Anticipatory grief

Break on through to the other side

By Lisa Cole

I received news about a friend recently — his seizures have now collided into a diagnosis of glioblastoma. A strong and steady man, trustworthy through and through, reliable, and ever-so-devoted is suddenly facing a life-limiting illness. His life has forever changed; and, so has ours.

While grief will have its way with us, through feeling, caring and with gratitude, we can “break on through to the other side.”

Most often we focus on all that the patient must deal with when tragedy strikes. Yet, those of us who care about this person find that with such news, the very nature of our relationship is impacted as well.

A talk with my mother some years ago illustrates how illness changes relationships. I was so touched when she finally asked me how I was doing. For months, we’d been laser-focused on her illnesses. The energy had been going her way; not much coming back around.

I remember first becoming aware of this phenomenon with my dear friend, Trish, at dusk in her living room in Solana Beach, California, the fading backlit light illuminating her. Terminally ill, she also finally asked me how I was. It felt so good to be able to share again as we always had done in the past!

I’m sure it was only because our beloved hospice doctor, Julie, had privately asked me how I was doing. I told her how much I already missed Trish — our deep friendship before her cancer seemed buried. She must’ve dropped a hint. I still cry 18 years later.

It’s no one’s fault. It’s the nature of leave taking — in this case via illness and death. Unbinding and separating from this physical plane demands its own attention. The sick and dying still care; their focus is just elsewhere.

Perhaps it’s a way for us who will remain to begin the adjustment process — while our loved one is still with us. Anticipatory grief.

What can we do during such disruptive and devastating times to help ourselves?

Feel

Feel the confusion, the hurt, the sadness, the shock. Plans smashed to smithereens, the future now unimaginable. Get the support you need to dive deeply into the depths of this darkness; denial and distraction, while offering immediate relief, ultimately only lengthen the process. Grief takes as long as it takes.

Care

Care for ourselves while we care for others. This type of news rocks us to our very core, shocks us and bombards our entire system — psychologically, socially, physically, emotionally, spiritually.

As hard as it might be to do, we must find a way to come up for air, again and again. Take that break, delegate to another, be extra mindful when stepping off curbs and while driving . . .

Gratitude

Gratitude in such circumstances — how? We can at least rally to remember to be grateful for the present, right here, right now. For what we are becoming and being called to do, perhaps in ways we could never have conceived of before.

Carlos Castaneda recommends, “When you need an answer, look over your left shoulder and ask your death.” BJ Miller, palliative care physician extraordinaire and patient himself, in a three-minute PBS brief, observes, “In a way, it’s harder to accept the death of another person than accept your own, especially when you love that person.”

Let’s live our lives alongside anticipatory grief and maximize love, however we can. By feeling our feelings, caring for ourselves and embracing gratitude, we can be of true value.

I miss my friend already.
 

 

Complete Article HERE!

When your spouse becomes your caregiver

After Michael Draper was diagnosed with a rare brain disease, his husband retired to take care of him full-time

Terry Wicks, left, and Michael Draper

By DAVID TAFFET

Michael Draper describes the condition he’s been dealing with for seven years as a “designer disease.” His husband, Terry Wicks, said that when they finally received a diagnoses, “the bottom dropped out of our world.”

Draper went almost two years before receiving a diagnosis of MSA — multiple system atrophy — a progressive neurodegenerative brain disorder that results in death.

Wicks has become his full-time caregiver.

MSA is often misdiagnosed as Parkinson’s Disease, but it seems to be more related to other diseases like PSP and Alzheimer’s characterized by a build up of certain proteins in the brain. Wicks explained that with MSA, the proteins needed to transmit signals from one cell to another seem to crumple and block transmission. As that happens, brain cells die.

Functions that are automatic — maintaining body temperature, swallowing, breathing, eliminating waste — stop working. Speech is affected. Muscle coordination deteriorates. The person with MSA becomes unable to take care of himself.

