Open to Hope

Last fall, a blog entry that I wrote got published on a website called Open to Hope.

Click HERE to read the article.

A couple of days ago, I received an email from someone who had read the entry and had left the following comment:

I was so touched by your article and the statements from the other readers.  I am writing because my husband has a brain tumor, glioblastoma, perhaps what your father had.  This is heartbreaking for our twins age 19, away at college, and I am wondering if there are some things we should be doing now to prepare us for the special occasions, holidays and even just the really sad times when he is no longer here.  He is still fairly lucid and would be willing to do something to make it less painful for all of us but I would need to help him as his vision is very poor and he can no longer write legibly or use the computer.  We have come up with some gifts to give the kids from him when they graduate from college, get married have children etc, but there are so many other times in between the highlights of their life when they will miss them.  We had him with us this Xmas but it is unlikely he will be here for the next one.  We still have some time and I don't want to regret missing opportunities while we still have him with us. If you have any suggestions I would really appreciate it.  Thank you.

Wow, that's a tough situation and a difficult question to answer.  Knowing what a tough experience her family is having to go through is heartbreaking; it brings back so many memories and brings forth so many emotions from my own family's experience.  I want to help, but I'm far from an expert on the subject of coping; all I can do is to offer suggestions based on my personal experience and my perspective at this point on the timeline.  

I will tell her that my dad did have the same kind of brain cancer, glioblastoma, or "GBM" for short, an awful combination of three letters that brings devastation to people in a matter of seconds.  I will say that what I've figured out since my dad's death is that it is possible to pull out the silver linings of a terminal diagnosis; in no way does doing so diminish the pain and the hardship of going through it, but it does allow for opportunities to do some things that are very valuable, things like making memories, even just in the midst of everyday things, so that you can hold onto those (hoarding memories, as I have called it), things like helping the person who is sick tie up loose ends, and things like saying things such as I love you and I am a better person for having known you and thank you - and, eventually, goodbye.

A few books that may be of use in such a situation are Dying Well by Ira Byock, Final Gifts by Maggie Callanan and Patricia Kelley, and On Death and Dying by Elisabeth Kubler Ross.  I wish I'd read them in time to help my dad; written from a perspective of those who have done hospice work for decades, these books are full of information about what often happens when a terminal diagnosis is handed down.  

Something that I was surprised to learn after my dad's death is that there is a natural process that occurs as an individual nears death, and, while each person is unique, the dying process is nearly universal.  Many people find it helpful to know what to expect during a typical dying process. She can tell her husband that she is willing to discuss any concerns he may have or that, if he would rather have those conversations with someone else, she will find a person for him to talk to.  My dad asked me what I thought it was like to die, and, when I answered him, I tried to focus my answer on what I thought his main fears about the process were, which, for him, were related to pain and worries he had about leaving my mother and my siblings and me behind.  I don't know if what I said was right or not; I just knew that his distress needed to be addressed.  I can't imagine how scary it must be to have all those fears about dying and, even more so, to feel like you might inflict even more distress on your loved ones by voicing those fears.

But more than how to handle the logistics of her situation and the anticipatory grief and the emotions that come along with it in such a situation, this person is really asking two things: first, how can she help her husband emotionally as he prepares to leave this world, and, second, how can she help her children and herself, especially with regards to after he is gone?

First, let me say that, while the diagnosis of both her husband and my dad were the same, my family's situation was different from what it sounds like hers is.  My dad was "lucid," in that he could speak clearly and could understand the words that were being said to him, but he had fairly severe problems with his short-term memory and his attention span.  He was told by doctors that the prognosis was two years at best, but he was also told by them (and by us) that it wasn't unreasonable to believe that he could beat those odds, at least to buy more time.  There was a lot of denial by all of us, I think by the medical team too, about the fact that his time might actually be as limited as that general 1-2 year time frame, so much so that, coupled with the frantic pattern of caring for him 24 hours a day and the decline that happened so much faster than anyone would have ever believed, we didn't think much about those two questions while he was sick.  I wish we had; I wish we had had the time to figure some of that out.  All that to say, though, that what I have to offer in terms of ideas to address her concerns is from my hindsight type of perspective, not from what we actually did.  What we did do related to those two areas happened quite by accident.

I think it would be a good idea for her to talk to her husband about what his goals are from this point forward.  Like I've said in telling the story about my dad's illness, though, that Bucket List type of discussion is probably going be vastly different than it would be for a healthy person; the best you can do in such a situation is to come up with a Modified Bucket List to work towards.  Like my dad did, her husband is probably having to deal with medication schedules, doctor's appointments, and possibly some treatment plans.  Hopefully, though, unlike my dad, he has had less of a change in his physical abilities and his cognitive abilities, which may allow him to do some things like travel or even just socialize with friends and family without it being a major source of stress or a logistical impossibilty. Each person's goals are likely to be different, but clarifying them and putting them into some sort of order by priority and feasibility are important in any case.

There’s such a feeling of urgency when we are aware that time is short, and it can be overwhelming and stressful for a caregiver to feel like you need to fulfill every desire and help your loved one cross off everything on his to-do list in that limited time.  It's natural to want to make every day into a special event, but, as I have learned, very often the wishes of those who are very ill are much more simple than big vacations and major events.  I've heard of people hoping to be able to go to a family reunion, or to go camping, or to go horseback riding, or, like my dad, to go to a beach or even just to see a movie.  Sometimes even things like that require planning, and sometimes family members have to ask for help from others to make these things happen, but thinking in terms of lower key type of arrangements can give everyone something to look forward to and can serve as an opportunity for memories to be created.

That said, though, so many special memories can be created in everyday moments that sometimes it isn't necessary to plan something like a trip or a Bucket List type of adventure.  I have found that I am comforted by thinking back on the times my dad and I just sat around talking about the past or current events or funny things during the time he was sick; sometimes it's ok just to sit in silence and hold the person's hand too.  The everyday moments can be just as important as the big-deal moments; many times, just being present with the person who is sick can be comforting and meaningful for both of you.

