In the Beginning…

Before we get started, here are some key points that I learned with each loved one. Please note that this listing is not meant to be all-inclusive but, rather, to provide some basic guidelines upon which to start to form a caregiving foundation. Additional details on the following points and much more will be included in future posts.

  • This is about living. “I may have a terminal prognosis but, I am still here.”

As Melanie and I used to say, “each day is another opportunity for someone to find a potential treatment regimen that could possibly slow the progression of the cancer.” Therefore, to the fullest extent possible, we got out each and every day even if we had to use her wheelchair.  We took road trips, traveled to our daughter’s club volleyball matches, went for walks even in the rain, had meals at some of our favorite places or parks, recorded new songs the Mel had written including videos to post on, etc.

With my father, soon after his initial diagnosis, we put plans in motion for a road trip to visit family in Louisiana. Just after his third chemo session three months into his final journey, he and I made the 3,100 mile, 10-day round trip. Although there were some medical challenges which required ample preparation and prior approval from his medical care team, we were able to make his final trip home. Note that we had already put plans in motion for a second trip as we made plans for the first one.

  • Life is a gift. Embrace each day to the fullest–good or bad, making the most of the time that you share, regardless of the prognosis and the time that you may have.
  • Take each day one day at a time.
  • Be present and proactive as a loving spouse, partner, parent, friend, caregiver and/or patient advocate.
  • Assemble a care team consisting of willing and able family and friends. Aside from your medical team, it will be important to put together a support team.

Note, do not be surprised if people say that they want to be a part of the support team, but don’t show up when called upon or when things get tough.  This is not uncommon.

Again, remember, time is not on your TiLO’s side so keep moving forward with respect to his/her care, even if you are the sole primary caregiver.

I was the primary caregiver for each of my TiLOs even though, in each situation, I started with an open invitation to all family and friends who wanted to be a part of the care team. While I cared for Mel and mom in our home, I cared for my other TiLOs in their respective homes.

More often than not, during the time that I spent providing online support, one of the most common issues was the lack of supporters to be a part of the care team.

  • Create a ‘timeout’ space and/or activity for you and your loved one.

For example, Melanie and I used to go to the Rose Garden at the City of Hope (“COH”) facility in Duarte after her appointments.  On other occasions following some really tough appointments and/or news, we would spend time in the Japanese Garden at COH.  And, from time to time, we would splurge and get shakes (chocolate and strawberry) from the Carl’s Jr. situated just up the road from COH, then, we would take surface streets home (we referred to this as the ‘slow road’ vs. taking the freeway).

  • In situations involving very aggressive diseases such as certain forms of cancer with a Stage IV diagnosis, seek primary care medical attention and/or a second opinion at a Comprehensive Cancer Center (“CCC”), as designated by the National Cancer Institute. Some of the notable CCC medical centers in the US include the City of Hope (CA), MD Anderson (Texas), Dana-Farber (MA) and Sloan Kettering (New York).

Please note that by no means is this suggestion meant to be disrespectful towards any other hospital or medical institution. We learned firsthand the importance of seeking a second opinion after Melanie had endured some very harsh chemo treatments at a highly recommended local medical oncology group. While the initial medial oncology team totally missed diagnosing a second extremely aggressive form of cancer that Melanie had as they had mistakenly identified it as “new tissue,” the COH team immediately recognized the presence of the second form of cancer and, soon thereafter, found and surgically removed a tumor mass in the occipital region of her brain. This critical discovery extended her life by eight months, most of which was filled with quality time.

The bottom line is that not all doctors, hospitals, hospices, etc. are created equal.

While caring for my father, we also sought a second opinion from Kaiser Hospital after he underwent a terribly botched medical procedure at a VA (Veterans Affair) hospital in Southern California.

A note of caution. Please keep in mind that a second opinion may actually corroborate the initial diagnosis and prognosis. In such instances, while you may decide to seek additional opinions, please keep in mind of the importance of the potential loss of quality time and days in pursuit of a “better” opinion.  Once the diagnosis is set, if available, the medical team can then outline an action plan for treatment and/or palliative purposes depending upon the status of the medical condition.

In my uncle’s case, after he received a terminal diagnosis for colon cancer a couple of months following surgery, he sought a second opinion at COH, who, during their initial screening process, confirmed the terminal prognosis issued by his medical oncology team.

In another instance where I was providing online support for a gentleman caring for his terminally-ill wife, who had developed a very aggressive form of metastatic brain cancer, he sought a second, third and fourth opinion from three top comprehensive cancer centers over a 12 months period. In each instance, he and his wife traveled to each medical facility where she was admitted. In each instance, although they had the financial wherewithal to pay for admission and stay in the hopes that her condition would improve so that a very difficult medical procedure could be undertaken, she spent her final year at four hospitals across the US. The desired medical treatment involving methotrexate being administered directly into her brain was never performed due to her constant weakened health condition. To say the least, during my conversations with her husband after she passed, he expressed a great deal of remorse as to the way that his wife spent her final year of life.

