Palliative Care in the Home

A Filipino Experience

On the heels of last week’s Bruce’s Blog, about caring for a loved one in the home, we publish this week an excerpt from Bruce’s book, The Freedom Handbook for Living & Retiring in the Philippines, written by the adult child of a terminally ill parent who nursed her while living at home in Manila.  The event occurred several years ago, but the story and the advice are still totally applicable:

Margie’s Experience
Caring for a Parent
When we first got the diagnosis that Mom, in her eighties and very active, had colon cancer it was not only a shock, but we also had the hope and expectation that she would get better. We had hoped that she would be able to go through chemotherapy and radiation, which would bring her into remission, or perhaps even a total cure. Sadly this was not to be, and instead we were faced with a steady decline in her strength. Mom remained positive and strong throughout her illness, a testimony to her faith and all the people she cared so much for.
Early on the doctors asked me if I wanted my mom to know exactly what was happening.
I can only say that the decision I made at the time was what I felt was best for her and for our family. My mother was always fiercely independent. I felt that she would want to know exactly what was happening to her, and that she was perfectly capable to make the decisions she felt most comfortable with. She was also very intelligent, and I was sure that if we tried to keep things from her, that she would figure things out on her own . I felt that we needed to be able to trust each other, not knowing what might face us.
However when Mom had to have a stoma, the doctor did not seem to think that she would be able to have surgery at a later date to reverse this procedure. The stoma would be permanent. I asked the doctor at the time to keep this information from her, which he agreed to do, as he and I both hoped she would have an easier time getting used to this new way of life if she felt it would be temporary. We would break the news to her a little bit at a time, to give her a chance to process and deal with it.
As my mother was in the recovery room, having just had her stoma surgery, the doctor came out to talk to me and gave me the worst diagnosis I could have heard. I was totally unprepared for it. He tried to soften the blow as he stated that the extent of my mother’s cancer was worse than they had thought, and that it was his belief that she would only have three months left to live. Chemotherapy was no longer an option.
We stayed for quite a while in the hospital after the surgery; a few weeks. Mom made the decision that she would like to go home, and not return anymore to the hospital. In order to comply with that desire, I set up her bedroom at home as a hospital room, and I hired four nurses who would work in shifts, but live at her house for the duration. I organized with the hospice for amazing palliative care doctors to come regularly to visit mom at home (Editor’s Note:  please refer to the Index of Professionals, “P”, Palliative & Hospice care for recommended institutions). I had no idea what I was doing at the outset, but by the the end of the experience I can say that I was an expert at managing this situation.
Should you want to do the same for your loved one as I did with mine, I would like to share with you a few suggestions:
As a family prepares to take the patient home, on the day of discharge, the hospital gives them a list of medications and supplies necessary to care for the patient. The day that a patient is being discharged is already a stressful day; it is not a good day to run all over town looking for the things that you need so that the patient remains comfortable. In order to prepare for a smooth transition, request that this list of medicine and supplies be given to you a few days in advance of the patient being discharged. This gives the family a chance to get everything ready beforehand. This would make the move from the hospital to the home smoother and less hectic for all concerned. Also, you will have whatever you need on hand so that the patient does not have to suffer while a needed item is obtained from somewhere else.
The hospital should also provide you with a list of all the pharmacies in your area (especially the ones which are open for 24 hours) so that the family is not hunting around, trying to find what they might need. Perhaps a survey should be taken of where to buy certain medications the patient might need, as I found out that not all of the pharmacies have a steady supply of medications needed for I.V. use.
Lists of suppliers, complete with phone numbers and addresses, can be obtained from the hospital as well as their recommendations for suppliers of things such as oxygen tanks, suction machines, hospital beds, I.V. stands, and an ambulance service (Editor’s Note:  ELRAP highly recommends Lifeline Philippines as an ambulance service, please consult Index of Services & Supplies for contact information as well as last month’s Medical Matters blog). Some of these items may not be needed immediately upon leaving the hospital, but the need may arise once the patient is at home. If an emergency happens, the family is left in total panic as they are unprepared to obtain the items they will need.
When we first left the hospital, they suggested that I get some of the medical supplies from Bambang (in the old part of Manila). Although they had quite a lot available there for lower prices than in Alabang or Makati, I did find that it was not always advisable to buy too much of any item since things change, and you sometimes end up with too much of one item that all of a sudden you don’t need anymore. Also some items available in Bambang were of inferior quality, and caused more anxiety than the savings were worth because you could never depend on them. For instance in the case of the stop cock used for the I.V., the ones that I got from Bambang would break constantly, and start leaking, so they had to be changed more often, and ended up costing more.
If the family will need a nurse or a caregiver, or both, once the patient is at home, they should already have found, interviewed, and hired these people while the patient is still in the hospital (Editor’s Note: for Nursing Services, please refer to the Index of Professionals “N” Nurses (readers who would like to recommend a service, please send us an e-mail with the information to elrap101@gmail.com (we will have your recommendation vetted with much appreciation), otherwise, we would suggest consulting the local hospital for nurses and/or caregivers). The nurse and/or caregiver can learn directly from the doctors and the nurses at the hospital exactly what is required to care for the patient. They will know not only the procedures and medications, but they will also meet and come to know the doctors. This makes communication between professionals much smoother.
There are agencies where you can hire nurses and caregivers, but these are usually quite expensive (Editor’s Note: about US$300.00-400.00 per month in salary). In my case, I found that the nurses who were recommended by the doctors or through friends were not only more affordable, but better than the ones I interviewed from the agencies. Also, they came with excellent references, as I knew and trusted the opinion of most of the people they had already worked with.
You must assume that most family members, such as myself, have no medical experience when they are faced with taking a patient home, and are totally unprepared for what this means. It becomes quite an overwhelming feeling to know that the care, safety and responsibility of caring for someone you love rests totally in your hands when you have no idea what you are doing.
I was very lucky to work with doctors who did not mind my endless questions, emails, and the letters I would leave at their offices. They treated me with patience and respect. Even though they must have been perhaps annoyed with me at times, they were always understanding. I believe it is important to find doctors who you are comfortable with; they will be important members of the journey you are taking, and you and your loved one must be able to be open and forthright with them.
I cannot stress enough the importance of this. From the beginning an open and honest relationship needs to be established. There are many wonderful, competent doctors in the Philippines, and though it may take some homework on the part of the family or patient to find the ones who you can communicate with, it is well worth the effort and will ease the stress of the situation in the long run.
Families should be informed of establishments such as Alabang Hospice, or other organizations where not only can they borrow equipment, but they can also get counseling and spiritual support.
For example-Asian Hospital has a support group for families and patients with cancer, while Alabang Hospice (a.k.a. Ruth Foundation) has people who volunteer to visit families to help them through difficult times.

