What to do when a loved one is diagnosed with a terminal illness

terminal illnessThis can’t be real.  This must be someone else’s life I have stumbled into.  That’s what I thought upon learning that my dad had a terminal illness.  I suppose everyone must feel like that when they get the news that a loved one has pancreatic cancer.  There’s no easy button to help with that.

We knew something was wrong.  He wasn’t sleeping, losing weight, not eating much at all.  The doctors couldn’t find anything at first.  Until they did.  Unfortunately, they found a big something that wasn’t going to be cured by any of their fancy drugs.

As a veterinarian, I am familiar with being on the end of giving bad news.  I am not, however, accustomed to receiving bad news.  News like, “We found tumors on your dad’s pancreas and liver,” and truly understanding what that means.  That news hits you in the gut like a ton of bricks and makes it hard to breathe.

Shock and denial are naturally involved when you hear something like that.  Some people might collapse on the floor or start screaming or sobbing wildly.  Not me.  I’ve always been a low key, in control of my emotions sort of gal.  I never sob in front of strangers.  That’s way too personal.  However, what I did was start shaking uncontrollably.  Not like a seizure.  Like I was in the Arctic and could only warm myself by shivering.  I did also tear up, but no ugly crying here.

A terminal illness diagnosis sucks

Does my reaction sound unusual?  Strange?  Should I have had a more dramatic response?  The thing is, there is no wrong way to behave after hearing that your loved one has a terminal illness.  It SUCKS!  You’re allowed to act exactly as you need to do, as long as you don’t bring bodily harm to yourself or those around you or destruction to the surrounding environment.  Besides that, do what you need to do to release those strong emotions you’re feeling.

Believe me, you will be feeling some strong emotions.  You will need to set them free somehow.  Apparently, my release was through shivering.  You might want to run up and down the hallway or find a quiet corner to cry in.  It really doesn’t matter what you do.

Just know that whatever you do or feel is okay.  No one else knows how you feel, so they don’t get to dictate how you act.  Maybe you just freeze and don’t do anything at first.  That’s okay.  Maybe you need to call someone to talk it out.  No problem.  Just do what feels right to you at the time.

Also, TAKE. YOUR. TIME.  To digest and process the news and your emotions.  To think about the next steps.  To research.  Most of the time, decisions don’t have to be made immediately about treatment options.  Therefore, you don’t have to feel like you’re in a mad dash to the finish line.  Give yourself some time.  Slow and steady, like the tortoise.terminal illness

“I feel like I’m waiting to die”

Those are hard words to hear.  Maybe they aren’t politically correct.  But they’re very honest.  That’s what my dad told me a few days after the big bombshell.  I think it’s pretty natural to feel like that.  Obviously, the definition of a terminal illness is a disease that can’t be cured and will lead to death, sooner rather than later.  That’s a tough pill to swallow.

So, how do you deal with that?  Well, as I told my dad, “You live.”  You take whatever time you have left with your loved one and live for the moment, for the NOW.  I realize it’s such a cliché.  However, it’s also completely applicable to this situation.

I have seen many an animal with a terminal illness.  Obviously, they didn’t know they were going to die soon.  Therefore, they continued to live in the present moment playing with their favorite toy (or shoe), eating their favorite treat (or Lego), laying on the lap of their favorite person.  Be like an animal.

The doctors might give you a time frame for the disease, but they’re really only guessing.  They can use statistics to give you an average survival time for a certain percentage of patients, but that’s only an average.  Meaning some patients live longer and, unfortunately, some live shorter.  My thoughts on statistics is that it can be academically interesting, but not always clinically relevant.  What I mean by that is every person is an individual, not a statistic, and follows their own path based on their own life choices and disease.

Like my dad’s oncologist said when Dad asked him how long he has, “You already know the answer to that…only God knows.”  I really appreciated him saying that.  He wasn’t being enigmatic.  He was simply saying that he doesn’t have all of the answers and is merely a human being, not a god.

What I suggested to my dad is to make a list of things he would like to do, a “bucket list”.  That way, instead of sitting around waiting to die, he is taking control of his life.  He might not be able to control the cancer, but he can control his response to the cancer and what he does before it takes him.  You can help your loved one with this also.  It’s just a change in attitude that can make a big impact.  You LIVE with the time you have left, instead of waiting to die, just like this women did.

“I’m afraid”

Fear is naturally going to be involved in the process of any terminal illness.  Fear of the unknown.  Fear of missing out on the lives of those surrounding them.  Fear of dying alone.  It’s completely normal and okay for you and your loved one to be afraid.  Dad and I are still tackling the fear.

