SPECIAL INFO

There is nothing easy about this journey and some things are impossible or too painful to express.

I am honored and grateful that I met Diane Phillips on the BrainTMR list.  She has a special way with words and was able to put down in writing some of the very difficult experiences those fighting cancer and those who love them may have to face.  With her permission the following information was taken from her web site.  Her love for her Dad shines through in every word.  It is our hope that this info will provide some answers to the "impossible to ask" questions.

The Hospice Decision

What to Know About Hospice

Questions to Ask Regarding Hospice

Keeping Your Loved One
at Home Versus in an
Inpatient Facility

End-Stage Landmarks

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The Hospice Decision

These are some of the concerns that cross caregivers' minds when making the decision about hospice/palliative care for their loved one with a brain tumor:

• Could it really be almost over, after how hard we've fought?
   

• At this point, is there any chance that one therapy or another could make a difference, even if only for a little while?
   

• If we somehow managed to buy more time with another treatment, how high would the quality of that time be?
   

• How much time might we still have? Weeks? Months? If we could know that, how would it impact our decision about what to do now?
   

• Is it possible that the patient could rebound from current deficits and be just fine in a week or two? If so, would it have been premature to call in hospice help?
   

• If we make a move toward hospice care, will it appear that we just gave up? How will that make the patient or other family members feel?
   

• Would I be capable of caring for the patient at home, or would an inpatient facility better meet his or her needs?
   

• If we keep the patient at home, what will be required? How much help would hospice provide, and would it be enough?
   

• Will the patient feel pain, and can we expect to manage it?
   

• If the death occurs at home, afterward how will it affect me and other family members if we continue living here? Will we forget all the memories of good times spent here, and be left remembering only the sadness of illness?
   

• If young children are involved, how do I ensure that decisions are made in their best interest as well as in the best interest of the patient?
   

• What does the patient wish to do at this point, and is he or she in a state to make that decision?
   

• If I call in extra help, is it like admitting I'm not a good caregiver?
   

• I'm afraid I'm going to feel guilty and regretful no matter what I do. How can I know I'm making a good decision I can feel good about a month from now...a year from now?

Stepping Off the Roller Coaster

If you've ever been on a roller coaster, you know that after so many climbs and plunges, you begin to anticipate that next change in direction. What goes up must come down; what comes down will have to loop back around and take you to a new dangerous high.

So goes the figurative roller coaster journey for most brain tumor patients and their families. For example, new symptoms can lead to surgery, which brings improvement and a plateau of good times. At another time, a beautiful MRI can be followed by brand-new deficits that surfaced seemingly overnight, taking the patient to new lows in life quality. Peaks and valleys, each in turn. Anyone who has been fighting for a while understands that often what keeps one going is the faith that a bad week just may be followed by a better one. That's the way the roller coaster works, and long-term caregivers, to some degree, often anticipate an upturn around most of the bends. Sometimes it's the best way to face another hard day.

But one of the first indications that a brain tumor patient has entered the final stages is when the "valleys" stop turning upward---that is, deficits worsen, new problems add themselves to the mix, and when the caregiver compares the patient's current status to the status a week or so ago, the scenario is noticeably dimmer.

And yet it can be hard sometimes to "see what one is seeing," after living the up-and-down pattern for any length of time. For example, when a patient first skips two meals in a day, the situation is too new for most caregivers to consider significant. That roller coaster mentality convinces one that things may improve by dinnertime...
or maybe the patient will be famished in the morning, after a good night's rest. Sometimes that is, in fact, what happens. Other times, though, a new trend has begun---a new landmark has been passed---and it isn't until more time has gone by that one realizes a new loss of function has occurred which will not reverse itself.

When the patient experiences more and more of these losses and seems to be moving "deeper and deeper into it" rather than bopping up and down through the changes, it is wise to look honestly at the situation and consider the role hospice could play in caregiving. Most caregivers who have already bid their loved ones goodbye say now that they only wish they "had seen it sooner" and had called upon hospice help earlier than they did.

