A couple of years ago, I received a call from a very dear friend late in the evening. She was in tears and had trouble talking. Between sobs and gasps, she told me that she had received a call from the coroner’s office in her hometown informing her that her father had died. I was just as surprised as my friend given that we had spoken about her father earlier in the day and she had expressed so much gratitude that they were finally beginning to have regular conversations.
You see, my friend and her father had been estranged for years and had only recently began to reconnect. In fact, he had sent her a care package that week full of food items so that she wouldn’t have to go to the grocery store during the pandemic. My friend and her father had very different belief systems that caused a tremendous amount of tension between them and I think my friend never felt truly accepted by him because of it. She found his beliefs to be rigid, unforgiving, and short sighted. On top of that, her parents had divorced when she was a child and her father wasn’t there for her regularly and he hadn't kept up with her in her adulthood.
Despite all of that, my friend was the first person contacted by the coroner upon her father’s death. She was asked what to do with her father’s remains and told that he had more than likely died of COVID-19. Last time they spoke, just days before, he mentioned having a small cold.
In the days after his death, she was asked to write his obituary and struggled to come up with nice things to say. She felt a searing anger towards him and, despite all of her efforts, she was only be able to focus on the difficulty within their relationship. She had so much self judgement for these feelings with only seemed to make her mourning more difficult to cope with. How could she be expected to write nice things about someone who had abandoned her as a child, who held such a different life values, and whose death had left her in the position of never, ever having the possibility of a loving father/daughter relationship?
Sometimes when we have complicated relationships with loved ones, their death can bring about unexpected and difficult feelings of pressure on top of the sadness, anger, and shock that often accompany grief. We like to think that when someone in our family dies that the feelings we feel will be straight forward. We expect sadness for an “appropriate” amount of time, we expect to go to their funeral, mingle with other family members and share happy memories and funny stories about the time they played that prank on a neighbor. We expect to work and our lives and think of our lost loved one with fondness occasionally. We think we will be sad because we lost someone who shared love with us and who made us feel good to be with them.
However, when we lose someone who we have a more complicated relationship with, the nature of grief can be very disorienting. We might have judge ourselves for the negative associations and memories that accompany the deep and profound sense of loss experienced. We might want to paint a picture in our minds of all the wonderful times spent with them but are left with an incomplete or blank canvas. We mourn for what we had and what we never could.
The truth is that all relationships are some degree of complicated. Love is rarely like the movies and neither is death. It is okay to feel all of the complicated truths that exist within you. I believe in a way, that might be the best way to honor who the person was and who you are, not who we wanted them to be or who we want to be.
The holidays conjure images of jubilant gatherings with family and friends, great food, good cheer, and decorations to dazzle and delight. We are bombarded with social media, advertisements, and sugary sweet holiday movies that make the promise that everything works out in the end and all can be cured with a little holiday spirit.
Wow, even typing that felt like a lot of pressure! I don’t know about you, but even in the best of times my holidays have never been so simple or so sweet.
For someone in the midst of grief, holiday cheer can feel a lot like toxic positivity. The pressure to be happy, well organized, and have a perfect holiday can provoke anxiety, feelings of overwhelm, and intense sadness. It can be enough to make one want to sit the holidays out. However, if you want to participate in the holidays after loss there are ways to make it more manageable.
1. It’s okay to go with the flow
When the actual holiday comes along, let yourself do whatever feels best. If you want to cry in bed all day allow yourself to do it. If you want to keep the party smaller this year, that is fine too. You get to decide what you can handle and what feels best for you.
2. It’s okay to have plan on leaving early
You are allowed to go to an event with a timeframe in mind. You can tell the host you can only stay for a bit or plan to leave early. If you feel like staying longer once you are there, it will be a pleasant surprise. When traveling, if staying with others feels too overwhelming, you can plan to grab a hotel so that you can have a place to retreat.
3. It’s okay to include your grief and your missing loved one.
Sometimes allowing grief a seat at the table can be helpful. Even allowing a small bit of time during the holidays by going for a walk, journaling, or creating a meaningful piece of art can be a way to connect with the loved one you are missing. When gathering with others, have everyone share a special memory of the lost loved one. Write your loved one a letter. Have their picture displayed in the room where everyone is gathering or make their favorite recipe.
4. It’s okay to take breaks from social media.
Seeing perfect images of perfect people is not helpful when you are feeling anything but perfect and those images aren't even real. Also, you don’t have to watch holiday movies just because it's the holidays. I have a dear friend who loves Christmas and listens to Christmas songs all summer long. It isn't for me, but I appreciate how she honors her feelings even if the music doesn't feel appropriate for the time or setting. If she can listen to Christmas music in the summer, you can listen to whatever you want during Christmas whether that be Adele or heavy metal.
5. It’s more than okay to communicate with others.
It is okay to ask for what you might need. If you know the holidays will be hard for you, explain how you are feeling and ask for help. That might be in the form of requesting a call on a day that you know might be hard for you or asking for someone else to bring the main course this year. A lot of times people don’t know what to do when it comes to supporting others going through grief. They might think bringing your grief up might make things worse or they will say the wrong thing. You might be doing others a favor giving them information on how to support you.