However, what isn’t okay is to let fear control your life.  Fear can be paralyzing and quickly take over and swallow us whole if we let it.  That doesn’t help anyone.

So what to do with the fear?  One way to cope is to learn more about the illness.  I’m a firm believer in learning as much as possible about something to help quench fear.  Learn how the disease works in the body and what it looks like.  YouTube has videos on everything, so you can certainly find one to help you see what’s going on in the body.  I found one to help my dad better understand a procedure he was having.  It really helped assuage his fears about the procedure.  Knowledge is truly power and can empower your loved one to take back some control over their illness.

Another way to deal with fear is to help your loved one prepare for death.  Help them get their affairs in order.  Create a will if one isn’t in place.  Ask them what sort of funeral/memorial they would like.  Maybe you think it’s morbid to plan these things, but it can bring great peace of mind to have everything done.  Your loved one will know that their wishes will be carried out when they are gone.

It never hurts to pray for strength.  Whatever your spiritual beliefs are, prayer can help bring strength and peace.  You don’t have to believe a certain way for prayer to work.  Prayer is really about calming the mind and body, as discussed here.  You can set the anger, sadness, fear and whatever other emotions you have free so they don’t eat you up inside.terminal illness

You can do this!

But you can’t forget to take care of yourself.  Self care is going to be even more important now than ever before.  Self care is not about being selfish, but about keeping yourself healthy in order to be there for your loved one with a terminal illness.  Think about it.  If you’re sick, you can’t be around someone with cancer or another illness, whose immune system is already compromised, right?

Being a caregiver is extremely draining.  Make sure you have a list of things to help you relax and relieve stress that can be done anywhere.  Need some help?  Read my self care post for ideas.  When my dad was in the hospital, I would go down to the family lounge area and listen to a 15 minute meditation.  When he was sleeping, I would do a few minutes of simple exercises, like lunges or squats.  Those things really helped me feel like me during a difficult time.

Allow others to help you.  People will want to help, but won’t know how to do that.  Let them bring you meals, take your children for an hour or two or help you clean.  They can also visit your loved one who is sick and give you some time off.

Another way others can help is by spreading the word about the illness.  This takes some of the burden off of you and your loved one.  As my dad discovered, telling people about the disease can be exhausting.  It’s like reliving the diagnosis over and over again.  Let others tell extended family and friends for you.

Make sure you have a strong support system.  You have to be the support for your loved one, so you need your own shoulder to cry on.  Someone with whom you can just sit in silence or who can be a good listener.  I’m fortunate to have an amazing support system of my husband, mom and close friends.  I’m confident that they would do anything for me.  Therefore, they give me strength to do what needs to be done.

You might have different people to play that role, but make sure you have someone.  If you absolutely don’t have anyone to lean on, check out local or online support groups.  Sometimes, knowing you’re not alone in what you’re feeling can help.  You could also find a counselor to talk to.  Another idea I found is to create your own personal website about your loved one’s terminal illness on Caring Bridge.  That way, you can send people to the website to share updates and ask for support.

A terminal illness diagnosis is never going to be easy.  You will feel like you can’t breathe and will never be joyful again.  However, just know that you’re not alone in this journey and YOU CAN DO THIS!  Take it day by day, minute by minute if you need to.  That is what my family is doing.  Our story is far from over.

Know that you are stronger than you think you are.  I know this because somehow I find the strength to keep going with a positive attitude for my dad.  If you need more help, please read my grief post for more ideas.

Now I would love to hear from you.  Please share your thoughts and stories with me in the comments below.  I read and respond to all of them personally as my commitment to my readers.


Joyful thought for the day, “Turn your face to the sun, and the shadows fall behind you.” -Maori proverb (yes, I think it’s still possible to find joy in the face of death)

 

Heidi Ball
Heidi Ball is a licensed veterinarian who left general practice in order to focus on her health and family, and still does occasional relief work. She is a mom and wife who loves to cook real nourishing food for her family, garden in her illegal front garden bed, listen to enlightening podcasts, go out on foodie dates with her hubbie and be a homebody with her family.

One Response to “What to do when a loved one is diagnosed with a terminal illness

  • Karen Tagg Gellner
    3 months ago

    Heidi, I thought I would pass out when I heard my Dads terminal diagnosis. I too shivered all thru his journey. I think it’s a response to paralyzyzing fear. At least for me it gave us time to leave no words unsaid and being grateful for the time we had together. After all is said and done, you are proud you did all you could to show your love and there were no regrets for later.

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