Guilt After Death: The What Ifs

My fourteen year old daughter’s class mate died.   Fourteen year olds are not supposed to die and its hard to wrap your head around it when they do.

I try hard not to judge people by their outside cover; reserving judgement on their character once I get to know them but I’m human and I fail at this more than I care to admit.  I had reservations about her being friends with my daughter.  She had blue hair!  Not just a little, but the whole head was blue and a shocking bright blue at that!   She had a facial piercing and striking confidence and bravado for a child her age.  There was no way she would be a good influence on my daughter.

Turns out I was wrong.  She was also a kind loving soul who loved everyone around her and everyone loved her.  She accepted people for who they were and the personality gifts they each brought to her circle of friends.  She was the President of the Honor Society and a good student.   A student that teachers loved and admired.  She cared little what people thought of her except she found it fun to surprise them with a change of hair color.  In short, she was the person we should all strive to be as we slowly mature along this path called life.

Regrettably, she lost that shocking blue hair that scared me initially.  The ravages of medicines designed to cure pulled it from her head and left her head bald and her face swollen.

I can’t stop crying.   It’s been days and a couple of crying jags in public places I wish had not occurred.   But I can’t stop.  Of course I am sad that she died but even more so, I am crying because of the ‘what ifs’.

Nothing I could have done would have stopped her death.   I know that.  But I wonder what I could have, should have done, to help ease her and her family’s way along the path.   I talk big about understanding this path and not being afraid to discuss it.  But when I dropped my daughter off to see her friend, I quickly slunk past her Mom, afraid of asking the big questions.  How was her daughter really doing?  Where could I help?   What did her and her daughter need?   And the big one – was it a curable illness or was she terminal?  I was afraid of the answers.  Hopeful that if I didn’t ask the questions, I wouldn’t get the answer that I didn’t want to hear.

So I cry over my guilt.  The what ifs. 

When my Mom died, some of my biggest crying sessions came over guilt as well.   I couldn’t get over two things that I wish I could go back in time and fix.   The first was washing her so thoroughly in her last hours.   I asked the Hospice nurse to come help me bathe her and as we moved her from side to side she cried in pain.  I should have realized that perfect cleanliness was not what she needed at that time.  She needed to feel secure and pain free and so a gentle partial bath would have been fine, even if she wasn’t perfectly clean.  The second was not attending a family event I knew was important to her shortly before her death.  It was the last time we’d have the opportunity to experience that holiday with her and I missed it over stupid petty stuff.

I am still not over the guilt on those two items but it has lessened some.   While I know that both hurt her – one physically and one mentally – I am her daughter and she is my mother.    As a mother, I know that I would feel no resentment at all towards my children if they were in the same situation and would be upset if I thought they felt the way I do over it.   Mothers love their children and my mother loved me deeply and unconditionally.

I can’t go back in time but hopefully I can learn and improve from each failure in my life.  What would I have done differently?  I am not sure.     Her mother did not seem to want to talk as I dropped my daughter off but maybe it was because each person that came by slunk guiltily by in the same way I did.  She was probably used to it.  Maybe if I had stepped outside my comfort zone and asked how her daughter was really doing and what they needed, she would have responded and I could have made a difference.  Or maybe she would have snapped at me and told me to mind my own business. 

The rejection is what we fear and as a result we are trapped by inaction.   I could have been rejected but I also could have made a difference in the life of a child who was suffering and had such a short time on Earth to feel the love of friends.  That should have been worth the risk.

When the Surviving Parent Starts Dating

My Dad started dating pretty quickly after my Mom died. It shocked some. It shocked me.

Friends and family worried about how my sisters and I would react or feel. Some were angry with my father. They wondered how he could move on so quickly after my mother's death. Didn't he love her?  Shouldn't he mourn her longer?

Surprisingly, my sisters and I were the most comfortable with the idea. I can't speak for them and their feelings but for me, it was a sign that my father did indeed love my mother deeply and he missed her terribly. It was a sign that he wanted to try to find the comfort and love that he had experienced during their marriage. Being with another was not a sign of disrespect for her but instead just the opposite. It was a visible declaration that he wanted to do what he could to find love again.