No one can blame us for continuing to fight perhaps a little longer than is required---that's just love at work, after all!---but those who have preceded you in caregiving would have you know the following.
 

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What to Know About Hospice

• Calling in extra helping hands is by no means a sellout of the patient, nor is it an admission that you aren't up to the job at hand.
   

• Enlisting hospice aid leaves very few people with feelings of guilt later.
   
• Having help can lighten your load so that you can give the very best of your giving.
   
• Hospice nurses and volunteers can help you feel confident in uncharted territory most caregivers are untrained for.
   
• Hospice provides experience with managing pain, dealing with family issues, making final arrangements, and more.
   
• Hospice workers are trained to be discreet and unobtrusive, bringing aid to the caregiving situation in a quiet, gentle way, while the primary caregiver remains just that.
   
• It is not the goal of hospice workers that life end sooner...only as comfortably as possible on its own natural schedule.
• Hospice workers can help you understand the body's natural shutdown process and what each new event means.
   
• Hospice counselors are available to speak to family members about issues related to death and grief.
   
• Hospice volunteers can sit with the patient so the primary caregiver can get out of the house for brief, restorative outings.
   
• Hospice nurses and volunteers offer many wonderful tips for comfort and care.
   
• Other hospice aides are available to run errands, do light housekeeping tasks, and help with bathing the patient and changing the bed linens
   
• Hospice workers are excellent listeners at a time when it can be very comforting to find a friend who understands.

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Questions to Ask Regarding Hospice

Who will act as the overseeing physician---the doctor who has been handling my
loved one's brain tumor care up until now or one of the hospice agency's own doctors?

If my loved one's doctor is willing to remain on call to us during the hospice period, is that something you would be willing to work with?

If it can't work out that way, can you tell me a little something about the doctors you mainly use (their experience, etc.)?

(Note: It is very unlikely that a hospice doctor would ever make a visit to the house or even to an inpatient facility at which he or she does not normally call. The doctor is called upon by hospice nurses in cases when a new prescription or refill may be necessary and he would not normally have any contact with the patient or family directly. Also, it is likely that the hospice doctors are general practitioners rather than specialists with any direct brain tumor experience. If the patient's own brain tumor specialist is at all willing to remain on call to the family or to the hospice nurses, this can be a wonderful bridge into full-time at-home palliative care. We were lucky enough to have my father's neuro-oncologist insist, at the time he made the hospice referral, that he would be the one to call under all circumstances. Things couldn't have gone smoother, and he occasionally called us personally to check in.)

How often could we expect a hospice nurse to come out to the house?

(Two to three times a week is fairly standard when the situation is status quo, and otherwise as needed. Usually, they check vital signs, note any new changes, and linger in order to answer any questions the caregiver might have. If the nurse has any feeling about how much time remains, he or she will share this information with you.)

Who would I call if I had a late-night question? Is this an answering service or a hospice dispatcher? How long, typically, might it take for a return call? If it was necessary for a nighttime on-call nurse to come out to the house because of something serious, how long would you estimate that this would take?

(A reasonable delay for a return phone call would be 15-20 minutes. A reasonable delay in having a nurse appear after phone contact would depend on the distance between her home and yours, but an estimate can help you understand the potential for worst-case scenarios "just in case.")

What kind of equipment do you feel would help us in this setting? How long will it be before this can be set up?

(This assessment should be handled at the first visit from hospice. The volunteer or nurse will review the home and the patient's current level of function, and from there will recommend certain aids, like an adjustable hospital bed with an air mattress, a bedside commode, a wheelchair and ramps, a Hoyer lift or a lift belt, and incontinence supplies---whatever is called for at the current time, with additional supplies being offered as needed whenever the situation changes. These things should typically be delivered by another volunteer within a day or two. Other, general advice may be offered about making the house or room more convenient for caregiving.)

What other types of volunteers might we expect to have access to? What kind of schedule is typical for them?

