasive procedures that use electrical and magnetic fields to modify brain function. These are referred to as neuromodulation, and the two most common types are electroconvulsive therapy (ECT) and repetitive transcranial magnetic stimulation (rTMS).
ECT is the most effective neuromodulation therapy for depression. It uses an electrical current discharged between two electrodes on the scalp to induce a generalized seizure. The typical therapy is three shocks each week for two to four weeks. Usually, an antidepressant is used in combination with ECT, since the benefit is greater than using either one alone. It’s also associated with potentially serious side effects and safety risks, such as transient amnesia and occasional memory loss, headache, and cardiovascular problems—the latter, such as low heart rate, are common but very short lasting. However, in people with cardiac disease (frequent in people with stroke), there is a 10 percent complication rate, including chest pain, abnormal heart rhythm, and decreased blood flow to parts of the heart (ischemia). Because of these problems, ECT is less popular than other types of therapy.
rTMS uses electricity passing through a metal coil to generate a magnetic field that activates nerve cells in the brain. A typical course of rTMS therapy is a daily treatment for four weeks. Though it’s not as effective as ECT and has a relatively high relapse rate, most patients prefer rTMS because there’s no seizure involved, and it’s safer than ECT.6
Exercise: Exercise has been shown to provide significant benefits as a treatment for depression.7 Work with your physical therapy team to design an exercise plan that is suited to your abilities. Important rules for exercise include: 1) Go slowly so you don’t hurt yourself. I didn’t realize how easy it was to get injured while exercising after my injury. Because my sensation is poor, I could twist an ankle or strain a muscle and not know it until the next day when a bruise appeared. 2) Work with your occupational therapists and physical therapists to develop stretching and strengthening programs that complement your functional needs. For the first three months after I returned home, my exercise consisted of getting out of bed and dressing, going to work, physical therapy for thirty minutes every day, and finally getting into bed at night. All of this was done with assistance, and it still left me exhausted!
Anxiety disorders, such as general anxiety, panic attacks, and PTSD, are characterized by feelings of anxiety and fear, where anxiety is a recurring worry about future events, and fear is a reaction to current events.8 After your injury, you may have many new fears—it’s very common, for example, to develop a fear of falling. Other issues that can cause anxiety include loss of independence, financial hardships, difficulties in interpersonal relationships, and concerns about bowel and bladder accidents.
Diagnosis: Anxiety is usually apparent during a clinical examination, although many patients are reluctant to talk about their fears. That’s why it’s important for your health care providers to speak to both you and your loved ones about your mental health. You may have anxiety if you find yourself avoiding an activity, feeling sick or tired prior to an activity, or crying in anticipation of an activity. Other symptoms are highly individual; for example, my anxiety is usually associated with becoming irritable, and even angry.
Treatment: Similar to treating depression, treatment of anxiety typically involves both therapy and medications. CBT is the approach most commonly used for anxiety because it helps you understand what makes you anxious and fearful, and provides training in how to adjust your response so that your symptoms become less severe.9 One effective treatment for anxiety is “repeated exposure,” in which you are repeatedly exposed to images that make you anxious. With the help of a therapist you will learn relaxation techniques to help you manage your anxiety. Over time you will develop “immunity” to the images as the exposure time is increased. As with depression, SSRIs and SNRIs are the first-choice medications for anxiety.
Diagnosis: ASD and PTSD are diagnosed by symptoms that involve reliving or avoiding the traumatic event associated with the injury. The difference between ASD and PTSD is simply time: ASD occurs within one month of the traumatic event, and the symptoms of PTSD extend beyond that first month. Patients with ASD or PTSD can exhibit two very different behavioral responses: They can become agitated when exposed to someone or something in the environment that causes them to reexperience the trauma, or they can withdraw from the environment and become numb to the situation. Symptoms include flashbacks, nightmares, trouble concentrating, irritability, and depression.
My PTSD
I realized I was suffering from symptoms of PTSD about eighteen months after my initial injury. Several times in the first six months after my injury, I would reexperience the shock of my accident whenever I felt unexpected pain. Once, when a nurse was using a lift device to transfer me from my chair to bed, I felt pain that shot up my arm into my shoulder. Without conscious thought, I screamed as loud as possible, started swearing, and then began to sob uncontrollably. Similar reactions occurred every month or so during the first two years after my injury, but because these reactions occurred so infrequently, I didn’t talk to my doctor.
I also suffered two recurring nightmares. The first was hitting my head against a low-hanging beam while in a friend’s house. The other was being trapped in a house in which there were no clean or well-functioning toilets. These nightmares would usually wake me up at 4:30 in the morning, after which I could not go back to sleep. My PTSD has improved over time, through a combination of improved pain control and CBT.
