Coping with an Alzheimer’s or Dementia Diagnosis
Gaining acceptance and moving forward
A diagnosis of cancer, heart disease, or other serious illness can be devastating. But there are ways to cope with the emotional distress and preserve your quality of life.
A serious health problem can disrupt all aspects of your life, whether it’s a chronic or life-threatening illness, such as cancer, or a major health event such as a stroke, heart attack, or debilitating injury.
Many serious health problems seem to develop unexpectedly, upsetting your life out of the blue. You may feel overwhelmed by waves of difficult emotions—from fear and worry to profound sadness, despair, and grief—or just numb, frozen by shock or the feeling that you’ll never be able to cope. The emotional upheaval can make it difficult to function or think straight, and even lead to mood disorders such as anxiety and depression.
But whatever your diagnosis or emotional response, it’s important to know that you’re not powerless. There are steps you can take to better cope with your new situation, ease the stress and mental anguish that often accompany serious illness, and find a way to navigate this challenging new journey.
How you react emotionally and the degree of psychological distress you experience depends on many different factors, including your age, personality, the type and prognosis of the medical problem you’re facing, and the amount of support you have.
Whatever your situation, you should know that experiencing a wide range of difficult emotions is a normal response to a potentially life-changing situation. It doesn’t mean that you’re weak, going crazy, or won’t be able to meet the health and emotional challenges that lie ahead.
Everything changes when you learn that you have a life-threatening illness. Perhaps you cried, sought out the comfort of loved ones, or did your best to distract yourself or pretend like nothing had changed. Or maybe you simply froze, unable to process how your life had suddenly changed out of all recognition. Or perhaps you even jumped into action and started tackling your health problem head on.
It’s important to remember there’s no “right” or “wrong” way to respond. We’re all different, so don’t tell yourself what you should be thinking, feeling, or doing after a diagnosis or serious health event. Give yourself time to process the news and be kind to yourself as you adjust to your new situation.
Allow yourself to feel. It may seem better in the moment to avoid experiencing your emotions, but they exist whether you’re paying attention to them or not. Trying to ignore your feelings will only increase stress and maybe even delay recovery. But if you allow yourself to feel what you feel, you’ll find that even intense, disturbing feelings will pass, the initial distress you felt at news of your diagnosis will start to ease, and some aspects of life will even return to normal.
Be patient with the pace of treatment and recovery. After receiving an initial diagnosis or suffering a major health event, it can take time and an array of tests and consultations before your medical team settles on an appropriate course of treatment. It’s easy to become anxious as you wait for a clearer picture of what your road to recovery will entail. But scouring the Internet and relying on what can often be inaccurate or scary information will only make you feel worse. When you’re faced with a lot of unknowns, you can still care for yourself—eat a healthy diet, exercise, sleep well—and pursue those relationships and activities that bring you joy.
Be open to change. Rationally, no one would consider having a heart attack or receiving a cancer diagnosis as ever having any positive consequences. But it can happen. Some people diagnosed with life-threatening conditions do undergo a change in perspective that focuses them on the important things in their lives—those things that add meaning and purpose. Negative emotions such as anger or guilt can even sometimes have a positive effect, motivating you to meet treatment goals, for example. Keeping your mind open may help you to find the positives and better cope emotionally in even the darkest situations.
Facing a life-threatening illness can leave you feeling alone and cut off from even those closest to you. You may feel that other people can’t understand what you’re going through. Or perhaps those around you are trying to be so positive that you don’t feel able to open up and express how you really feel. Or perhaps you’re worried about being a burden to other people if you talk honestly about what you’re experiencing. Whatever your situation, now is not the time to retreat into your shell.
Social support can have a huge impact on your mental health when you’re facing the stress of a serious medical condition. As well as providing practical assistance, such as driving you to medical appointments or aiding you with household chores, having people to lean on is essential to your emotional well-being. Staying connected to others and continuing to enjoy social activities can make a world of difference in your mood and outlook as you undergo treatment.
A number of studies have demonstrated a higher survival rate following a cancer diagnosis, for example, among people who are married compared to those who are not. This can likely be attributed to the greater social support offered by a spouse and children. Of course, you don’t need to be married or in a long-term relationship to benefit from the support of others.
Choose the support that’s right for you. After a serious diagnosis or health event, who you choose to confide in, lean on, and the amount of information you elect to share about your medical situation are always very personal decisions. But trying to tough it out alone will only deny those who care about you the chance to offer support.
Don’t let worries about being a burden keep you from reaching out. The people who care about you will be flattered by your trust and won’t judge you as weak or being a burden. Reaching out to them will only strengthen the bond between you.
Look for support from friends and loved ones who are good listeners. When you choose to confide in someone, try to find someone who’s a good listener—someone who’ll listen attentively and compassionately without being distracted, judging you, or trying to tell you how you should think or feel.