6. If you do spend the holiday alone, and you might, that is okay too.
Spending holidays alone happens, and unfortunately, loosing someone might leave you in this position. If you would like to be in the presence of others, it could be a good day to volunteer, to accept that invitation to an acquaintance's gathering, or go to a place of worship that is meaningful to you. Again, it is okay for this day to feel exactly how this day feels with no expectations.
7. It’s okay if next year is different.
There will be other holiday seasons and while loss has happened and things will be forever altered, the emotions felt can change over time. Grief will be with us for a lifetime in different ways, but just like a stream meanders over rocks and down hills, emotions shift as well as come and go. How loss is experienced this year might be entirely different than in the future.
If you are struggling this holiday season, I send you so much love. I really do. If you need one on one support please reach out.
As children we develop unique and profound relationships with our caregivers. We look to them to provide for us and help us navigate the world and all of its challenges. If we are lucky, they do this for us most of the time, and no matter how old we get we always want to feel that in some way our parents can be there for us.
When dementia enters the picture, everything changes. The person who tied our shoes, cooked banana pancakes on Sundays, and made sure we got to school seems to be fading in and out like an AM radio station on a roadtrip through the desert. Perhaps they are sometimes clear and present. We can hear them and know who they are and in the next moment static begins to fill the air. We are lost to a louder more terrifying sound as we search for a familiar road sign to mark time and distance when all we have seen for hours is sand and sky. No longer oriented to what we know, we try to flip the dial to tune in, but static eventually wins out and we have no choice but to let go. Our parent is no longer exactly who we have known them to be and with that comes loss.
We all know that we will most likely experience sadness and grief after the death of someone close to us, but what we don’t always expect is that with dementia we can begin grieving before someone dies.
Professionals call this anticipatory grief and it can be difficult to make sense of when we know that the person we love is still here. It is true that they are still here, but things are shifting like quicksand.
We try to move forward in a direction we know, but roles are suddenly reversed. The person who we knew as our capable, protective, and loving parent or grandparent now needs us to take care of feeding them, bathing them, or managing their day to day lives. Their faces are familiar but who they are becoming is not as recognizable It is not something anyone necessarily counted on, and yet, here we are. Not knowing what to do and wondering if it is right to grieving the living.
We look at our caregiver and imagine them dead while they are standing right in front of us. We notice them having difficulty recalling a word, or even worse, our own name. We worry about what we will loose next, what they will loose next. We avoid spending time with them because we might see them falter.
Strangely, we also have hope. Hope for treatment, hope for a good day, hope that the disease will move slowly enough to allow for a good life until the very end. Hope that we can somehow alter the outcome of the progression of this horrible, horrible disease.
The truth is, we can never fully know what comes next or how our lives will alter as this disease progresses. This is why staying in the moment is helpful. We don’t know how long our loved one will recognize us, but they recognize us today. We don’t know the last time they will be able to remember their grandchild, but they do right now. Connect while you can and how you can. We don’t think we can possibly bare another sleepless night of sundowning, but what can we do to cope right now?
Ways to Cope:
Find time to do an enjoyable activity with your parent or grandparent and keep expectations low. No, they might not be able to manage physically what they used to, but listening to music together, sharing conversation, or a simple craft project allows for new experiences and positive emotions to be present amongst the feelings of grief for both parties.
It is also important to create a team of support. This could be family members, a spiritual community, or a support group. Connecting to others and sharing your emotions will help with the feelings of isolation anticipatory grief and caregiving can bring. Connecting with others also allows for the opportunity to learn more about coping tools others have used and community resources that might be available. Individual therapy is also helpful. Telehealth can make it possible to receive support when it is challenging to leave the home due to providing care to a loved one.
The anxiety and stress associated with anticipatory grief can be minimized by working to stay physically active. If you can’t leave the house due to caretaking responsibilities there are plenty of free workout videos on YouTube. If you do have the opportunity to leave the house a walk through nature can be helpful, even if it is only a stroll in a neighborhood park. Prioritize good sleep and eat nutritious foods. Drink plenty of water. Managing the basic needs of life are often enough to make the stressors and grief of caretakers feel more manageable.
I listen to a lot of podcasts and every once in a while I hear something that has an impact in a pretty unexpected way. This happened to me the other morning while on my way to the office. I happened to be listening to an interview with a comedian who mentioned his belief in Bigfoot. Yes, I know it sounds ridiculous, and you are probably wondering where I am going with this. Hang in there. I do have a point.
At the mention of Bigfoot, my ears perked up right away because I am a half hearted believer. Mostly because it is fun. Don’t judge me!
The host of the podcast began telling a story about going Bigfoot hunting and how his Bigfoot hunting guide justified his pursuit of Bigfoot like this, “Worst case scenario you go camping. Best case scenario, all of life changes.”
