Resources for caregivers and the bereaved do exist. However due to a lack of in-depth social conversations around caring and grieving in addition to the overwhelmed state of those in the midst of these situations, the resources are not always apparent or easily accessible. I am sharing a few resources here to take some of the pressure off of researching. I have combined the grief and caregiver categories as often times caregivers are in constant or anticipatory grief. I have also added resources related to both cancer and loss of parents as this was my particular experience. This is by no means an exhaustive list, but a starting place to reach out for support and inform yourself on what to expect and how to handle each day the best you can given your individual situation. Please check back for updates as resources will continue to be added.
Grief & Caregiving Organizations
The Conversation Project: https://theconversationproject.org/
National Alliance for Caregivers: http://www.caregiving.org/resources/
American Cancer Society: https://www.cancer.org/treatment/caregivers.html
National Hospice and Palliative Care Organization: https://www.nhpco.org/
Hospice Foundation of America: https://hospicefoundation.org/Grief-(1)/Support-Groups
National Alliance for Grieving Children: https://childrengrieve.org/
National Funeral Directors Association: http://www.nfda.org/consumer-resources/grief-support
GriefShare - https://www.griefshare.org/
Family Caregiver Alliance - National Center on Caregiving: https://www.caregiver.org/
Cancer Prevention, Support, & Care Organizations
Colon Cancer Coalition: https://coloncancercoalition.org/
American Cancer Society: https://www.cancer.org/healthy.html
American Society of Clinical Oncology: https://www.cancer.net/
National Cancer Institute: https://www.cancer.gov/about-cancer/causes-prevention
Cancer Treatment Centers of America: https://www.cancercenter.com/
Comfort: A Journey Through Grief, Ann Hood
From Here to Eternity: Traveling the World to Find the Good Death - Caitlin Doughty
Modern Death: How Medicine Changed the End of Life, Haider Warraich
Motherless Daughters: The Legacy of Loss, Hope Edelman
Resilient Grieving: Finding Strength and Embracing Life After a Loss That Changes Everything, Lucy
Smoke Gets in Your Eyes: And Other Lessons from the Crematory - Caitlin Doughty
The Orphaned Adult: Understanding and Coping with Grief and Change After the Death of Our
Parents, Alexander Levy
The Truth About Grief: The Myth of Its Five Stages and the New Science of Loss, Ruth Davis
My Survey Results
Where are you at in your grief journey?
New grief (acute, less than one year since the event)
Name of loved one(s) and relationship
My mother, Sylvia Maria DeAnda Hernandez
Were you this person's caregiver?
Yes, I shared caregiving responsibility with my sister.
What were/are some of your physical reactions/symptoms of grief?
The first few months I was almost constantly nauseated and light-headed. My appetite was all over the place and I had a lot of trouble sleeping. Now about six months later I still have problems with sleep which leads to a lot of fatigue. Overall I have had an almost constant physical sensation of anxiety which manifests in different ways depending on my environment from shakiness to restlessness and obsessive fidgeting.
What would you say were/are your most recognizable emotional responses to grief?
The most recognizable emotion in terms of intensity is a combination of fear and guilt. When going through a more difficult grief day, I tend to have intrusive thoughts about my mother's pain before her passing that take over my mind and body with what I can only describe as terror. On a daily basis, my most recognizable emotion is apathy both in a positive way of not worrying about things that don't really matter but also in a negative way of finding it extremely difficult to put real effort into things that I logically know do matter.
How do you take care of yourself to help yourself grieve?
I am very fortunate to have the arts to both express my pain and also connect with others. It has helped me to organize my thoughts of the many interwoven pieces of my experience to be able to identify where I am at mentally and how to best take care of myself in that moment. I also started weight training while I was caregiving and since my mother's passing have only been more committed to building my physical strength which has both mentally given me a positive thing to celebrate and also all of the physiological benefits of exercise.
When this loved one passed away what was the cause?
My mother had an irregular form of colon cancer which made it difficult to diagnose and treat.
How do you think the way your loved one passed away impacted your grief?
