I have worked with people with the emotional aspects of their medical problems for more than fifteen years, and if I know anything, I know that the isolation of medical and mental health problems is devastating.
If you read no further in this posting, please just hear this single message: DO NOT WALK THIS ROAD ALONE.
It is so tempting to withdraw when you feel bad. It is instinctive to curl up into a ball and cover up your vulnerable spots when you’ve been kicked. In the immediate moments, where life is kicking you, protecting yourself at all costs is the most adaptive thing you can do. However, for most of us, nothing is immediately assaulting us, yet we have not adjusted our response strategy. In other words, as we move from an acute circumstance to a more chronic condition, we need to make a new plan for how to engage in self care.
Let’s talk about the difference between acute and chronic conditions first.
An acute condition is severe. It’s an immediate crisis. During these times, your energy is devoted to survival, and finding any way to get through the next minute, hour and day. All you can do is focus on the tasks immediately in front of you (get through this chemo treatment, prepare for this upcoming surgery, survive this intense bout of pain). You cannot plan for the future, and you are not participating in the usual tasks of life. If other people are interacting in your life, it’s to help you complete the tasks you cannot do right now (driving you to your appointments, bringing over dinner, helping you travel to the bathroom). During the acute phase, you’re just doing what you can to keep your head above water, and it is understood that this is not a sustainable or long term situation.
A chronic condition is what happens after the acute phase has ended, but when you still don’t feel like your regular self. After you complete treatment, you may not be feeling quite like your old self. Keeping it real, you may not ever feel like yourself again, but until you hit your new normal, it can be a long-term challenge to manage your transition.
During the acute phase, you only used the help you needed, but it almost was without your choosing-you needed it. But now, the storm has ended, and you may feel that you have used up all the goodwill of those around you. And besides, the worst is over, right? You might be telling yourself that you should just toughen up and handle life on your own. You might be ashamed of some of your feelings, you might think of yourself as weak and needy, and you might even hate yourself for those feelings. You may be tempted to hunker down, as you did in the acute phase, but I will repeat what I have said-you cannot and should not and must not do try to do this by yourself. It is too hard, and too lonely, and too sad, and (perhaps most importantly for you objective types out there) not possible to do effectively.
If you look out your window, and it’s dark and scary outside, I hope you would ask a friend to walk with you to your car. Similarly, on this road of life, which can also be dark and scary, you need to ask a friend to walk with you (metaphorically).
What do I mean by this? You will have to ask for help. I know this is unwelcome advice—you probably don’t want to ask for any more help. You’ve probably already asked for more than you feel comfortable with, and you’re probably trying to get back on your own feet. You don’t want to be that person who always needs help—you like being independent. You might think that people would be overwhelmed by you-your moods, the seeming hopelessness of your circumstances, your inability to repay their kindnesses. You may think that everyone can’t handle you, so you don’t ask anyone. While it’s true that not everyone can handle it, remember, some people can. That’s why you need to select your companions on this journey with exceeding care.
So let’s take a deep breath and get ready to reach out for help. How do you find someone who can understand, whom you can trust with your precious and vulnerable self?
Here are some things to consider:
1) who was there for you during the acute phase? Those people who were sensitive and supportive for you before might be good to you again.
2) who has been a good supporter during other times? Old friends and caring family members might be good sources of support.
3) who has been though, or is going through something similar? Your friends from your cancer (or divorce, or substance use recovery, or grief, or whatever your unique issue was) support group, or the people who were diagnosed right after you, or the people you met at the hospital, understand your experiences in a different way than anyone else. If you haven’t met people in similar circumstances, you may wish to seek out such people—whether by joining a support group, asking a social worker at your hospital, people in a community you belong to (such as a house of worship, school, or a particularly compassionate person in your HR department), or asking friends if they know anyone going through what you are experiencing.
I do think it’s important to have more than one person in this crew of supporters. I want you to have numerous choices of whom you can call when you need help. You might have one person who can always make you laugh, another person who will hang out with you and just be there with you. You might have friends who are great at doctors’ appointments, and others who are only free during certain times of day.
Remember, sometimes support can be fun. Maybe you’re asking a friend to watch a silly movie with you, or to read gossip magazines together so you can just feel normal for a few minutes. It doesn’t all have to be deep emotive work.
