Losing A Loved One To a Chronic Illness and Handling Grief

We have all been there. We see a post or get a call, and the floor drops out from under us. We don't know what to do or what to say because we have just been told that one of our loved ones has passed away, without rhyme or reason, due to complications from a chronic illness. How do you handle that? It seems like it goes beyond the regular grieving process because you watched this person suffer and wrestle with a chronic illness for a long time before they passed. You get angry because people make off hand comments that they knew this person was going to die because they were so ill, yet the last time you talked to your loved one, they were fine. So, how do you deal with the news, knowing that you will never get to have another conversation? Knowing what you do about their illness?

With Gastroparesis, it can be a lot more sneaky. I mean, most people seem fine on the outside but are suffering immensely behind the scenes. If you want to know more about how people with Gastroparesis live and what they suffer from, I have great resources in my blog. But this article, this is to honor those fallen GP Warriors, those who have given their lives to fight for a cure for Gastroparesis. We will never forget them and we will keep them alive in our hearts and our memories, and keep them alive in our fight. So, again, how do you deal with the loss? Based on my personal experiences, I'm going to share some things that really help me when I lose a loved one, especially really good friends, to an invisible illness.

I have another article with the stages of grief in it, entitled, "The Grieving Process for a Chronic Illness, and How to Overcome It" that you can find by clicking here: http://www.emilysstomach.com/2014/02/the-grieving-process-for-chronic.html. This will tell you about the stages of grief. I recommend reading it so that you can prepare yourself and to know how grief effects people.

The only logical answer I can give you is that there is no way to get over a loss. You can move past it, but you never truly get over losing a loved one, especially to a chronic illness.

Lean on support groups, with other people who have gone what you are going through, to help you through this difficult time. I recommend that highly, because people are social animals, and it helps to have empathy and people on your side with what you're going through. I started a Facebook Group, Grief Group for GPers, for those who have lost loved ones to Gastroparesis and who want to talk about it. We ask that everything posted in the group, stays in the group, due to family privacy matters. We also have an album of loved ones who have passed that we keep updated, so that we never forget why we are fighting and who we are fighting for, when we fight for things like awareness, research, and a cure for Gastroparesis. The group can be found here: http://www.facebook.com/groups/gpgriefgroup/.

Joining a support group can definitely help, but I also recommend writing. Writing helps me a lot. When I'm able to get out all of my feelings onto a laptop or a piece of paper, I feel purged and a lot better. You can tear up the paper afterwards or delete a word document, if you don't want anyone else to stumble across it but it helps to get your feelings out. I write this blog to help me deal with even having an invisible illness and most days, it helps me keep my sanity. You don't have to start a blog, but keeping a notebook will help. Like I said, you don't have to keep your feelings once you've written them down. You can throw them away, tear them up, do whatever you like to the page(s) that you write. I like to keep mine to reflect back on how I was feeling and how far I've come since that point. I have a journal that I write in and carry around with me, in addition to this blog.

Lean on your friends. I know this seems like a no-brainer, but your friends are there to support you and help you. Invite them over to your house (I don't know about you, but it's hard for me to go out since I suffer from nausea and vomiting a lot due to GP, gastroparesis, but everyone's GP is different) and put on a movie that you all love, play a game, board or video, and talk. It helps having a distraction and your friends will be there for you. You can tell them about your loved one, relive memories, and honor them in your own way. It helps, at times like these, to have friends you can depend on to make you feel better and the interaction will really help, especially if you've been keeping yourself in isolation.

