Anxiety - My Sister's Terminal Illness

[Andrew]

Hi All

I'm writing this mostly because I need to get it out, but if any of you have any wisdom to share I would appreciate hearing it.

My older sister has been diagnosed with pancreatic cancer, and based on current testing she is advanced, there is little that can be done for treatment. My sister is the only girl in a family of 5 and has always been a special person in the family as she has worked to hold us together. I guess the rest of us tend to be stoic and independent and she is unafraid to show her emotions. I'm the youngest sibling and because we were a big family and my parents were older when I was born, she was both a friend and a caregiver when I was a child.

Now, I'm a 46 year old man with a family of my own. My sister has 3 grown boys but has adopted 2 small girls (10 and 18 months) and continues in her tradition of being fully family focused. My parents are now elderly (87 & 85) and are diving in to help my sister and her husband. At this point, my parents are struggling, my sister is feeling guilty because my parents are struggling and I'm about to board a plane to fly across the world (Africa to Canada - just to be there for a week).

All of the above things are just life, and I know that I will do what I can to help. That my siblings will do what they can to help. That my sister's boys will do what they can to help. Her husband is an amazingly solid man and seems to be calmly dealing with it all as it comes.

What I am struggling with is how I feel. The grief I can manage. What is really challenging is the anxiety. I feel absolutely undone, insecure, fearful, and if anything shameful. But I have no idea why. I'm scared to go to the airport and get on the plane, but I travel all the time without fear. I am afraid that I will insult my parents or siblings with my actions, but I am just doing what I can. I'm afraid that I am somehow behaving irresponsibly for leaving my job for a week, despite the fact that in the 12 years I've been a traveling expat employee I've never used the emergency leave clause of my contract. I'm afraid to appear weak, but all I want to do is talk about this situation to everyone all the time. Ultimately, I'm just scared, and have no reason to be.

So I am writing this out. Putting it down and spilling my guts as it were.

If you've any advice, I'd appreciate hearing it. But even if you have nothing to contribute, I appreciate the opportunity to share it.

Thanks

Andrew

[kayc]

Andrew,

I am so sorry for this whole situation, but especially that she has advanced cancer while she has such very young babies to raise. I'm surprised her husband is taking things as they come as most of us would be feeling quite undone about now.

I don't have any advice, but I do want to say that your feelings are all quite valid. It's natural to feel fear when facing all of the adjustments and changes this will mean for your family. It sounds like your sister has been the glue that held it all together in your family, and losing someone we love is never easy. I can tell you that you'll get through this and learn to cope, even while acknowledging it won't be easy. My world turned upside down in the blink of an eye when my husband died ten years ago and has not been the same since. At first I didn't know how I could live without him, let alone still be here ten years later, but somehow we do what we must. While my life took a drastic change, I have learned a lot through this experience and memories I have with this dear man have had to suffice, have sustained me and will continue to throughout my life. I imagine it will be the same for you.

It does help to express yourself, it helps to know you are not alone in what you're going through, it helps to know there's others that understand and care, and I'm glad you've found this place, it's a safe place to come to.

[enna]

Hi Andrew,

I am so very sorry to hear of your sister’s advanced diagnosis of pancreatic cancer and at such a young age. This must be so very hard for all of you and being so far away can’t be easy for you.

What a beautiful thing that they have adopted two small girls. I am sure that her boys will continue to watch out for them. Of course, it is difficult for your parents. It is not easy at any age to be parents and they are so ready to slow down at their ages now. Families have a way of helping each other just as you are doing right now by getting on that plane and going to be with your sister.

You mentioned how the anxiety seems to have taken over and that you are ‘scared’ to get on the plane. From what you have said Andrew your sister was not only your sibling but also your caregiver. This can be a tough challenge for you as you will face seeing your sister vulnerable and perhaps not as strong as you have seen her all your life. She is still your sister and that love is still there.

Go with an open heart and know that you will be a source of great comfort when you see the family.

Anne

[Andrew]

Kayc & Enna... thanks for your kind words, which ring true. I have done a bit of research and understand that anxiety in the face of grief isn't abnormal. I also know that I am doing the right thing by going. But I guess I am a 'typical' man in that I seek simple and straightforward reasons to feel something. So to do what I know is right, and still feel afraid, is a very unsettling set of emotions. People think of me as a bit fearless, because I usually feel anxiety only up until I decide to take action, once the decision is made, I usually calm down. This is something different. I suspect that this situation has raised up some specific emotions around my relationship with my sister, my parents and my other siblings that I've never dealt with. That and my 'go to' response to everything is to fix it. This is not a situation I can fix. I don't think I do powerless all that well.

