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End-of-Life Planning: A Legacy of Clarity and Care

End-of-Life Planning: A Legacy of Clarity and Care

Though death is a painful reality we instinctively avoid, delaying preparation and planning can rob us of control and clarity when facing uncertainty. Avoidance may feel protective, but in fact, avoiding these important matters can inadvertently cause more harm than addressing them head-on. Thoughtful planning can provide some clarity and peace while also easing the transition for the family after the patient has passed. 

Why is end-of-life planning important?

Failing to plan for end-of-life can lead to significant challenges for both the patient and their loved ones. Below are the potential consequences of not planning, along with how proactive preparation can help prevent them.

Loss of control over final wishes: 

Without documented preferences, decisions regarding medical care, burial, cremation, or memorial services as well as other important decisions may be left to others, increasing the risk of choices that do not align with your values. Planning ensures that your personal preferences are clearly outlined, allowing your wishes to be honoured.

Uncertainty in medical care:

Without advance healthcare directives, medical professionals may have to make critical decisions without clear guidance, potentially resulting in unwanted treatments. Additionally, loved ones may be placed in the difficult position of making medical choices on your behalf, carrying a significant emotional burden. Establishing medical directives enables you to specify treatment preferences, ensuring that healthcare providers follow your instructions and alleviating uncertainty and distress for your loved ones.

Legal and financial implications:

The absence of a will or estate plan can result in assets being distributed based on default legal processes, which may not reflect your wishes. Additionally, unexpected medical expenses, long-term care costs, and funeral arrangements can place a heavy financial strain on families. Proper estate and financial planning ensures that assets are managed according to your preferences and minimises financial burdens for loved ones.

Family conflict:

Too often I have witnessed disagreements over care responsibilities, financial matters, and inheritance because instructions are unclear. Planning reduces the risk of misunderstandings, promoting unity and preventing disputes among family members.

Unresolved grief:

When loved ones are left to navigate end-of-life decisions without clear guidance, uncertainty and doubt can deepen their grief. Questions like “Did I make the right choice?” or “Is this what they would have wanted?” can weigh heavily, leading to emotional distress long after their loss. Thoughtful planning provides clarity and reassurance, allowing families to focus on healing rather than unanswered questions.

When does one start end-of-life planning?

Start now! It is never too early, but it can often be too late! Planning means preparing in advance – not reacting in a time of crisis. 

Where does one start?

End-of-life planning can feel overwhelming but breaking it down into manageable steps makes it more approachable. Below are a few basic guidelines to help you get started.

  • Start by clarifying your priorities, ensuring that your medical care, financial security, and family harmony align with your values. 
  • Gather and prepare essential documents such as an advance healthcare directive, Will, and power of attorney to protect your wishes legally. 
  • Identify loved ones who can help you plan and those with whom you will share your information. 
  • Discuss your planning concerns and needs with your healthcare provider or care team – they can offer guidance and support as you navigate this important process. 
  • If you feel too ill or overwhelmed to handle the planning, delegate tasks to trusted individuals to manage different aspects of the process. Ensure they have your best interests at heart and always review and verify their decisions.
  • Use an existing checklist as a guide or create your own with your loved ones. 

Whatever approach you choose, commit to it and take action. Planning ahead allows you to spend more time cherishing the moments that matter most. Thoughtful preparation leaves behind more than just legal documents – it creates a lasting legacy of clarity and care, offering peace of mind for both the present and the future.

This is list can help you get started: download here.

Author: Rebecca Lazarus, social worker

Supporting Children and Teens Through a Parent’s Serious Illness

Supporting Children and Teens Through a Parent’s Serious Illness

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No one likes to think about their own mortality—especially when they’re raising children. But for many parents living with a serious illness, or simply wanting to plan ahead, the question quietly lingers: What if I die? How can I prepare my child or teen if that were to happen?

Although death is a natural part of life, talking about it often feels unnatural and painful. It’s even harder to face this conversation when it involves your children. Still, part of preparing for any outcome, especially when facing a serious illness, is making sure your children are emotionally equipped to understand, process, and cope if the unthinkable happens.

This journey begins with small, open conversations that help children make sense of life’s uncertainties. They need to be part of this journey; not just for understanding, but for healing, should the time ever come.