And the last thing that I would recommend, especially if you can't go to the funeral, is to have your own ceremony. I know this sounds weird, but hear me out. You can do something simple and personal, between you and the loved one you lost. I take flowers, they can be hand picked or bought at a store, and I sit in the backyard. I place them at the edge of the yard, and I talk to my loved one that I've lost. I tell them how I feel, and you can do this in your head if you want to, especially if there are people outside. The important thing is to let out any pent up tears and feelings. Talk to the person you lost like they were there with you, next to you. Lay down the flowers and have your own moment. You don't need a funeral to let them know how you feel. I know I have a hard time going places because I vomit quite a lot, and I am always nauseated. Being in a car exacerbates that feeling, because I get motion sick, so I have my own ceremony, in my backyard. I know this sounds odd, but it really helps me. It helps me say goodbye and saying goodbye, in your own way, is very important. It's important that you let go. You can do whatever makes you feel comfortable, this is just my own little ritual I want to share with you to give you an idea of the things you can do. This is just very personal for me, and this is something I've never told anyone. A good friend of mine, whom I lost, once told me that she didn't want to die because of the suffering she would cause to the people left behind. I still think about that and she's been gone for twenty years.

We have lost five people so far, just this month, from complications due to Gastroparesis. It breaks my heart and saddens me...but it also gives me purpose. I want to continue fighting for those people whom we've lost, and I want to do it to keep them alive. One day, we will find a cure. But, for right now, I have high hopes for more awareness and research. I actually met a lady at the dentist who knew all about Gastroparesis, and I didn't have to explain it to her. She had read about it somewhere. It's going to happen. It may be slow, but awareness is taking shape, and hopefully, research and a cure aren't far behind it.

May our loved ones walk among the stars and be proud of us for carrying on and fighting for Gastroparesis.

My friend shared this article with me and I wanted to post it here, because it is amazing and I think it would help with the grief.

According to Funnyshare.com (http://beautythings.info/2017/09/24/when-asked-for-advice-on-how-to-deal-with-grief-this-old-man-gave-the-most-incredible-reply/),

"When Asked for Advice on How to Deal with Grief, This Old Man Gave the Most Incredible Reply.

Someone on reddit wrote the following heartfelt plea online:

'My friend just died. I don’t know what to do.'

Many people responded with words of encouragement, but one response in particular, by an older gentlemen, really stood out from the rest…

Alright, here goes. I’m old. What that means is that I’ve survived (so far) and a lot of people I’ve known and loved did not. I’ve lost friends, best friends, acquaintances, co-workers, grandparents, mom, relatives, teachers, mentors, students, neighbors, and a host of other folks. I have no children, and I can’t imagine the pain it must be to lose a child. But here’s my two cents.

I wish I could say you get used to people dying. I never did. I don’t want to. It tears a hole through me whenever somebody I love dies, no matter the circumstances. But I don’t want it to 'not matter.' I don’t want it to be something that just passes. My scars are a testament to the love and the relationship that I had for and with that person. And if the scar is deep, so was the love.

So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can’t see.

As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while, all you can do is float. Stay alive.

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out.

But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life.

Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O’Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out.

Take it from an old guy. The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too. If you’re lucky, you’ll have lots of scars from lots of loves. And lots of shipwrecks."

I do not have the source for this, but it does help me in times of grief:

Image Source: taken from Imgur

According to www.Churchill.com,

"Introduction - As much as we don’t like to think about it, death is a part of life. While it’s not a nice thought, there’s nothing we can do to stop those we love from passing away when the time comes. It’s understandable to feel sad and even helpless when this happens, but the pain will become easier to cope with over time.

Common feelings after a death

People go through various stages of grief when they’re coming to terms with a death. These five stages have been studied for years:

1. Denial. By denying the death has happened, it prevents the person from being overwhelmed by grief. It’s normal to feel numb, wondering how life can go on. It can be hard to accept what’s happened.

1. Anger. Being easily irritated is a normal response to the loss of someone close to you. You might feel like snapping at people, even if it’s unlike you.

1. Bargaining. While we feel helpless, it’s natural for thoughts to turn to what could’ve been done differently. For example, being nicer to the person or getting medical help earlier.

1. Depression. When our thoughts return to the present, it often leads to another level of sadness. At this point, it’s normal for a person to struggle most with the loss.

1. Acceptance. You’re not okay with what’s happened, but you’ve reached a point where you can get on with your life without it having too much of an impact day-to-day.