Anyway, I want to express my sincere gratitude for your responses. I really am just happy to know people hear and understand.

Thanks

Andrew

[MartyT]

I think you'll find us always ready and willing to hear and to understand whatever you wish to share, Andrew. You're at the beginning of a journey that will challenge you at every turn, but here you are among some very caring and experienced guides ~ and we'll be here for you whenever you need us.

I invite you to read this article, in hopes that it may help: Anxiety Attacks in Grief: Tools for Coping ♥

[kayc]

I think your feelings are quite common for men, and you're right, they do tend to want to fix things, and struggle with their feelings when they can't.

[Gailsing]

Hello

I can relate to you as I too am going through similar thing. My sister is 47 and was diagnosed 2 months ago with terminal cancer. We are best friends. I feel like I am sinking into grief or depression don't know which. All I can say is make the most of your good days and enjoy the moments you have together. I am muddling through as you prob are too.

Gail

[Suitearia]

Hello Andrew, how did your visit go with your sister and the family?

[kayc]

Not sure if Andrew is still here reading, but if so, we're still thinking of you and all you're going through, I pray for strength & peace, somehow, in all of this.

Gail, My thoughts are with you too. Sisters are great, and I dread the day I start losing mine, I can't imagine how hard it is, but I nearly lost two of them a few years ago and that was rough to go through.

[Alabama Nancy]

Andew, I understand how you feel! My older sister has a very rare disease called PSP, Progressive Supranuclear Palsey. She has been progressively getting worse for 6 years now and can no longer speak. Swallowing is a real problem and she can only walk a few steps with assistance from a 24/7 caregiver and her husband. I don't know where she gets the strength to keep trying. I have had alot of challenging jobs and always felt competant, but now I don't feel strong and competant at all. Our "fixer" roles aren't working. It is so hard to watch someone we love suffer and be powerless to be of any real help. I go through the same anxiety you do when it comes to flying to California to see my sister and her husband. It is so hard to watch her suffer, but then I chastize myself for being so weak. I put on a brave face during the weeks I am there and am a worn out emotional wreck when I get home. Then I have my schizophrenic sister in Michigan along with my 102 year old Mother. Give me strength. I feel like I am sitting on a time bomb, never knowing what the message will be when I pick up the phone. All we can do is our best and that includes caring for our own mental and physical health. Keep supplementing your visits with loving phone calls and some cards. Come to think of it, that can be a challenge too. My sister recently had a birthday and the cards usually say "Happy" Birthday. So, I hope that your have a loving companion that will help you through this and some absorbing work and hobbies to give some respite from sad thoughts. This is my first post and I appreciate the opportunity to learn from this blog. I understand the feelings you have when it is time to make travel plans.

[kayc]

Nancy,

I hope you will start your own thread so people can post to you, a way to keep track of what you write and others write to you. It's so important to have a safe place to come to and express ourselves and know we are heard and someone understands...often that is not the case with friends who haven't been through it. This is a safe place where we have been through the loss of a loved one and many of us have, in addition, been caregiver as well.

I am so sorry for all your sister has been going through, and the whole family as well. I recently had a friend die from ALS (Lou Gehrig's) and his experience was similar to your sister's. He did not have family here but the church rallied around him. The men took turns helping him shower (with a chair) and he had a part time caregiver that the VA paid for (20 hours/week) but one lady from our church in particular was there for him day after day. She cooked, cleaned, even helped him with his personal care, helped him pay bills, etc. She was the widow of his best friend who passed earlier. He left his house to her, she didn't know it until after he passed...she was going to lose her because she couldn't afford the payments after her husband died. It's neat to see people caring for each other, family or friends!

Yes we all need prayer when we are caregivers...or patients, either one. You are in mine, as is your sister and her husband.