Let me be clear.... it still was not easy. I worked hard on not imagining what happened during more intimate moments with his dates. I sometimes had to look away when I saw him place a familiar arm around a woman's waist or hold her hand. But seeing him experience the hug and touch of another woman was also comforting -- I was glad to see him smile and feel happy again. Quite the mix of emotions!

Bottom line though was that I wanted my father to be happy. He had been a loving and faithful husband down to the last minute of their marriage and I and everyone else had to realize that he was no longer married. We may not like the circumstances that made him a single man but that is what he was. I wasn't the one having to go home to an empty house with all the memories of my mother around. I wasn't the one sitting in church alone, in the pew he had sat with my mother for many years. I wasn't the one eating dinner alone with only the cat for conversation. Who was I to tell him that he had to do a certain period of grieving before he could find happiness again?

What worked for me may not work for your and your family but here are some pointers that may help:

Understand that its not your life: You may not like your parent dating again but its not your life. They are the one dealing with being alone and they have to make choices for themselves on what will make their life better.  Its their grieving process and each person deals with grief in a very personal and individual way.

The alternative could be worse: As much as you may hate your parent dating, the alternative could be a depressed parent who withdraws from the world. Many surviving parents never get over their spouse "leaving" them and just bide their time until their death.  I want my father to be happy.  I don't want him pining for a life with a woman who can no longer be with us.

Older people date different than younger people:  We have time.  They don't.   They have been recently reminded in a very stark way that life doesn't last forever and they need to seize the day.     While not all parents jump quickly into the dating pool, its not uncommon.

Stand up for them:  Not everyone will be as understanding of your parent dating.  You set the tone for everyone else.  Its up to you to show everyone else how they should react.   Although it may look easy, it can't be simple for your parent to begin dating someone else with the memories and potential guilt so if you can remove the judging of others that's one less thing they have to worry about.  I know it was difficult for some of my mother's siblings to know my father was dating and while it didn't make it "okay" in their eyes just because I said so, it did make it easier for them to accept when I said it was okay with me.

Be Honest:  If it bothers you that your parent is dating its probably okay to express it them as long as you also let them know that while it bothers you, you realize its still their life to lead.  Be specific on how they might help you -- maybe it bothers you the most when you see them standing in a place that was special to your parents -- let them know and maybe they can avoid that spot.  Be reasonable though.  Its not okay to tell them they can't date at all or that they can't be near you.  Some of this you just have to suck up and deal.

Moving on with our lives after a parent dies is not easy.  This is just one more hurdle to cross and while it sounds cliché, it does get easier with time.

Finding the Hero in the Dying

When someone is fighting cancer, they are lauded as a "Warrior."   Search the web and you can find sites like Cancer Warrior.  We congratulate people fighting cancer for being warriors and being strong -- we call them heroes for fighting the good fight. None of this is bad as it gives the cancer patient hope and encouragement.

What happens though when the patient decides they are done fighting and want to discontinue treatment? Are they no longer a hero? If they aren't a warrior or fighter or hero, what are they?  Are they a loser?  Someone who has given up and lost the fight?

Frequently the patient feels as if they are letting down their family by stopping the fight.   They feel their family and friends do not want them to quit fighting and they owe them because they have given so much of their time to care for them.   The patient's family and friends feel as if they need to make excuses about why the patient has "given up."

I think we need to change our feeling towards stopping the fight. We need to find the hero in stopping aggressive treatment and starting palliative or hospice care.  We need to ensure that the person who is living their life, well aware they are dying, know they are just as much a hero as when they were fighting their cancer.

What is courage? It is defined as the ability and willingness to confront fear, pain, danger, uncertainty, or intimidation.

"Courage, above all things, is the first quality of a warrior."
– Karl Van Clausewitz

I can't think of anything that takes more courage than embracing your last days on earth and confronting the fact that you are dying and most likely dying soon.   Being able to say "no thank you" to additional invasive treatments and instead focusing on LIVING the last days of your life with your family and friends, doing the things you want, hopefully outside the confines of the hospital.  That is courage and we need to celebrate that courage.

The courage of someone embracing their last days does not negate the courage of someone fighting their disease.  One patient's path is not right and one is not wrong.  Both patients are heroes and warriors and courageous.