Start with Communication

One thing nearly all research agrees on is that honest communication is vital. Start by asking your child what they think is happening. Have they noticed changes? What are they wondering about?

This is a good starting point for deeper, more honest conversations. As your child begins sharing their understanding of the situation, gently and honestly introduce words like ‘serious illness’ and ‘dying.’ If death is a possible outcome, it’s important they hear and understand that word from you, so they can begin making sense of it in a safe and supported way.

Keep These Tips in Mind:

  • You can’t shield children from all pain. They are perceptive. Even if you try to protect them, they will sense that something is wrong. Help them feel informed, not confused or excluded.
  • Don’t wait for the “perfect moment.” Instead, create safe and honest spaces for ongoing conversations. Open communication now can reduce fear later.
  • Be the one to talk to them. Children and teenagers should hear serious news from you and not accidentally from someone else.
  • Listen carefully to their questions. Their understanding will depend on their age, personality, and life experience. Be present, and follow their emotional cues.
  • Use clear, simple language. Use language that matches the child’s developmental level. Avoid euphemisms like “in treatment” without explanation, and steer clear of false reassurances such as “Mommy is sick, but she’ll be okay.” These kinds of statements can create confusion, false hope, or unnecessary fear. Honest, age-appropriate communication builds trust and emotional security.
  • Offer emotional support, but don’t hesitate to ask for help. Supporting your child is hard when you’re emotionally vulnerable yourself. Accept support from others, whether that’s family, professionals, or community resources.
  • Let them help, but don’t burden them. Involve them in small, age-appropriate caregiving tasks if needed, but ensure they remain in the role of a child. If you are parenting alone, bring others in to help maintain structure and stability.

Creating Memories

Preparing children for a possible loss is not only about explaining what could happen, it’s also about leaving behind connection and comfort. If the worst were to happen, these preparations can become treasured sources of strength.

Help your child or teen build memories now. Even while you’re still here, this can help them feel closer and more secure.

  • Write letters your child or teen can read at key moments in life: graduation, birthdays, first heartbreaks, or just when they miss you. These can hold your love, encouragement, and even advice.
  • Create a memory box with simple, meaningful items: a scarf, a watch, a favourite recipe, or a small memento from your youth. These objects can become anchors for your child’s sense of connection.
  • Involve them in meaningful rituals, not necessarily funerals, but rituals of bonding. Let them help pick a photo for the wall, a song to share, or a story to write down. These create emotional tools they can carry forward.
  • Encourage journaling.  A private journal allows children and teens to process their feelings freely. Writing can be a safe place to release fears, hopes, and emotions. Over time, this may even lead to deeper conversations.

Facing the Unknown, Together

Preparing for the possibility of death is emotionally complex, for adults and children alike. But regardless of age, we all experience the same loss. And in a family, that loss is shared.

Losing a parent changes the entire family dynamic. It’s a lifelong shift, a kind of emotional disability the family learns to live with. That’s why preparing early, honestly, and together can help everyone navigate that shift if and when it comes.

This journey is about more than preparing for death. It’s about creating connection, clarity, and continuity. So no matter what the future holds, your child never doubts that they were loved, supported, and understood.

Written by: Ilana Kilian, social worker

Sources:

Does your healthcare team know what matters most to you?

Does your healthcare team know what matters most to you?

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How to Talk to Your Healthcare Team About What Matters Most – Insights from Dr. Margie Venter

I was recently fortunate enough to pack my bags and travel with my family. That said, I have three boys—and in the midst of planning and packing, I sometimes wonder if the chaos is worth it! One gets hangry, so snacks are essential. Another always forgets something warm—he hates anything long and “claustrophobic”—and then ends up cold and borrowing a sweater. And, for everyone’s sake, devices must be fully charged for the long road. Especially since I like to take the smaller, winding routes—and I won’t be forgiven if we get lost.

Any journey involves planning: for what’s likely, and for the “what-ifs” (which is why I tend to overpack). I’ve often thought this is a far better metaphor for serious illness than the war analogy we usually hear. Wars imply winners and losers and often leave destruction behind. Journeys can be gentle strolls, even if long. Other times, they’re more like steep hikes—uphill, with only brief plateaus to catch your breath. Sometimes there’s hail; sometimes, sunshine. Sometimes you realise you should’ve turned left. Still, it helps to know where you’re headed and what to bring.