[Alabama Nancy]

Thank you for your reply to my comments and suggestion to start my own thread. I need to spend some time thinking about what I want to say and will start a thread soon. Nancy

[Andrew]

Hi All

Thanks so much for the additional comments on my thread. I'll provide a quick update. My sister is still with us, but the pain has gotten very rapidly worse and she has been in and out of hospital. Her cancer in untreatable, with the exception of managing the pain and it isn't easy to watch and be powerless. I am grateful that I went to Canada when I did and had an opportunity to spend some time with her while she was very much present. That time didn't assuage either my guilt or my anxiety, but we both said a few things that needed to be said. Families are enormously complicated and emotional, it is impossible not to have history, and I can say I've done my part to try and clear up what I can.

Now my wife and children are in Canada on an extended holiday. My wife has been enormously involved and supportive to both my parents and to my sister. While I am not directly providing support aside from a few kind words, I am very relieved to have someone there who gives me regular updates and is fully competent to support my sister's family and mine.

I've always been a lucky man. I am involved in a 12 step support group for an unrelated issue. Once I doubled up on my activity with that group, which requires I be of service to others, I have had my anxiety largely go away. Now I just feel sad, and that I can live with.

Dear Gailsing and Alabama Nancy. Thanks for contributing to this thread. Gail I think I understand how you feel and the depression. When you watch a sibling die, you have to face not only the grief but also your own mortality. I'm a 46 year old man in good health, I still feel inside like I did at 20. It's quite overpowering to have the facts of life brought home so clearly. On top of that, to also watch someone you love suffer and not to be able to do anything is depressing. The release from my feelings has come from focusing on the things I can fix and the people I can help.

Alabama Nancy. I can't imagine having to watch my sister get progressively worse from a slow moving terminal illness. My sister was hospitalized for much of last week and both in extreme pain and confused. My wife had organized a schedule where she and a few other family members would spend shifts in the room so my sister would never be alone. It was all that she could do. As I speak to my wife on a daily basis, I was party to my wife's feelings as she sat in that hospital room late at night. It brought home to me the depth of suffering of everyone involved, but most particularly of the pain my sister had to face. On the one hand you want to see her go quickly so that she stops suffering, on the other, you want to keep her here with us. It is a no win situation, either course leads to misery. One of the things that my sister said when I was at home, was that she was grateful to be the one with a terminal illness. She didn't want to have to watch anyone in her family die, and all she had to do was die with dignity. She has granted us the right to be sad, and the right to move on after. I hope I can live up to the example she is setting.

Thanks again for the support.

Best wishes to all.

Andrew

[kayc]

I am so sorry for your sister's suffering and for all you are all going through. I hope they are better able to manage her pain. Is she still at home? I don't know how it is there, but when we went through it with my MIL, home health came in twice a week, I was there everyday taking care of her and the home and tending company. Morphine helped up until the end when her circulation wouldn't move the pain meds through her body.

It's very hard to go through but the time spent with them is very precious too.

Thinking of you and keeping you in my prayers.

[Alabama Nancy]

Andrew, Your sister shows so much love and selfless concern for her family. Your comments to me have helped and are very appreciated. I understand the conflict between wishing the suffering could end, and grieving her anticipated loss. It is a struggle to put on a brave face!

[Andrew]

Another quick update... helpful this morning.  I am sitting at work, a week before a big presentation, and it isn't exactly the environment to process a lot of grief.  My sister was hospitalized this morning, and won't be returning home.  From the sounds of her condition, her liver is now shutting down, either from the advancing cancer or the massive dosages of various medications.  She told us that she intended to live until September, so it looks like she will make it. 

I did get to spend another 2 weeks at home during the end of July.  By that point, Nancy wasn't too aware of the people around her.  She was still able to function at some level, but the drugs had her in and out of reality a lot.  My wife, children and myself, went to say goodbye to her the day before we got on a plane to return to Africa.  I really didn't think that Nancy would be aware that we were saying goodbye forever.  However, when we got up to leave she burst into tears, which rapidly spread to all of us.  I suppose that it was a moment that I will look back on with gratitude, but not one I care to relive.  Terribly hard to say goodbye with such finality.

At this point the only thing left to do is prepare plans for an emergency return to Canada for a funeral.  And a few prayers that this portion of her disease doesn't have her hanging on and suffering too long.  Thanks for the forum. 

[MartyT]

Difficult as it must be for you to do so, Andrew, I appreciate your sharing this update with all of us. I hope it helps to know that we hold you and your sister in our thoughts and prayers. ♥

[kayc]

My sentiments with you also, I am so sorry for all your sister and your whole family are going through.  It's a very hard thing to experience.  I'm glad you've been able to visit her.  God be with all of you through this.