I’ve labeled this posting “part 1” because there’s so much to say about death. We don’t talk about death very much in our society, but it’s obviously something that everyone one of us will deal with, both with your loved ones and with yourself.
I’ve been thinking a lot about death recently. I frequently work with people who have medical illness, and death is often present in our conversations, both directly and implicitly. People must be aware that death is a possibility when coping with an illness that may lead to death.
Death is different than dying, and each brings up different issues. Dying is the process of being ill, of progressively growing weaker, and ultimately arriving at a time when the person’s body has no more life. When the heart stops beating, the lungs stop breathing, and the person’s life leaves the body, that is death. Many people are not afraid of death (aka, no longer being alive), but may be afraid of the process of growing sicker and weaker as they grow closer to death.
It’s difficult to talk about death and dying. People want to stay positive, to keep hope alive, and it can feel like it is giving up the fight to talk about death and dying. However, it is likely very much at the front of people’s thoughts and feelings—how could it not be?
Sometimes, in the silence, very important conversations get skipped, and that’s a sadness. Let’s talk about what people who may be dying should be thinking about and preparing.
1) How do you want to use the last days, weeks, or months of your life? Are there things you still want to do that you are able to do, such as trips or activities? Now is the time. Do not wait. I hope you have much, much more time than you thought you would, and that you have the very fun problem of coming up with more joyful activities. No one knows how much time they have left, so make sure you have enough time when you are well enough to do the things you enjoy.
2) Are there conversations you still want or need to have? Are there friends or family members you haven’t told that you are sick? Do you need to clear the air about any disagreements or fights? Do you want to reconnect with a person you have lost touch with? Now is the time.
3) Are your end of life and estate wishes known and documented? The first step is to think through all the issues (how do you wish to divide any money you might leave, who should make health care decisions if you are not able to express your wishes, etc.). Then, you need to explain your wishes to the involved loved ones. DO NOT MAKE IT A SURPRISE WHEN YOU ARE CLOSE TO DEATH OR AFTER YOU HAVE DIED. Sit down with your loved ones. Explain to them what you want—tell your family members that you are having your friends become custodians of your children, or that you have a DNR (do not resuscitate) order in place. Let them know where the money will go, let them know your thinking. Do not leave a mess behind for them to puzzle over.
If you do not have the emotional strength at this time to have a conversation with your loved ones about your wishes, it will be doubly important for you to document your wishes in a legally binding way. Sit down with an attorney who specializes in estate planning, and make your healthcare and financial wishes documented.
4) Make a list of everyone who needs to know about your death-that may include people who would want to attend your memorial, people who keep records for you or with whom you meet regularly (accountants, attorneys, doctors, therapists of all varieties). Get their contact information collated on a list, and decide who will make the calls on your behalf, and provide them with that list.
5) Think about your funeral. How do you want it to be? Small and intimate? A big celebration of life? Do you want it to be planned to suit the needs of your loved ones? Even if you don’t care what your funeral is like, do your loved ones a favor, and ensure that it is planned in advance. When you’re gone, they will need and want to grieve, and it is an enormous gift to free them from the logistics of planning your funeral. And you might have ideas or plans of what you do or do not want at your funeral, even if you don’t think you do. For instance-do you want it to be in a house of worship? In nature? at a home? Do you wish for religion to be mentioned? Or not mentioned? Is there anyone who you would want to speak, sing, play a musical instrument? Anyone who you don’t want to do those things? Anyone you don’t want to attend the funeral? Make those wishes known.
I hope that by opening this conversation on my blog, it will help you to have important conversations with the people in your life about how you want to approach your own life, dying and death, regardless of your current health status.
I saw a great meme recently that said “You are not fat. You have fat. You also have fingernails. But you are not fingernails.” I thought this was important for reasons far beyond the body image issues it addresses. It reminds us how often we confuse thoughts and feelings.
For example, you might be having feelings about your weight, and you might think to yourself “I look fat.” That’s a thought. But how do you feel about that thought? Do you feel sad because you don’t like what you see in the mirror? Jealous of other people whose bodies you like better? Angry with yourself for not having continued with a dietary plan? There are so many different parts of your experience that get glossed over by using this old, stale, judgmental thought instead of being exploratory of your feelings.
This example of “feeling fat” shows much complexity can exist in your feelings, but can be covered up in old familiar thoughts. If you say that you “feel fat,” that actually doesn’t communicate that much, and probably won’t help you move through it. You might feel like you’re frequently feeling the same thing, without any change or improvement. If you talk (to yourself or to others) about feeling heartbroken and a little bit jealous, that offers us an entirely new perspective on what is going on in your internal world.
This tool can be applied to other issues as well. What thoughts are you calling feelings? Do you say that you feel stupid? Ugly? Unpopular? Weird? Since those are all thoughts, we can now get curious about what feelings are lying beneath those judgements. Isn’t it more meaningful to say “I feel really heartbroken and helpless, because I think I should be more professionally successful,” than to say “I feel unsuccessful”?
Understanding the feelings under the thoughts can breathe new life into places that feel stuck. If you feel hopeless or furious or terrified (or anything else), even though you may be tempted to try not to have those feelings, try to dive into those feelings. If you’re angry, ask yourself-how angry? how does it feel in the body (Are you hot? Is your jaw clenched? Is your heart beating extra fast?) Notice what other feelings are there-is it only anger? Or are there other feelings in there too? Sometimes, we don’t notice the complexity of our inner world because one thought or feeling is getting all of our attention. Maybe you’re mostly angry, but also a little bit jealous and sort of ashamed. Get as curious as you can.