Likewise, when facing a serious illness, many people find it helpful to talk about what to expect and do some planning. It’s equally important for your medical team to understand what matters most to you, so any treatment decisions can be shaped around that. This isn’t the same for everyone, and as healthcare providers, we sometimes assume rather than ask. That’s where a ‘serious illness conversation’ comes in.

You may have heard of Advance Directives, Advance Care Planning, and Living Wills. This is similar, but more personal. It’s a conversation between you and your healthcare team that focuses on your values and goals in the context of your health. These views may change as your journey continues, so it’s a discussion worth revisiting. You may also want to include people close to you. Documenting the conversation can help guide decisions—whether made by you or, in some cases, by others on your behalf.

Here are some questions people have found helpful to explore:

  • What would you like to know about your illness and what lies ahead?
  • What information would help you make decisions about your care?
  • What does quality of life mean to you? What does a good day look like?
  • What matters most to you, and what would be important if you became sicker?
  • What are your biggest fears or concerns as you think about the future?
  • If you became sicker, how much would you be willing to go through for a chance at more time? Are there treatments you would rather avoid?
  • How do you want to involve the people you care about?
  • Is there someone you trust who could make decisions on your behalf if needed—a healthcare proxy?

Contrary to what many assume, talking about these things often brings relief, not anxiety. Research has shown that it gives people a greater sense of control and helps the medical team make not just clinically appropriate, but personally meaningful recommendations.

It’s never too soon to have this conversation—but too often, it happens too late. Your doctor may never raise the topic. It may be up to you to start it: “Doctor, I want to talk to you about my goals of care and living with my serious illness.”

You can find more guidance and resources here: https://theconversationproject.org/

 

How does a professional carer support a patient and family during serious illness?

How does a professional carer support a patient and family during serious illness?

We recently checked in with *Sly, a professional carer to get a glimpse into the daily routine and challenges while caring for patients in a palliative care setting. Here’s what she had to share:

What does a typical day look like for you when providing care for a palliative patient?

A typical day starts with reviewing the patient’s chart to check for any medication changes since my last shift. If my shift begins at 6:00 a.m., I go through the charts to see how the patients have slept. I then order their breakfasts and prepare their medication. Once breakfast is served, I administer the medication and begin with the basics of care, like bathing the patients and making sure they are comfortable. Throughout the day, I keep checking on them, provide pressure care, and change their positions as needed while staying alert for any emergencies.

What challenges do you face on a daily basis, and how do you overcome them?

One of the biggest challenges is answering questions from family members or loved ones. Sometimes, they ask about the patient’s condition, and it’s difficult to provide a clear answer, especially when the condition hasn’t changed. You never know how they will react, and you fear saying something that could hurt them. To manage this, I try to be as compassionate and honest as possible, always putting the family’s emotional needs first.

Can you describe a situation where you felt particularly rewarded or satisfied with your work?

One of the most rewarding moments for me was when a family member mentioned they would come back just to receive the same care and love we provided to their loved one. Another time, a patient called her daughter and said, “Please don’t forget to get Sly some sweets.” These small gestures of appreciation make all the hard work worthwhile.

How do you take care of your own well-being while providing such intensive care?

For me, taking care of my own well-being means surrounding myself with supportive people and making sure I get enough rest. I love sleeping, and it’s my way of recharging after a long and demanding day. Taking time for myself helps me stay strong and keep providing the best care possible.

The role of a professional carer in palliative care is both challenging and rewarding. It involves not only meeting the physical needs of patients but also navigating emotional challenges with their families. Despite the difficulties, the small moments of appreciation and connection make it all worthwhile.

My Experience Caring for My Friend with Advanced Cancer

My Experience Caring for My Friend with Advanced Cancer

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I’ve known *James for several years from work. He doesn’t have a close relationship with his family, and there aren’t many people he could call close friends either. When his cancer got worse, he asked me to be his proxy. I didn’t fully understand what that meant, but I said yes. After his last hospital stay, it was clear that James needed constant care, so I invited him to stay with me for a while.