In 2013, the couple was living in California. Draper was an executive with Yahoo. Wicks was an MRI technician.

Wicks remembers asking his husband one day, “Why are you so clumsy lately?”

After a year of a variety of symptoms presenting themselves and several doctors unable to diagnose what was wrong, they went to Stanford for a diagnosis. After almost a year of visits, their doctor told them that she was waiting for one more symptom to appear. When it did, she confirmed MSA.

Symptoms appear when a person is in his or her 50s. Draper was 52 when they first recognized something was wrong. Those manifestations progress for five to 10 years.

New drugs are being tried to halt progression, but Wicks said his husband’s condition was too advanced for the medications to work. And because it takes so long to diagnose, most people have progressed beyond the point where these medications will help.

Four years ago, both men had to stop working. Draper was unable to work any longer so Wicks, who’s seven years older, retired to take care of him.

They decided to move back to Dallas to be closer to family. Their doctor at Stanford told them Dallas was a perfect choice because a colleague of hers had recently opened an MSA clinic at UT Southwestern, so Draper would receive top medical care.

Wicks made a trip by himself and purchased a house in Garland. He said it was the only time in their 29 years together that he had bought a house without his husband.

Wicks describes himself as a planner. So before leaving, he had planned what they needed in a house. He found one in Garland that fit his needs — a 1980s one-story ranch without any stairs or steep inclines that could be outfitted for their needs.

Among the work needed on the house was a complete bathroom redo. They replaced the tub with a walk-in shower fitted with a large tiled seat and an entrance without a step so that a wheelchair can roll in.

Because someone with MSA eventually has trouble turning around, Wicks found something he calls a pivot disk, sort of a lazy susan for people. From his wheelchair, Draper can stand and Wicks rotates him 180 degrees so he can sit in the shower or on the toilet.

Wicks said a person who needs this level of care loses all personal dignity and they’ve worked to keep Draper as independent as possible as long as possible. When he couldn’t brush his own teeth with a regular brush, they got an electric toothbrush.

Draper joked that he could still use a razor as long as his husband didn’t mind seeing him with slash marks all over his face. An electric razor allows him to continue shaving himself for now.

While they still are able to make a trip to the hair salon to get his hair cut, their hairdresser said he’d come to house once he can’t get out any longer.

Until recently, Draper had been using mostly a walker. Lately, he’s less able to make it around the house that way, and he’s begun relying more on his wheelchair.

Over the last few weeks, Wicks said he’s also begun having to use a catheter in order to urinate.

Draper said he feels guilty that he’s putting his husband through this, but Wicks wouldn’t have it any other way.

To help them deal with their situation, they go to support groups. Spouses taking care of their spouses compare, commiserate and share. That’s how he learned about the pivot disk. Those with the rare disorder that may affect only about 15,000 Americans don’t feel as alone when they get together.

Wicks is also careful about caregiver fatigue. Draper’s parents will take care of him for a week while Wicks takes a trip to the Seattle area where the couple lived for a number of years to help decide if after his husband’s death, he wants to move back there.

Draper encouraged his husband to take the trip. This way, he can participate in making future plans even if he won’t share them himself. He wants to know his husband will be all right and will return to having a life beyond caregiving.

Wicks said he still is able to leave Draper alone for an hour to run out to the store for groceries. As Draper’s condition deteriorates, Wicks said he’ll have to hire someone to come into the house to relieve him so he can do errands.

Caregiving that includes everything from personal care to doing all of the housework is a full-time job, Wicks explained.

“Unless you’ve done it, you have no idea how much it entails,” he said.

In addition to the physical labor, caregiving involves stress. Wicks described what he’s going through as anticipatory grief. Most people don’t grieve until their spouse is gone, and Draper has already outlived original projections for his life expectancy with MSA.

Wicks doesn’t know if the grieving he’s going through now — imagining what life will be like without his husband — will facilitate the grief he’ll feel after his husband’s death or if he’ll experience the loss he’s expecting all over again.