My grief has been deeply complicated by caregiving for my mother during her battle with cancer. Seeing her disappear and be replaced by a woman even she didn't recognize was the most painful thing I've ever experienced. It was even worse than my life without her now because each day she was dying she was in pain. So in an awful and complicated way, the start of my formal grieving was the end of her suffering. I know some people wish a person was still around but I don't feel it's fair of me to even want that because if she were still here she would be in constant physical, emotional, and spiritual pain.
Regret and guilt come up quite a bit in discussing grief. How has regret and/or guilt impacted your grief?
As a caregiver there were many times where I was burnt out or not even aware of what was really going on with my mother's body or mind that there were times when I said or did the wrong thing or in the wrong way. There were opportunities I was too exhausted to take advantage of or moments where my compassion fell short. Each misstep both large and small are now burned in my memory as moments where I made her suffering worse through my own imperfection. I know no one is perfect and that hating myself for making those mistakes won't change anything, but realizing many details after the fact made those mistakes so much more significant to what my mother experienced in her final days.
How has grieving impacted your work (employment status, work relationships, etc.)?
Work has been much more difficult in my grief. Feeling out of focus, tired, apathetic, forgetful, and distracted by my pain makes it difficult to do the quality of work I used to expect from myself. This in turn has made it stressful as it is another thing in my life that feels like it's broken. Work relationships as well are difficult because the types of conversations you have center around work tasks and you have to maintain a certain level of pleasantries that take so much more energy from me in my grief. The more personal work relationships I have are also strained as I am apathetic in general and can't commit much of my time or energy to anything but my own self-care during the workday.
How has grieving impacted your personal relationships?
My personal relationship have greatly diminished in terms of quantity but that began with becoming a caregiver and having no spare time in addition to people feeling uncomfortable around the idea of what was happening to my mom. There have been a few select people that I have become significantly closer since my mother passed as we share similar pain and those people have been the ones to show up when I needed someone the most. At the same time I feel a certain pressure to not always come to them with certain aspects of my grief because it is so frequently that I feel the need to express my grief that I worry it could take over our relationship and make them resent me if it gets to be too much. I also find that meeting new people is a challenge in that I feel that I have to tell people this is part of my life and how deeply I am impacted by this loss, but I never know how soon is too soon when meeting someone. At the same time I don't want to wait too long because I know I am 'not myself'. I am becoming someone new and I feel I need to inform people that who they are interacting with is a broken and lost person trying to put themselves back together while still going through the motions of 'normalcy' because they don't have any other choice. So in many ways I feel very isolated from most social relationships either by people actively avoiding me, me avoiding others, or feeling like there are many things unable to be said that weaken the connections that are present.
How has grieving impacted how you react to other intense emotions?
Grief has magnified everything for me. I remember one of the first weeks I was back at work something minor but time-sensitive went wrong and I ended up sobbing in the bathroom to one of my co-workers. I remember telling her how everything was harder now. Getting out of bed in the morning, remembering to eat, doing my laundry, calling people back, responding to an email, everything takes so much energy. So when something else happens like getting in an unrelated argument with someone or missing a deadline, everything hurts more, reactions are more intense, and recovering from the sweeping emotions takes longer. I find myself needing a lot more rest both mentally and physically, aside from trying to sleep, in order to maintain 'normal' levels of emotional maintenance.
Has grieving changed how you see and describe yourself? If so, how?
Grief in combination with the aftermath of caregiving has made me realize that in many ways I am more myself than ever, and at the same time becoming someone else faster than I can process. I read somewhere about how grief is like a wild fire that burns all of the nonessential away in order to survive and that's really how I feel about the parts of me that are still the ‘me’ I've been getting to know my whole life. They are less inhibited and growing stronger because I needed them to be as good of a caregiver as possible and now to keep on living with my mother gone. The new parts of ‘me’ are mainly coming from the fact that my grief is constantly shifting on its own and in the context of different environments. This shifting is shaping how I interact with the world daily. The trauma of what I witnessed as a caregiver has also made me see things in new ways that I am still processing and becoming aware of. I am still at a point where I am taking things days by day for basic things like work and cleaning the house. Knowing this, I know that the whole of how I see myself will take a while to come to a state where it is more a natural state of growing and maturing, though I know it will never be how would have been without losing my mother. I know there will always be new pieces as I grow into my grief that continue to shape that view.
