9. Being Disabled and Managing with Caregivers, Medical Supplies, and Hospice Service
Tips to Manage Caregivers, Procurement of Medical Supplies for At-Home Invalid, Hospice Service (courtesy of Margie in Alabang, Metro Manila):
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 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 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 the 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 opened 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. Some of these items may not be needed immediately upon leaving the hospital, but the need may arise once the patient is 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 they are home, they should already have found, interviewed, and hired these people while the patient is still in the hospital. 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. 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 has people who volunteer to visit families to help them through difficult times.
NOTE: For more information on being disabled in the Philippines, please refer to The Freedom Handbook for Living and Retiring in the Philippines, www.funphilippinesretirement.com.