But that anticipatory grief also propels him to make the best life he can for both of them. Draper still has his sense of humor even as communicating grows more difficult. But as they look at each other and tell their story wishing it was headed toward a different ending, there’s a contentment and bliss in their just being together.

Complete Article HERE!

What Airplane Conversations and a Grieving Brain Have in Common

By Cara Martinisi

On a recent flight home after visiting family in Florida, I sat in between my two boys with my eyes closed. I knew as soon as I took out a book someone would need something so I just sat and listened. Admittedly, I enjoy people watching and conversation eavesdropping anyway.

As I listened to a woman and man in the row across the aisle, I conjured up their personal stories in my head. At first I thought they were a couple. Quickly and succinctly I realized I was wrong due to my honed in eavesdropping skills. While everyone was preparing for take off I learned that the woman was married and had two little girls. I was unable to tell if he was married, but he did have an older son. The engines whirred to life, safety demonstrations were given and my son’s ear started to bother him. Not very productive in the people watching and eavesdropping department. Things did calm down and I settled back in.

With my eyes closed, I put all my energy into listening. The background noises, however, made it difficult to hear anything other than random words mixed with the lilting of their voices. I was unable to decipher their full conversation.

The feeling was so familiar to me. It took a moment to place why the feeling was so reminiscent, but once I did it made sense. Only able to hear bits and pieces of conversations prevented me from being able to process the entirety of their stories. Much like when an individual is grieving and their brain is consumed with grief.

For the first year, at least, after losing my son my brain was on constant overload. People would speak to me and I would listen, but was only able to grasp bits and pieces of what they said. The distractions — my sadness, pain and grief — prevented me from processing in its entirety. Oftentimes at night I would dream about what I had spoken to someone about that day. The next morning I would revisit the topic with them, able to process it slightly better because my subconscious had worked it over while I was sleeping.

The concept fascinates me. My brain simply cannot handle all of the stimulation. To this day, I become overstimulated much easier than I did in the past. Multitasking is much more difficult for me. Furthermore, my dreams have always been extremely vivid but now they are so vivid I have to ask others if it really happened. These changes are undoubtedly due to the trauma.

Specialists and therapists have said that the brain is a self-healing organ. In my experience this is true. It will continue to heal, but will never go back to being what it once was. There will likely always be “airplane” conversations when I am overstimulated. The daily grief that will forever be a part of my life is not as persistently intense as it once was. When the waves of grief wash in, however, they knock me right down.

My processing abilities have changed, but so has everything else. It would be a wonder if these abilities were not affected. Healing doesn’t mean that things go back to the way they were, but rather the changes are not as intense anymore. In the nearly five years that have passed I have learned nothing if not to adapt to change.

Complete Article HERE!

Self-Care While Grieving The Death Of A Loved One

by Shoshana Berger

“Next to birth, death is one of our most profound experiences—shouldn’t we talk about it, prepare for it, use what it can teach us about how to live?” So begins A Beginner’s Guide to the End, a new book that provides insights on how to move through every part of the dying process as a patient or a loved one. In this excerpt, authors BJ Miller, M.D., and Shoshana Berger reflect on the stigmas surrounding heartache and grief, and how we can move through these emotions while honoring our own mental and physical health.

Grief can be isolating.

Rebecca Soffer, a cofounder of the Modern Loss website and community, was 30 when her mother was killed in a car accident. Soffer took two weeks off after her mother’s death and had barely started to grieve before returning to her job as a television producer. Three years later, she received a call from someone asking her to arrange to get her father’s body picked up; he’d had a fatal heart attack on a cruise ship while traveling abroad.

