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.

Advertisements

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.

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

Mom and Dad six months before her death

Mom and Dad six months before her death

“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.