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.

How I Became a Caregiver.. The Story of my Mom

[caption id="attachment_18" align="alignleft" width="292"] Mom and Dad six months before her death[/caption]

“Mom is at Johns Hopkins and they think she has pancreatic cancer.”

My stomach dropped.  The call was from my sister and it came while I was at a conference across the country in San Diego.  How could that be true?  She was fine when I left just two days ago.  And what was pancreatic cancer?  How serious was it?  Lots of people survived cancer – maybe this wasn’t one of the bad types.

I quickly started searching the web for information on pancreatic cancer and what I found was not promising.   With a five year survival rate of just 5%, it was one of the most deadly cancers.  Most people were dead within three months of a diagnosis.  Our best hope at this point was that the doctors were wrong and it wasn’t pancreatic.

When I was finally back East and able to walk into her room, I found my usually vibrant and active mother prone on the bed and the color of a pumpkin.  The tumor was cutting off her liver and not allowing it to process the bile, thus the orange color.  By now, they had definitively diagnosed her with pancreatic cancer and had scheduled her for a Whipple procedure.  A Whipple procedure is where surgeons remove the pancreas as well as the upper small intestine and part of the stomach in the hope of removing the entire cancer and if not, at least staving off the progression of the disease for a bit.

Unfortunately when they went in to complete the Whipple the surgeons realized her liver was compromised with cancer as well and so they aborted the Whipple in favor of removing the half of the liver that was most covered with cancer.   The liver is a remarkable organ in that it can regenerate so even removing half of it, the liver will eventually regenerate and grow back to its original size.  The goal was to wait until the liver at least partially regenerated and then complete the Whipple when her body was better able to handle the stress.

So four months later she was back at Johns Hopkins for the Whipple.  In the meantime, she lived her life as normal.  She may have been a bit more tired or worried, but for the most part it was hard to believe that this healthy looking woman who was busy volunteering and loving her grandchildren had cancer ravaging her body.

The Whipple is a highly invasive and dangerous surgery and my mother did not recover well from it.   She did not wake from the surgery for four days and was in intensive care for nearly a week.   On a Sunday afternoon after the surgery, my Dad called.  “Bri, I think you should come up today if you want to say goodbye.   I had the priest come and do Last Rites – I don’t think she is going to make it.”  He sounded calm but as if he was working hard to stay calm for our benefit.   Resigned to the fact that he was going to lose his wife.  That life as he knew it was about to change.

She didn’t die.

The next day she opened her eyes and while the breathing tube was still in she was unable to talk, she began to communicate with us via eye and arm gestures.  I made a board with the alphabet on it so she could point out what she was trying to tell us.  Even though she was weak and it was a miracle she was alive, her biggest concern was the time her family was “wasting” at the hospital being with her.  At one point, she struggled for several minutes to complete a sentence – she wanted to know how the nurse that was caring for her was doing as she was not feeling well the day before.

That was my Mom – she was always concerned more about the people around her more than herself.

I brought her home to my house and she slowly recovered.   It took three months but eventually she was able to go home to her own house.   The time she spent with us was hard at times.  It wasn’t easy to take care of my regular family duties and my full-time job on top of her medical needs.  She had open wounds that needed to be cleaned and drained and because she had MRSA, it involved surgical scrubbing before and after and using disposable gloves.

It was also funny and heartwarming.  She was on some powerful painkillers that caused hallucinations.   Perhaps its wrong to laugh but my goodness, it was hilarious to see her trying to kiss my one of my children who were in reality not in the room at all.  One time she kept insisting that she wanted something to “put on her stomach”.  I tried pillows, blankets and even a stuffed animal thinking that the stitches from her wound were causing her pain.   “No…. I need something on my stomach.”  Confused and out of options I finally figured out that she was hungry.  The words just didn’t come out right when the drugs interfered.

My daughter slept on her floor so she could be closer to her.  My mother helped her with her homework while they snuggled in the evenings.   My sons checked in with her each day when they came home from school.  It was a good time and I missed her when she went home.

Life continued.  She still had cancer but I think as a family we tried to ignore the ugly black cloud that was always in the back of our minds.   Each time we celebrated a milestone it was bittersweet.  We were glad she was there to see it but recognized that it may be the last time.  In particular I remember one Halloween.   It was a fun day with laughter and love.  The kids dressed up and canvassed my sister’s neighborhood for candy.   My Mom and a few others stayed back to hand out candy and then we all gathered for a comforting autumn meal.   The smaller kids crawled on her lap and at one point she looked like she had four pairs of arms and legs with the coverage they were providing.  She purred with contentment.

It was days like this that were both the best and worst.  What should have been simply a great day with family, cut deep with the vinegar that it may be the last time that we experienced a Halloween with her.

My Mom lived three and half years after her diagnosis.  I am so glad for the bonus time we gained but it was also painful at times knowing that we were on borrowed time.  Despite our family being outspoken and honest and forthright with one another, we still did not discuss many of the things that are difficult when living with someone with a terminal illness.    How do you turn to someone you love dearly and casually ask, “so have you thought about how you want to be buried?”

This blog is to help others through this path.  Hopefully the things that I and others have experienced will help you on your journey.  Its not an easy one but there can be happiness and love and yes….. even some good things that come out of the experience of moving towards death with a loved one.