(A bathing aide might come out once or twice a week perhaps. A social worker should come fairly soon into the new arrangement, to greet the patient and family and begin that important rapport; after that, visits might be once per week unless they are needed more often. A general volunteer, such as would sit with the patient while the caregiver ran out or would do basic errands, might come once a week if requested. A chaplain works in a general sense like a social worker, and is available if the need or desire exists; if the family has a request for a specific religious contact, the chaplain can assist in making that connection. The schedule is worked out between the caregiver and the various volunteers themselves and is generally flexible.)

Is it possible to specifically request a hospice nurse who has had experience with end-stage brain tumor patients in the past?

(New cases are generally assigned to the nurse with the lightest load at the moment, so it may be just luck of the draw, but it can't hurt to ask.)

What is the feeling of your agency toward continuation of Decadron use in end-stage brain tumor patients?

(Schools of thought vary on this, but it is good to know ahead of time if the caregiver and the selected agency agree philosophically, or if the agency is at least willing to support the caregiver in this personal decision.)

Will my loved one continue taking all of the current medications as usual?

(Probably yes, for as long as he or she is able to do so easily. The exception will be that chemotherapy will likely end, as this form of medication contradicts the concept of hospice as palliative, or comfort, care.)

How will hospice care work with my insurance plan? Is there anything I should know about that would not be covered?

(Double-check to make sure that the agency which was referred participates with your plan, if that is a concern. Some larger cities have more than one hospice agency; one may be on the plan, one may not be [as is true for some hospitals]. The representative you meet initially may not know your plan particulars intimately but will be able to generally discuss this with you.)

A Final Word...

The first meeting with a hospice representative can make caregivers a little anxious, but know that those who choose to work in hospice care are generally witty, warm, and wonderful people. And though this may be your first experience with hospice, it probably won't be your rep's first experience with a loving family that is nervous and emotional about facing this challenging time. The rep who sits down with you is likely to put you completely at ease, leaving you with few questions.


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Keeping Your Loved One
at Home Versus in an
Inpatient Facility


Keeping Your Loved One at Home

Home could be a more nurturing environment for end-stage care.

The patient may be happier and may feel more relaxed and at peace.

If the patient dislikes institutional settings, the caregiver may feel tremendously proud of being able to honor the patient's feelings about this, as the fulfillment of a final wish.

The family can control the atmosphere, without concern for the types of interruptions that occur in an institution (eg, intercom announcements, a room mate who may have
disruptive habits).

At-home care eliminates the logistical efforts of driving to a facility and remaining there for hours at a time while visiting the patient.

At home, caregivers can still handle home-related duties like housekeeping, dealing with the mail, and being available for incoming phone calls even while managing the patient's needs, so that "things don't pile up."

Loving caregivers know the patient best---from how cool or warm the patient likes the room...to the patient's favorite foods and music...to how comfortable the patient is with visitors---while institutional caregivers do their best but might miss opportunities for true comfort.

Especially when the patient has lost the ability to communicate well, family members are often much more successful at "reading" the patient's needs based on hand motions or a certain look; an institutional patient may find that communication is much more challenging with unfamiliar nurses when family members are not present.

When children are in the home, ongoing routines can be easier to manage, without the need to drive back and forth between the house and the hospice facility.

When children are facing the loss of one parent, keeping the situation at home can maintain open access to the healthy parent during a very vulnerable time in their lives.

It can be beneficial for children to have continued access to their loved one---to join in caregiving in whatever way suits them---and some children may find it less frightening to handle such things at home than in an institution, where they must see many other ill people of various ages and conditions whenever they visit.

Support for the caregiver can be stronger at home, where visitors may be more comfortable stopping by to visit, calling on the phone, or bringing over a meal.

There is less fear for the caregiver that he or she might miss special moments, including the passing, because the patient is in the house rather than miles away.

There are increased opportunities for special conversations, touches, and glances that
occur spontaneously between the patient and the caregiver, making meaningful memories.

Caregivers can be more comfortable in the home setting---can walk around in PJs,
turn on a favorite show or music, relax while the patient sleeps, grab a snack more
easily, etc.---and when the caregiver is comfortable and relaxed, the quality of care is often better.