Stunned by the trauma of losing both parents within a few years of each other, she again dove back into work shortly thereafter. “Honestly, after each loss I felt like I was dying inside myself, and so few people knew what to do with me,” she says. “Unless you’re an incredibly empathic human being, if you haven’t gone through profound loss yourself, it can really be difficult to effectively connect with someone moving through it. I felt like a pariah because this topic felt so taboo. If someone asked where my parents were, I’d say, ‘In Philadelphia.’ I didn’t clarify that they were, in fact, underground there. It was just so much easier to be vague.”

When she did come clean to people who asked about her family, it felt as though the space around her was getting sucked into a black hole. “There are few better ways to silence a conversation than to say, ‘My mom just died,'” she says. “All I wanted was to feel like I could comfortably talk about my reality, not like people felt I might be contagious just because I’d used the word dead.”

Taking care of yourself.

You never “get over” the death of a loved one—that’s not the goal. Living on is. Here are a few ideas that may help:

1. Take time off work.

Sadly, businesses are not required to offer paid bereavement leave, but many do provide three to five days off for the death of an immediate family member. Talk to your HR department about what’s possible for you.

2. Seek out clergy, chaplains, and faith-based services.

Faith traditions have time-tested practices around death, dying, and mourning. Chaplains and clergy are trained to counsel those in bereavement. Hospital chaplains in particular are intimately familiar with supporting people of all faiths and of none. And many churches, synagogues, mosques, and other houses of worship have free programs and groups for grief support.

3. Contact your local hospice provider.

They are required to offer bereavement services to the community, whether or not your loved one was enrolled with their program. Despite the legal mandate, the funding for bereavement programs is paltry, so the services may not be robust, but they’re a good place to start. Hospice agencies are terrific local resource centers as a rule and will often keep a list of psychotherapists and grief counselors in the community who may be of further help to you.

4. Attend support groups or find them online.

Being with others who are working through grief can bring relief (no more pretending everything is OK). These are generally facilitated by mental health care professionals or other counselors. Less formal peer groups can be wonderfully helpful as well. The common thread is a safe place, real or virtual, where you can air your thoughts and feelings and be with others who are in a similar place. Here you are more likely to be seen and heard, not judged. Inquire with the hospice agency or your clinical team or hospital, or search for local groups online.

5. Try psychotherapy.

If you’re prone to clinical depression or anxiety or are experiencing suicidal thoughts, don’t mess around. It can be difficult to tease out grief from depression, so err on the safe side and get help. Therapy can work wonders, even if you’re not depressed.

6. Ritualize.

American culture has largely lost touch with the grief rituals of the past and the wisdom behind them: hanging crepe in the windows, wearing black, wearing an armband, to name a few. These physical symbols buy some space for you and everyone around you. People are more forgiving and respectful; expectations of you adjust. With traditional rituals, you’re tapping into a time-tested collective understanding of what you’re going through.

With these tracks already laid, you get to step away from your swirling mind and follow an old pattern of action without the burden of thought. If, however, you don’t want to follow tradition, you might gain an important but different power by creating your own ritual, a touchstone whose meaning you will always understand.

7. Journal.

Each day before you go to bed, write down one thing you’ve managed to do (even if it was just waking up). Or just write about your experience. There’s no need to keep what you write; just get it out and throw it away if you like. Writing, much like talking with other people, is a way to understand and process what you’re going through, and it can also help you not take your thoughts too literally; your mind in grief might suggest all sorts of odd things to you.

8. Get fundamental.

Since grief is discombobulating, it pays to remember the basics of life. Try taking your shoes off, and feel the ground beneath you; take slow, deep breaths; drink water; eat good food (and really taste it); sleep.

9. Make some new “family rules.”

If you’ve lost a central part of your nuclear family, it can shake the very foundation of the unit. Writing down some family rules in a place where everyone can see them is one way to introduce much-needed stability.

Things such as forgiveness, getting plenty of sleep, respecting one another’s feelings, working together to get things done, and remembering to ask for help when you need it are great reminders that you are all in this together.

Complete Article HERE!