Take this task of broadening your circle seriously. Just as you would likely not consider skipping tooth brushing on a regular basis, try to make it a priority to make sure that you have reached out and received the companionship and support you need. And as you receive this support, you may find that you will be better able to walk with others on their own challenging roads as well.
If you are struggling with something in your life, and you’ve found yourself isolating and trying to handle it on your own, try to reach out to just one person in your life today, and, in some small way, let them know how they can help. See if you can let them share your load or keep you company on your road even a tiny bit, and let me know how it goes.
People often think that the main part of my job as a neuropsychologist is the actual assessment, which is true. However, one of the most overlooked (but important) parts of my job is providing the feedback after the evaluation. Sometimes, I have to give people feedback that they were hoping not to hear. No matter how accurate and astute my evaluation is, they must be able to hear, understand and integrate the feedback in order for it to have any value at all. In other words, they must be able to use the information in order for it to be worthwhile.
I’ve spent many years refining my process of giving feedback, and, while it’s always a work in process, I think I’ve come up with some ideas that help me give feedback in a caring, honest, and digestible way. I’m sharing my ideas in the hope that we can open a meaningful dialogue about how to not just provide excellence in our skills, but also in our conversations, because both are equally essential in providing service to our patients and clients.
So let’s talk: how do we tell someone that we found something undesired?
1. Before you do anything, take a deep breath and gather yourself. So often, we are so busy, running from appointment to appointment, that we are partially thinking about the appointment we just finished, and partially thinking about the things we still have to do today, and we are not fully present in this appointment. Even if this person is just one of several you must see today, remember that this appointment is incredibly important to the patient, and try to slow yourself down for a moment before you walk in the door.
2. Acknowledge that this is undesired news. This may seem obvious, but it can be an act of great compassion to sit with them, just for a moment, with the awareness that they’re likely upset, and you know and respect that. It’s also an important communication tool to name the obvious elephant in the room. Otherwise, the person will just keep thinking about how sad they are about this news.
3. Let them know that they shouldn’t try to take in all the information at once: I encourage my patients to bring loved ones to the feedback appointments, and part of the loved one’s job is to take notes, so the patient can just listen and react without having to also be record keeper. If they can’t bring a loved one, perhaps they can record the session on their smartphones or other devices. Hearing news about your health or cognitive capacity can be very overwhelming, and trying to document or remember it at the same time is asking too much for many people.
4. Speak simply and without jargon: It’s easy to slide into technical language, since it’s often more precise, and how we’ve been trained to speak. It’s also a less emotional way to talk through painful issues. But if you can, try to explain your findings like you were talking to a friend who doesn’t work in your field. If you met a friend for coffee and he asked you what your findings are, what would you say? Use that as a key.
5. Provide them with something written: As a continuation of the previous idea, it’s good forward thinking to presume that they won’t be able to take in all the information you provide them. If you give them something written to document what you have told them, they will be able to integrate the information better, and will also be less likely to call you with questions. This means they will be able to move forward with what they need to do without any gaps in time or accuracy.
6. Be authentic. This may sound obvious, but it’s really important. If you feel sad, it’s ok to let a teardrop fall (though you certainly don’t want to have them comforting you, so don’t go overboard here). It’s fine to let them know how sorry you are to provide this bad news. In many medical schools and training programs, we are taught to be “professional,” which requires putting our feelings to the side. In these difficult moments, offering your humanity can be a tremendous gift to the patient, but also to yourself.
7. Offer recommendations and referrals: Some diagnoses can feel like a death sentence, but there’s always something to do that can improve outcome or quality of life. I always make a list of things they can do, typically in order of importance. This serves dual purposes: firstly, it offers them the chance to do something for their well-being; secondly, it can give them the much needed sense of control during a time that feels very out of control.
8. Quality of life discussions: After fully explaining the condition and its possible treatments, it’s important to discuss quality of life issues. I often describe life as a balance between pleasure and pain, so that if we cannot decrease pain, the goal is to find ways to increase pleasure wherever possible. It can be empowering to remind the patient that the reason for all this intervention is to maximize a joyful and positive life.