One of the most difficult things I had to do as a caregiver of my mother, and probably will remain one of the most difficult things I will EVER have to do as human, was to say to her that it was okay to stop the treatment... that I had called Hospice to see what her options were and maybe she should talk to them as well.   That maybe it was time to leave the hospital and come home.  I felt as if I was letting her down and giving up on her.   That I WANTED her to die.

Of course, me wanting her to die was the furthest thing from my mind.  I wanted her to stop hurting.  I didn't want to see her lying in a hospital bed, struggling to breathe.  I didn't want to see her shrinking away with tubes and beeping monitors surrounding her.  I wanted to see her at home surrounded by her grandchildren, snuggling and reading them stories.

What made it hard was that I knew giving up on the treatments meant we were accepting that she was going to die.    It was what we all knew.. the proverbial "elephant in the room" but no one wanted to recognize the elephant.  Dammit, if we kept at the treatments, surely something would work.  There was always one more study or one more clinical trial.  Or maybe we just hadn't seen the right doctor.  Surely by calling Hospice I was declaring to the world and to her that I wanted my mother to die.

There were not many times I cried when caring for my mother -- mostly because I had to be strong in caring for her and there just wasn't time for a pity party.   This was not one of those times where I was strong.  After the conversation I cried with wracking gut wrenching, nearly vomiting sobs.  It was admitting to her and to me and to everyone I knew that she was going to die.    Its been almost two years since she passed and thinking about that moment in order to get it to paper is bringing the tears again.

The most amazing thing happened though.   She was happy.   After the conversation, I remember her sitting up straighter and looking determined.  The doctors looked relieved and glad the decision had been made.  Not everyone was on board immediately -- it took my mother some time to convince everyone that she was ready to stop the treatments.  But she was sure and I felt good that I had broached the subject.

She came home and grew stronger without the poisoning of the treatments.  Hospice came by regularly and provided counseling and medical advice and treatments designed to make her feel better day to day. Not treatments that would cure her but make it so she could live her life until her death.

She lived for three months after that decision and was able to attend her grandchildren's soccer games and birthday parties and go out to dinner with her family.  She had streams of visitors and she was able to enjoy their visits in the comfort of a home environment, rather than ill in a hospital bed.   She sat in the sunshine and enjoyed the warmth of upcoming Spring.

She is my hero.  My warrior.  And I know no one more courageous.    She confronted the fear of death head on with a smile and embraced the life she had left.

I wish the same for you and your loved ones.   Stopping treatments and embracing the time you have left makes you no less a hero.   You are a warrior of life and the courage it takes to take that step back from treatments to live that life needs to be celebrated.   Bravo for you!

What Do You Say to Someone Who is Grieving?

This is one of the most frequent questions I get.   Whether someone has lost a parent, a child, or a friend, we want to console and bring comfort but its hard to know what to say.  I think every situation is different and what works for one person may not work for another but here are my suggestions:

1) Just be there.   Its not necessarily what you say (or don't say).   A person grieving just wants to know that people care.  Its one of the main reasons we have funerals.   Besides letting family and friends say goodbye and come to terms that the person is in fact dead, its also a time to come together and console one another.  Don't worry too much about what you are going to say.  Just show up and be there.  The simple phrase, "I care and I am here" is good enough.  Too often people distance themselves from grieving people because they are afraid they will say the wrong thing.   Don't be afraid of saying the wrong thing - not being there is much worse.

2) Listen.   Being nervous about saying the wrong thing means that sometimes people start running their mouth and don't let the grieving person get a word in edgewise.    Let us talk about whatever we want.  It might be about how sad we are or the funeral arrangements or even something unrelated like the weather.  We may laugh or we may cry or just sit there quietly but whatever we do, its okay.

3) You don't need to fix the situation.  In fact you can't. We have to walk through the fire of grief to get to the other side and if we don't deal with it today, we will deal with it later.   Don't try to defuse the grief by changing the subject away from the person who died.  If we start talking about the person who died, that's okay.  Its also okay if we are crying.  Its not your job nor can you stop us from crying or feeling sad.   Just be there and listen.

4) Don't pretend it didn't happen or the person who died never existed.  Because people are afraid of making us cry, they stop talking about the person who died.   We WANT to talk about our loved one and hear how they made a difference in your life.  We want to hear your memories and we want to talk about our memories.  Yes.. we might cry... but that is okay.