Apes and Monkeys Have an Awareness of Death

Performing Grieving Rituals and Mourning the Deceased, Study Suggests

By

Researchers say non-human primates exhibit an awareness of death.

Non-human primates like monkeys and apes appear to have an awareness of death in the same way humans do, scientists have said. After analyzing over 200 years worth of research into how primates deal with death, they found common behaviors emerged—including carrying their dead, defending the deceased from threats and exhibiting a grief-like response.

There are many stories about apes and monkeys grieving for their dead. For example, a BBC documentary in 2017 appeared to show a group of langur monkeys grieving for what they believe is a dead baby—even though it was actually just a robotic spy monkey.

The same year, scientists observed a chimpanzee using tools to clean the body of a deceased group member. A female sat down with the dead male and used a firm stem of grass to clean his teeth. The practice, researchers say, suggests chimps may have a more sophisticated response to death than we currently know.

Andre Gonçalves from Japan’s Kyoto University and Susana Carvalho from the University of Oxford in the U.K. say there is a huge amount of anecdotal evidence relating to they way non-human primates deal with death—but a review of the literature to find specific characteristics and behaviors has been lacking.

“For the past two centuries, non-human primates have been reported to inspect, protect, retrieve, carry or drag the dead bodies of their conspecifics and, for nearly the same amount of time, sparse scientific attention has been paid to such behaviours,” they wrote in a study published in Biological Reviews.

In their analysis of 240 reports, Gonçalves and Carvalho showed that specific responses emerge among different non-human primate species. Often this involves carrying the dead around—especially mothers and their dead babies. Species that are unable to grasp objects—such as lemurs and tamarins—are observed trying to carry their dead even though they lack the ability.

A chimp cleaning the teeth of a deceased group member.

They also found that group members defend the bodies of the deceased and returning to the body or site of death: “Such places may hold residual information about the event which can arouse curiosity or emotional distress,” they wrote. This behavior tended to happen when an adult died, rather than a juvenile. The researchers speculate this could relate to attachments, with members needing to re-categorize from living to dead—a behavior they say is essential to the grieving process.

In one anecdote about a family of chimpanzees studied by Jane Goodall, a mother named Flo died before her son Flint had become fully independent. After her death, Flint would stare at the nest they shared and returned to the site of her death. He exhibited signs of clinical depression and stopped eating and interacting with other group members. Eventually his immune system became too weak and he also died.

In another case, an adult male howler monkey was observed staying close to the corpse of a female for five days after her death, “suggesting close proximity between these individuals in life.”

“Considering all these findings and given their cognitive abilities, we argue that non-human primates are capable of an implicit awareness of death,” Gonçalves and Carvalho wrote.

They say more research will be needed to confirm whether non-human primates are aware of death—and to what extent they are. “It’s not an all-or-nothing ability,” Gonçalves said in a statement. “Awareness of death includes things such as animate/inanimate distinction, or the sensory and contextual discrimination of living/dead. The concept of death is something we humans acquire between ages three to 10. We can infer that non-human primates have some aspects of death awareness but, thus far, only humans conceptualize it at a higher order.”

The researchers also say further investigation could help shed light on the evolution of our own funeral practices: “Given that there exists a considerable gap in the fossil and archaeological record concerning how early hominins might have interacted with their dead, extant primates may provide valuable insight into how and in which contexts thanatological behaviours would have occurred.”

Complete Article HERE!

5 Lifesaving Tips for Suicide Loss Survivors

By R. Jade McAuliffe

As a trauma and traumatic loss survivor I’ve spent a lot of time grieving, but nothing could’ve prepared me for the fallout following my sister’s suicide.

I struggled to stay alive inside that desolate grief space, even after surviving two suicide attempts of my own and twice witnessing the wreckage of both my sisters’ traumatic and unexpected deaths.

After all I’d put my family through in the past and everything I’ve experienced since, how in the world could I consider checking out… again?

It was the pain. 

Within seven months of my sister’s suicide, my marriage dissolved and I was once again a single parent.