9. Allow time for questions: This seems self-explanatory, but it’s actually harder than it sounds. There are so many demands on our time, and these conversations may not be our favorite way to spend our time. But please, do allow even a few minutes to ask for questions. I often ask my clients to hold questions until the end, and let them know how much time we will have for questions.
10. Be good to yourself and get your own support: Sometimes I feel like the grim reaper, handing out bad news to kind people who don’t deserve it. When I notice that feeling, I make sure I get my own support, whether a conversation with a good friend, consultation or supervision with a clinician, or doing something kind for myself. I strongly recommend having a relationship with a counselor or therapist or other trusted advisor who can provide you support when needed. If you work in a group of people doing similar tasks, I would suggest having regular meetings where you are able to ask for and receive support. This can be difficult and important work, so take care of yourself.
I hope this discussion is helpful to you as you engage in the important work of providing care and assessment to others. Please, take #10 very seriously—be good to yourself. When you work hard at taking care of others, it’s easy to neglect your own needs. As they say on airplanes-please affix your own (metaphorical) oxygen mask before attempting to help others with theirs.
I’ll be interested in hearing your feedback and ideas about what has worked for you as well. What are your best tips for giving feedback?
Sometimes, people with dementia become isolated, because their friends and family don’t know what to say, or how to visit in a way that might be successful.
Recently, a client of mine moved into an assisted living facility. The care manager and I collaborated on a document the client’s husband could share with friends and family members, guiding them on how to have a successful visit and offer support to the client.
I thought it might be helpful to others who are thinking about how to provide optimal support to loved ones with dementia, so I’m sharing it here on my blog. Please feel free to share it with others who might find it useful.
Thank you for caring about _______. She has moved into a new living facility, and she will welcome your visits. Although the place she sleeps has changed, her love for friends and family continue to be meaningful to her, so your friendship and caring will still be important. You may have some questions or concerns about what to do or what to say, so I have provided you with some thoughts.
If you have any questions, concerns or thoughts, please contact any of our family. The greatest gift you can us is the gift of your caring. You may be afraid you might not know what to say, or might say the wrong thing, but truly, just showing up with kindness is 90% of the process, and we appreciate it greatly.
I facilitate the once monthly Recovery and Renewal support group at Breast Cancer Connections, which is a group for women who have completed their treatment for breast cancer. The women in this group frequently discuss how much they now know about breast cancer that they wish someone had told them before treatment.
We often joke that, by the time treatment is complete, many women with cancer feel like they have acquired a junior oncology degree. And the women often state their wish that their knowledge could serve some positive purpose.
As a result, I’ve started to formally document this hard won knowledge. Please be aware that all of these ideas are just opinions, based upon the experiences of the women whom I’ve met in my years of support group facilitation, and that your experiences may vary. Please discuss any questions or concerns that this article may generate with your medical team and trusted advisors. I am not a medical professional, and these ideas below should just be treated as opinions, not facts. Disclosure out of the way now, let’s continue.
1) Get a second opinion. Doctors sometimes have different opinions about how to treat cancer, and they also have different bedside manners. It is important that you feel trust in your treating providers, and confidence in the treatment plan. It is a common practice to seek second opinions, so your physician should understand your desire to do so.
2) You may wish to request that your case be reviewed by the “Tumor Board.” Many treatment facilities have Tumor Boards, which are multidisciplinary teams which meet to discuss complicated cases. This can be one more way to receive another opinion about your treatment plan.
3) Your breast cancer experience does not necessarily end after you complete treatment. You may be experiencing the aftermath for a significant period afterwards—try to allow yourself some space around that. The after effects may be physical and/or psychological (for more on the psychological effects after a crisis, check out my post on the crash after the crisis)
4) Give some serious thought to when you will return to work, and how much you will disclose about your experiences. Many members of my groups report that they felt they returned to work too soon. Consult with other people who have been through treatment, and make thoughtful decisions about whether you are feeling strong enough to return to work.
5) Get all the data you can, consult with your most trusted advisors (medical and otherwise), and then make the choices that work best for you. You may not get full consensus, so you will have to trust your own best judgment. There are no perfect decisions in these situations.
6) Seatbelts can be quite uncomfortable following surgery and with ports. Look into getting padding on your seatbelt, or place a small pillow under the seatbelt.
