JS Kicking Cancer’s Ass Theme 7 of 13: The Anticipatory Grief

Anticipatory grief is the name given to the tumultuous set of feelings and reactions that occur when someone is expecting the death of a loved one usually due to a terminal illness.

Grief that occurs before death can be similar to grief after death (conventional grief) but it is also unique in many ways. Grief before death often involves more anger, more loss of emotional control and atypical grief responses. Additionally, rather than death alone, grief before death includes many losses such as the loss of a companion, changing roles in the family, fear of financial changes, and the loss of dreams of what could be.

Between 2014 and 2015 my mum was being admitted in hospital on a monthly basis and during those two years her health rapidly deteriorated to the point I did not believe she would live long enough to see 2016. To make matters worse no matter how many treatments/procedures/medications my mum tried, nothing seemed to work and her health continued to deteriorate as the days went by. I remember in August 2015 my mum’s parents came to Nairobi and we had a family get-together with my aunties and cousins. We took a couple of photos as a family and sent them to my brother who was studying in South Africa at the time. When my brother saw the pics he was so alarmed his immediate response was, “what have you guys done to mum?!” He had not seen a full length pic of my mum for some time and she had lost a significant amount of weight in such a short time that it freaked my brother out. To make matters worse, the get-together was just after some dumbass nurse aide burned my mum’s feet with boiling water so badly she had to be admitted in hospital, so her feet were heavily bandaged in the photos.

The following year or so one of my aunts confessed that around the time my mum lost all that weight in 2015, she believed my mum was “on her way out.” I thought so too and that belief is the main reason why I say all the time that 2014 and 2015 were the hardest years of my life. In those two years no matter how hard my mum fought – and she fought like hell – it never felt like any of the treatments/procedures/medications were working and I was convinced she was slowly but surely losing her battle with cancer. I spent most of those two years angry and in tears and it is not an exaggeration to say that I cried more in those two years than I have in all my 33 years combined.

Anticipatory grief has many of the same emotions as those experienced after a death has occurred (anger, anxiety, depression, emotional numbness, fear, guilt, isolation, loneliness etc.) and they can be just as intense as the grief felt after a death. Yet while everyone is familiar with conventional grief, anticipatory grief is not often discussed and remains largely unknown. Which explains why I was not aware of the term anticipatory grief until I stumbled across it in 2016, but by then my mum’s health was on the mend and I was no longer actively grieving.

I was not aware of it at the time, but between 2014 and 2015 I was grieving. I was grieving for my mum’s deteriorating health, the loss of her abilities and independence, the loss of hope and the loss of future dreams, both mine and my mum’s. But because I had never heard of the term anticipatory grief before, I had no idea that that was what I was dealing with. I had no idea that you could grieve for someone who is still alive. All I knew is that I was sadder and angrier than I had ever been in my entire life. All I knew is that when my mum eventually died I wanted to be buried alongside her because I did not want to live in a world where the love of my life does not exist.

I survived by developing a number of coping mechanisms, some of them healthy but most of them not, that I will detail in another post. The coping mechanisms were meant to be part of this post because they were an integral part of my anticipatory grief, but after the initial draft hit 2,715 words yet I was only halfway the post, I decided to split the two. So look out for ‘The Coping Mechanisms’ later this month.

The upside, if I can call it that, of anticipatory grief is it gives family and friends time to slowly get used to the reality of the impending death. People are able to complete unfinished business with the dying person, for example saying goodbye, I love you or I forgive you. So as much as anticipatory grief sucked major balls, at least it made me aware that I had limited time with my mum and I was able to use our time wisely. I told my mum that I loved her every day, I was careful not to fight with her unnecessarily, I intentionally spent meaningful time with her, I spoiled her by taking care of her needs and those of the household often etc etc. We also had a number of painful, difficult, necessary conversations that went a long way in helping us find some sort of peace with the hand that life had dealt us.

My mum was the absolute love of my life and for the longest time I would say that when my mum dies, just prepare for me a grave beside hers because I did not want to live in a world where the love of my life does not exist. So going through anticipatory grief was the Universe’s way of preparing me for the eventual demise of my mum because I highly doubt I could have handled her sudden death. I read in this article that unplanned loss may overwhelm the coping abilities of a person, making normal functioning impossible. Mourners may not be able to realise the total impact of their loss. Even though the person recognizes that the loss occurred, he or she may not be able to accept the loss mentally and emotionally. Following an unexpected death, the mourner may feel that the world no longer has order and does not make sense.