Treatment: It’s important to treat PTSD aggressively, since it has been associated with cancer, arthritis, digestive disease, and cardiovascular disease (it can increase the risk of hypertension, heart attack, and stroke).10 PTSD is normally treated with CBT alone, especially with exposure therapy to decrease agitation and improve mood. Exposure therapy with CBT is usually quite intense and requires a period of three to four months. Drug therapies are quite effective in decreasing the symptoms of agitation and mood (irritability, anger, depression). Since PTSD is a type of anxiety, SSRIs are the first-line drugs, followed by SNRIs. There are a number of small but meaningful studies of complementary medicine therapies, such as acupuncture, yoga, and meditation, that show benefits in preventing and treating anxiety and stress disorders (you’ll find more on this in chapter 8). Let your health care team know that you’d like to investigate the options that appeal to you.
Treating PTSD-associated sleep problems is crucial, since poor sleep can contribute further to PTSD symptoms and can slow healing and recovery. There’s good evidence that CBT can address sleep disturbances. As always, treatment is highly individualized, and any decisions about how to address your sleep problems should be based on a conversation with your doctor.
In speaking with ANI survivors over the last ten years, I have found that many of them abuse alcohol or are addicted to pain medications, especially opiates (e.g., fentanyl, codeine, oxycodone, and hydrocodone). Social drinking is part of American culture. Yet most adults can’t define a “standard drink.” Why does that matter? Because you may already be in the habit of drinking enough on a daily or weekly basis for you to qualify as a person with a drinking problem. A standard drink is one glass (5 ounces/150 ml) of wine, one can or bottle (12 ounces/350 ml) of beer, or one shot (1.5 ounces/45 ml) of 80 proof hard liquor. Moderate alcohol consumption for healthy adults typically means up to one drink per day for women and two drinks per day for men.
Diagnosis: A two-question screening test for excess alcohol consumption is: “Do you sometimes drink beer, wine, or other alcoholic beverages?” and “How many times in the past year have you had four (for women) to five (for men) or more drinks in a day?”11 If the answer is “Yes” to consumption, and “Yes” to four or five drinks, there is an 80 percent chance that you have “unhealthy alcohol use.”
It can be difficult to differentiate between abuse and therapeutic use of drugs because many of the addictive drugs also successfully address ANI-related pain. Substance abuse and addiction are major health problems for anyone, but particularly for ANI survivors, because these drugs can have toxic effects on your physical health (they can contribute to cardiovascular disease and pressure ulcers), and your mental health (they can cause depression and suicide). If you or your family are concerned that your use of alcohol and opiates may qualify as abuse, you should have a discussion with your doctor. Don’t put this conversation off for fear of being judged; substance abuse problems are quite common, and getting help can transform your quality of life.
Treatment: There are three major treatment approaches for substance abuse: 1) a continuing-care model for chronic disease, 2) medications, and 3) therapy. As part of your treatment, your doctor may also recommend support groups like Alcoholics Anonymous (AA) and Narcotics Anonymous (NA).
1. Continuing-care model: Any type of substance abuse treatment should include routine assessment and ongoing monitoring, because individuals with substance abuse frequently have a lifelong problem of periods of abstinence followed by periods of abuse. It’s estimated that up to 60 percent of patients treated for alcohol or other drug abuse relapse within a year after treatment. Therefore, the treatment plan should be individualized and based on the severity of the abuse, the person’s overall health, and the level of external support. Key elements of a treatment plan include having the patient take responsibility for managing the problem, providing links to other sources of support, and ongoing monitoring of drug and/or alcohol use.
2. Medications: For opiate addiction, drugs such as methadone and buprenorphine are effective for withdrawal symptoms and staying drug-free. Both drugs work by eliminating withdrawal symptoms and relieving drug cravings without producing a “high.” For alcoholics who fail to stay sober with CBT or other psychotherapy, medications such as naltrexone and acamprosate can be beneficial.
3. Therapy and support groups: One of the most effective treatment approaches is combining traditional therapies, such as CBT, with support groups, like Alcoholics Anonymous (AA). These programs include mentorship (frequently by a former substance abuser), enjoyable alcohol- and drug-free social activities, and frequent support meetings. For many, these are the most effective (and certainly the least expensive) treatments, because of the social support network they create.
A strong psychosocial network is a critical ingredient in mental health care, particularly during recovery from an injury or traumatic event. The links in the chain of your support network are all vulnerable after ANI, so paying attention to the potential pitfalls is important.
• Spouse: Spouses are usually the family member most impacted by ANI, because they may have to assume new responsibilities, many of which they’re not prepared for. It’s critical for the healthy spouse to make the time to focus on being a companion and partner, while remaining an independent person with their own interests. If your finances limit your ability to hire outside help, ask other family members to assist. But be very careful as you navigate this new normal. Spouses who become full-time caregivers are likely to experience anger, anxiety, and difficulties with intimacy, often leading to divorce. Underlying problems in the marriage become more pronounced. In particular, disagreements over money may become more intense, because of the increased expenses for medical care. While it may be difficult to discuss, intimacy is essential in maintaining the integrity of the marriage (more on this in chapter 7).
