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.

Setting Boundaries when Caring for your Dying Parent

"I don't check my email very often so can you just call me with the updates each day?"  I sat at the end of my mother's hospital bed, dumfounded on how to respond.   I was spending up to 2 hours a day calling each person who wanted an update on my mother and felt obligated to do so since these were people who obviously cared for my mother deeply.  They were her friends, siblings and cousins.  People who were praying for her and hoping for her and people who had volunteered to help with her caregiving.  I owed it to them to at least let her know how she was doing, right?

Wrong.

My obligation was to care for my mother and if I was busy updating all these people two things were going to occur...  1) I wasn't going to care for my mother as well as I could and 2) I was going to drive myself into sickness myself.  Neither was a good situation.

So I learned to be firm.  When people asked such things I would just let them know that we were sending out updates via email (and later we started to use caringbridge.com to send out updates) and they could follow that and if they didn't check email then they should find a buddy who did and that buddy could update them.  I was busy taking care of Mom.

I have to admit I felt guilty being so firm about it but people took it well and eventually I learned that it was the best route to take.  We even put a notice on her caringbridge site that thanked people for their well wishes but that we would most likely not be responding to email or voicemails as our focus was on her health and our well being during this life crisis.

There were other boundaries to set too that at times made me feel inhospitable and mean.  When friends had overstayed their visit and I knew my Mom needed to sleep I plainly told them it was time to go -- it was naptime.  I had lots of people in and out of my house to help care for my Mom and I was and am STILL grateful for all their help -- it helped me lead a somewhat normal life and my Mom felt SO loved and appreciated.   However, sometimes it was too much and I needed to protect some of our family life.  There was more than once occasion where I told someone that I needed their help and was glad they were making a trek from other states to visit, but they needed to find another place to stay.  I didn't have the energy or fortitude to be nice to an overnight guest.  I didn't want to worry about changing sheets or if they wanted coffee in the morning in our coffee-less home.

I also had to set boundaries with my time.  I felt guilty when people would come from out of state to visit and the second they arrived, I shot out the door to go to work or sometimes to just get some time for myself.   But that's why they were there.  To help and spend time with my mother ... not for me to entertain them or to see me.  So I needed to get over my guilt so I could better care for my mother when they were not around.

I truly did feel blessed to know people cared and it did make my Mom feel better too but we needed those boundaries and you probably do too.  If you feel mean setting them, refer them to this post and maybe it will help explain.

Things to Do With Your Parent Before They Die

As it became more clear that my Mom was going to indeed die, I reached out to my sister-in-law who had lost her mom several years before. I asked her if there was anything that she would have done differently in that last year. Things she wishes she could go back in time and change.

After we broke down in tears she gave me some items. It seemed each time we discussed my mom it brought up all the feelings of anguish she experienced when she lost her mom and we both ended up crying. Now that I am on the other side of the death mark, I think it was because she knew what I was about to experience and knew it was not going to be good. I think about it now like when I watch a first time pregnant woman. You wish you tell them about those first few months of motherhood - that its terrible and wonderful all in one. That they are going to wish some days they could go back in time to before children and that they would feel guilty about it. But to hold on.... it does get better and that deep fatigue fog does lift eventually. There is no way to warn a first time pregnant woman. They are blissfully unaware and wouldn't believe you anyway.

So in the midst of tears she gave me her advice.

First, she wishes she had taken more pictures and video in the last year. She didn't because she knew her mom didn't look her best and wanted to respect her but in retrospect she wanted more pictures of her mom. That last year had a lot of memories and good times with their family. A video of her Mom would have been especially nice as she would have been able to hear her Mom's voice again. We take lots of video of babies and children but adults don't like video of themselves.

Second, she wished she had talked to her mom more directly about what she wanted them to remember about her and stories about their family's history. It was hard to bring up the subject though because it was admitting that death was coming.

Lastly, she wishes they had taken a vacation as an extended family -- her Dad, Mom, her family and her brother's family. After her Mom died, they went on vacation with the extended family and her Dad's new girlfriend and they had a great time and their family was closer than it had been in a long time. She wishes they had that great memory like that to go into the homestretch with her mom.

I took her advice to heart and did all three. I made sure to take pictures of my mom and her grandkids. It was more difficult to get a picture of my mom and I and honestly I am not sure I ever did accomplish that goal.

I also asked her very directly what she wanted to pass along to her grandchildren. What did she want them to know about her and lessons she wanted to pass along. It was difficult to bring up the subject because while we didn't say it, it was obvious I was asking her because we knew she would not be around to tell them herself.

This is what she told me:

• Choose your battles wisely


• Don’t assume that that something can be used the most obvious way


• Don’t make your house so comfortable that your kids won’t leave


• When you raise your kids put them in a garden that is so large that they can’t see the walls.  She explained further that they should feel a sense of freedom but there are walls to protect them.