In my dad's case, when he first got sick, we tried to view a day as A GOOD DAY as one during which he was able to do at least one thing he NEEDED to do and one thing he WANTED to do; later, when he was even sicker, in some ways I think we struggled to consider a day as a good day when he didn't have an overwhelming amount of pain (mostly headaches) and/or anxiety.  As we learned in a crash course, it's all about perspective.

People often seem to think that talking to someone with a catastrophic illness about their diagnosis or their impending death will upset that person more; however, from what I've been told and from what I've read, the opposite is actually true.  In fact, sometimes the person who is sick may be hesitant to bring up difficult topics like those with their family members for fear of upsetting their loved ones more.  But there are bound to be questions, and thoughts, and emotions that need to be shared, and sometimes a certain degree of peace can come from talking about those hard things or to admitting one's feelings about what is going on and what's going to happen.  The books I mentioned address how to broach those tough subjects in the most compassionate ways.  

In his book The Four Things That Matter Most, Dr. Ira Byock discusses what most people define as being the most important things to say before they die: "Thank you," "I forgive you," "Will you forgive me?" and "I love you." Two of the four phrases are about forgiveness, emphasizing how important it is to offer and receive it before we die.

I have heard that men and women have different types of end of life concerns.  Men seem to focus on finances ("Have I provided for my family adequately?") and things that are physically left undone at work and/or at home.  This was certainly true for my dad, and it caused him a lot of anxiety during the time that he was sick that only got worse as his condition did the same.  Women, on the other hand, seem to tend to worry about the emotions of their loved ones and the logistics of things, especially those things that they have taken care of for their loved ones, like gift giving and planning events.  I wish we had been able to address my dad's concerns directly in such a way that he could have understood and been comforted by that information, and I hope that is something that this woman is able to accomplish in her situation.

I love the idea of helping the person who is sick to buy gifts for people to be given at certain points in the future when he is not likely to be around.  I think that is likely to be therapeutic for both the giver and the receiver, and it's a very touching gesture that will comfort those left behind.

I also think she should have conversations with her husband about his goals for his legacy.  I think most people want to leave some sort of legacy in life; we all want to be remembered because being remembered means that our lives had meaning and significance to someone other than ourselves.  Maybe it's something he accomplished professionally, maybe it's something he did that will continue to impact people long after he's gone, maybe it's a character trait that he has that others can try to emulate, or maybe it's something else that he will be remembered for.  She should talk to him about how his legacy will be carried on in the future, even by people he doesn't know who have come into contact with the people who have known him (the "rippling" concept).  I suggest that she ask others in his life to tell stories about things they enjoyed doing with him, things they admire about him, things they will remember, and/or how he has affected them; as we found out after my dad died from comments made by many people who had known him, sometimes one's legacy is different than they or people who knew them in a different context may think.

I've heard that many people who are at the end of their lives tend to want to talk about their regrets, accomplishments, hopes, and dreams.  Doing a life review is a way to bring closure to the person who is ill, and it can also serve as a legacy of life to the person's loved ones.  There are several ways this can be recorded for posterity: 

*A MEMORY BOOK can be created in one or more different formats.  A simple photo album or a more modern version created online through Shutterfly or a similar website can be a wonderful memento.  A scrapbook can be made by using photos and other items like ticket stubs, menus from special dinners, or personal notes.  A book of memories can be completed by filling in information in a published book like THIS ONE or just by jotting down or dictating memories, thoughts, and ideas in a notebook a little bit at a time. 

*AUDIO TAPES can be a wonderful thing to leave to loved ones and may be able to be produced more easily and more privately than dictating for someone else to write down messages.  Loved ones often miss hearing the voices of their departed friends and family members.  By recording tapes for those they leave behind, terminally ill patients can know that whenever their survivors are missing them, they can simply pop in a tape and hear their voices.  I've heard of people who have recorded themselves reading favourite bedtime stories, singing lullabies, or simply talking for their children or grandchildren (or future grandchildren) to listen to later.  Tapes can be made for friends and family members, individualizing the messages for each recipient.  One thing I will say is that even though we didn't record my dad while he was sick, we have some recordings of his voice from before he got sick that are absolutely priceless to us.  

*VIDEOTAPES may be the ultimate way for the terminally ill to leave their loved ones with little pieces of themselves. Similar to the process for creating audio tapes, a video camera can be set up and turned on for the person who is ill and then the person can be given an opportunity to have his message delivered in private.  Again, different videos can be produced for each loved one, with the emphasis being on making them as personal as possible.  Parents who know that they will miss important milestones in their children’s lives can prepare videos offering the advice they had hoped to deliver in person. For example, a dying parent may prepare videos of themselves talking to their children about the importance education, being true to yourself, finding lasting love, or prioritizing the important things in life. More than anything, these videos should be used for the terminally ill to express themselves and the feelings that they have for those they will be leaving behind.  

*WRITTEN LETTERS (or those that have been dictated and then written on the person's behalf) can be used to offer kind words, to share advice, to provide encouragement, or simply to declare one's love for another person. Such letters are sure to be treasured and kept as special remembrances of a life that ended too soon.

It has been said that as long as one person holds memories of someone, they are not really gone. Losing a close friend or family member is one of life’s difficult realities, but most people keep their departed loved ones forever near by thinking back over the times that they shared. Creating tangible memorabilia can reinforce those memories, helping survivors to keep loved ones a part of their lives.

One more thing I'll share is a link to a website that has great info about how to cope with end-of-life issues for people with brain tumors:  BRAIN TUMOR HOSPICE.