I do not know if I would have been able to find order and sense in the world ever again had my mum passed away unexpectedly, and I am grateful that I will never know the answer to that because sudden death is, unequivocally, my biggest nightmare. The grief that follows sudden death is different from anticipatory grief and I fear that if I barely survived my anticipatory grief, how on earth will I survive conventional grief? Which is why at the beginning of the year, just when my boyfriend and I had started dating, his mum fell sick and when he told me about it, I got an anxiety attack. In fact, I did not even know that I experienced an anxiety attack before I spoke with my therapist and she articulated it for me. She then gently informed me that my reaction was disproportionate given that my boyfriend and I had known each other for about two months and had only just become official.

My therapist helped me realise that one of my biggest fears, if not my biggest fear, is grief. We had a similar conversation with my BFF Adelle Onyango on International Women’s Day because grief is also one of her biggest fears. Death is one thing, but grief is another monster entirely. Grief is suffocating and all-consuming and can be unforgivingly unbearable if you do not have a good support system and healthy coping mechanisms. I got so triggered when my boyfriend’s mum fell sick because for me my mum was sick for a very long time and then she died. So in my mind parents being sick = parents dying = grief.

As mentioned, I came across the term anticipatory grief circa 2016 when I stumbled across this article. On the one hand I was relieved to finally understand what I was going through in 2014 and 2015, but on the other hand I could not help but wonder how different those two years would have been had I come across that information earlier when I desperately needed it. So to anyone reading this who may be struggling with anticipatory grief, below is some advice from the article on things to remember when dealing with anticipatory grief and it is my wish that it helps you cope with your grief.

1. Accept that anticipatory grief is normal. You are normal and feeling grief before a death is normal. You are allowed to feel this type of grief. Seriously. This is a common phenomenon that has been documented for nearly a century. You are not alone!
2. Acknowledge your losses. People may say annoying things like, “at least your mom is still here” that minimize what you are experiencing. Allow yourself to acknowledge that, though the person hasn’t died, you are grieving. Consider journaling, art, photography, or other creative outlets to express the emotions around things like acceptance of the impending death, loss of hope, loss of the person you once knew, loss of the future you imagined, etc. Explore mindfulness (we have a post on that here) as a way of being present and aware of the many emotions you are coping with.
3. Connect with others. Anticipatory grief is common among caregivers, but unfortunately when all your time is consumed with caregiving you may feel totally alone and isolated. Seek out caregiver support groups, either in your area or online, so you can connect with others who understand the challenges you are facing, including anticipatory grief.
4. Remember that anticipatory grief doesn’t mean you are giving up. As long as you are there for support, you are not giving up on a family member or friend. There comes a time where we often accept that an illness is terminal and that recovery is no longer a possibility. Though it is a reality, there can be a feeling of guilt that comes with that acceptance. Focus on what you are doing – still supporting, caring, loving, creating meaningful time together, etc. You are shifting your energy from hope for recovery to hope for meaningful, comfortable time together.
5. Reflect on the remaining time. Consider how you and your loved one will want to spend that time together. Though what we want may not always be possible, do your best to spend your remaining time together in a way you and your loved one find meaningful. If your loved one is open to it, you may want to discuss practical matters, like advance directives and funeral arrangements to ensure that you are able to honor their wishes (rather than being stuck having to guess what they would have wanted).
6. Communicate. Just like we all grieve differently, anticipatory grief is different for everyone. Expect that everyone in your family may be experiencing and coping with anticipatory grief in different ways. Keeping the lines of communication open can help everyone better understand one another. If you are planning for the remaining time to be meaningful and comfortable, make sure to include all the important family members and friends in those discussions.
7. Take care of yourself. I know, vague and way easier said than done!!  But it is true. Remember the old cliché, you can’t take care of others if you don’t take care of yourself.
8. Take advantage of your support system. Caregiving and anticipatory grief can be a long road. Do an assessment of your support systems so you know which people may be able to help you out (and who you may want to avoid!). 
9. Say yes to counseling! I know, there are still some of you out there who may think counseling is just for wackadoos. I am here to tell you that is just not true! Counseling is helpful for normal, everyday people who just need a place to process complicated emotions and have some you-time. So just say yes to counseling if you are feeling overwhelmed with the feelings of anticipatory grief. 
10. Relief is normal. In the case of anticipated loses there can be months, years, and even decades of caregiving that can be overwhelming and exhausting (though adjectives don’t even seem like enough!). When someone dies there can be a sense of relief that is completely normal, but that can also create feelings of guilt. Remember that feeling relief after an anticipated death does not mean you loved the person any less. It is a normal reaction after a stressful and overwhelming time in your life.
11. Don’t assume. Just because your loss was an anticipated loss, do not assume this will either speed up or slow down your grief after the death. We have said it before and we will say it again: we all grieve differently.