Caregiving difficult for people with chemical or
electrical sensitivities (MCS or EHS)

 

 

People with environmental illnesses (MCS or EHS) age just as everybody else, and many will need help in old age. We cover the options, the difficulties using the regular elderhousing, and technologies.

 

Keywords:    aging, caregiving, eldercare, long-term care, nursing home, assisted living, multiple chemical sensitivity, MCS, electromagnetic hypersensitivity

 

 

Many problems can crop up as we age, and our bodies no longer work so well. That can be sore feet, arthritis, osteoporosis, back pains, strokes, Parkinson’s, dementia, end-stage cancer, and more. At some point, most people will have to give up driving their own car.

 

About 70% of Americans who live beyond age 65 will need assistance at some point (Economist 2020).

 

The fundamental problem for elderly people with environmental illness (the EIs) is they are sitting ducks. They can’t so easily remove themselves from trouble like younger people can, and they may not be able to stick up for themselves either. And if they try, they will likely be perceived as a “crazy old lady” (Gibson 2016).

 

They can become dependent on people who simply do not understand, or worse, think they understand and think that old Sally just has a touch of dementia and now believes chemicals are harmful.

 

Not long ago, people smoked anywhere they wished, even inside hospital wards. It was considered a basic right. Today, people think exuding toxic chemical fumes and noxious rays is such a basic right.

 

Many people with a medium or severe environmental illness live in isolation to avoid the chemical and EMF onslaughts from other people. That may no longer be possible in old age.

 

The level of care needed

There are several levels of care, and more skilled people may be needed to help as time passes.

 

In the start, they may just get help with errands, such as shopping. Then home-help for cooking, cleaning, and laundry may be needed. Eventually, there could be a need for help getting dressed, bathed, and with personal hygiene.

 

If the person has dementia, there may also be a need to make sure the person doesn’t wander away and get lost, among many other needs.

 

All sorts of options are available to regular people, such as adult day care, assisted living centers, nursing homes, home health aides, van services, Meals On Wheels, and more. But, they are rarely willing to keep people with an environmental illness (EI) safe.

 

Residential care options

These are places where the elderly live together in some form or another. There are many options, and many prices.

 

Assisted living is where each person has a small apartment and don’t need much daily help. There is a dining hall, and the staff will probably do house cleaning and laundry. There should also be a van service so the residents can go shopping and visit doctors. The staff may organize various social events, such as outings and games.

 

Nursing homes are for people who need a lot more help. They are almost like a hospital, but offers no treatments, has less staff and also much smaller buildings.

 

The problems with these places are many. Living closely with other people is difficult, as many will wear fragrances and wireless devices. Wireless medical monitors are common here.

 

The laundry products will be toxic and the staff often unwilling to use something else for just one person, or use a different product for everybody’s washings.

 

In the United States, these places are commonly sprayed with pesticides that are applied on a schedule, regardless of whether needed or not. How to get away when the exterminator shows up?

 

Many place no longer have landline phones in their rooms, people are expected to use their own cell phones, which is a problem for people with EHS.

 

Most people with EI have food allergies, and these places do not accommodate that. You may get lucky if they offer a vegetarian option at dinner, perhaps even a gluten-free option, but not more individualized ingredients. Organic ingredients, or even just “natural” foods, are rarely available.

 

Some nursing homes save money by being understaffed. The people living there are not bathed as often as they should, and any adult diapers are not changed as soon as needed. The offensive odors are covered up by heavy use of fragrances.

 

Nursing homes frequently deal with patients who “complain too much” by giving them sedating drugs to shut them down (Goodwin 2014).

 

A horror story of a man with EHS who tried to stay in a nursing home is available through the link at the bottom (Brygelson 2014).

 

Adult day care

Adult day care centers come in many forms. They all feed, entertain and look after the elderly. Some will also pick them up with a van and bathe them during the day.

 

But these places are probably not safe for the EI, given the close quarters and people’s use of toxic personal care products and electronics. The food may also not be eatable, due to food allergies and intolerances.

 

Van service

Transportation is offered by many outfits, so the elderly can visit doctors and stores. It is usually with a van that picks up passengers and does a loop through town with several stops along the way.

 

Sharing a van with people who do not have EI can be dicey, with the fragrances, laundry chemicals, medical monitors and other electronics people wear.

 

And once on the van, it is hard to abort the trip if it becomes too unbearable.

 

Home care

This is where a hired person comes to the home every day to do chores. There are different versions, depending on the need and how it is set up.

 

The caregiver may come once a day for a couple of hours, perhaps doing cooking, cleaning, laundry, etc. Or the caregiver may come multiple times a day, such as in the morning to help get out of bed, and in the evening to help get into bed. (We know one person in Europe who was dying from Parkinsons and received five visits a day.)

 

Multiple daily visits are likely only possible using an agency, who manage several home care aides. It won’t be the same person coming each time.

 

The third option is the same caregiver comes and stays all day.

 

A fourth option is that the caregiver moves in and lives in the same house (in a separate room, and with time off). Such an arrangement can be a win-win situation, providing housing and income to someone with EI who is functional enough to be a caregiver.

 

In Europe, home care is usually paid for by the government social services. In America it is much more complicated and depends on your income level and which state you live in.

 

If you hire someone yourself, you’ll have to interview them and have someone in reserve in case of emergencies (no-show, abrupt departure, family emergency, etc). But when you do the hiring you can discuss the need for toning down the toxic/wireless lifestyle, and have some leverage there.

 

If you contract with some sort of home care firm, they will (should) do a more thorough vetting and training of their caregivers than you can probably do.

 

They will also take care of deducting taxes from the paycheck and informing the tax authority (IRS in the USA).