To make matters worse, I had to draft and file the paperwork myself because we couldn’t afford attorneys. This was my lowest point and, for awhile, I feared might have a nervous breakdown or end up hospitalized.

I didn’t, though. I forged on, one moment at a time, and cared for my kids as best I could and vowed to honor myself and the pain of the loss, in every way possible

The following are five tips which saved my sanity and, very possibly, my life.

I hope some of these support you as well.

1. People won’t know how to support you. Always validate yourself.

Platitudes. Oh, the platitudes…

People fear grief and loss, so when approaching someone in significant pain, they often fumble in their attempts to offer helpful consolidation.

To make matters worse, suicide is still stigmatized, so survivors are often guilted, blamed or shamed for their losses, either overtly or covertly.

This, of course, only adds insult to injury and is completely unfair. Unfortunately, it tends to be the norm for suicide loss survivors, so make a promise to yourself: Grieve authentically, in spite of ignorance, and don’t allow anyone to judge or dictate when your time of mourning “should” be over (especially you).

Grief, when honored and companioned, can actually bring lost loved ones closer, and validating your own experience is the first step to empowerment.

You aren’t to blame for your loss, and you don’t ever have to “let go” of or “get over” it either. You likely won’t anyway.

Grief is only proof you dared to love, and love isn’t something from which people “recover.”

Love is yours to keep…
so keep it close, nurture, and cherish it.

Forget about moving on, and concentrate instead on connecting to this love in its new form and, by all means…
take your sweet time.

This isn’t a race and there is no finish line. You’re still in a relationship, albeit a different and altered one. This time, though, you can make it whatever you want it to be.

2. Your body knows how to heal: Follow its lead.

Nobody knows what you need more than you do. You live in your body, and now is the perfect time to gently and mindfully follow its lead.

Grief requires lots of quiet solitude, so use this time to rest and reconnect, with yourself and your lost loved one.

You might need more sleep, or need to nap during the day because you’re unable to sleep at night. Follow your body.

If it wants to sob and shake, don’t resist. If you feel enraged, go ahead and scream, smack a floor pillow with a plastic bat, or throw some old dishes into a garbage can and listen to them shatter. (This is strangely satisfying.)

Honor your body’s specific requests.
It knows exactly what it’s doing, and it will lead you, slowly and eventually, to a place of healing and relief.

Be sure to eat (something) throughout the day, and drink a lot of water. Grieving requires stamina and energy, and this will help you go the distance.

3. Silence can be deadly: Grieve out loud.

The more you hold back, push down, or minimize your grief, the more you’ll become prone to depression, anxiety, and/or suicidal thoughts.

It isn’t mainstream knowledge, but the people most at risk of attempting suicide are suicide loss survivors trying to navigate the wreckage.

If you’ve made past attempts, lost other family members to suicide, or battle depression or unresolved trauma, you’re at even greater risk, so take this very seriously.

The body desperately needs to express itself and suicide grief hurts. Give yourself permission to mourn like a superhero!

Give voice to the good, the bad, and the ugly, and bring all of your feelings to life. Make them big.

Share them out loud with someone you trust (and also your lost loved one) and/or write them all down on paper, uncensored.

Don’t minimize, hold back, or purposely omit anything. Tell your story and tell it often. Repeatedly hearing your own suicide loss story while communicating the feelings associated with it (especially fear, betrayal, and anger) will eventually help you integrate the loss.

Express yourself creatively if you feel led and your energy allows. Sometimes words alone don’t do our feelings justice.

Get it all out. You feel that internal pull for a good reason. Again, follow the prompts of your body.

4. The grief journey is lonely: Make your connections count.

Unfortunately, suicide grief is heavy and messy, and it’s a road we must ultimately walk alone.

No one can know exactly what you’re going through, and it can been exhausting trying to explain yourself and your feelings to others.