  • Remember, with every decision there are resulting consequences…good as well as bad. Ask questions, research and discuss as thoroughly as possible in terms of a TiLO’s wishes and expectations.
  • Time is not on your side.  Remain proactive and diligent with respect to treatments, whether they be curative (trying to cure underlying medical condition) or palliative (comfort), communicating with the medical care team, while maximizing the quality of life as the disease progresses.
  • Keep a daily journal. Make notes of appointments, medical care team members and their respective roles plus contact information, meds, tracking vitals and daily activities to be monitored per doctor request (i.e. food/fluid intake, bowel movements, urine output, sleep, mobility, cognitive abilities, etc.). Each day can be very fluid so a journal can help maintain vital information.
  • Stay focused.  For a TiLO’s caregiver, the focus should be on slowing the progression of the disease if possible through available treatment options, alleviating symptoms to maximize daily quality of life and finding ways to keep your TiLO engaged in day-to-day life (i.e. hobbies, music, TV, movies, outings, conversations, etc.).  Remember, one day at a time, one step at a time.
  • Caregivers do all of the ‘heavy lifting’ as your TiLO’s primary focus should be on getting stronger, getting through the treatments, if any, and getting through each day one day at a time.  Quality of life should be your primary objective for your loved one each and every day.

At some point, the treatments may only be for quality of life purposes only, rather, than, for curative purposes. At this stage, the primary medical care team will refer the TiLO to hospice.

Hospice’s primary role is to put a plan in place to help maximize a TiLO’s daily quality of life once curative treatments have stopped, as well as provide the tools for the caregiver to accomplish the palliative objectives, and lend support to the caregiver and TiLO’s loved ones. In most cases, aside for the initial visit and intermittent daily visits in home settings, the hospice team is on-call should the TiLO or caregiver need assistance or have questions. Hospice teams can consist of a doctor, lead case nurse, social worker, person of faith, nurses, and other general support personnel.

Should a TiLO wish to pass at home, it is very important for the caregivers and ones to recognize that you will be the primary care provider. Unless paid for through insurance or private sources for 24/7 in-home care, the caregivers and loved ones will be responsible for keeping a TiLO comfortable as they go through the dying process.

  • Keep the faith.  However you and your loved one define your faith, which is a term that I use in the most general sense, it is very important to maintain that faith during this part of the life journey.

For me, personally, I have witnessed things with each of my loved ones that I am unable to explain however, I believe in my heart that the strength of my faith removes any questions for me regarding each of those occurrences.

For the caregiver, there will be a time to ponder a multitude of questions.  For now, do what it takes to help your loved one make the most of each day, one day at a time.

For those who argue that only God knows the timing of our passing, which I totally respect, please keep in mind that should the TiLO outlive the initial prognosis, all the better, especially if the TiLO’s quality of life meets their stated expectation and wishes.

In my experiences, three of my five TiLOs passed within the time range provided by their respective doctors. My mom was given a prognosis of three months at best, she was with us for eight months. When I asked her palliative care doctor how was it that mom lived five months beyond the best case estimate, he simply replied, “it was more than likely due to the loving care that we provided in a home environment.”

Note that we always created a “heaven on earth” setting for each loved one depending upon their lives prior to the onset of their illness.

For Mel, she had outlived the initial terminal prognosis with a miraculous recovery from the removal of a very large tumor mass that had formed in her brain. However, she then received a second terminal prognosis related to the metastasis (spread) of breast cancer cells to her brain. She passed within the estimated time range of 60 to 90 days.

In most instances where I was in communication with either caregivers or the actual terminally-ill person, the prognosis were fairly accurate.

Please note that this is not to say that doctors are infallible as I also know of some instances where individuals survived well beyond the original prognosis.

My point is, with this very delicate subject matter, spend most the time focused on living each day one day at a time. Only in time will we know as to the accuracy of the original prognosis. If a TiLO lives beyond the prognosis, outstanding, I say. May their days be filled with a quality life and embraced by all around them.

  • Remain respectful of the wishes and desires of TiLOs. Be their advocate, when necessary especially if they are unable to speak for themselves.
  • For caregivers, on days where everything seems to be going wrong and all seems bleak, remember that your TiLO carries the greatest challenges each and every day, as they may be another step closer to the end of their final life journey as we know it.  This is not to minimize all that you will experience, but to serve as a reminder for the sake of maintaining some semblance of perspective.  It will serve you well as well as those around you, especially young ones.
  • While dying is a natural part of our life cycle, dying well is just as important as living well.
  • For all who offer well wishes, thoughts and prayers, which is certainly appreciated, please keep in mind that an actual helping hand can help to maximize the quality of a TiLO’s life as their life journey comes to an end.

In each of my caregiving experiences, as well as those shared with me by many others online, there was never a lack of well wishes, prayers, kind thoughts and words of encouragement. However, the actual physical presence only materialized at the TiLO’s memorial or funeral service.

Please know that I share this final point in the hopes that we, as a collective society, will come to recognize the importance of helping each TiLO with dying well. Remember, time is of the essence and does not wait until people can get comfortable with the realities faced by TiLOs.

As always, hugs to one and all!!!

~D. Toru White~

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