In closing, I will say to the woman that, when faced with the most difficult situation that she has probably ever faced, all she can do is to try her best.  Accept help from others; ask for help when needed.  Keep a Notebook of thoughts, questions, appointments, inspirational quotes, anything that might be something she needs quick access to and/or that might be good to remember in the future.  Take photos of your husband along the way, with other people and by himself, maybe even of things like his hands or him facing away from the camera, to create memories in a visual format.  Make an effort to take note of everyday joys, don't be afraid to just sit silently and enjoy each other's presence, and cut yourself some slack and take a break on a regular basis.   

I am going to wait a couple of days before responding directly to her message, and I'd love to get feedback from others who have opinions about the subject of what else she may want to consider doing.  Please comment below if you have any ideas on anything else I should add!!

Part 43 –At Last

Continued from Part 42 

I wish I could draw, because if I could, I would draw two pictures side-by-side, one that shows how I pictured things going as we prepared and then got to bring Dad home from the hospital, and the other that shows how things actually went. 

On Dad’s last night in the hospital, his mood fluctuated between excitement about getting to go home the next morning and distress that he couldn’t leave even sooner. “My ride [the ambulance] cannot get here soon enough!” he said impatiently several times.  My sister Nancy and her husband David stayed with him during the first half of the night; per Dad’s request, David shaved Dad’s face, and Dad and Nancy talked about what Dad was going to wear home the next morning.  “I guess I’ll wear flannel pj’s and running shoes for the ride home,” Dad announced.

Dad put in a special “last dinner in the hospital” request with David, who kindly went and picked up a to-go order from Steak ‘n Shake.  Dad ate half of his order of Three-way Chili, took a break, and then proceeded to gobble down some pretzels, half of a Snickers bar, and an entire Cliff bar, and, of course, washed it all down with Diet Coke. 

By midnight, my sister Jennifer and I had tagged-in for the late-night shift with Dad.  He was getting super-antsy; he requested and was given a sleeping pill and later another pill for anxiety, but nothing seemed to calm him.  He directed Jennifer and me to “get real close,” and so we each pulled a hospital-grade recliner up next to one side of his bed and put the bed rails down so we could hold his hands and talk to him while he tried to go to sleep.  After an hour of so of more fretting (“You PROMISE I’m going home FOR SURE tomorrow, right?” he asked us repeatedly), he dozed for about an hour but woke up again around 3 a.m. saying, “It’s just too much!  I hurt all over!”  After watching us try for quite some time to get him settled again, Nurse Jim gave Dad a pain shot, which knocked him out for a few hours.  

While Dad slept, Jennifer and I talked to Jim again about how worried we were that we wouldn’t be able to take good enough care of Dad at home.  Jim was very reassuring and, as an added bonus, packed some “to go” supplies for us to take home.  He sang the praises of hospice care and of the support they had to offer.  Finally, we looked through the window of the hospital room and saw the sun coming up over the horizon; at last, it was Going Home Day!

About 8:00 that morning, Mom and Nancy took over at the hospital, and Jennifer and I drove to Mom and Dad's house to coordinate the preparations there.  Dad continued sleeping for about another hour; when he woke up, he remembered right away what was planned for the day.  He was still very anxious, though, and still in pain.  By 10:00, he started experiencing some shortness of breath.  “When is that ambulance going to get here?  Why can't they hurry up?” he asked over and over, first eagerly, then angrily, and then desperately and in a panic.  When Nurse Dave noticed Dad’s heart rate climbing and saw the anguished look in his eyes, he gave Dad a pill for anxiety and a shot for pain.  At last, Dad relaxed, and then he fell into such a tranquilized sleep that he did not wake up even as the paramedics transferred him from the hospital bed onto the gurney and then into the ambulance, as they sped down the highway, or as they wheeled the gurney into the house.

Meanwhile, at my parents’ house, my husband Kevin and my brother-in-law David were hastily rearranging furniture while Jennifer and I directed the set up of the newly delivered hospital bed.  Kevin and my daughters went on a mad dash to the store to buy extra sheets and pillows which we quickly threw into the laundry; we wanted to be prepared for bed-linen changes, and we knew the pillows would be needed for positioning Dad in the bed.

We had decided the day before that the hospital bed would be set up in the den; we thought Dad would enjoy being “in the mix” and that he would really like watching his flat-screen TV right by the fireplace and the space heater that was set up in that room.  Our husbands switched out the curtains so that heavier ones were hung in the den to block out early-morning sunlight (ambitiously – or maybe crazily – we still held out hope that Dad would be able to sleep despite the track record since he'd gotten sick).  The guys brought a couch from upstairs to add to the couch in the den so that two people could easily sleep in the room with Dad at night.  It was a mishmash of furniture and equipment, but it was as we felt it needed to be so that we could accommodate Dad’s needs at home.

A Hoyer lift

The medical equipment guy also brought a pressure-relief mattress and a Hoyer lift, which is a specialized device that uses a sling and hydraulic power to gently and safely transfer a person whose mobility and strength are compromised from one place to another.  I was familiar with patient lifts from my hospital/nursing home days of employment in the past, but it had been years since I’d operated one and even then it had been more of an industrial grade model.  Jennifer asked the rep to instruct us and then to watch us use the lift to be sure we wouldn’t risk injury to Dad when we used it to lift him.   Jennifer played the role of the “patient,” and Kevin, David, and I practiced using the lift until we felt confident.  We hurriedly put sheets and blankets on the bed, and then we waited.  (We had his favorite Dodgers blanket and his Glee pillow all set to go!)  Oddly, along with Jennifer, David, my husband, my daughters, and me, and alongside all of that medical equipment and awkwardly arranged furniture in the house, it felt like there was Hope, something positive in the room with us.  And at last, I, who had had tears streaming pretty much non-stop for several days, was able to stop crying.