7) Do not wear clothes that you particularly like during treatment. You may come to associate them with unpleasant experiences, and never wish to wear them again. Similarly, you may find that you never want to eat the same foods you relied upon during treatment, so you may wish to not eat too much of certain favorites.
8) Get a good treatment team lined up. You may need physical therapy—get a few referrals and find someone who is experienced with breast cancer related treatment issues. You may need assistance with nutrition—again, you’ll want to find someone who has experience with cancer prevention and maximal well being during treatment. And of course, find yourself a good emotional support person. Whether you choose a therapist, a clergyperson, or join a support group, make sure you’ve got someone who can help you deal with the complicated feelings that can emerge during and after treatment. If you are thinking of starting work with a therapist, you may wish to reference my article on how to choose a therapist.
9) If you are low income and need assistance in paying for your medical treatment, you might wish to explore whether you qualify for the Breast and Cervical Treatment program , which provides assistance in paying for medical care for people with breast and cervical cancer.
10) Be good to yourself. Accept help that is offered. Rest as much as you can. This can be a very difficult time, and you deserve lots of support and care.
This article is only a beginning, and there are many, many more bits of wisdom from survivors to add. If there is interest, I’m glad to publish subsequent columns with more suggestions and information from women who have been through treatment and want to share their experiences with people who are just beginning their journeys.
I’d love to hear from you—what did you learn during treatment? What do you wish someone had told you at the beginning? Were any of these ideas useful or surprising to you?
I want to share with you some interesting research findings that have crossed my desk recently.
I’ll lead off with an article that made my day. As many of you know, chocolate is my favorite food. Research suggests that “molecules in chocolate, a variety of berries and foods containing omega-3 fatty acids have shown positive effects on mood.” I know, I know, the research also mentions omega-3 fatty acids and berries, but I choose to focus on the mood-enhancing capacity of chocolate. The article goes on to suggest that certain food choices may share similarities to valproic acid (marketed as Depakote or Depakene). It’s interesting to consider that we may be getting closer to finding ways for people to enhance their mood stability through dietary choices. And if me eating more chocolate is actually improving my mood, so much the better!
Have you been thinking about getting involved with meditation? Recently published research from UCLA indicates that meditation is associated with decreased loneliness. It’s counterintuitive that sitting alone quietly would make a person feel less lonely.
Given that “feeling lonely has been linked to an increased risk of heart disease, Alzheimer’s disease, depression and even premature death,” we can imagine that this can be a useful non-medical intervention.
I often hear people cite all the benefits of alcohol use, in moderation. However, a recent study has emerged which indicates that alcohol intake can lead to increased risk for some types of cancer. A recent study from the meeting of the American Chemical Society indicating a link between alcohol intake and some types of cancer, especially for many people of Asian descent. The research discusses how acetaldehyde, a metabolyte of alcohol, can damage DNA dramatically. Many people have a mechanism to convert acetaldehyde to a more benign substance (acetate). However, many people of Asian, Native American and Native Alaskan ancestry lack the capacity to effectively metabolize alcohol to acetate, and as a result, may be at greater risk for esophogeal cancer.
Many of you may know that exercise is important to physical and psychological well-being. But did you know it has the potential to make you smarter too? Fast Company has a clear and concise article which explains how physical exercise can improve IQ scores, test scores, and even employee efficiency.
As a neuropsychologist, sometimes I have to provide the sad news that a person has a dementia (like Alzheimer’s Disease) or mild cognitive impairment (MCI). No person wants to hear it, and no provider wants to say it, but sometimes it does happen, and often to very kind people who don’t deserve such bad news.
I want to answer some of the difficult, painful questions that emerge after the diagnosis has been given, with the hopes that it will ease some of the concerns of the person with dementia or MCI.
When should I tell my family?
Don’t wait. Usually, when people have been diagnosed, they are still functioning at a reasonably good level. Make sure you tell your loved ones about your diagnosis, so you can spend as much quality time together as you can.
How do I tell my family?
You may be overwhelmed yourself, so it would be helpful to bring a support member with you. Hopefully, you brought a loved one with you (a child, spouse, or dear friend) to the feedback appointment, so one person in your life already knows. Ideally, that person who was with you at the feedback appointment can be by your side as you tell the other important people in your life.