People might drop out of your life after suicide loss, and it isn’t uncommon to lose family members too. Everyone and everything is reorganizing around the loss, and this can be one of the most difficult and painful parts of the grief journey.

Guard your heart and steer clear of people and things which might drain or upset you, especially negative media, toxic people, and anyone who tries to minimize your experience.

Your energy is probably at an all-time low now, and nothing will deplete it faster than exposure to another’s anger, fear mongering, and/or anything even potentially upsetting.

Choose wisely, and spend time with others who accept you and your current reality without trying to rescue or fix it.

You aren’t sick, and you don’t need fixing. You’re grieving, and you only need to be seen, heard, and validated.

Supportive people might be hard to find, but they’re out there. I found many online through coaching and support groups. Be relentless in your search, and connect with those who help you feel safe, accepted, and connected.

Connection is the key to survival.

5. Accept your current reality as much as possible, even though it sucks.

I know the “why’s” are killing you, and you’re beating yourself up for words said and unsaid, missing “the signs,” or not being more supportive.

You did your best in the moment, and beating yourself up won’t bring your loved one back. Trust me, it’s also the quickest route to your own demise. We can’t change the past, no matter how often we replay it.

Your loved one made a split decision and didn’t ask for your permission. You didn’t get to choose or say goodbye.

You’ve been shaken like a snow globe, and now you’re doing all you can to survive this experience. Give yourself a break. Give yourself a lot of breaks.

Don’t expect to keep up with things as you did before your loss. Your body and brain are processing and integrating, and it will take a significant amount of time to feel any sense of normalcy again.

Go easy, and above all else, let go of anything not completely necessary for survival. (The cleaning? It can wait.)

I know it’s difficult, but ask for help with chores you can’t do now. Solicit child care so you can have blocks of time when nobody needs you. (Schools, churches, and work friends might know of people who can help.)

Give yourself permission to grieve, in your own way, and for however long it takes.
You didn’t ask for this and you didn’t deserve it either.

You deserve to live the rest of this life on your own terms and in your own way.

You get to decide now what that life will look like going forward.

I know our experiences are different and if you’ve lost a parent, child, or spouse, my pain in no way rivals yours. I get that.

Still, within this vast and lonely wilderness, I hope you feel a quiet kinship anyway and know, without a shadow of a doubt…

you always have a silent partner in me.

Complete Article HERE!

Moving Forward After the One You Cared For Dies

Grieving caregivers typically face a challenging mix of emotions

By Julie Gorges

As anyone who has had a loved one die knows, grieving is a heartbreaking journey. When you’re a caregiver and the person you’ve been caring for dies, experts on grieving agree the psychological outcome and healing process are somewhat different. That’s especially true if your loved one had dementia.

I was the primary caregiver for my mother, who had Lewy Body dementia during the last years of her life. I learned that grief takes many forms, and it isn’t just about mourning someone after they die. When your loved one has dementia, you lose that person in an excruciating way — a little bit at a time. As a result, some of the grieving process begins to take place while you’re still caregiving.

After my mother died, I not only lost her, but part of my identity as a caregiver. My life had changed drastically overnight.

Other complicated feelings often come into play. “After caregivers lose the person they cared for, there is often less grief alone, but a mixture of other emotions,” explains Dr. Marc Agronin, a geriatric psychiatrist and author of The Dementia Caregiver: A Guide to Caring for Someone with Alzheimer’s Disease and Other Neurocognitive Disorders. “Those feelings may include sadness and uncertainty about the future, along with some degree of relief and a desire to move forward.”

After a Death: A Mix of Emotions

This was certainly true in my case. After my mother’s death, the emotions were overwhelming. I was relieved all of my heartbreaking duties as a caregiver were over. No more medical emergencies, constant worrying and sleepless nights. I also enjoyed my newfound freedom to take a vacation, go on a leisurely walk, spend quiet time with my husband or simply enjoy a book.