Understanding the common stages of grief can help a person be better prepared, but everyone grieves differently. There’s no right or wrong amount of time to be upset about losing someone, so let things progress naturally.

The biological process of grief 

Your body responds when you’re grieving. Once grief has triggered a response, you’re likely to experience a number of side effects, including:

• Boosted adrenaline. Our brain triggers the fight or flight response, leading to a faster heartbeat and additional release of adrenaline. You might feel on high alert.

• Exhaustion. Often caused by a lack of sleep, grief can lead to insomnia and depression – leaving you drained of energy and motivation.

• Digestion problems. Issues with your digestion can be common when experiencing sadness.

If you lose someone close to you, be prepared for short-term changes to your health. It’s normal to feel the effects on your body. Staying active and eating well can help.

Daily life when you’re grieving 

How to maintain your regular lifestyle
The impact a death will have on your life is significant. But there are ways to cope with a loss, including:

• Create a routine. Having a routine in place can help keep you balanced. A structure will give you a solid foundation to rebuild from, at a time when you’re struggling to find your feet.

• Talk to loved ones. Open up to the people closest to you. You’ll be sharing a lot of the same feelings and talking about them is an important part of grieving.

• Encourage yourself to participate. It’s natural to withdraw from life when you’re under stress. If you find yourself feeling this way, take small steps to do the things that usually make you happy.

Helping children cope with a death 

The loss of a loved one can be especially hard on children, because it’s probably the first time they’ve experienced these feelings. You’ll play a large part in helping them deal with their grief.

• Use clear and honest words. Be as clear as possible when speaking to a child. They’re probably struggling to understand what’s happening, so being open will help them process what’s going on.

• Listen to their concerns and questions. Make sure you answer any questions they have, and let the child know it’s perfectly normal to feel the way they do.

• Explain funerals. There’s a good chance a child won’t know what a funeral is. If you want them to go, give them a description of why it happens, and what to expect on the day.

• Help them remember the person. Talking about memories of a lost loved one can be helpful to children. This positive energy is therapeutic and may help them battle through the worst of what they’re experiencing.

• Do things to keep their minds active. Keep a child happy and distracted with activities such as family days out. Sitting inside for too long won’t help anyone.

Helping adults around you to grieve 

It’s not only children who grieve. You might want to help a partner, friend or family member who’s experiencing this kind of pain. Some of the best methods include:

• Listening to them. Don’t presume the grieving person would want to be treated the same way you would. Just having someone to listen to them can help. You don’t always have to give advice or have a solution.

• Talk about the person who’s passed. Sometimes people feel as though mentioning the deceased will be upsetting. But somebody who’s grieving might want to talk about their loved one, so give them time to bring it up.

• Reaching out. Don’t wait for someone to ask you for help. While you don’t want to be pushy, it’s nice to make sure a person knows you’re there if needed.

• Point them towards professional help. If they’re struggling to come to terms with their loss, you can suggest they seek professional help.

Getting help with grief 

Finding the support and care you need at this distressing time can make a huge difference. 

Getting emotional support from those around you 

During difficult times, we rely on those closest to us for support. But we’ve got to want their help, so bear in mind these points:

• Share your issues. Make sure people around you know if you’re struggling. There’s a better chance they’ll be able to help if they know what’s up.

• Say yes to help. If someone reaches out to offer you advice, be open to their support. A heart-to-heart can make a difference. It’s worth getting a range of support too, from friends and professionals.

It can be uncomfortable to open up about your issues, but it’s important to separate yourself from those doubts to get the help you need.

Taking steps to help with your own emotional health 

Looking after your emotional health and well-being is always important, especially when you’re suffering a loss.

• Stay physically active. Exercising has been shown to have a positive impact on not only your body, but also your mind. Depression and anxiety can improve when you’re active.

• Take up a hobby. Take your mind off what’s troubling you by enjoying a hobby of your choice. It’s important to do things you enjoy, and not feel guilty about having a good time.