CARING FOR YOUR LOVED ONE IN YOUR ISLAND HOME

The Philippines offers an affordable, compassionate, and caring alternative to an assisted living facility in the First World.

 A fact of life that we all eventually have to face is that at some point, we will have to care for a parent, a spouse, or a loved one who is in need of assistance, be it physical, emotional, or both. The need can be temporary, it can be permanent, or it can be finite, but as sure as dealing with death and taxes, we will one day have to deal with assisting someone we love.

In the First World, the usual course for care would be moving your loved one into an assisted living facility or nursing home. The option of being able to live in your own home, among your own family, and be capably cared for is not usually a feasible one in a First World setting.

In the Philippines, caring for a loved one at home is a way of life. It would never occur to a Filipino to send a loved one outside of the home to be cared for. In the case of a disabled family member, the culture dictates that he or she be cared for at home.

I have known several folks from abroad that have taken the option of moving to the Philippines with a sick spouse rather than go into assisted living. For whatever reasons, moving into such a facility was not an option in their circumstances, so they chose instead to move here, where they can live in their own home together as husband and wife. In this environment, they have been able to avail of the nurses and caregivers who come into the home to live, and to give them the specialty care needed.

 

One gentleman I met, Hugh, had a wife with dementia. She required a full-time caregiver. Hugh did not want his wife in the health care system—a.k.a. senior citizen home—back

in America. He had had some experience before, of coming to the Philippines on business. He also knew of the good reputation of Filipina nurses and caregivers in the United States. His decision was to bring his wife to the Philippines and to set up a home for them here.