• Know where you come from – church, family and heritage : this helps you understand yourself as you grow and change. Why am I reacting this way or think this way? Its okay to change but its good to understand where you came from.


• Walk in another's shoes. Experience how other people live. Don't just have dinner in their house but immerse yourself to find out what makes their family and community tick.


• Act honorably: the world will be a better place for it. You can set a tone for your community so be an example.


• “Never be afraid to do small things with great love” (Mother Teresa quote).   You are god’s present to the world and his messenger.  When you do things without any thought of reciprocation, you don't know the result or how it will affect someone.


• She wished for them a life full of positive joy that they can pass along to others.

Lastly we went on a vacation with my extended family.  I can't take credit for planning the vacation.  I really don't remember who came up with the idea but I do know that we all enjoyed the trip and I love having the memories.  While we were there I also snuck in a video of my mom enjoying some wine.   Six months after she died I put it on YouTube and her brothers and sisters and my siblings were all glad to hear her voice again.

Your list may be different but this may get you started and help open the conversation with your parent.

Drug Chart for Caregivers, Doctors and Helpers

As my Mom's illness progressed, more and more drugs came into our lives.   I started to get an education in medicine I never wanted.   Over and over again I had to tell each new doctor which meds she was on currently and which ones she had been taking.   My Mom tried to keep the drugs straight and take the right ones at the right time but her health was compromised and sometimes her judgment so it was difficult for her.  To further complicate things, many neighbors and friends were helping care for her and they were not familiar with the various drugs and when they should be taken.

I eventually came up with this Excel spreadsheet to help me track them.   I printed one off each time we visited a doctor and handed it to them when we arrived.  I provided a date at the top so there was no confusion about which version was the most up to date.  I also put a copy under her meds in her bedroom so as caregivers came in they knew the most current information.

Doctors loved it.  Don't assume they know exactly what your loved one is taking.   At some point there will be multiple doctors involved and each are prescribing different items.  Its important your loved one have a primary caregiver who is the central point of information and this chart helped me immensely. By the way, the link is to the last updated chart before her death so it may give you a good idea of potential drugs your loved one may be taking if they have pancreatic cancer. The one shown below is a version modified to fit the space of this blog. Medications that are bold are ones she was taking currently.

Link to Spreadsheet with actual drugs she was taking and a second tab with schedule

Medication	dosage	What to Take	What it is For	When
lidoderm patch	5%	pain patch	as needed	12 hours on, 12 hours off
advil	200 mg	pain	1-2 tablets	as needed
oxycodone	5 mg	pain	1 tablet	as needed every 3-6 hours
Coumadin/ warfarin	1 mg	blood thinner	3 tablet daily	dinner
levothyroxine/ synthroid	112 mcg/175 mcg	thryroid	1 x per day	morning
omeprazole dr	20mg	acid pill	1 per day	morning
metoprolol	25 mg	irregular heart beat	1/2   per day	morning
miralax	single dose	laxative	1   dose	morning
lasix	20 mg	diuretic	every   other day	morning
senokot		stool softener	2   x day	morning/night
pancrelipase	5000 usp units	digestion	1   with each meal
zofran/ ondansetron	4 mg	1st nausea	1   tablet	as   needed
glucophage	500 mg		1   tablet twic daily

Palliative and Hospice Care

Palliative Care focuses on relieving and preventing suffering.   This can be for people who are dying and for those that have an illness that won’t necessarily lead to death.   Because it is for all patients, whether they are dying or not, makes it different than Hospice Care that focuses only on patients with terminal illness.  The goal is everyone in the team involved.   It should include the physician, pharmacists, nurses, spiritual providers, social workers, psychologists, caregivers, and the patient.  It should address physical, emotional, spiritual and social needs of the patient.

What makes treatments palliative rather than just general treatment?   If they relieve symptoms without the intent to cure or fix the disease.  For example, providing pain relief for severe arthritis will not cure the arthritis but it will help the patient feel better.

During my mother’s illness, I found that doctors found both palliative care and hospice care to be a difficult path.   Doctors are taught to cure.   They are taught to find ways to extend life, even at the risk of decreasing the quality of life.   They are not taught to help someone without the path to a cure.   The funny thing was that once we switched the plan to palliative though, my mother’s health improved.   The drugs that were intended to extend her life made her sick.  The same drugs that were keeping her tumors at bay also caused severe respiratory distress.  She felt as if she was drowning and gasping for breath …. And in fact, she was.

I can’t prove it but I do believe that by abandoning the “curative” drugs that were supposedly increasing her lifespan, her life was actually extended because the QUALITY improved.  The New England Journal of Medicine published a 2010 study on terminally ill lung cancer patients that showed those receiving palliative care had a better quality of life and lived an average of three months longer than those who did not seek palliative care so there is some scientific proof to back my hunch.