The Challenges of Being a Caregiver with No Experience

Caring for James was a huge challenge, especially since I had no experience. The first thing I struggled with was my physical strength—James was much bigger than me, and I was worried about how I’d manage to lift him if needed. It was also tough to balance giving him dignity while handling his intimate needs. I learned that I had to respect his choices, especially when it came to things like eating. I could only encourage him so much before I had to step back and let him make his own decisions. Balancing work and caregiving was another big challenge, one I hadn’t anticipated.

How I Took Care of Myself While Caring for Someone with Medical Needs

I was fortunate to have an incredible support system. My partner was very understanding and stepped in to help with James when I was too busy or too tired. We also had the help of a home-based care team. They came in regularly to check on James’s physical and emotional well-being and offered me a lot of guidance. Their support made it easier to handle the little things that were keeping me up at night, like worrying about his oxygen nasal prongs falling out. It sounds small, but they even suggested taping the prongs to his cheeks, which helped me sleep a bit easier. Having this support made my life as a caregiver much more manageable.

Here’s the Advice I Would Share with Those Considering Caregiving

I know that for some people, caregiving isn’t a choice but a necessity. For those who find themselves in this position, I encourage you to seek help from local agencies like home-based care and build a good support system around you.

If you’re thinking about taking on the role of a caregiver, I would say take time to fully understand what you’re committing to. I didn’t realise how physically and emotionally demanding it would be. I also didn’t realise how much help I’d need. It’s easy to think that feeding someone or helping them to the toilet is straightforward, but it’s so much more than that. The person’s health condition at the time also greatly impacts your role as a caregiver. Whatever your situation, don’t hesitate to reach out for help and build a network of support. It makes all the difference.

Finding Purpose and Support in Palliative Care: A Personal Journey

Finding Purpose and Support in Palliative Care: A Personal Journey

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Two years ago, I received a diagnosis that changed my life: colon cancer. Since then, my journey has had many challenges and uncertainties. For me, the essence of palliative care lies in the ability to continue living life on my terms despite the obstacles. My family, especially my grandchildren, son, and daughter-in-law, have become my driving force, providing me with purpose and strength during tough times.

The advice I can offer to anyone facing a similar battle: hang in there. Believe in your ability to overcome, and never underestimate the power of prayer. Trust in the expertise of your healthcare team—they are your allies in this fight.

In palliative care, continuity of support and care has been significant. I value having a consistent team I can trust at the hospital and those offering home-based care. Creating strong, trusting relationships with my healthcare team has helped me physically and psychologically, it has made me feel as if I am part of the team.

In my experience, palliative care isn’t just about managing symptoms—it’s about reclaiming control over my life. It’s about finding ways to live despite the circumstances. And with the unwavering support of my loved ones and healthcare team, I am determined to do just that.

So, to anyone embarking on this journey, remember: you are not alone. With faith, perseverance, and the right support system, there’s no obstacle too significant to overcome.

 

Shared by: A cancer patient in Cape Town

Navigating Emotions and Support: Insights from a Palliative Care Counsellor

Navigating Emotions and Support: Insights from a Palliative Care Counsellor

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What role do you play in the palliative care setting?

As a counsellor in the palliative care setting, I focus on patients’ and their families’ emotional and social needs. I’m particularly passionate about supporting families who are often excluded from the healthcare team. I also help coordinate referrals and prioritize the psychosocial wellbeing of both patients and their families.

Can you share a patient story where you made a difference in a patient’s life?

A woman recently visited my office to collect her chronic medication. During our conversation, I inquired about her mother’s well-being, as I knew her mother had been ill for some time. She shared that her mother was experiencing ongoing confusion. Taking a moment, I sat her down and listened to her concerns. 

I took the opportunity to offer support and education regarding her moms condition. We discussed strategies to comfort her mother, such as spending quality time with her and expressing appreciation. Following our discussion, I provided practical advice—simple gestures like sitting with her, gently brushing her hair, and simply being there.

Often, families are left out of the counselling space and must be prioritized as part of the healthcare team. The short amount of time I spent with this lady meant the world to her; she later came and thanked me for listening and acknowledging her fears.