You can choose to tell loved ones individually, or as a group. If you have several people to tell, it can sometimes be helpful to tell people who know each other (such as relatives or friends from the same social circle) at the same time, so they can then support each other.
I usually recommend telling your loved ones in a non-public place, as people may have emotional reactions, and they may not feel comfortable crying in public.
But what if I have young children or grandchildren? How do I tell them?
The general rule with giving serious information to children is to keep it simple and direct, and then to answer any questions. Tell the truth, and don’t speculate.
A sample conversation with a young person might look like this:
“Grandma and I went to the doctor and found out that she has a disease called Alzheimer’s Disease. It makes it hard for her to remember things sometimes, but she still is healthy, and we both love you a lot. Do you have any questions?”
Do you have a book I can give kids about memory impairment?
A book that I like for young kids is “Wilfrid Gordon McDonald Partridge” by Mem Fox. The book’s main characters are a young boy and his senior citizen friends, and when he learns that one of his friends has memory impairment, he goes about learning what memory means. It’s a very sweet meditation on love and memory, and appropriate for young children.
Are there practical things I need to do when I have this diagnosis?
Absolutely. First, I’m sure you feel overwhelmed, and also a lot of emotion about this diagnosis. You will need to process this information and what it means to you. I’d recommend getting some emotional support, and you may need to go outside of your usual circle of support, as they may be having your own reactions to your diagnosis. I’d recommend reaching out to a professional therapist, your clergyperson, or a support group. Your physician or neuropsychologist should be able to refer you to a good therapist, and if you’re here in the Palo Alto area, I can work with you or refer you to a trusted colleague. The Alzheimer’s Association has many listings of support groups for you as well as for your loved ones (for an example, here are the listings posted for Northern California’s Alzheimer’s Association http://www.alz.org/norcal/in_my_community_support.asp)
Once you’ve gotten your support relationships firmly in place, I would strongly urge you to generate plans for the future. No one knows how quickly or severely the changes will take place, so I suggest that you hope for the best but prepare for the worst. Most people want to be in charge of their future, so PLEASE make your wishes known, and document them. If necessary, see a lawyer to make sure your wishes are formalized. This means: get your advanced health care directive complete. Make arrangements for whom you want to be in charge of your finances and medical decision making when/if you are no longer able to make those decisions-that might be a family member, a friend, or a professional fiduciary or lawyer. Let them know how you want them to care for you, and when you would want them to step in. Make sure you have a current will. And please, please, please, communicate as much of this information as possible to your loved ones. You want to make sure that your wishes are known and agreed upon among all relevant players, so that you get everything you need in a harmonious way. You’d be surprised how many times there are battles among well-meaning and caring relatives who all think they know what their loved one would have wanted. Please, ensure that you will be cared for exactly as you’d want, by documenting and communicating those wishes now.
Now that these painful topics have been handled, go out and live your life. I often remind my clients that none of us know how much time we have left, but many people live as though they have unlimited time. The blessing within this unwelcome diagnosis is that it reminds you that the future is promised to no one, and therefore, you should make the most out of the time you have. You are still very much alive, and you have this opportunity to enjoy your life. I often tell my clients to be ruthless in their pursuit of the best possible life—we cannot take away the negative, but we can add to the positive. Spend time with people you enjoy. Travel, if have the ability, the time, and the money to do so. Take part in activities that give you pleasure, and wherever possible, eliminate things that you don’t enjoy. Bathe yourself in things that give you satisfaction, pleasure, and joy.
I know this diagnosis is a lot to take in, but I hope that with some practical tips, you’ll be able to move forward and adjust to this new phase of life with some positivity and peace.
Today, I want to talk to you about negative thinking. Many articles and books have been written about positive thinking, and about the numerous benefits of putting forth a positive attitude, even when you aren’t feeling that way. I disagree with this point of view. Obviously, if you’re feeling genuinely happy or positive, I encourage you to feel free to express it. However, what about when you are not feeling positive? I think that the emphasis on positive thinking is actually hurtful, because it goes against my core belief that people are at their best and happiest when they can authentically express their full selves, and not just the happy parts.