• Get enough sleep. A lack of sleep can make things worse. Try to start relaxing before it’s time to go to bed

Support lines and communities 

If you find yourself struggling, and feel like you can’t turn to anyone, there are support helplines to guide you. 

You’ll be speaking to trained professionals, with experience of helping people who are grieving. Just some of the incredible services available include:

• SupportLine. Provides phone counselling to help people with a wide variety of problems, including bereavement.

• Bereavement Trust. Focused around helping those who are experiencing grief. A team of volunteers work round the clock to make sure people can get the help and support they need.

• NHS. If you’re ever feeling dangerously low, the NHS offers a suicide hotline. Always get the support you need.

Whether it’s from your friends, family or these dedicated services, there’s always support available to you after a death. Try not to isolate yourself – instead, reach out and get help. 

If you feel like you want to talk to people who are in a similar situation to you, support groups can be a great help too. Having someone to chat to, who can relate to your situation, is incredibly useful. 

Useful links
https://www.cruse.org.uk/children/how-to-helphttps://www.helpguide.org/articles/grief/coping-with-grief-and-loss.htmhttps://www.mariecurie.org.uk/help/support/bereaved-family-friendshttps://www.nhs.uk/conditions/stress-anxiety-depression/mental-health-helplines/http://www.parentcompanion.org/article/understanding-the-stages-of-grief"

A friend sent me some websites that might help you in your grief and how to handle it with children, and the estate of a loved one:

http://www.lclark.edu/live/files/5969-grief-at-worka-guide-for-employees-and-managers

https://www.petcoach.co/article/grief-the-loss-of-a-pet/

http://www.drugrehab.org/coping-stigma-grieving-overdose-death/

https://www.vitas.com/resources/grief-and-bereavement/helping-grieving-children

https://www.cancer.org/treatment/end-of-life-care/grief-and-loss/depression-and-complicated-grief.html

https://www.neptunesociety.com/resources/preparing-for-the-death-of-a-terminally-ill-loved-one

https://www.homeadvisor.com/r/create-peaceful-at-home-hospice/

https://privatebank.wf.com/conversations/article/settling_a_family_estate

https://www.nytimes.com/2012/09/20/garden/letting-children-share-in-grief.html

https://www.parents.com/toddlers-preschoolers/development/social/talking-to-kids-about-death/

https://www.redfin.com/blog/how-to-be-estate-executor

To the Loved Ones of a Person Living With Chronic Pain

This is from an article I found online that I wanted to save. It's from http://themighty.com/2016/01/to-the-loved-ones-of-a-person-living-with-chronic-pain/. I wanted to put it in my blog so that I could come back later and refer to it and find it if I needed to. I like having things in one place so it's easier for me to find it. This is a great article and I wanted to save it in order to share it with others. The writer put down exactly how I felt and this article really spoke to me. I hope it will speak to you, too.


And it reads,

"I’m not sure if chronic pain is isolating in and of itself, but it’s often the lack of understanding that (at least for me) makes me feel alone sometimes. Sometimes the lack of empathy is more unbearable than the pain itself, like you’re living in a state that is so entirely foreign and inconceivable to most people — and that is what makes it alienating.

Good portions of my day are usually spent being guilt-tripped by friends that I haven’t seen them, haven’t FaceTimed them, never call, never text, etc. Before I always felt the need to apologize and explain myself, but most of the time now, I am so sick of constantly having to explain myself. People don’t realize the fear — the fear of being judged, the fear of not being understood, the fear of feeling vulnerable. That fear strengthened my relationships with close friends and loosened my ties with acquaintances.

In my worst pain, all I wanted was to be distracted. I wasn’t capable mentally and physically of contributing to conversations, and constantly explaining to friends and family what my pain is like, the current updates on my health and hearing the (mostly) senseless feedback was unbearable. (Keep in mind, for most of my grueling experience with pain, I had gained weight I am slowly losing, and compared to what I used to look like, I generally feel like I let myself go. My hair and make up is never done. I dress for comfort now mostly.) Sometimes I avoided people entirely because as nice as it is sometimes to be asked how you’re doing, it can also be a pain if you’re being asked 15 times in a row. I already do this with doctors almost every day.