When Dad’s “ride” arrived at the hospital as scheduled about 11:00 that morning, he was still knocked out from the sedative.  There were no big goodbyes with the staff, there was no cheering by Dad or by anyone else, there was no Going Home outfit of flannel pj’s and running shoes for Dad; everyone was all business and efficiency.  Had he been awake, I’m not sure if Dad would have high-fived everyone at the nurses’ station and in the hallway on his way outside or cried tears of joy and relief – maybe both.  Regardless, though, it was a smooth ride home, something that was well deserved and perhaps even long overdue.

When the ambulance quietly pulled up into my parents’ driveway around noon that day, we were as prepared as we could be inside the house.  The fireplace was “on” (as Dad said about the gas logs), there was Diet Coke and Foster’s chilling in the fridge, and the pets were quarantined in a bedroom to keep them from being underfoot during the transfer process.

I had envisioned Dad, exuberantly smiling and laughing as he entered his house that day, but the scene unfolded much differently.  Dad slept as the paramedics rolled him in on the gurney through the garage and into the den and as they smoothly shifted his sheet-covered body into the hospital bed.  He slept as they simultaneously raised the rails on each side of the bed, checked his vital signs once more, and quietly exited out the back door.  He slept while the dogs and his cat Foster came back into the room and took their places on the pet-beds by the fireplace.  In fact, he continued to sleep for several more hours. Not quite the homecoming I had predicted, but at least it went smoothly and at least, at last, Dad was home.

While he slept, we unpacked, did more laundry, and watched over him.  I got out my laptop and searched the Internet for modified clothing that I thought would make it easier for his clothes to be changed when needed.  I kept picturing him sitting up in his recliner, wearing sweatpants and a running t-shirt, but I wasn’t sure how it would work for him to be dressed like that because of his catheter and the PICC-line in his arm.  I bookmarked a website that sold what they referred to as “easy access clothing,” but the clothes they offered were not what I would call stylish – and for some reason (habit, denial, hope?), I still thought that mattered.  Finally, I wrote “ask about clothes” on the To Ask Hospice Nurse List in the Notebook; We have to figure out something about what he will wear, I thought.  He won't want to keep wearing a hospital gown, and surely the Hospice nurse will have a resource for what we are looking for apparel-wise.

Not long after that, the medications ordered through Hospice were delivered to our door – no having to get out in the cold again, no waiting in line in Walgreen’s, no insurance co-pays!  My brother-in-law Peter inventoried and organized the pills and recorded the name and the dosage of each in the Notebook.  A little while later, Linda, the intake nurse from the Hospice service, arrived.  As our husbands and my daughters stood guard over the still-sleeping Dad in the den, my mom, my sisters, and I sat down with Linda at the dining room table for an exchange of information.  She asked questions, she told us more about Hospice, and she assured us that we would have the support we needed to care for Dad.  We asked questions (shocker, right?), we told her about Dad and our story, and we showed her the Notebook, including the chart we had been using to keep up with his medications before he had gone to the hospital.  Linda looked at our lists and our charts, and with the utmost compassion in her eyes, she told us that we had done a good job keeping up with everything.  “Hospice is here now to do most of the ‘figuring out’ for you, though,” she said tenderly.


“We’re just so worried, and we want to make sure we do everything right for him,” I told her.  She told us that, above all, Hospice would focus on symptom-relief and comfort, and she pointed to a little box that had been included in the delivery from the pharmacy.  “That’s the Crisis Kit,” she said. “It will be here just in case.”


“In case what?” my sister asked her.


“In case he gets into distress for any reason – if he has trouble swallowing or breathing or if we need extra help controlling his pain,”  she said.  She must have seen the panic start to creep onto our faces, because she quickly added, “If you have any concerns or notice any changes in him at any time during the day or night, you should just call the Hospice nurse on duty and she will come right over.  She may even instruct you over the phone about giving him medicine in the Crisis Kit or in the prescription medications he has.  Don’t worry, though, you won’t have to decide any of it on your own.  We will take the reins, so to speak.” 

We asked her about the two things on the medical care list that made us the most nervous:  flushing the PICC-line (to keep it open in case it needed to be used for medication administration at a later time) and dealing with Dad’s blood sugar issues.  To the first concern, she said that an RN from Hospice would come by at least once a day and could do the procedure, instead of by us.  She opened the blood sugar testing kit and showed us the lancets and the glucose testing meter.  She explained how we were to insert a lancet and a glucose test strip into the testing meter, push a button to release the lancet into his finger, and then wait until we saw the blood sugar reading appear on the digital screen.  “Do you want to try it on him while I am here?” she asked.  “It’s not time to do it yet but we can just do it for practice if it will make you feel better.”


“Just do it on me!” Jennifer volunteered.


“Seriously?” Linda said.

“I’d rather have it practiced on me than on Dad,” Jennifer responded, and so Nancy set up the meter and checked Jennifer’s blood sugar (a perfect 100!).  We were good to go on that.


I told Linda about my quest for suitable clothing options for Dad, and she said that, while we were of course free to purchase custom-made clothing, many of her patients who didn't just wear hospital gowns wore "street clothes" or pajamas that had been cut down the sides or up the back to make it easier for those items to be put on and taken off.  Easy enough, I thought.

Linda said that she needed to look in on Dad as part of her initial assessment.  I told her that we did not want to tell him that we had called Hospice.  She said that she had had that request before and that her “rule” was that she would take off her name tag which prominently identified her as being from a hospice service and that she wouldn’t bring up the subject with Dad but that if he asked her if she was from Hospice she wouldn’t lie to him.  Fair enough, I thought, and we lead her into the den to see him.  She gently and efficiently checked his vital signs and then went back into the dining room to record the information in her notes.  She hugged my mom, my sisters, and me and told us that another RN would be coming in the morning and that she or the other nurse would be available by phone if we had any questions or concerns.  We felt better; we felt like there was a plan and a back-up plan in place.  We felt like we could handle things, at least until the next day, and, as it had been, our strategy was to take things one day at a time.