5) Its all normal.   Each person is different and whatever works for them is what is normal.    Some people want to sit at home and cry.  Some people may want to actually go out to a party and try to forget for a bit about their grief.   Whatever the response it is normal and fine.

6) Offer specific help.   Grieving people frequently hear, "Let me know what we can do to help."   It is good intentioned and I'm sure the person offering really means it.  The problem is that the grieving person doesn't know what they need or if they do, they don't want to ask for it.   Instead offer something specific -- "My family would like to come clean your house before the funeral.  Is Monday good?"  Or "I make a great manicotti.  Can I bring some tonight for your family?"  With that said, the word OFFER specific help is important.  Give us the option of saying no as well.  We may be sick of eating our fourth pan of manicotti in as many days or the fear of someone seeing my bathroom that has been sorely neglected while caring for my dying loved one is not worth having it cleaned.

6) There is no timeline.   For me, the first few months weren't too bad.  I was busy planning a funeral and cleaning up a life that had been neglected in the month's leading up to my mother's death.  Plus it just didn't seem real.  There was no possible way she was REALLY dead.  It felt like she was just at her house waiting for me to show up.  It wasn't until three months or so after her death that it suddenly felt real and crushing grief set in.  By then, I'm sure my friends thought I was handling it well and had moved on to my new reality.  So don't be surprised if three months or even three years later something sets us off and the grief suddenly become fresh again.

And truly.... just the fact that you are reading this post wondering what you can do to help your friend means that you will do just fine.   You care.  And that is enough.

Speaking for Your Dying Parent to Medical Staff

As my mother became weaker, it became difficult and exhausting for her to communicate with medical staff. Different doctors would ask the same things over and over. Trying to be polite and also attempting to make sure each doctor had the information they needed to effectively treat her, she tried to answer the best she could. But it was exhausting and exasperating. Breathing and living were difficult some days. Adding repeating yourself repeatedly was beyond difficult and it seemed a waste of energy.

Because I spent so much time with her I had a decent idea of what the answers were but I didn't want to speak for her and get it wrong. Eventually, a system evolved though.

Doctors would ask questions and I would answer for her but then let them know that if I got it wrong she would correct me. I paused occasionally and turned to her to ask if she agreed. At that point, all it took was a quick nod to confirm. It was much less taxing of her energy and because I had the energy to expand, the doctors got a much more comprehensive answer.

Other tactics to ensure doctors got the answers they needed were:

* carry our own copy of her medical history for reference
* have a quick reference sheet to hand to the doctors that they could keep that included current drugs, brief history, and latest status
* always ask for a copy of the medical records when we left so we could keep a complete history (did you know that you can ask for a cd for yourself each time you get an MRI or CAT scan?)
* utilize the help of nursing staff as they sometimes have more time and are more willing to give info than physicians -- make friends with them!
* be nice. This seems like such a common sense thing but medical staff are frequently verbally abused because they are facing frustrated caregivers and patients. Being nice but firm will get you much further than screaming though.

My Mom called me her bulldog and meant it in the most complimentary way. I spoke for her and made sure that she got the care she needed. Its true that the squeaky wheel gets the grease and when you are sick its hard to be squeaky.

Facing your Own Mortality as a Caregiver

I've heard it over and over again. As an adult child moves past their parent's age of death, they breathe a sigh of relief and can't help but be surprised they lived past what they thought would be their last breathe. Whether its 50 or 90, we tend to think that we will follow in our parent's footsteps and there is some scientific proof to back that theory.

Many genetic diseases have hereditary links. For example, if your mother died of breast cancer, this doubles the chance of developing the disease yourself. In the United States, heart disease is the leading killer.... a somewhat inheritable but most times preventable death. Granted, cancer follows at a close second place but many cancers are not genetically linked.

But we all say it and think it... my parent died early and so will I. Or I have genetics on my side... people live forever in my family so I will too. I am not a scientist or even an expert on the subject but I do know how to Google so I was curious... is there any scientific proof that if your parent dies early you will too?