What are the common challenges you face in the palliative care setting?

One common challenge in palliative care is helping patients and families come to terms with their diagnosis and prognosis. When someone is diagnosed with a serious illness, it can be challenging to move past those words. Life continues, and there is still so much living to do. Sometimes treatments don’t work anymore, and the decision to stop them becomes necessary; it can be difficult to accept, but there is always something we, as palliative care practitioners, can do to ensure people live as well as they can. 

Living well doesn’t come without uncomfortable conversations, but we can move forward once we get that out of the way. Building trusting relationships from the start is important for these conversations to happen; we don’t give up on patients and families; we offer them hope through supportive care.

Any tips for patients/families to support wellbeing or care

For struggling family members, remember to take care of yourself too. You can only help others if you’re well. Take breaks to recharge.

To patients, know that you’re not alone!

 

By:

Silindokuhle Makhathini

Palliative Care Counsellor

KZN (Rural)

From Crisis to Comfort: How Social Workers Enhance Palliative Care

From Crisis to Comfort: How Social Workers Enhance Palliative Care

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What is the role of the social worker in palliative care?

The social worker is essential in coordinating care and support for the patient and their family. We focus on relieving the emotional and psychological distress of the patient and their family and help them come to terms with not only the diagnosis but also the prognosis. We also try to reduce the social burden that often comes with illness.

Ultimately, the goal is for the patient to begin to find meaning in their life and to ensure their wants and needs are met as far as possible- this is what I consider quality of life.

We also support the family by assisting them with getting “affairs” in order- whether it be their will, funeral policies, advanced care directives, or social grants, we will help them.

What challenges do you face as a social worker?

In my experience, having difficult conversations is challenging for all involved. We always encourage transparency from the patient, their family, and the healthcare team. We want the patient and their family to be part of the decision-making team; this can assist us in addressing any questions and emotional distress, repairing relationships, and addressing any “unfinished business.”

What do you find rewarding about being a social worker?

Working with other medical professionals (doctors, nurses, oncologists) and allied healthcare professionals is satisfying. Working within a multidisciplinary team and the passion I see from my colleagues is remarkable. I learn so much from them.

Do you have any encouraging words for patients and families?

Yes, never lose hope; be open to new opportunities to grow, heal relationships, and focus on things that MATTER. Managing a disease can be challenging and a powerful time for spiritual healing.

Can you recount an experience where you supported a patient or family?

The treating medical team referred a patient to me after she spent three months in the hospital due to her progressive cancer diagnosis. She had informed her husband, parents, and siblings that she was receiving curative treatment.

Before she was discharged, the hospital team disclosed the patient’s true prognosis to the family. They called me in for emotional support. I sat with the patient and her husband. I explained how important it is to have these open discussions, address unfinished business, and express love for one another.

My patient was very emotional- she explained that she has never been one to communicate or verbally express herself. During one of our sessions, she told her husband how much she cared and thanked him for caring for her.

I encouraged her husband to open up and explain to her parents and sisters to do the same. Supporting her and her family and seeing how everyone could share their feelings brought me immense gratitude.

 

 

By: Connie Zulch

Palliative Care Social worker

Nourishing Words: The Role of Speech Therapists in Feeding and Communication Support

Nourishing Words: The Role of Speech Therapists in Feeding and Communication Support

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What Can a Speech Therapist Offer in Palliative Care?

Speech therapy in palliative care provides essential support, with speech therapists helping patients communicate, even in the early stages of a diagnosis. We help patients express their wants and needs, enabling them to participate in their care and convey their values to both their families and healthcare team. If verbal communication deteriorates due to the disease process, we work with individuals to maintain meaningful communication and social interactions for as long as possible.

Another key aspect of our role is addressing swallowing difficulties. Eating and drinking hold deep significance for most people—I’ve yet to meet someone who didn’t consider it an essential part of life. In palliative care, we prioritise the patient’s values and expectations to ensure eating remains as safe and enjoyable as possible.

We also support families in modifying diets to help patients continue enjoying favourite foods. Food provides comfort for many, and we aim to preserve that comfort throughout the palliative journey.

Are there barriers faced by Speech Therapists in Palliative Care?