As the sun was setting and the room was starting to get dark enough for us to need to turn a couple of lamps on, Dad opened his eyes and looked around.  “At last, he is awake!” I thought.  I waited for him to break into a big smile and say that he was so happy to finally be back at home.  Instead, though, he said in a desperate, gravely-sounding voice, “But you promised me I was going home!”  

“You are home, Dad!” I told him.  But he wasn’t convinced.  We told him he was in his den and we pointed out the things around him.  The more he looked around the room, though, the more disoriented and upset he became.  Finally, my sister picked up Foster and put him in the bed with Dad.  Foster curled up right next to Dad and purred loudly, as Dad petted him and dozed off again.

Up Next – Part 44 – Hospice, Part 2

Part 42 – Gearing Up

Continued from Part 41 

When I think back to the last few days of Dad’s hospitalization, I remember so clearly some of what was going on, but other things are a blur or even a blank. I remember sitting by myself in the hospital cafeteria with a turkey sandwich in front of me, but I don’t remember how I got there or how the food got onto my tray.  I remember the tears that I could not stop from falling in a steady stream and both wanting and not wanting to be comforted.  I remember taking a bite of the sandwich and thinking that it tasted like cardboard but eating it anyway, because, like a lot of things going on during that time, it was something that I knew I had to do.  I remember thinking to myself, “You have GOT to hold it together” but not being at all sure that I could.  I remember feeling so desperate and so heavy with the weight of the decisions that my mom, my sisters, and I had to make.  I knew there were things that had been done that couldn’t be undone, and I knew there were actions that had to be taken to make things right for Dad.  I knew that I still wanted to choose Hope, but I realized that, from that time forward, Hope was going to be coming in a different form.

We had another couple of lucky draws from the Nursing Assignment Fairy; Dad’s tag-team nurses this time, Day Shift Dave and Night Shift Jim, were very patient in teaching us about Dad’s medical needs.  Both of them somehow balanced empathetically caring for Dad with providing us with a listening ear and a shoulder to cry on in the hallway.  They seemed to be available whenever we needed them, but we didn’t feel like they were hovering or intruding.  Looking back, I see that, whether it was because they saw up close how very sick Dad was or because they took the time to listen to him and to us, they somehow “got” the seriousness of Dad’s condition and even the rhythm of his illness and of our grief.  

Even with support from Nurses Jim and Dave, though, we continued to scramble to try to meet Dad’s needs, often apparently without success. "It's just too much!” Dad said numerous times, with despair in his voice and with pain in his eyes.  “Please, can’t I just go home?" he pleaded again and again.  It was, in a word, heartbreaking.

The doctors, especially Dad’s oncologist, still appeared to fluctuate between being baffled by the severity of Dad’s continuing medical problems and being blind to it.  Among the team of physicians involved in Dad’s care, no one seemed to really understand his declining status -- they said the tumor was "holding steady" and that his blood counts were “back to normal.”  For whatever reason, not a single one of them really saw Dad struggling to lift his head from the pillow or really heard him when he said, “I hurt so bad!” or “I just want to go home!” 

There is such a dichotomy when someone you love is catastrophically ill; on one hand, you want the medical staff to realize how unique and special your loved one is, but, then again, you also want them to swoop in with the attitude of “This is no big deal - I see this stuff every day!”  Either way, though, you expect them to accurately and efficiently assess what is going on and then to figure out what to do about it.  This absolutely did not occur among the physicians on Dad’s case.  Either they didn’t really see what was happening or they saw it but they didn’t know what to do about it.  By the third day after Dad had been moved from the ICU onto a “regular” floor, we had begun to see that we were going to have to figure things out on our own, and that is a horrible feeling, entering unchartered territory, in a state of shock, without a guide.

Despite the lack of progress in Dad’s condition, the oncologist was gearing up to send us home before New Year’s Day rolled around.  He was all set to take another three-day long weekend starting that Friday, and so on Wednesday he wrote orders for the nursing staff to show us how to check Dad’s blood sugar, how to administer the insulin, and how to flush the PICC-line so that it would remain open for use if needed.  He told us that he had discussed Dad’s case with the neuro-oncologists at Duke and with the local radiation oncologist and that they felt the best plan was to have Dad start radiation and resume the chemo and Avastin one week after he had been discharged from the hospital.  He suggested that we consider having Dad moved to an inpatient rehab facility “for building strength prior to the start of radiation.”  He informed us that Dad would need “to be able to move himself onto the treatment table and to maintain a seated position for several minutes at a time in order to sit for the radiation treatments.”  (That, to me, was like someone telling me to run a five-minute mile; of course I wished I could do it, but, even giving it my all, it just wasn’t going to happen.)  When I expressed my concerns about Dad’s ability to withstand the radiation treatment, both in sitting for the treatment and in avoiding the possible side-effects such as a lowered immune system, the doctor’s response was, “Because he’s had a less than ideal response to the primary treatment, it’s a bit of a long shot that he will qualify for radiation and even more of one that the treatment will help, but I still don’t think it’s a crazy option.”  I asked him if the radiation could result in a functional improvement for Dad, and he said, “We just don’t know.  If the radiation is able to shrink the tumor, there is a small chance that things will improve for awhile.”  None of this was sitting right with me; I felt like not only were we being offered less-than-desirable choices but we were also being told that the odds were slim that any of the things being discussed would help Dad much if at all, if he even qualified to get any of them.  


When the oncologist left Dad’s room, I followed; I caught up with him at the nurses’ station and told him that we were worried about how we would care for Dad at home but that we wanted to take him home.  

“I just don’t see rehab as an option for him right now,” I said.  And then I pushed even further.  “I asked you when you first came on as Dad’s oncologist if you would let us know when the time came for us to call in Hospice.  Do you think that time is now?”  

He looked puzzled, but I kept at it:  “Other than a slight decrease in pain and his fever going down, there really haven’t been any changes in him since we got here over a week ago.  He’s completely dependent on us for everything, he’s miserable, and he wants to go home.”