Make face-time a priority. While it’s always good to have support from friends and loved ones via phone, text, or social media, it’s important to find in-person support as well. Connecting face to face with someone who cares about you can play a huge role in relieving stress and boosting your mood.
Join a support group. A support group can be a safe place to talk about what you’re going through and get coping tips from others who are undergoing similar medical problems. Don’t be put off if you don’t click with the first group you try—it can sometimes take several attempts to find the group that works best for you.
Seek out a peer support program. There are many disease-specific organizations that can match you with a person who has survived the same type of medical condition. Whether it’s in-person, online, or via telephone, you can receive one-on-one support from someone who has firsthand experience of what you’re experiencing.
Many of us find ourselves alone at some point in life. It can be especially tough when you’re also facing a serious illness. But even if you feel that you have no family or close friends to lean on, that doesn’t mean you have to face your challenges alone.
As well as taking advantage of the support groups and peer support programs mentioned above, there are also plenty of things you can do to expand your social network to find support—even at this difficult time.
It’s easy to be frightened of your feelings when you’re facing a chronic or life-threatening health condition. Like many patients, you may think that bottling up your emotions, putting on a brave face, or forcing yourself to be positive and cheerful will provide the best outcome to your illness. However, being honest about any negative emotions you’re experiencing won’t delay your recovery in any way. It may even have the opposite effect.
A 2002 review of studies into the coping styles of patients with cancer concluded that being cheerful has little effect on the success of treatment or rate of recurrence. In fact, bottling up your emotions may only increase your stress levels, elevate the amount of pain you feel, and make you more susceptible to anxiety and depression. It’s often the act of refusing to face your fears that leads to the hopelessness, sadness, and pain that can come with battling a serious illness.
Facing your emotions on the other hand, even the most painful and fearful ones, can help you to ease your stress and suffering, better come to terms with your condition, and find greater peace and physical fortitude as you work towards recovery.
Many of us are taught in childhood to bottle up our feelings. We internalize emotions such as fear, grief, and anger or we explode inappropriately, which serves only to fuel rather than expend unpleasant feelings. By the time we reach adulthood, we often find it difficult to even recognize what we’re really feeling. But it’s never too late to learn to reconnect with your emotions. You can start by listening to your body.
When you experience a strong emotion, you likely also feel it somewhere in your body. Perhaps your stomach tightens up every time you feel anxious or afraid, for example, or your shoulder muscles get tense when you feel a sense of grief or loss. By concentrating on these physical sensations, you can start to explore your emotions rather than trying to ignore or repress them.
When your feelings are freed, you’ll find different emotions quickly come and go. Even the most painful and difficult feelings will rapidly subside. As you undergo treatment, you may hear, read, or see something that triggers a strong, unpleasant feeling. But if you allow yourself to feel what you feel, it won’t last, and a different emotion will soon take its place.
For more on learning to connect with your emotions, see HelpGuide’s free Emotional Intelligence Toolkit.
Stress can contribute to or exacerbate many different health problems, including cardiovascular disease, high blood pressure, gastrointestinal disorders, chronic pain, post-operative and wound healing, and some side effects of cancer and cancer treatments. Practicing stress management techniques, however, can help you manage these health issues.
Even after you’ve had a heart attack or heart surgery, for example, stress management can help by bolstering the benefits of cardiac rehabilitation or reducing the amount of medication you need to control your blood pressure. If you’re dealing with a cancer diagnosis, managing stress can help you relieve anxiety, alleviate fatigue and sleep disturbances, and boost your mood.
Whatever your specific diagnosis, the following stress management tips can help improve your overall health and wellbeing:
Talk to someone you trust. Nothing eases stress more effectively than chatting face-to-face with a friend or loved one—another good reason to maintain social ties and activities.
Adopt a relaxation practice. Practicing a relaxation technique such as mindfulness meditation, progressive muscle relaxation, or deep breathing can help you feel calmer, lower your blood pressure, and ease stress.
Get enough sleep. A lack of sleep can exacerbate stress just as stress can make it harder to get a good night’s sleep. You can break the cycle and ensure you get enough good quality sleep at night by modifying your daytime habits and developing a peaceful bedtime routine.
Be as active as possible. Exercise is an effective way to burn-off tension and relieve stress, and it can leave you feeling more relaxed and positive throughout the day. Even if your medical condition has limited your mobility, there may still be ways for you to get active and reap the benefits.
Whatever medical condition you’re facing, it doesn’t have to define who you are as a person. By continuing to pursue those activities that bring meaning, purpose, and joy to your life, you can reaffirm that it’s these things that define you as an individual, not your illness or injury or chronic health complaint.
