Caring for the Chronically Ill Family Member in a Disaster, by Rebecca H.

Thursday, Dec 13, 2012

Caring for a chronically ill family member takes an emotional and physical toll on the caregiver. Compound this in a time of disaster, civil unrest, social and economic collapse and you might feel there is no chance for survival. I cannot say that. There might be insurmountable odds against a seriously ill family member living in harsh conditions for very long, but it is my goal as a caregiver to ensure I have the tools and knowledge to keep that family member as comfortable; physically, emotionally and spiritually as I can.

As the wife of a recent kidney transplant recipient, I am familiar with all aspects of his care, before transplant while he was on dialysis and now, with a severe regimen of anti- rejection drugs. I have researched and found very little information on varied “prepping” sites as to what to do for those family members that may require medical devices that require electricity, medications that prolong life, such as anti-rejection, anti- viral, chemo, asthma to name a few. These medications are usually very expensive, and generics are few. No doctor will allow you to stockpile these. I have tried. You may only be able to obtain a 3 month supply at best. So you might have a generator to run the dialysis machine, but when the supply chain that brings the boxes of dialysis fluid breaks down, you won’t be able to make it in your kitchen. What do you do when the medications run out, or the nebulizer canisters stop coming in the mail?

How do you prepare yourself and your loved one for the inevitable outcome? Depending on the condition your loved one suffers from, I surmise most people will try to stretch out certain medications in a disaster scenario, such as blood pressure meds, if the ill family member is not exerting themselves. My plan for my husband is to keep him comfortable and hydrated, occupied with low impact activities to keep his blood pressure down when we run out of his meds. There is not much I can do for his anti-rejection drugs other than halve the dose so they last longer. The key is to keep normalcy and good attitude combined with communication. Speaking with your ill loved one and making the care plan together. They might not want to alter the medication schedule, and may just want to abandon it all together. They might not want to be a burden, or might want to face the inevitable head on. They might want to survive at all cost. It is crucial to your survival that you face all outcomes and discuss these with your loved one in detail. Having a Medical Power of Attorney, with a Healthcare Directive in place makes sure that your decisions, directives, and care plan will be followed if the loved one is cared for outside the home in this type of scenario.

It is beyond the scope of many people’s thoughts of having to watch a family member deteriorate in the absence of medical care or medications. In a SHTF scenario, many will be experiencing the same anguish. Many will lose family members quickly, some will watch over a protracted time frame, a loved one wasting away. What you can do in that time frame, is mentally prepare yourself and your loved one for a dignified and comfortable passing.

What my husband and I have decided on, is to allow the meds to run out, treat the symptoms of kidney failure as they come, and live as normally as we can, given the variables that we are faced with. I have come to terms as has he that he will not survive without the drugs. I have always been the stronger, optimistic one, he is my beloved pessimist. Knowing each other’s strengths and weaknesses helps you realistically view your action plan and implement it together. I have stocked up on several of his favorite foods, a warm and inviting bedroom with books and a view of our yard and chickens, a photo album, and will surround him with the best attitude I can.

“But who cares for the caregiver?” That is a crucial point. You may be blessed with a large family that can offer help and respite. You may find yourself in a small group banded together to increase your chances of survival, or you may find yourselves isolated with the ill family member. It is your responsibility to maintain the wishes and directives of the ill person to the rest of the group or family. It is up to you as the caregiver to eat, sleep, hydrate, and keep healthy before you can even begin to take care of a chronically ill family member on a daily basis let alone in a disaster. The stresses are numerous, as is the often precarious mental state you can find yourself in if you allow yourself to be run ragged. I always make a feasible list of the daily tasks I need to accomplish. In a SHTF scenario, daily life will most likely end up with an abbreviated list. Food, shelter, water, protection. Daily life in a SHTF world will make that small list 100% harder. Imagine having to start a fire to bake bread, removing waste from your living area, skinning game, chopping wood, pumping water, and bathing your ill family member, all before a cup of coffee in the morning. Imagine having to guard your perimeter from looters, day and night, and making sure your ill loved one eats, or has help with the most basic tasks. I would have to do all of this myself, as my husband is also severely sight impaired.  I am prepared to ask, or barter for help when I need it. I would not be serving myself or my husband if I tried to do everything myself.

I have a vast supply of medical and first aid items from the years of dialysis that I intend to donate or barter should the occasion arise. I also have skills in herbal remedies. My skill set as a caregiver insures my worth in a group. What skill sets do you have that may help you survive in such a scenario? If you haven’t thought about what you’d need to do in this type of situation, or might end up being the one to care for a chronically ill person, it would be of great benefit to take a CPR and First Aid class, or invest in an EMT used textbook. Learn as much as you can about the condition your loved one has, so you are better equipped to handle it. Read about hospice, and yes, read about dying. Elizabeth Kubler-Ross wrote a wonderful book titled On Death and Dying. I suggest it to anyone caring for the chronically ill. Having some foundation to act on will make the journey you and your loved one face together less of a surprise. Ask your health provider about your condition, in the instance of a disaster much like Hurricane Sandy, what will happen. What is the worst case scenario? What kind of symptoms can I expect as my condition worsens? What can I discuss with my spouse or family to make it easier to care for me? Of course, you will be reassured that nothing like that will happen, but at the risk of sounding like a tin foil hat-wearing Doomsday Prepper, a few innocent questions soon after an extremely damaging natural disaster would not seem that out of place.

I cannot place enough emphasis on having a positive mental outlook in the face of illness. In a SHTF world things will look bleak, and you might not want to go on. As a chronically ill person, you might not want to be a burden. You might even think about taking your own life in this type of situation, fearful of succumbing to your condition. This is a time to talk to your family or spouse, or group. Everyone deserves to enter and depart this world with dignity. It is up to the individual, family, spouse and the faith they hold to sustain them in survival. I have no doubt that somewhere there will be drugs that can be bartered or stockpiled that in a large enough dose could end a loved one’s suffering. Although I don’t condone that as a solution, I know that that could and would happen possibly on a larger scale than would be spoken about. I don’t think anyone who has not experienced a loved one’s death can truly say what they would do. It is a deep and personal choice that must be made with compassion, communication and love. It is our duty as families, spouses, communities to make sure that the chronically ill in our homes and neighborhoods are cared for to the best of our abilities, and offered safe and comfortable departures when they pass.

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