What do you wish you knew about grief before experiencing loss?
I think one of the most alarming and shocking things that I wasn't aware of was how intense and lengthy the physical symptoms of grieving would be. I didn't expect to get nauseated for months even though I was doing everything I could to take care of my body. I didn't know the anxiety would make me feel like I myself was dying either slowly or through panic attacks. I think a lot people assume you will cry a lot and stay home for a couple of weeks and then start going back to ‘normal’. Eventually the team who was assigned to my mother dropped off a leaflet about grief with a few physical symptoms listed but by then I had already been struggling and feeling like something abnormal was happening to me.
Do you feel like you allow yourself to grieve as much as/in the way you feel you need to? Why or why not?
I feel like I allow myself to grieve as much as I need to and in the ways that I need to because I had this idea in my head while caregiving that I was allowed to think about my needs when my mother no longer needed me. And now that she is gone and there is nothing else I can do for her, I have allowed myself to be selfish in a positive way by shifting that care to myself. My mother’s love for her children was stronger than anything I can describe and I remember having a realization the week after she passed that I since I was no longer able to show her love in return, that the only other option was to show myself the same love she would have shown me. This doesn’t mean I don’t feel pressure from others that impacts my self-care, but I put my needs first regardless because I know if I don’t I wont be able to live a life that honors my mother’s love for me.
Do you feel you are allowed space by people in your life to experience your grieving process? If not, why do you feel like you don't have the space to grieve?
I don't feel like there are many people in my life who are comfortable with me expressing my grief in the ways that I need to and that seems to be more of a general social incompetence of what to say and how to be there for someone. So in a sense of social pressure I don't feel 'space' from others and that has led to isolation in order to feel the way that I need to feel when I need to feel it. When others around me do want to listen I feel like I am constantly explaining things that are beyond what a conversation can capture. I continue sharing in an effort to connect but I don’t typically feel listened to as there tends to be a point where they’ve latched onto a word or phrase that sounds familiar to them and they’ve otherwise stopped truly listening.
What do you wish those close to you knew about your grief?
I wish people understood that just because I'm having a 'good day' doesn't mean I'm done grieving or that you can assume I'm fine and forget that I still need support. I don't want to fear having moments of happiness in front of certain people because their reaction is typically, "oh you seem like you're back to normal". I will never be "normal" again and it's going to take longer than you might expect for me to feel anything with the same or more intensity than my grief even if my laughter at a joke shows you a big smile. Each morning I wake up is a new reminder that my mother is gone and every experience is new because it is one without her next to me. I hear people say that the first year is the hardest because it’s all of the big annual events without them for the first time. This is true so far and I see it continuing beyond that as there will be new jobs, new cities, new partners, new joys, and new sorrows which can no longer be shared with a person who was supposed to be there.
What kind of support do/did you wish you had access to?
I just wish I had known earlier how many people around me had experienced similar things. The kind of support where people really open up and rely on each other even in ways that aren't pretty is the kind of support I hope for and hope to give. Knowing the pain I am in myself, it is heartbreaking and frustrating to know others near me have been feeling the same way in silence and that if I had been less vocal about my experience, we may not have ever found each other's support at all. On another note, I wish I could continue seeing a therapist but the cost is so high that it makes my anxiety worse. I saw one from a few months before my mother's passing up until a few months ago and it did help but the cost became too much of a burden. If there were reasonable payment options for seeking professional help I would see it as a great support tool.
What do you wish you could say about grief to the world?
I wish I could tell everyone that while nothing can take away the pain of losing someone you love, avoiding discussions on grief because you don't want to think about it doesn't help you prepare yourself or your loved ones, and it only makes the experience more difficult because chances are you've ignored all of the other logistics that go into loss of life. Things like going through the belongings left behind, closing bank accounts, knowing what someone would've wanted for themselves, or what they would have wanted for you. Every situation for how this loss happens is different. But having some background in what to expect, who you can lean on, and how to keep going without them can make all the difference in keeping you afloat through the darkest parts.
Previous caregiver due to loss of life
Name of the cared for and relationship
My mother, Sylvia Maria DeAnda Hernandez
Please describe your caregiving role in terms of physical assistance, emotional support, logistic responsibilities, or any combination of your role.