The first article I brought up was http://ageconsearch.umn.edu/bitstream/7145/2/dp060004.pdf which surprisingly cited a number of studies that showed there is NOT a strong correlation. Dr. Roizen on http://www.sharecare.com/health/longevity/how-parents-lifespan-affect-lifespan states pretty much the same thing. He cites the Framingham Study as the most comprehensive and summarizes that they found, "about a 6 percent correlation between life span of the parents and life span of their offspring, meaning that many other factors affect longevity as well. If both your parents lived past the age of seventy-five, the odds that you will live past seventy-five increase to some extent. .... Some genetic conditions, such as being a carrier of the BRCA-1 breast cancer gene.... is one of the instances where genetics can make a big difference."

So science says not to worry... just because your parent died at 61 (the age my Mom died) does not mean that you will too.

Phoooey on that. Facts are one thing but emotions don't always follow facts.

I was okay when my mom was dying because I was so busy caring for her and I didn't have the time to consider my own mortality. After her death though, every little illness became monumental. Bloating? Probably stomach cancer. Respiratory issues?... couldn't be a cold or just that I was out of shape and fat... it was probably the start of something serious and life threatening.

I began to look at my kids and wonder if I would see them have their own children. Would I see them married and with gray hair or would I be long gone and just a picture on their end table? Would I have the chance to cuddle my grandchildren? Tell them stories and watch them so their parents could have a night out.

People tell me I am like my mother. I am in many ways... and in other ways I hope not.... despite me loving her fiercely, she still drove me nuts. We both have the same issues with weight and similar health issues too -- thyroid and arthritis among them. If we have the same health issues, then won't pancreatic cancer fall into my bucket as well? She was one of the more health conscious in her sibling group -- she ate a nearly organic diet, worked daily on the farm, drank rarely and never smoked. She should have lived the longest but she died the youngest of six siblings. Doctors really don't know what causes the type of pancreatic cancer she had. They say its not hereditary but since they don't know what causes it I am not ruling genetics out.

Good things have come from the worrying. I took a good look at my life and priorities and decided I was spending way too much time at work and not enough with my children. My youngest daughter informed me I had never chaperoned one of her elementary school field trips. I couldn't imagine that to be true but when I objected and tried to come up with an instance, I realized she was right. I had been too busy running my company and volunteering for causes, that while they were important and life changing for someone.... they weren't life changing for my children. My children wanted their mother to show up and be in their lives. I am typing this now at my son's track meet. Earlier today I attended my daughter's volleyball tournament. In the past year I have attended lots more events than I have in the past. Its taken some creative methods - I bring my laptop and between matches or heats I work where I can. I have to get up earlier than I may like to get the horses fed or the laundry done. I also divided my job at work so I was no longer doing three jobs and failing at all three because I wasn't superhuman like I wanted to be.

But I have enjoyed it and I know its the right move. So there is some good in worrying you are going to die young but I don't recommend it or think its more good than bad.

People throw around phrases like "seize the day" or "you only live once". You do need to seize the day and make the most of it but not at the detriment of your future. I know I need to believe that I have a future past the age of 61 but I have to admit that I will breathe a big sigh of relief when I pass it.

Interview with Casey: Guilt, Grief and Caregiving of an Independent Dying Parent

This guide is not just about my journey.  I want to share other peoples stories.  It is remarkable how many commonalities there are in our experiences.  However,  each person has a different perspective and something they can teach the rest of us.  This story is from an interview I did with Casey (I have changed all names for interviews mainly to protect anyone that were involved in their story).

Do you have any tips for working with medical staff?

I found that if you act intelligent you get better care.   What I mean is that if you show them that you have good records and understand their lingo then they treat you differently and you get more direct answers.   I felt better and more prepared too when I had good records with me.    I'd also recommend that you work with the nurses rather than the doctor when you can.    Oh, and don't be afraid to get a second opinion and go to the best doctor you can.

How about your family? 

I was the rock for my mother but my brother was the rock for me.   Every time I asked for help he stepped up.  We had a constant communication line and talked everyday to compare notes and what needed to be done.

What about your immediate family?

I think I had unreasonable expectations for them.   I got irritated with them at times because the house wasn't clean or the laundry wasn't done to my expectations.   But their expectations were different - they didn’t care that the house wasn't immaculate.  They didn’t expect me to clean it but I felt guilty that it wasn't done and snapped at them about it.  I appreciate though that they never resented the time I spent with Mom even though it took time away from them.