A conflict with a visiting hospice volunteer, for whatever reason, can be easily resolved by replacing that case worker with another; conflicts that occur in a facility can be more difficult and it is unlikely that a "problem" nurse would be removed from the patient's case.

It stands to reason that even highly qualified and talented nurses might not have as much to offer a patient as those who love him or her, offering reassurance that even a caregiver who is "guessing his or her way along" will do just fine.

Hospice assistance all along the way, as well as at the time of death, removes many of the more intimidating questions and challenges one would anticipate in planning for a death at home.

Placing Your Loved One in an Inpatient Facility

A tentative caregiver may feel ill at ease with the responsibility of monitoring medical
issues at home, since hospice visitation may not take place daily.

A caregiver who is aged or dealing with physical challenges of his or her own may find
that managing home care for an end-stage patient may be, realistically, too much to handle.

Caregivers often find it hard to shut down and give in to sleep, at night or when the patient is resting, because they can't help but hear every twitch and turn, so having others handle blocks of time at a facility where the patient will be safe can be a relief.

A caregiver who would have to handle things solo, with no relief aside from hospice visitations, might find it exhausting to deal with "all the shifts" 'round the clock, and the person in this situation may feel it is more practical to accept the help of a facility in order to protect his or her own overall health.

The layout or size of the house may not lend it well to in-home care, if major modifi-cations would be necessary or if most of the living is done above the ground floor.

Some children---older children (pre-teens to teens) in particular---may find it harder to deal with witnessing the end stages at the house where they live. They may be:

Embarrassed and uncomfortable because of what their friends know
about the situation

Put out by how the illness has negatively impacted their own freedoms
(for example, to be unable to use the phone at will when an incoming
call is expected or to be unable to go out with friends because no one
is available to drive them)---note that even the kindest child, with the
greatest love for the dying patient, will occasionally express some
"ugly" emotions as part of the process of coming to grips with things

Awkward about seeing their loved one undressed or unable to perform
basic functions

Unsure of what to say to the dying patient

Hurt to see the patient's personality changing or to see the patient "moving
away" from their previously loving relationship

Full of spiritual questions that had never arisen before and which they
lack the maturity for just yet

Deeply sad and unable to adequately able to express their feelings at times

Afraid that the death will be a frightening or "creepy" event

Anxious about what it might feel like to continue living in the house after
a death has occurred there

Those who are afraid that living afterward in a house where sad memories exist may find that it feels more right to take the situation to a facility they are unlikely to see again after the death, allowing home to house only the best memories.

The patient whose behavioral and personality changes have created a volatile home situation would best be handled in a professional facility accustomed to such cases. While this is rare, some patients have been known to become verbally abusive to other adults or children or have threatened physical harm to themselves or others. There is no question but that most loving caregivers would be under qualified to deal with these aspects of tumor-induced dementia and that defusing a dangerous situation is simply the smart thing to do.

Caregivers can come and go with flexibility and can continue working part-time if the situation demands it, whereas an at-home situation might require out-of-pocket nursing expenses to cover scheduling gaps.

Those who aren't sure they can "handle this" all right and who are uncertain about how strong they feel emotionally might feel that being able to rely on professionals is much less stressful and still allows them to feel loving and attentive.

Some of those who used inpatient facilities for their end-stage loved ones expressed relief that their visits were strictly social and happy, not having to involve the more detached physical/medical duties that would have been required at home but that skilled nurses were now performing.

The patient who is afraid that their loved one would be "taking on too much" by keeping him or her at home might be relieved by enlisting professional care, especially in cases when the general support network is slight and the caregiver might be left alone after the approaching death.

A Final Word...

When making this important decision, note that it can be easier to admit a patient from home to a facility than it can be to have the patient released from a facility for late-stage home care. In other words, should there be a change of heart along the way and at-home caregiving becomes too challenging for one reason or another, that commitment can be reversed easily and a referral to a nearby facility can be initiated. But having a change of heart the other way can sometimes be more complicated, as the institutional medical staff would have to make a number of arrangements and deal with their own paperwork.
 

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Read more about Diane's families experiences