Mind blown! The idea that you could take a small risk and everything might change….or not! Either way, you could still enjoy the ride.
For along time, I scoffed at the idea of believing in Bigfoot. I mean, it is pretty unbelievable that a large apelike creature has somehow escaped being tracked down and put in zoos by humans at this point.
Then my perspective changed. I realized I liked the idea of Bigfoot for what it represented. I liked the idea that there could be some mystery out there. After all, if Bigfoot exists, it is a creature humans haven’t been able to nail down. Don’t we all need a little something like that? Something that provides a little bit of possibility?
How often in life do we hold ourselves back from possibility by saying to ourselves these type of statements? “Oh well, nothing will come of it. It’s too much effort. I’m too tired. I want to watch that show on Netflix. I can’t do that, I will never find that. There is no point going out.”
Or even worse, we think we know exactly how something will turn out. That our experiences are predetermined based on what we already know. We don’t even think about making a change. We just lie down and accept our “fate.” We tell ourselves we are too busy, or we distract ourselves from making any effort towards our goals by taking care of everything else possible. We trudge on in our day to day and forget that we even want to see things differently or experience more. We forget all of the weirdness, beauty, diversity, and surprise life offers us.
It is so easy to stay in a rut and we often think we have to make big sweeping changes in life to shake things up. However, I believe real lasting change starts small. Making one tiny change can be the beginning to a new life.
What would happen if we made small changes or even challenged ourselves just to try that new coffee shop or drive to the next town over and go for a walk somewhere new? Sure maybe nothing more than a pleasant walk or getting that morning caffeine fix. Then again, you never know, your world might change just a little.
Best case scenario….you find Bigfoot.
We have all experienced it. Life is rolling along with ease and predictability. We are confident in our routine and our day to day interactions. We know who we are and know more or less what to expect. There is a sense of calm to our days despite sometimes being a little tired or a little irritated. Things aren’t perfect, but our lives are running well enough. Then out of the blue, something shifts. Something dramatic. Something that calls all of our attention straight to it until that something is all we can see. It’s the trip to the hospital in the middle of the night, it’s seeing a suggestive text from our partner to someone else. It’s the phone call no one want’s to get. It’s the fire raging down the hill.
Suddenly you, who always have things under control, feel very much out of control. You feel your breath catch and your heart pound. You feel desperation for a return to what is familiar, to before the temperature got turned up to 120 degrees, but you know that even after this passes you will be altered in some way. There is no going back.
The word crisis originally comes from the greek word krisis which translates to decision or determination. It is true that crisis does usually bring about the need for immediate action and decision as well as precision in order to get through it. What is also true, is that amidst the chaos, crisis follows a pretty predictable pattern.
The first phase of a crisis is the pre-crisis phase. This is the phase when the crisis hasn’t happened, but maybe there is a warning sign. In the case of a medical crisis, it could be you haven’t been feeling quite yourself and you are debating going to the doctor. You might not even think it is anything serious, and it might not be. What action, if any, that is taken at this stage might impact how the rest of a crisis might go. This is also the place where many people decide to stick their heads in the sand out of anxiety of something worse coming along. I hate to break it to you, but during this phase if there is a crisis, it is coming whether one decides to acknowledge it or not.
Stage two is the actual crisis. This is where the rubber meets to road so to speak. It is time to react swiftly and move into action as quickly as possible in order to move out of the acute crisis. This is essentially the time where one is trying to stop the bleeding. In all actuality, this stage is the shortest of all, but the most intense and can feel like a lifetime. A lot of information can be revealed during this time and that information must be dealt with. This is when decisions are made in order to salvage what parts of oneself or one’s life.
Then comes the clean up. Stage three is either a time to breathe a sigh of relief because you handled things well or fight your way through upheaval, stress, or loss. This period can last a long time and is often the time in which people seek out therapy and work to learn coping strategies. It is a time of reorganization and putting things into place to replace what was prior to the crisis. While this phase can last a while, it is also the time when finding meaning can occur as well as having metabolizing all of the emotional upheaval of the crisis recently endured.
Finally, in post crisis stage, the crisis has passed things have once again stabilized. Much has been learned about ourselves and there is now opportunity where there was once only challenge.
While it can be helpful to know what to expect during a crisis it is also important to lean on practical coping strategies in order to get through it. Keep it simple, focus on the body. Eating, hydrating, and resting when you can is enough to provide some grounding in the midst of great upheaval. If you can’t sleep, it’s okay to walk or engage in some other type of simple movement. Breathe. No need to get fancy with it. In times of crisis, back to the basics is best. Crisis will happen. It is part of life and after the dust has settled new opportunities can return. Life can have new and different meaning with time, patience, and courage.
“BLESSING THE BOATS” BY LUCILLE CLIFTON
may the tide
that is entering even now
the lip of our understanding
carry you out
beyond the face of fear
may you kiss
the wind then turn from it
certain that it will
love your back may you
open your eyes to water
water waving forever
and may you in your innocence
sail through this to that