• Family and friends: In the first few weeks after your injury, family and friends may be galvanized to help and will likely appear in large numbers at the hospital. Interest usually wanes over time, though, especially if your hospital stay lasts several months. By the time you are discharged, only your spouse, children, and parents are likely to visit routinely. It can be hard to feel like your loved ones don’t support you, but try not to be judgmental of friends and family who don’t come to the hospital; many of them may simply feel uncomfortable seeing you so gravely ill. Even once you return home, visits from loved ones may occur infrequently, perhaps limited to weekends or holidays. Remember that your loved ones have their own families, spouses, and careers, and try not to take it personally.
It’s important that everyone who is actively involved in the care and recovery therapies continue to maintain their own physical, social, and emotional health. In the first year after injury, family counseling is an excellent way to work through this new, emotionally charged life situation. There are support groups for loved ones of ANI survivors that promote socialization, exchange of information about treatment options, and identification of health care providers with expertise in specific areas. These groups can be especially valuable for family members, allowing them to see the diversity of recovery in different individuals and to make new friends who understand their experience. Ask your doctor for a list of support groups in your area.
• Finances: It is the unfortunate reality of American health care that long-term medical care is expensive and frequently not covered fully by insurance policies. And if you have limited financial resources, the only way to receive this necessary health care is to apply for Social Security Disability Insurance for Medicaid or Medicare coverage. This can mean you will have access to a limited choice of doctors (some physicians will not accept Medicaid or Medicare patients, because reimbursement is significantly lower than for patients with commercial insurance).
Early on, it’s important to develop a long-term budget for care. I hired a life planner to create a plan for me based on my life expectancy. She was a former registered nurse who had worked with ANI patients both in hospitals and in ambulatory settings. While hiring a life planner is expensive ($1,000 to $2,000, depending on your specific circumstances), the calculations she provided gave me a sense of security by showing me what financial resources I would need over my expected lifespan. If your finances do not allow for the services of a life planner, have someone on your team investigate free financial counseling, which may be available at your local community center or offered pro bono by local advisory groups.
• Health care system: In many health care systems (networks that include hospitals, outpatient rehab centers, labs, diagnostic imaging, ambulatory surgical centers, visiting nurse agencies, and physician groups), there is a comprehensive plan for discharge, rehabilitation, and long-term care to ensure maximal independence, prevent readmission to the hospital, and promote efficient use of medical resources for the patient and the hospital.
In the advanced medical home model (also known as the patient-centered medical home model), the primary care physician, working with other health providers, coordinates all aspects of patient care. This means that the providers (including social workers, rehabilitation counselors, and case managers) manage both the patient’s medical and psychosocial issues. After ANI, I believe that team should also include palliative care specialists, who focus on quality of life. Palliative care providers integrate the psychological and spiritual aspects of a patient’s care, with a focus on mental wellness. Palliative care social workers are trained to help address financial matters as well.
Now that you have the skills to handle grief, anxiety, and depression, you can learn to use your mind productively to rehabilitate and restore your body and regain the functions that you’ve lost. In the next chapter, you’ll learn how to prepare for your discharge so that you can live as independently as possible as you continue your rehabilitation.
ANI is a major trauma that affects every aspect of your life. Let yourself grieve. It’s important that you acknowledge and address your grief, and that of your loved ones, so that you can move forward in recovery. Unresolved grief (or complicated grief) can create disabling mental health disorders.
• Mental health disorders such as depression, anxiety, and PTSD are common after ANI. They should be expected and approached proactively.
• Remaining hopeful and resilient can have immeasurably positive influences on your recovery. Be sure to tap into the things that nurture your strength, and don’t be afraid to lean on your support network. They want you to!
• There are a multitude of effective treatment approaches for grief, depression, anxiety, and PTSD. The most common are cognitive behavioral therapy (CBT) and medications: SSRIs, like citalopram (Celexa), escitalopram (Lexapro), fluoxetine (Prozac), paroxetine (Paxil), and sertraline (Zoloft); and SNRIs, like duloxetine (Cymbalta), tramadol (Ultram), and venlafaxine (Effexor XR). These can be used in conjunction with older drugs like nortriptyline, to decrease dose and lessen side effects while improving pain control. Early intervention with both CBT and drugs may have the most benefit.
• A multidisciplinary team approach, anchored by your primary care physician, is essential to address the psychological and medical problems associated with ANI. Be sure to ask for palliative care if it is not offered.
• Planning for and taking advantage of resources outside of the hospital are critical for successful transition to a new life. Your social network of providers, family, and friends needs to be as strong as possible. Find support groups and get a referral to a family counselor. Group family therapy during the first year after ANI can be extremely helpful.
• Discuss carefully with your physician the use of any new mental health therapies, and weigh the risks and the benefits. You should only continue to use therapies if they are beneficial to you.