“I’m not sure,” the oncologist said.

“What would you do if this were your dad?” I asked him.

“I know exactly what I would do,” he responded. “I have medical power of attorney for my dad [who is also an oncologist], and he has told me in no uncertain terms that if he is ever diagnosed with an aggressive cancer, he does not want treatment; he does not want measures to be taken that will prolong things.”

Wow, I thought.  “And so, about hospice?” I persevered.

“I think maybe there may still be some options we should consider.  He could stay in the hospital through the weekend if needed.  Let’s talk again in the morning.”

I said ok, but it wasn’t.  I didn’t understand how he didn’t understand what I was saying or how he didn’t see what seemed so evident.  How could he think that staying in the hospital “through the weekend” would make a difference for Dad, except to depress and frustrate him more?  And how could he have been so quick to give an answer as to what he would decide to do for his own father and not be of the same mind for my dad at this point?  I was baffled and so, so sad; I just didn’t get why he didn’t get it.

After he left the unit, I stood in the hallway outside of Dad’s room crying, and Nurse Dave came over and put his hand on my shoulder.  He said he had heard my conversation with the oncologist.  “He doesn’t see what we see,” he said.  “I know!” I wailed.  “Sometimes that is the case with oncologists,” he said gently. “It’s like their only goal is a cure, and sometimes that just isn’t going to happen.  Sometimes treatment doesn’t work.  Sometimes treatment isn’t what a patient really needs or wants.  Sometimes the oncologists don’t know when to say when.” He paused, and then he added, “You can ask for more information on Hospice without making any kind of commitment.”   As my sobbing subsided, I considered his words carefully.  I knew we needed help and more information before making any kind of decision.  I knew we had to figure something out and that we needed to do it quickly. 

That night, we made a list in the Notebook of possible options, including having him go to rehab again.  (Based on my professional experience, I knew this was not really an option for a patient in such a severely depleted physical condition; based on my personal experience from when Dad was in rehab in November and made NO progress whatsoever, I knew it wasn’t an option we were even going to consider, but, because the doctors said they thought we should think about it, I put it on the list.)  Checking him into an inpatient hospice facility went on the list, as did taking him home with home health or with support from hospice.  Those were the options, as we saw them; none of them were good, and it was quite possible that none of them were even doable if the stars didn’t line up just right and if we didn’t get our ducks in a row first.  For a split second, it seemed like there were gray areas in our what-to-do, some sorting through of the pros and cons that needed to be done for each of the considerations.  But then again, looking at Dad, lying there in the bed, it quickly became abundantly clear:  what we wanted for Dad – what he wanted – was right there in the forefront of our minds, and that was for him to get to go home.  

We were very concerned about our ability to provide the quality of care that he would need in that setting, but we wanted to try to figure it out.  As had been the case during Dad’s treatment, we planned to operate as a team, and, also as we had been doing, we would take each hurdle as it came.  Our focus became finding out what we needed to know and getting set up to care for him at home; we were gearing up both physically and emotionally for what we couldn’t deny lied ahead.

And so the question became - How can we get him home and take care of him?  Looking at our list in the Notebook, the only way we could see it happening was with ongoing support from an outside source, and the only form in which that seemed to be available to us was through hospice.  At first, the decision to go with Hospice seemed like surrendering, but, as we met with representatives from different agencies and learned more about the process and the services, it started feeling more like taking control of the situation for the first time since Dad’s diagnosis. We told ourselves that we were just going to “use” Hospice … and then we could revoke, if things improved as we hoped they would.  The home environment will be therapeutic for Dad, I thought, and then he will start feeling better.  

Early the next morning, my sister and I caught the oncologist in the hallway before he went into Dad’s room.  Before we could even say anything to him, though, he said, “I thought about your dad all night last night, and I realized that what you said yesterday about calling Hospice is the right decision.  I want to talk to your mom and your other sister too, and then, if you all are ready to go ahead, I can write the order for a consultation from different hospice services, and then you can make a decision.”  We stepped inside Dad’s hospital room and saw that, thanks to the pain shot he had gotten an hour before, he was medicated into a sound sleep.  We all sat down around him, and, after further discussion, we said yes, we would like the orders to be written.  The oncologist looked at Mom and said, “I just want to be clear on this: are you ready to sign a DNR [do not resuscitate] order?  That will be required in order to get hospice services.”  No, of course we weren’t “ready,” I thought, but it is what needs to be done.  Mom took a deep breath and said she would sign the order. The way we saw it, Dad deserved to go home, he deserved to feel better, and he deserved a chance to enjoy his family, and if that meant using hospice, or signing a DNR order, or doing anything else, then that’s what we would do.

After the oncologist left, my sister and I talked to Nurse Dave about hospice.  We had seen a flyer for one hospice provider in the waiting room (not the most uplifting thing to see in an oncology-ward waiting room, I must say, but we ended up being glad to have the info), and we were familiar with two other providers in the area – one was the agency already providing hospice care for my dad’s mom, and the other had helped care for my mom’s mom in the end stages of her battle with cancer almost 18 years before.  Dave suggested that we make an appointment with a representative from all three agencies to learn about each one.  “I think you should sit each of the reps down and ask them specifically, ‘What makes your agency the best choice for us?’”  

We took his advice to heart, and we did just what he had suggested.  The intake nurse from the first company gave us lots of information and then, when we asked her the “Dave” question, she said, “We are the only hospice service that has 24-hour crisis care, which is in-home nursing support for critical cases.”  After that, we interviewed the other two agencies, but we knew as soon as those words were spoken that the first company was the one we needed.  

When the oncologist came by that afternoon for his evening rounds, we told him which hospice service we were planning to use.  He said that he had heard excellent reviews about their services and that he would work with their physician to be sure we had whatever we needed to take care of Dad at home.  “I am going off duty for the next three days for the holiday weekend,” he said, “but I will call you at home on Monday to check in.”  He had tears in his eyes, and he seemed genuinely concerned as he turned to leave the room, but, as we came to find out, that would turn out to be the last time any of us saw or heard anything from him, ever.  