Then there are others I have met who have parents who they did not want to put into nursing homes or assisted living; they preferred to have them live with family. Unfortunately, in a First World setting, the family does not have the ability to be with the father or mother every minute of every day. In the cases of these acquaintances of mine, the adult children brought their aging or disabled parents “home” to the Philippines to live with them.

Another scenario I have seen is people who are living and attending to a loved one with a degenerative problem that requires someone watching over them constantly. There are also instances of people who are of sane mind but who have a handicap that limits their personal movement. In the First World, either of these scenarios put tremendous pressure on the family members who are the caregivers of the person who is not well.

In the Philippines, there are wonderful, affordable options to life in a nursing home or assisted living, a life where the person who is disabled can live at home with family. A parent can be with the people who care for them, living at home, and they can have many other advantages as well, such as massage therapy and physical therapy right in one’s family home. Moving an ill family member to live with you if you are retired in the Philippines makes life much easier for the individual or family of the sick person as both the sick person as well as the healthy family members are not strapped into a situation where their time is delegated to purely to caring or being cared for.

It’s a real win-win situation all around. The person who is ill gets to be taken care of with competence and compassion, and they can look forward to cheerful social interaction with their caregivers as well as with family and friends. The family members get the assistance they need to care for their loved ones, but still have the time and opportunity to move forward with their own lives. The caregivers, midwives, and nurses in the Philippines have the advantage of a good, steady job.

Even though in the First World, the cost of a caregiver is usually borne by medical insurance or social services, (which often would not cover the cost of caregivers if one is living overseas) the quality and frequency of care is often limited. In the Philippines, the cost of competent caregivers is very affordable, even without the financial assistance forwarded by insurance companies or social services. Add to this fact that the cost of the extra services, like massage therapy (US$5.00 per hour for home service) and in-home physical therapy is down right cheap by world standards.

Filipinos, particularly those in the medical field, are known around the world for their compassion. In the Philippines, there is no shortage of caring for the elderly, for whom the culture nurtures the greatest respect, or for the ill. You see elderly folks being wheeled around in the mall by attentive helpers, and they seem in general so happy as they have a friend and companion who is also someone who helps them and gives them a degree of independence as well. I do not believe that there is anywhere in the world that the elderly and the ill are treated as well as they are here by the wonderful caregivers of the Philippines.

For someone in a situation where chronic illness requires constant attendance, the option of living in this country—even if only part-time—is an attractive one.

It’s an option that sure does make sense, considering that for a basic salary of between US$100.00 (outside of Metro Manila) to US$300.00 (within Metro Manila) a month one can have a full-time caregiver or midwife living in at home. If the caregiver, who is often a nursing school graduate, is young, just starting out, and with a bare minimum of experience, the salary would be on the lower side, maybe US$100.00 to US$150.00. A more experienced nurse or licensed midwife would cost about US$300.00- US$400.00 per month in salary. Free room and board (cost of both borne by you; usually housed in a spare room at your home, with access to a dedicated bathroom or “CR” (short for “comfort room”) rather than in the maid’s quarters, and “board” would run about US$20.00 per person per week as a very substantial allowance for food/drink/minor toiletries) is the norm, as is one 24-hour period of “day off” per week.

What Filipinos do for someone who needs around the clock care is to spread the work around. Usually there are several people attending to the disabled person—not just caregivers, but also (depending on need) midwives and/or nurses qualified to insert IV lines, give injections, and the like. Often, there are also “watchers” who can be hired inexpensively, and who have no particular qualifications other than attending to the needs of the patient or providing companionship. Often the watcher is a regular maid on your household staff. The “watchers” will, when needed, call in the pros (caregiver, midwife, nurse) who might be in another room, doing something else, or taking a break.

In any event, caring for someone who is ill is a team effort within the house hold, and the afflicted person is taken care of with respect and one thing for sure is that the caregivers and nurses here give elderly folks dignity and the tender loving care that is needed to enjoy their lives.

(For qualified nurses, midwives, or caregivers, take a look at the ELRAP Index of Professionals. If you have a service or person in this field you would like to recommend, please send the information to ELRAP at elrap101@gmail.com and we will vet your recommendation for inclusion on our Index.)