What I want you to take away is just how complex your internal world is, and how your brain can trick you into not noticing all the different feelings you might be having. At any given moment, you might be having all kinds of feelings, and you deserve the care, attention and self-compassion to notice them all. Once you know what you are dealing with, you have so much more opportunity to process and, ultimately, release it.
Often, when people are coping with difficult times, they are told by friends, family, and medical providers to “take care of yourself.” We all know that good self-care, particularly during crisis, is an important value. But I’m often told by my clients that they don’t know what that means. Should they be taking more bubble baths? Getting pedicures? It’s a confusing request-to take care of one’s self, especially you are just trying to keep your head above water during challenging times, so I’ve put together some thoughts that might be helpful.
1. Figure out whether people add to or subtract from your well-being. Assess yourself. Are you an introvert or an extrovert. In other words, do you gain energy by being with people you enjoy, or by being alone? Don’t be misled by how outgoing or shy you might be-it’s really about how you gain energy. If you’re an introvert, self-care means more time alone to refuel for the struggles ahead. If you’re an extrovert, self-care means more time with people you enjoy to boost your energy with social contact.
2. Think about who you enjoy. Regardless of whether you’re an introvert or extrovert, you likely have people in your life who feel comfortable, easy, and uplifting to you. It may not be your closest friends, and you might be surprised by whom you’re drawn to. But once you’ve figured out which friend always puts a smile on your face, or who feels like a person you can trust with your struggles, you can reach out to them. Tell them that they are special to you, and that during this difficult time, their friendship is uplifting and encouraging, and ask if they have time for you. Most people are honored by such a request, and will find time.
3. Think about who you don’t enjoy. This can be a little more painful to think about, but it’s equally important. Are there people in your life who drain your energy? It might even be people close to you. You don’t necessarily have to cut them out of your life entirely, but you will want to be strategic about how and when you spend time with them.
4.Physical touch is important. Most of us do not get enough touch in our lives, especially when life gets hard. In addition, when your body is a source of pain, it’s important to balance that experience with tactile pleasures as well. There are numerous ways to offer yourself the gift of physical touch-massage is the most obvious, but some people don’t enjoy massage, or have physical limitations that make full body massage not possible. Consider scalp massage, or foot massage. Or ask someone whose touch feels comforting to hold your hand, or give you a hug. You can even consider some of the healing arts that do not work primarily with physical contact but still work on the body, such as reiki or acupuncture. Alternately, if human touch just isn’t going to work for you, consider some quality time with a pet, or even snuggle up with soft blankets or snuggly clothing that feel soothing.
5. Laughter is truly good medicine. Life can be serious and sometimes painful business. Laughter can help to relax our tense bodies, give respite from difficult times, and is just plain fun. Watch video of stand up comedians you enjoy, or turn on a favorite sitcom. Laugh and be silly, and take a break from the seriousness of life.
6. Be ruthless with your balance of pleasure and pain. Are there things in your life that drag you down that are not mandatory? See if there’s a way to outsource them. Are there friends in your life who want to be helpful? Maybe they could help with these unwanted chores—laundry, cooking, cleaning, or driving kids around, just until you survive this difficult time. Alternately, are there little creature comforts that you enjoy? This is a time to enjoy them—buy that special little snack that’s expensive but delicious, or cuddle up with a trashy magazine, or ask a friend to drive with you to the ocean to see the sunset. Whatever adds to your pleasure (within reason) is worthy of a little extra effort or cost, if you can afford it.
7. Nature can be wonderfully restorative. I highly recommend getting outside, and soaking in beauty. You can go near or far, and if going outside is not working for you, see if you can look out a window to a beautiful scene or go for a great car ride. If you can get away, sometimes a change of scenery is best of all. Regardless of where you see it, being in nature can give perspective and peace, and a break from whatever is bothering you.
8. Breathe. As obvious as this sounds, when times get difficult, our breathing often becomes shallow and quick, which can exacerbate any existing anxiety or distress. Try to slow and deepen your breathing if you can. There are many wonderful breathing exercises out there, as well as breath-based mindfulness/meditation techniques, and I encourage you to explore those ideas. One very simple technique to regulate your breathing goes like this: count to four on your inhale, hold for a count of four, and exhale for a count of four. Repeat as long as you like, and slow or speed up the count of four to your comfort.
9. Exercise. I know it doesn’t sound like self-care to exercise, if you don’t feel like moving, but trust me on this one. You will feel better physically, mentally, and emotionally afterwards, so it is a true gift to yourself. Do whatever your body can tolerate—it can be as mild as gentle stretching in your chair, or a lovely walk around the block. If you’re not sure what to do, consult with a fitness or medical professional who can help you generate a safe plan.
10. Get some sleep. Often, when things get hard in life, sleep suffers. Let me be clear-sleep is not optional. Just as parents put children to bed at their appointed bedtime, regardless of their protest of not being tired, you need to get to bed regularly at the right time for your body. Most people need at least 7-8 hours per night, some need even more. If you’re having trouble sleeping, consult with a physician or holistic practitioner of choice regarding medications or supplements that might be useful. Make your bedroom cool, dark and silent (or wear eye shades and/or earplugs). Use your bed for sleeping and sex only. Cut down on caffeine and sugar in the hours before bed. Try to sleep the same schedule every night. You’ll be amazed at the difference a good night’s sleep will have on your challenges.
This is just a short list, a jumping off place for your own brainstorms of what might be self-care for you. Just remember, that self-care is not optional. If you treat yourself with compassion and kindness, it will contribute actively to your well-being and healing, and make whatever you’re going through a little bit easier to bear.
I welcome your thoughts of what has been helpful to you as you’re going through the challenges of life. What’s been your most useful self-care choice?
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.