And so we met again with the intake nurse from hospice and, with her help, hammered out the details of setting up a delivery to my parents’ house of equipment and supplies first thing in the morning, and then she made an appointment to have Dad transported home by ambulance.  The next morning, my sister Jennifer and I would be at the house to get things set up there, my mom would ride in the ambulance with Dad, and my sister Nancy would drive Mom's car while following the ambulance.  Along with all the necessary medications and medical supplies, we would be getting a hospital bed with a special pressure-relief mattress and a Hoyer lift which could be used to gently lift Dad to move him as needed.  At last, we felt like we had the help that we needed, and the wheels were set in motion.

It felt buoyant to tell Dad that he was definitely going to get to go home.  As soon as the words were out of my mouth, though, he started trying to sit up in his bed as if he thought he needed to get ready to go right that second.  “It will be tomorrow, Dad,” I told him.  “We have to get everything ready first.”


“What’s to get ready?  I can just get in the car and go, and all of my stuff is already at home,” he responded hopefully.  I told him we had to be sure we had the medicine that he needed and that the doctor had said he had to stay in the hospital until the next morning, and he finally accepted that in a deflated kind of way.  He was ready to make big plans, though:  “As soon as I get home, I want to turn on the fire in the fireplace and the space heater so I can finally be warm.  I need to stretch my legs and then I’m going to play with Foster and the dogs and drink a beer, okay?” he said. 


With that, I smiled for the first time in a long time.  “Okay, Dad, that sounds like a great plan,” I told him.

In what came to mirror the way I desperately wanted to shield Dad from the knowledge that he had cancer around the time of his surgery, I pulled out all the stops to avoid having him know that we were signing on with hospice. This seems incredibly short-sighted now, but at the time I wanted the focus to be on living, not dying, even then.  When I talked to Nurse Jim about my plan, he let me tape a sign to the outside of the door to Dad’s room that said, “DO NOT MENTION HOSPICE! PATIENT KNOWS HE IS GOING HOME TOMORROW BUT IS NOT AWARE OF HOSPICE SERVICES.”  We wrote in the Notebook the wording we thought was better for him to hear, if and when the topic of Hospice came up:  This allows us to care for you at home.  We’re going to take care of you. You did a good job and now you get to go home.  And the clencher – You don’t have to worry anymore; you are going home.

To Be Continued Here:  Part 43 - Home At Last

Part 39 – The New Deal

Continued from Part 38

After the procession of doctors that came to consult on Dad’s case on the afternoon of Christmas Day, Dad saw me crying.  “What’s wrong?” he asked me, with alarm in his voice.

“I’m just trying to figure out what to do to get you better, Dad,” I told him.

“Have you come up with anything?” he said hopefully. I sat down on the edge of his bed, looked him in the eye, and said, “I think you have to start eating, Dad.  I think you haven’t been taking in enough calories to get stronger.  I think you need to take control of your recovery by finding a way to make yourself eat.”

The room was quiet for a minute as Dad considered what I had said, and then he proclaimed, “OK, then.  It’s a deal.  I promise; I will start eating more, and then after that I can go home, right?” 

“That’s right, Dad.  It’s a deal.”  Through tears, I told him goodnight, and then my sister Jennifer took over; I was planning to be back early in the morning so that I could catch the doctors on their morning rounds.

Dad was chatty overnight; despite saying many times that he was very tired, as usual he did not sleep at all.  He said he realized that he was confused and that he didn’t want to tell the doctors because he thought then they wouldn’t let him go home.  He dutifully ate some graham crackers and peanut butter and then some ice cream; it was plain to see that the effort he had to exert just to chew was exhausting to him.   

Halfway through the night, my sister Nancy took a turn with Dad.  “He is trying so hard to eat,” she wrote in the Notebook.  Dad told Nancy that earilier that night he'd been at the hospital all alone; of course, she told him that he hadn’t been by himself, but it still made us so sad to think that he didn’t realize we'd been right with him the whole time.  “I am very concerned about how sick I still feel,” he said. “I don’t feel like I’m getting any worse, but I’m definitely not any better, either.”  He told Nancy that he couldn’t wait to see how proud of him I was when I found out how he had eaten during the night, a comment which, when I look back at it now, almost breaks my heart.  I can only hope that he knew that I already was as proud of him as I could possibly have been for so, so many reasons and that he didn’t have to strike a deal or hold up what he thought was his end of the bargain for me to be proud.

I got back to the hospital just as the sun was coming up, and right away Dad told me to write down a list of things that he wanted to remember to ask the doctor, most of which centered around the fact that he wanted to go home.  He said he knew that he needed to continue to “eat better,” and he listed several foods that he said he would try to eat that day, including toast and grits, a Diet Coke and a grilled cheese sandwich from Sonic, and a hamburger with mustard.  “No cheese and no mayo on the hamburger,” he said. “Those have TONS of calories.”  

“But Dad, we’re really wanting extra calories for you now,” I reminded him.

“Well, I guess I’ll have cheese on there, but I really don’t think it’ll be good with the mayo,” he said adamantly.

We got another visit from the consulting neurologist mid-morning that day; the doctor took about five minutes to do his “neuro checks” and then declared that Dad had “gotten better” since he’d seen him the day before.  (“Better in that he is slightly less confused, but not better in terms of pain, eating, or sleeping, plus now Dad is really starting to realize just how sick he is,” I wrote in the Notebook after the guy left.)  