While co-caregiving for my mother with my sister I was responsible for the majority of her day to day needs such as food preparation, assistance to get up and around the house, and also her main source of emotional support. My mother and I had a very different relationship than my other siblings and so she needed me in certain ways that required a different kind of trust. This mainly manifested in her feeling like she could rely on me emotionally and socially during her darker moments and also to make her smile when she needed distractions. Many times she could technically ask someone else for help with something but felt more comfortable asking me and so I felt a heavier burden to make her feel safe.
What was the hardest part of your caregiving experience?
By far the hardest part of caregiving was intimately watching my mother suffer. The amount of pain she was in was beyond what I could comprehend but I could feel it and seeing her like that was the worst thing I've ever experienced. Many people may not want to accept this, but at some point, I was waiting for her to pass away so she wouldn’t be in pain anymore. It was an unreal feeling to know that as soon as her suffering came to an end, it would mean a new kind of suffering for me. Even knowing the rest of my life is altered and darkened by her absence, I know that watching her go through everything she did is still worse than any pain I could have now or in the future.
What was the best part of your caregiving experience?
The best part of caregiving was when my mother was in a good mental space, she was able to tell me how much it meant to her that I was there for her and how good of a job I was doing taking care of her. There were so many times I messed up or she got angry because she was ill that having those moments with her remind me that even though we were in a living nightmare, she knew that I would do anything for her. I try to remember this when the guilt of my grief sets in.
If able, how did you take care of yourself as a caregiver? If unable, what were the main challenges to your self-care?
I didn't do a terribly good job of taking care of myself in terms of setting boundaries, sleeping well, or personal time, but I don't think there was much I could do about those things due to the time constraints of caregiving. The little time I did have I would just try to lie down as long as I could. The one thing I did do was eat well because I was cooking all sorts of health meals for my mother in a final attempt to help her in any way possible and as a result we ate many nutritious meals together. It was exhausting cooking so many meals at once trying to find the one that she would be able to eat but it did mean that there was always something healthy on hand.
How did caregiving affect your personal relationships?
It was really difficult to maintain any relationships while caregiving. There was no time for anyone or anything else other than my mother and I had little energy left even for myself let alone other people. It also felt like people didn't understand how exhausting it was to be a caregiver and the lack of empathy from those around me made me retreat from trying to connect because it only drained me more.
How did caregiving affect your work (employment status, work relationships, etc.)?
First off I was always so tired. Work was just something I had to get through. I had to wake up early enough to get my mom set for the day before going to work, call and text during the day to make sure whoever was there was doing the right thing, and then as soon as I got home it was back to her. Honestly I don't really remember most of work during that time. I was incredibly disengaged mentally. I would do what I needed to do but not in a truly aware sense. I also felt odd laughing with people at work about silly things while my mother was at home dying. Everything felt fake. I guess even my life felt fake while I was at work because it was so removed from my personal reality. But I needed a job and I hadn't worked there long enough to get that kind of time off. So I didn't really have another option.
Has caregiving changed how you see and describe yourself? If so, how?
I see myself differently in ways I can't yet fully describe. I guess the closest thing I have to defining it is in regards to how what I have seen and done for another person has made me feel more isolated yet also more appreciative of true support from others. I feel I have experienced the most honest form of love and now I see myself as a person who is more distant from others due to a lack of empathy I perceive around me. I know that can change if you get to know someone and realize they share similar stories, so at this point my vision of myself is still being fleshed out from a single point of heightened sensitivity to the experience of others. This sensitivity can be overwhelming in the midst of my grief but I see it as something that will grow and become more manageable over time.
What do you wish those around you knew about being a caregiver?