Many people mistakenly believe that speech therapists primarily work with children, but our scope is much broader.

One of the biggest challenges we face is being consulted late in the disease process, often when swallowing and communication difficulties are already severe. At this point, deterioration may have progressed to a stage where support is limited and enjoyment is compromised. For example, if a patient can no longer communicate clearly due to illness, it becomes difficult to determine their wishes regarding eating, drinking, and communication. In neurodegenerative diseases such as dementia or motor neurone disease, establishing alternative communication methods late in the disease can be particularly challenging.

Another misconception is that speech therapy is only about improving speech. In conditions like motor neurone disease, where speech will progressively decline, our focus shifts from “fixing” speech to providing adaptive support and communication alternatives.

Additionally, there is a widespread belief that feeding a sick person will improve their condition or extend their life. However, artificial nutrition and hydration (ANH) are not typically indicated at the end of life. These discussions with families can be complex but underscore the importance of understanding and respecting the patient’s wishes early on.

Can you share an experience with a palliative care patient where speech therapy was helpful?

I once worked with a patient diagnosed with motor neurone disease early in her journey. During our initial conversations, we discussed the likelihood that she would eventually be unable to eat or drink by mouth and explored the risks and benefits of tube feeding. From the outset, she was adamant that she did not want a feeding tube under any circumstances. My role then became supporting her and her family as they processed and accepted her decision.

Ultimately, she passed away without ever receiving a feeding tube. Toward the end of her life, all she wanted was mashed potatoes and coffee, her favourite comforts. There was no judgment; our focus was on respecting her wishes. As long as she could enjoy those, we honoured what mattered most to her.

Can you share any tips with palliative care patients and their families?

I always encourage patients and families to reach out early after receiving a serious illness diagnosis. This doesn’t mean committing to ongoing therapy but rather starting a conversation about what to expect, possible outcomes, and available support.

If swallowing is a concern, families should watch for signs of difficulty—such as choking, coughing after meals, or unusually long chewing times. If these signs are present, consulting a speech therapist can help reduce the risk of complications like aspiration pneumonia and unnecessary hospital admissions.

Lastly, I cannot overstate the importance of maintaining oral hygiene. It may sound minor, but oral hygiene plays a crucial role in swallowing safety. If someone has difficulty swallowing and aspirates food or drink into the lungs, the presence of bacteria in the mouth increases the risk of pneumonia. For this reason, I advise brushing teeth at least three times a day for those experiencing swallowing problems.

Author: Teresa Teixeira, Cape Town based Speech Therapist

African mother and adult daughter taking a selfie while wearing traditional dress with ocean view in the background - Family love and technology concept

My Grief Counselling Story

Last year was one of the worst times in my whole life I had never in my 23 years of life experienced something this painful and traumatic from the visits to hospitals, doctors and clinics for tests and nobody could find a solution to my dear mom’s pain to being told she’s got stage 4 lung cancer and she’s got a matter of weeks maybe even days to live. 

My mother was fading day by day, the disease took over the body of the person I loved more than anything and the pain of watching her suffer and wither away tore me apart.

I was sure there was nothing that would get me through this! The fact of losing the one person who I never thought I’d ever lose, the one I feared losing most in this world. January 2023 came along and it happened! I got the call to say she had passed away and my world stood still. 

I started bereavement counselling to help me get through the experience and honestly I never believed it would help, but to my surprise having someone to talk to about the worst experience in my life helped more than anything. 

On the days I felt alone, like I was losing control, having someone there to listen and to give me the most comforting advice and reassuring me that it was all part of this long journey was certainly helpful. The counsellor never lied, she never promised things that she couldn’t make sure to provide. Counseling helped me understand the 5 stages of grief and how to get through each one; it also helped me open up.

Having bereavement counseling made me realize it was okay to talk about the pain , that reliving it for a moment helped in the end , that it was okay to be doing counseling that there was nothing wrong. 

It didn’t mean I was weaker for having someone help me deal and come to terms with things but it meant I was a strong resilient person for opening up and talking about the worst experience I’d encountered with a professional understanding person who was my guide in this tough journey. 

I now recommend people going through a loss to go and get bereavement counselling because it helps. It can’t take the pain away but it for sure makes it more bearable

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