Shortly after that, the stand-in oncologist reappeared and informed us that he was “pleased with the progress made over the last 24 hours.”  He said Dad should not be given pain medication for problems with sleeping; he would allow Dad to take Benedryl for sleep and anxiety problems but that was it.  He said Dad could probably be moved out of the ICU in the next day or two but that he felt Dad needed to "stay put for the time being" because he was still at risk of choking and because of the concerns about Dad’s heart.  Um, his heart???  The last we’d heard about the PVC’s on the heart monitor had been the day before from the cardiologist, who had seemed confident that there weren’t any true heart-related problems going on.  “I’ll have his blood counts rechecked today, too,” the guy said casually, still talking as if Dad wasn’t there and/or couldn’t understand what was being said, “but I expect to see improvement on those numbers too.”  And with that, he was off.

Shortly after that, the blood tech came in, and, as had happened a few times over the past few days, she had trouble finding a vein.  The nurse had informed us that long-term steroid use often makes the veins “brittle” and causes them to “roll,” both of which makes it hard to get a needle inserted.  Through the multiple needle sticks, Dad grimaced but didn’t complain, and eventually the technician had partial success; she was able to obtain one of the two vials needed for the labwork.  Dad winced as she put band-aids over the multiple places that she’d poked on Dad’s hand and arm; it was the ripping off of the tape and bandages that he hated the most, yet another thing for him to be anxious about and to cause him pain. 

About an hour later, an x-ray tech brought in a portable x-ray machine to take x-rays of Dad’s chest.  My sister and her husband helped the technician position Dad so that the films could be taken, and they noted in the Notebook that Dad’s rib cage was startlingly apparent.  Despite all of Dad’s talk about what he was planning to eat that day, he continued to say he was “zero hungry” and even "I don't think I can stomach anything.”  


"Sorry," he kept saying, with a guilty look on his face.  And despite the doctors’ positivity about his improvement, we didn’t see it.  We saw a man who was exhausted, frustrated, worried, and still somewhat confused, a man who was telling us that he just wanted to go home.

It was at this point that the idea of supplemental feeding was brought up.  As part of the steps we were discussing, this is what I wrote in the Notebook …

I did not want supplemental feeding to be started.  For the first time in Dad's treatment, there was disparity amongst us – really, at least from my perspective, between everyone else in the family and me.  That was its’ own special kind of hell.

I knew that each of us wanted more than anything to figure out some way to help Dad, and I realized that having a consensus was crucial.  It wasn’t that I disagreed with the fact that Dad somehow needed to get nutrition.  I just wanted SO MUCH for it to be in a typical way, through eating on his own.  I knew him as a super-determined man, a person who was more motivated and more physically fit than anyone else I knew, and I wanted him to be able to use his WILL and his STRENGTH to pull through this, even though I could plainly see that wasn’t possible.  I was horrified by the visual in my head of him having another procedure and of how helpless he was in the bed.  I didn’t trust anyone on the medical team, and I felt like even they weren’t on the same page about what the best thing to do to help Dad was.  I knew that inserting a PICC line would be risky and scary and painful for Dad, and so NOT what my strong, proud father would have wanted.  Hell, it’s not what any of us wanted for him, but we wanted him to get better more than we didn’t want him to have another procedure.

I see now that we were at different stages in our anticipatory grief, which, especially coupled with the worry and fear attached to the uncertainty of Dad’s condition and about our future as a family, was threatening in a way that even the cancer hadn’t been.  I saw the big picture, the goal of somehow stabilizing Dad, and I knew we had to get there in any way that we could; I just couldn’t get past the terrible gnawing in my gut that I couldn’t quite identify, and I couldn’t shake the feeling that Dad was slipping away or even that quite possibly he was losing his will to fight.

A PICC line, by definition and per its acronym, is a peripherally inserted central catheter.  It's like a large IV that goes in through the upper arm and is fed to the vena cava near the heart.  From the way that I remember it, the idea of the PICC line was first brought up by Dad’s ICU nurse, who, like everyone else around, was concerned about his nutritional status.  The nurse told us that an NG tube is usually the better option with which to start supplemental feeding but that, since Dad couldn’t even keep from pulling out the oxygen tube in his nose, she felt that a PICC line would be better.

As well, when considering an NG tube (which would go in his nose, down his throat, to his stomach), we also had significant concern about Dad’s medical history, which involved a botched sinus surgery by an ENT in the 1980’s that resulted in a orbital bone (under his eye) accidentally being scraped out during the procedure. The concern was that, instead of following the intended route, the NG tube would coil in the extra space in Dad's sinus.  [While I was in college, he’d had reconstructive surgery by another surgeon to hold his eye in its socket because of that screw-up by the first ENT, which sucked enough already, but I never dreamed that the malpractice from the first surgery would cause Dad more pain, more risk, and arguably a more rapid decline at the end of his life this many years later.  Remind me to find that ENT and punch him straight in the &^%@ one day.] 

Thinking back to the decision of whether or not supplemental feeding support should be provided for Dad and, if so, how it should be done, it seemed like we were getting multiple opinions from many different sources; I remember standing just outside the glass wall of Dad’s room in the ICU and, despite the fact that none of the doctors on the case had ever even broached the subject, listening as his nurse, another nurse, and the PICC-line nurse talked about how they thought he should get the procedure done.  “With a PICC line, he’ll be able to get nutrition and medications as well as blood tests done without additional sticks,” one of them offered.  Dad’s nurse said that she could call and get the oncologist to order the procedure if we wanted.  I wanted to scream, “NO WE DON’T WANT IT; WE DON’T WANT ANY OF THIS!  WE WANT HIM TO BE WELL!”  Why was this being discussed by the nursing staff and not the doctors that were involved?  Why was this decision being put to us, or, specifically, to my mom, as if it was a now-or-never proposal?  Why the hard-sell, all of a sudden?  The room was spinning.  I didn’t know the answer to those questions, but I didn’t know how else we were going to get Dad better.  All I could do was pace the floor, cry, and hope that signing off on this procedure would be the right choice for Dad.

Up Next … Part 40 – Supposed To Be Better