Some people have taken it personally that I haven’t tried to “rekindle” relationships with them. The best response I have to this is that it is nothing personal. I am generally so overwhelmed by all the things I have to do and am so exhausted that old friends unfortunately get passed to the wayside so I can maintain the friendships for the friends who aren’t just “checking in” but calling me every day. To me, the people who loved me at my darkest are the ones I prioritize.

Here are several things I believe need to be known:

In general, I would rather hear about you. Your day, your funny experiences, etc. than talking about my health problems. I generally feel uncomfortable having to explain myself, and for some people, it’s just too damn sad, so at the risk of making it uncomfortable, let’s keep it about you. Or just send me funny things. I always appreciate it. No one understands how boring this gets sometimes. I generally try to “shield” people from how bad my pain really is.

If I cancel plans last minute, it’s never because I don’t feel like coming. I am in my house, doctor’s offices or volunteering for a good percent of my day, so if I can handle it, I always want to go out. Some people are good about this and some obviously aren’t. I’ve just decided I can’t feel bad about making decisions that may affect other people. I’m responsible for myself and need to take accountability for my actions. No one understands my body like I do, so I have to make judgment calls…whether it upsets other people or not.

I try to explain to people that my days sometimes feel like a sh*tty, charged iPhone. I have limits. There is only so much I can do every before my battery dies and everything takes some battery life. Especially those moments when you think you have 10 percent left and all of sudden you’re at 2 percent. Sometimes this becomes an anxious social situation. Situations where I am out with friends and I haven’t driven — I have no control. If I need to go home but can’t, I panic. I avoid these situations as much as possible.

Having a “good day” doesn’t mean I’m better; it just means I’m having a good day. And even if I’m smiling and looking like I’m having a great time, there’s a good chance I’m screaming internally. If I need to leave right at the end of a dinner or cut things off early, again, it has nothing to do with you.

When I say that I can’t be cured or that I’ll never be healthy, I’m not trying to be negative. My life is not CrossFit. I have boundaries and limitations. This is my reality and I’ve come to terms with it. I’ve accepted it. I hope others do, too.

Don’t be offended if I forget things you’ve told me. When my pain is bad, my memory can be extremely foggy and my short-term recall is really bad. Most people refer to it as “fibro fog,” and it’s a real thing. Google it.

I don’t want to be known as “the girl with pain.” I want to be normal and treated like everyone else. I still want to be invited to things. I hate to play the pain card and truly feel happiest when I’m in a “normal” setting.

Just because you see me posting online doesn’t mean I’m feeling better. Sometimes I am in a ton of pain but my choices boil down to sitting and crying or distracting myself.

I always try to be in a good, positive mood, but sometimes when you’re running on no sleep with lots of pain, it compromises your mood. Sometimes I just don’t want to do anything with anyone. Or talk to anyone. I need my alone time.

Small, thoughtful gestures mean the world to me. Actions always speak louder than words.

Dealing with chronic pain drains me every day. People who have known me forever have known me as an extrovert, but that is changing.

Even if I’m having a bad day or a lot of pain, your problems are still valid to me. Never think that because my problems seem more serious that I don’t want to listen to yours. I never purposefully try and make it a competition.

I still struggle with figuring out what I need from my friends and family sometimes. I hope people understand that I never intentionally try to discuss my health for pity, sympathy or attention. I wish people could understand that dealing with this is just a big part of my life, whether I want it to be or not. I try really hard to help people that are dealing with the same problems. I don’t want to be pitied, babied, fawned over or put on a pedestal. And certainly not be to looked down upon or judged.

It’s when people are uncomfortable with me that I become uncomfortable with myself. But I am comfortable with myself, and I own who I am.