We’re all different so we all have different ways of experiencing meaning and joy. If your medical condition means that it’s no longer possible to pursue some of the activities you previously enjoyed, you can still find other activities that nourish and enrich your spirit.
Pick up a long-neglected hobby or try a new hobby. Taking a class or joining a club can help you pursue a hobby and expand your social network at the same time.
Learn something new, such as an instrument, a foreign language, a new game, or a new sport.
Get involved in your community. Try attending a local event or volunteering for a cause that’s important to you.
Spend time in nature. Work in your yard, take a scenic hike, go fishing, or walk a dog in the park.
Enjoy the arts. Visit a museum, go to a concert or a play, join a book group, or take up painting or photography.
Write your memoirs, a how-to book, or a blog about your experiences.
When you have a serious illness, it’s normal to feel sad about your health and grieve the hopes and dreams you may have lost as a result of your medical condition. It’s also natural to worry about what the future may hold or be apprehensive about certain treatments, for example. But if such feelings persist and start to interfere with your daily life, you may be suffering from depression or anxiety.
While mood disorders like anxiety and depression are common among patients dealing with a serious illness, they can create a vicious circle. Your illness triggers anxiety or depression, which then erodes your overall health, which in turn negatively impacts the treatment of your illness. This then worsens your mood disorder, and so on.
As well as counseling and medication, the following can help you cope with anxiety and depression:
Manage debilitating symptoms such as pain. Left untreated, pain can have a detrimental effect on your mood and increase anxious thoughts and feelings of hopelessness. Talk to your medical team about ways to better manage pain and other distressing symptoms.
Ease up on the worrying. We all worry, especially when we’re sick. But if you’re constantly overestimating the possibility that things will turn out badly or immediately jumping to worst-case scenarios, it’s time to take action. There are steps you can take to challenge your anxious thoughts, distinguish between solvable and unsolvable worries, and develop a more balanced way of looking at your situation.
Take care of yourself. Confiding in others, exercising regularly, and eating and sleeping well are all proven ways to help improve depression and anxiety symptoms.
Cut down on sugar in your diet. By reducing the amount of soft drinks, sweets, and sugary snacks in your diet, you’ll feel less anxious and avoid the mood crashes that usually follow a sugar high.
Be smart about caffeine, alcohol, and nicotine. Reducing or cutting out your caffeine intake can help with anxiety. Similarly, alcohol can worsen both anxiety and depression symptoms. And while it may seem like cigarettes are calming, nicotine is actually a powerful stimulant that leads to higher, not lower, levels of anxiety and stress.
What if … the treatment doesn’t work? I can’t cope with the side effects? I have to say goodbye to my loved ones?
It’s hard to imagine that anyone who’s faced a life-threatening illness hasn’t worried about “what if” scenarios at some point. When you’re fighting for your life and faced with great uncertainty, worrying can even seem like it’s giving you some control over your situation. But as with all anxious thoughts, there are ways to calm your worrying mind and take a more balanced view:
Tell someone what you’re thinking. Saying your “what if” out loud can help you put things in perspective. If your fear is unwarranted, verbalizing it can often help you expose it for what it is—an unhelpful worry.
Challenge the thought. What’s the probability that what you’re scared of will actually happen? What are some other likely outcomes? What would you say to a friend in your situation who had the same worry?
Accept the uncertainty. Much of dealing with a serious illness is about learning to come to terms with the uncertainty of your future. Worrying about all the things that could go wrong won’t make your life any more predictable. It will only keep you from enjoying the good things you are still able to experience in the present.
When someone you care about has suffered a serious health event or is dealing with a life-threatening illness, it can be difficult to know what to say or do. You loved one is likely experiencing some painful emotions and that can make even those closest to them feel uncertain about how to best offer your support. These tips can help:
Offer your support. Your friend or loved one may be reluctant to ask for help, but it’s support from people like you that can make all the difference in their recovery. Offer to help with a specific task, even if it’s simply to sit with them during or after treatment. Sometimes, the most important thing you can do for someone is to be there.
Listen. When you talk to someone with a serious illness, it’s natural to feel awkward or not know what to say. But often the most important thing is to listen to the person. Allow them to express what they’re going through without judging them, telling them how they should feel, or trying to put a positive spin on everything.
Educate yourself about the illness but don’t give advice unless you’re asked. The more you know about your loved one’s diagnosis and treatment, the better prepared you’ll be to help. But that doesn’t mean you should tell the person what they should or shouldn’t do, unless they specifically ask for your opinion or want to know what you’ve researched. Treatment decisions are ultimately always up to your loved one, so be supportive even if you don’t always agree.
Stay connected. Some illnesses can involve lengthy treatment, so it’s important not to just provide support at the time of diagnosis and then let your attention lapse. Your support can be just as important after treatment as it is before.
|Talking to Someone with a Serious Illness|
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