I wish those around me understood that it's more than the surface. I could list the basic functions of caregiving but the energy, thought, interactions, and unpredictable nature of caregiving can't be easily summed up for anyone outside of it to fully comprehend. At the time I just wish those around me knew or could say "I know I don't/can't understand but I am listening to you" instead of the typical response of why they are also tired or stressed. It’s also not just a laundry list of things that have to get done. It’s another person’s life that needs sensitivity, differences in personality, and patience even when you don’t have it. It’s the most demanding and time consuming responsibility and there’s not such a thing as “I’ll take care of it later”. Even when someone else was watching my mom while I went to take care of something I would still be texting and calling because I knew she wasn’t always clear about her needs and other people weren’t always insightful that they needed to ask a few times or come back in ten minutes when she’d changed her mind but didn’t want to say anything. Yes caregiving is like having another full-time job but it’s someone’s life and heart day after day, not a to-do list.
What do you wish you knew before becoming a caregiver?
I wish I knew a lot sooner what was going on with my mother's mind. She would be aware and alert one moment and then forgetful and angry about being forgetful the next. She wanted to be believed and treated like an adult but couldn't really speak well for her own defense or needs. I didn't realize until later in the processes what was happening to her mind and so before that I would argue with her about nonsense instead of just biting my tongue and taking some of the pressure off of her. Those moment where I didn't fully understand what was going on and therefore said the wrong thing are some of my deepest regrets and sources of guilt in my grief. Even when I did catch on, not all of my family members did. I tried to intervene but also didn’t know how to help make sense of it for them because I had a certain insight on how her personality was shifting which was sometimes too subtle to describe.
Did you miss out on things as a caregiver? How has this impacted you either positively or negatively?
Being a caregiver left little time in the day to pursue anything deep in terms of relationships, career efforts, or anything that typically builds a life. I missed a lot of events that a 26 year old would typically go to, I missed a lot of application opportunities as an artist, and I missed out on other people. It does hurt to think about how I've seemingly fallen behind or off-track from the life I was trying to build for myself before all of this happened but at the same time I can't imagine not having been there for my mom. I could not have been anywhere else. And so every one of those things that I missed was worth missing for her. Since there was no positive way for the situation to end, I am trying as best as I can to take each moment ‘missed’ as a learning moment for my own well-being and those around me who I can impact.
What were/are some unexpected logistical challenges during caregiver?
In general time was difficult to navigate whether it was when she would need something, when she would be hungry, when I would get a good night sleep, and so on. But I think it was surprising to me how many errands I was running or my sister was running to make sure we had everything we needed for her or just something to make her smile a little. It was an extra layer of busy and exhausted that was also removed from the small comfort of being able to be in the house at the end of a long day.
Are there any noticeable long-term impacts on your mental or physical health as a result of caregiving?
I know that taking care of my mother traumatized me. Mainly because of seeing her in such indescribable pain. Seeing what was happening to her body and how aware of it she was made a deep impression on my mental health. It's a large part of the intrusive thoughts I have in my grief. It drives me mad recalling every horrible detail sometimes without warning and other times almost obsessively without being able to stop it or change it or forget. I have cycles of remembering these awful things and find myself wanting to crawl out of my skin from the agony of reliving it in my mind. The intensity of this experience has made me more sensitive to certain things regarding physical pain and how that can trigger the memories more vividly or more often.
If you could create a 'do and don't' list for yourself pre-caregiving, what would the most important points be to say to yourself?
Don’t - Don’t expect others involved in the situation to understand you or your loved ones wishes, personality, or challenges. You need to speak up about things that will be upsetting to her ahead of time and stand your ground with extended family who think they know best but aren’t on the daily team. Don’t assume that anyone else will know what you know about your mother and her needs.
Don’t - Don’t expect her to always make sense. She will be forgetful and angry and confused or some combination of all three. Assuming there is logic involved won't help either of you. Just accept her for where she is and don’t try to force it into what you need to hear. It’s not going to happen and it will only cause an argument.
Do - Keep a sense of hope alive. Everyone handles the idea of their own death differently but whether you try everything you can to help her knowing it’s against all odds, or show her that you are somehow going to find a way to keep living a good life when she is gone, giving her hope for the future can ease some of her anxiety in the final days.
Do - Take full advantage of every moment she feels like herself. Whether that’s being lucid, having enough energy, or just talking about something she really loves. It might not be a the most convenient time and it might derail the day for only a few minutes of her being truly present, but it’s rare and soon it won't be there at all. Be patient with her in general but especially when she wants you to be with her at a high point. It’s one last chance to make a happy memory amidst the darkest time of your life.