Follow this journey on Slightly Distressed Damsel.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images"

A Letter From A GPer to A Friend/Family Member

I wrote this letter as a note on my public Gastroparesis Facebook page (www.facebook.com/emilysstomach) today, trying to get out how I feel while trying to get other people to understand how lonely gastroparesis can be. I wanted to get out my feelings and I wanted to try and let my friends and family know why I am the way I am right now. It's not because I don't want to go out, and it's not because I don't want to spend time with them - smells from a movie theatre make me ill and I'm worried I'll vomit in the middle of a movie or an outing, embarrassing myself. So, I wanted to write a letter to them to help them understand why I am usually home but that I don't like to be home by myself. I would definitely welcome company. This illness is isolating and it is depressing after a while because people give up on you. No one wants to call you to ask you to hang out knowing you will say no and no one really wants to come over to your house to hang out when they want to go out and see a brand new movie they've been waiting months for. So, I wanted to put how I felt down in words. You'll find those words below:



Dear Friends and Family,

We are fighters. We are overlooked because our illness is invisible...but the pain is visible behind our eyes if you look closely. We are strong...we have to be stronger than most in order to survive on a day to day basis. We are all from different walks of life. You may not know we suffer, but we do. Gastroparesis can touch anyone at any age - children, teenagers, adults, the elderly...and there still isn't enough research to determine why.


GP is caused when the vagus nerve is damaged, and nerve damage in any other part of the body is severely painful, so imagine having nerve damage in your stomach where you have a lot more nerves, sensitive nerves. Vagus nerve damage can be caused by a variety of factors, like diabetes, and other reasons.

People tell us gastroparesis shouldn't hurt, but it does. If other people go to the doctor and tell the doctor they have nerve damage in their knees or their back, they're treated for pain and it's understood that nerve damage there hurts, so why would nerve damage in the stomach, with the most sensitive nerves not be as painful or more painful?

If you meet someone with gastroparesis, please be kind. We are all fighting a battle to stay alive, not to starve to death, and to try to be as normal as possible. We miss being able to eat during holidays and to take part in things that we used to. Most of us can't because we lack the energy, which stems from lack of nutrition, but it's not by our choice.

If you know someone with gastroparesis, be kind to them. Give them a hug. Invite them out anyway and if they can't go out with you, please try to make an effort to go to them to spend time with them at their house. Loneliness is hard and so is isolation. We miss company and being social. Some of us just need to be near a bathroom but we miss our friends and family.

Most of the time we feel like we live in a prison we can't escape from. Just please try to be patient and try to understand what it's like walking in our shoes. It's a hard road, and all we need is a little bit of support and understanding. That would mean everything to us if people took a little bit of time to understand what we go through on a daily basis and still wanted to be around us, despite all of this. It would make us cry with joy just to have people understand, come over, and even do something low key like watch a movie with us. It would mean more to us than you would ever know, just that simple act of kindness.

We are not making excuses when we say we cannot go out. We are not trying to avoid anyone. We aren't trying to hurt anyone's feelings. We feel devastated enough that we have to stay home most of the time, but that doesn't mean you're not welcome to come over and visit. We would love that. So, for those of you who have friends with #DTP or Gastroparesis, please know that it's NOT you or anything you did - not your fault at all, we just cannot do the things we used to do and that kills us a little bit inside. It's just as hard for us to adjust to this as it is for you.

We want normal back, or as close to normal as we can get. So please, try to make the effort to come over to our house and distract us. We need it. We need the happiness you inject into our lives. We need you. We need our friends and family and support. You are our lifeline to the outside world. You don't realize how important you are to us, but you really are. Thank you for being a friend, even though we know it's hard on you. Thank you for being you.



Sincerely,
GPers Everywhere


**Please support my Facebook page, where I wrote this note to depict how I was feeling today, by kindly clicking on “like” to show your support and to raise awareness for gastroparesis on Facebook: www.facebook.com/emilysstomach