But there was a lot of guilt mixed in for feeling that way. I also felt remorse about the times I wasn’t the perfect caregiver and questioned whether I made the right decisions along the way.

On top of that, I felt lost. Caring for Mom had been my life for a few years. Most of my thoughts and feelings had revolved around her care. After my mother died, I not only lost her, but part of my identity as a caregiver. My life had changed drastically overnight.

Accept Your Feelings and Move Forward

So, how can you move forward will all the intense and contradictory feelings that come with the territory?

What I learned is that you have to accept all your emotions and be patient with yourself. Feel everything you need to feel. Lean on loved ones. Honestly discuss your thoughts and feelings with those close to you.

However, as time goes on, it’s important not to allow sorrow to become a way of life or dwell on all of the “should-haves” that interfere with recovery. In fact, you’ll need to forgive yourself for mistakes you think were made while caregiving and stop feeling guilty that you’re relieved to have your life back.

The goal is to let go of negative feelings and enjoy a productive life once again.

How is that accomplished?

After my mother’s death, I took an important step that helped me pick up the scattered pieces of my soul and begin living again.

I deemed the year after my mother’s death, my “year of healing” and listed three non-negotiable things I had to do each day. There was nothing new or revolutionary on my list. Just a few simple things that provided an anchor, ensured that I took the time to care and focus on myself and helped me get through a bad day.

My list included:

  • Read something spiritual and inspirational each day. If you’re a religious person, now is the time to embrace your spirituality and rely on your faith to help you move forward. It’s so easy to become sidetracked and allow time to slip by without any spiritual fortification. I realized daily reading, meditation and prayer were necessary every single day.
  • Exercise. I’m not talking about running a marathon or doing 50 deep squats. But, even if it was only for 15 minutes, I did something for both my physical and emotional well-being. Maybe I’d take a stroll through the park listening to the birds sing, do some Pilates or walk the dog around the block listening to soothing music.
  • Do something you love. I thought about what used to make me feel happy and brought fun and joy to my life. Then I made a point of putting those treasured activities back into my daily life. In other words, at the end of the day, I made sure that I did something just for me.

You know what? My list worked. Accomplishing these three things every day helped me feel calmer, more centered and, yes, happier.

I’d recommend making a list of your own. Maybe you’ll include laughing each day, spending time in nature, learning something new, being silly or enjoying time with loved ones.

Helping Others Helps Yourself

Perhaps one of the most important items to put on your list is to perform one simple act of kindness for someone else each day. Compassionate deeds and volunteer work can help you find meaning and purpose again.

“I think focusing on others helps a person to move forward,” says Vicki Tapia, author of Somebody Stole My Iron: A Family Memoir of Dementia and co-founder of AlzAuthors, a website featuring authors who write about their experiences related to Alzheimer’s and other dementias.

Tapia cared for both her parents with dementia before their deaths. “Doing something helpful outside of yourself can often be a balm to the soul, whether it’s lending a listening ear or volunteering to help with a support group for other caregivers,” she says.

Finding a New Perspective on Life

Losing someone you love changes how you look at the world and forces you to acknowledge that life doesn’t last forever. The experience can clarify your priorities and redefine your path. So, embrace the new you and your new life.

“Find a new role that provides meaning and purpose,” suggests Agronin. “This might involve renewed relationships with others, volunteer work, travel or some other pursuit that provides a sense of personal direction.”

Several months after Mom died, my husband and I took an anniversary trip to Chicago. Even though I have a fear of heights, I was determined to sit on one of those scary glass enclosures that jut from the Willis Tower Skydeck, a whopping 103 floors above the city. I had this overwhelming feeling that I had to start living again and this was the first step. So, I bravely forged forward onto the glass and I felt alive, empowered and revitalized.

I have faith that you’ll take that first step too. You will heal, move forward, and rediscover yourself. You will feel happy again. As Martin Luther King Jr. famously said: “Take the first step in faith. You don’t have to see the whole staircase, just take the first step.”

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