One of my main goals as a psychotherapist is to help people to discover who they are. It sounds simple, but it can be time-consuming, challenging and painful. People receive messages throughout their lifetimes that who they are is not good enough, and that they should pretend to be something else so they can be loved, appreciated and accepted. It causes tremendous damage for people to believe that their truest nature is unwanted and irrelevant, and that they need to cover it up. But this emphasis on looking on the bright side does just that.
If you’ve ever seen or held a newborn, you know that we are born beautiful and perfect. But then we learn that who we are isn’t enough, that we are too noisy or too messy or too angry, too tall or too short, too fat or too skinny (or something else is wrong with us), and we decide that we need to change ourselves in order to be loved. And then, any kind of positive feedback that person receives is tainted, because we believe it’s not the true self that is receiving the love or admiration—it’s this facade that we have constructed. So, then we say to ourselves that “it’s not really me that is loved, it’s just what I present to others” or “if people really knew who I was, there’s no chance they’d like me.” It’s called an imposter syndrome, where people feel like they are pretending to be something worthwhile, but are secretly without value.
The only way to disprove this idea is to actually show your true self, even the parts that you secretly think are unacceptable to others, and to find out that you are not rejected or shunned afterwards. However, this is a huge risk to people who believe that at their core, they are weak, lazy, rageful,or sad beyond measure.
I have been a psychotherapist for many years, and I have heard so many different stories about which my clients are terribly ashamed, but, rather than being horrified or repelled, I am touched and humbled by their strength and resilience and beauty. I am moved by their revelations of fear, jealousy, anger, or grief, because I know it is a frightening and highly vulnerable feeling to expose the parts that we’ve been told are ugly or inappropriate. These feelings are far from unacceptable to me—they are what make people different and interesting and beautiful.
Even if you don’t believe me, I want you to consider the idea that when holding back on your negative feelings in favor of trying to be positive doesn’t work. The feelings have to go somewhere, and they will leak out, one way or another. You might find yourself making passive aggressive comments, or lashing out at someone for something unrelated. You might find yourself depressed or anxious for no apparent reason, because when you suppress feelings, they mutate and show up somewhere else . But make no mistake about it—those feelings won’t go away, just because you don’t like them, or because you read an article about positive attitudes being associated with all kinds of great things.
Counterintuitively, when you express your negative emotions, you’ll find that you actually have greater potential to become happier. I often describe it as carrying around a rotten apple in your bag of fruit when you have a negative feeling that you don’t express. It will impact all of your other feelings as well, and even if it’s messy and unpleasant to clean it out, you will ultimately have a much more enjoyable fruit salad once you’ve done it.
If you need another metaphor (I love metaphors, as my clients can confirm), think about this. You cannot shut down just one side of your feelings. Imagine trying to stop a pendulum from swinging on the left side. It’s impossible, right? You would have to narrow the pendulum’s range on both sides. Similarly, if you choose to narrow the acceptable range of feelings you can express, you will be narrowing your access to feelings on both sides. You will find that your capacity for joy is dramatically increased as you increase your tolerance for feelings on the negative side of the spectrum.
Of course, you might think that of course I am accepting of people and their unique feelings, because it’s my job to do so. The quick answer to that response is yes, a therapist is usually going to be accepting of your negative feelings, and that some people outside the safety of the psychotherapeutic relationship will not be as accepting. But I would also say that while it’s true that my professional training has placed me in a role where people are given permission to be authentic and speak about their pain, I don’t think I’m the only one who feels that way.
I can tell you all my beliefs about people, and how the deeper I know people (professionally and personally) the closer I typically feel to them, but you will have to experience it in your own life to find out if you agree. I always encourage my patients to experiment and start off gently with small tests, to find out what works for them. Seek out someone who you think is likely to be open to feelings or thoughts you don’t typically show. It’s fine to start with a therapist-that’s a great workshop to explore while still retaining a sense of safety. But you might also start with someone whom you think is unlikely to reject you, and try a very small test to see how it feels with them.
Give it a try, or even just think about it. Imagine how it would feel to share more of yourself and your feelings, good bad and ugly with others. Consider whether it could be possible that people genuinely want to know more about you, not just about the good parts.
Let me know what you try, and what you think. I am aware it’s a fairly different position to hold, but I’m hopeful that you’ll give it some thought.