How did you deal with talking to your Mom about her funeral and plans for burial?

I didn’t really.   I knew it had to be done but my Mom is not a touchy feely kind of person.  But I knew what she would want so I wrote up the will and came to her and told her that I had written it up and that we needed to go have it notarized.   She just said “ok” and we went.

Eventually I asked her about how she wanted to be buried.  I told her, “Mom, you need to tell me what you want done.  I would like to be cremated.  Would you want that?”   In her typical ‘don’t bother me with the details’ fashion, she said just replied, “Whatever you want is fine.”

A couple of days later though she came to me and said, “that seems kind of rough to me… what if I am not totally dead.”  So I knew she had been thinking of our conversation.  We didn’t talk much more about it then but after a few more days she told me that if she was cremated she would want her ashes spread in the river.   So I wasn’t really sure what she wanted when she actually died.  That made it tough.

I remember sitting around with my siblings, husband and kids the day after she died and they were all looking to me to make a decision on how she should be buried.  I wanted to do what SHE wanted but I just wasn’t sure what that was.    Finally I settled on the cremation.   It was what I would want and it was the least expensive option.   But I still wasn’t sure so I said out loud, “Mom, give me a sign that you want the cremation.”  Just then something fell loudly in the kitchen.  I took it as a sign that I had made the right decision.

What triggered the tears after her death?

I was numb for the first three months.  I think I was afraid of feeling the pain and for so long I had been the rock.. not allowing feelings to enter … I had to be strong for my mother.  At the time of her death I didn’t feel as sad as I thought I would because I was happy for her that she was no longer in pain.   It took about three months to believe it was real and then it really hurt.  By then it was too late.  Friends thought I should have been over it by now but I was just starting to really feel the pain.

It started with a phone call.  My cell phone rang one day and I looked down to see my Mom’s face and number on the screen.  Shocked, I didn’t know what to think.  I turns out my brother, who had loaned the phone to my Mom, hadn’t changed the contact numbers after her death.  But that started the tears.

Other things were triggers too.  Buying flowers in the spring was tough.  It was something we had always done together and I wasn’t sure how to do it without her.  I bought all the flowers she would have liked and planted them the way that she wanted.  I’m not sure if that was a tribute to her or just because I could hear her in my head telling me what to do.  Shopping is the same way.  My mother and I always shopped together.  Its been over seven months and I haven’t been shopping for clothes since she died.  I’m saving a lot of money!

If you could go back and change anything about the time when you were caring for her what it would be?

Not much.   I guess the one thing would be to spend more time sitting and talking with my Mom.   Instead of talking to her I spent time cleaning her house and taking care of things.   Part of it was I was afraid of talking about the hard things but also I felt like I was accomplishing something.   If I could give anyone going through this some advice it would be to be tender and caring and loving because you can’t get those moments back.  And forgiving because they can be difficult at the end.

Another would be to “Listen and listen well.”   Listen to the things they really care about and then do them even if it is against what you would want.  When it became difficult for Mom to care for herself, I asked her to come live with me.  She refused and it hurt my feelings.  Why wouldn’t she want to come live with my family?  The people who really cared about her?

Eventually, she wasn’t able to be alone and her neighbor and good friend was coming to check in on her.  Hospice was involved at that point and I called Hospice and told them I was coming to get her.  I was putting my foot down and she was coming to live with me.   I arrived at her house to get her and started to gather the things that she would need.  After a bit, her friend asked to speak to me outside.

I know it was difficult for her but I appreciate what she reminded me of that day.   “Casey, this is not about you.   I know you want her with you but she wants this control and independence.  She wants to be able to change the thermostat to what she wants, walk at night without bothering you, eat what she wants and when she wants.   She loves you dearly and appreciates what you do but she needs this independence.   When she told Hospice that you were coming to get her to take her to your house, she cried.”

It hurt me to do it, but I left her at home that day.  It wasn’t about me.  My Mom may have been ill, but her mind was not and she needed this last bit of control over her life.

I also wish I had asked Mom about her past, her childhood and things I didn’t know.  I assumed I would be able to ask her brother after her death and avoid asking her about her past as she was dying but turns out her brother doesn’t remember.   Now it’s lost heritage that I can’t get back.