 

Many home care workers are recent immigrants, so their language skills may not be so good. It can be hard to understand what they say, especially for a person whose hearing is not good any more.

 

These jobs are often hard work and poorly paid so there is a high turnover, and people tend to leave with very short notice. Or the worker may have an emergency of some sorts. Then it is the agency’s responsibility to send a replacement.

 

The downsides of using an agency are that you’ll be paying for more overhead, and it will be harder to receive non-toxic/non-electric care. Since agency caregivers do not work directly for you, they will be much less inclined to accommodate your environmental needs. And agencies tend to rotate their caregivers, so you’ll have to train several people.

 

When Dr. Willian Rea’s Environmental Health Center operated in Dallas, it generated a lot of business for a company that sent skilled nurses to people’s homes (to set up IVs, etc). Even here, the staffers refused to go fragrance free, despite many complaints, since the managers did not care.

 

Actual malicious abuse is apparently rare, though there was a case in Wales where a caregiver was investigated by police for assault and hate crimes against a man with severe EHS. The perpetrator even bragged about what he did (Lloyd 2020). In another case, a hired caregiver tried to use her influence over a terminally ill cancer patient to get adopted so she would inherit.

 

Hospice care

Hospice is when the person has little time left to live and no longer receive treatment for the illness. Hospice services include nursing care to administer strong pain killers, and can also include help for bathing and other personal hygiene.

 

Hospice can be either in a residential hospice unit, or in your own home. The amount of care at home depends on where you live. You may still need other help.

 

Unless you are very wealthy, you have no control over the people who show up every day.

 

Caregiving by family

If you live where the social safety net is weak, and you do not have a lot of money, the options for at-home caregiving are limited.

 

Caregiving in America very often lands upon the spouse or daughter, who may also have a full-time job. This is so common that many large employers offer programs to help. It is to their benefit to keep valued employees and help them better juggle what can become two full-time jobs. Such programs can include flexible work schedules, work from home, job sharing, family leave, and much else. The central personnel department should have such information.

 

But for many EIs, there is no family to help. Many never had any children. The illness frequently causes marriages to break and families to become estranged.

 

Even when there is family who is willing to help, they are unlikely to be willing to forgo fragrances, etc.

 

The brutal campaign done in the 1990s to portray MCS as “imagined” still gives people cover to walk away from the sick, or at least not take their physical needs seriously.

 

Assistive technologies

There are a lot of technical aids for the frail, but they are not all benign. A basic wheelchair can be EI-safe, but a motorized chair emits a lot of EMF, including when charging. Some people use a simpel wheelchair, but if arthritis sets in they have to use a motorized chair. Then it is a difficult choice among two poisons. There are no low-EMF motorized chairs (except some specialized ones that run on compressed air).

 

Non-electric wheelchair

 

Nursing homes are experimenting with all sorts of technologies to save staff. One place use beds that monitor the patient’s sleep and vital functions, with the data transmitted wirelessly.

 

Another used special anti-bedsore mattresses that were made of some very toxic foam material that simply couldn’t be outgassed or encapsulated enough.

 

Monitors

A home health agency may require all their clients to wear a wireless monitor on the wrist. The monitor has a panic button, so immediate help can be summoned in case of an emergency (heart attack, fall, etc). It may also keep track of where the person is, which is helpful for people with dementia who tend to wander and get lost.

 

These things tend to frequently transmit wirelessly and should not be worn by someone with EHS. But the agency may force the elderly person to wear it (Brygelson 2014).

 

In a nursing home, other residents are likely to use all sorts of electronic devices, such as oxygen concentrators, CPAP machines, battery chargers, mobile phones, etc.

 

Pharmaceuticals

People with MCS frequently have severe “side effects” from prescription drugs. It can be either from the drug itself or all the additives (“excipients”). It may be necessary to try several brands, or use lower doses than normal. This can be seen as being “too fussy” by doctors and nursing home personnel.

 

American doctors and nursing homes tend to push far too many drugs on the elderly. The American pharmaceutical industry actively promotes overuse of drugs for the elderly, especially to “calm down” anyone who is seen as “difficult” (Goodwin 2014).

 

Robot assistants

A robot assistant may offer non-toxic help in the home (after some out-gassing). They tend to be made of steel and plastic, and the electric motors don’t run for a long time, so they should not get so hot they stink. So, chemically, they may work fine.

 

But robots are probably not usable for people with severe EHS, as they are electronic devices and they use Wi-Fi to communicate. They are also battery powered and need to be charged. All of this will generate a lot of EMF.

 

Robotic assistants that can really replace human helpers are still a long way off, and they will be very expensive.

 

A hopeful story about a Silicon Valley executive who suffered a stroke and needed full-time care, features an experimental robot. It can do a lot of things, but he still needs full-time care from both his wife and a hired caregiver (Ackerman 2023).

 

Not easy

In what is apparently the only study of people with EI and how they think about aging, one person stated (Gibson 2016):

 

Here’s my prayers – I hope I die before I have to buy a new car, have dental work, get let loose in the medical field or have to go to a nursing home. And I don’t say that in a sad or depressed way. I just think it’s so much easier for people with MCS to die at home.

 

Invisible

We tried to find anything about these problems on two of the largest caregiver support websites (www.caregiver.com and www.caregiveraction.com). We found nothing at all. These problems are “invisible.”

 

Safe homes for the EI

There are already assisted living and nursing homes that cater to specific groups. In America there are Jewish homes, that serve kosher food and cater to that culture. In the recent past there were even homes for aging immigrants from specific cultures.

 

In Norway, the Netherlands and Australia, they have housing developments specifically designed for people with dementia (where they can wander, but not get lost).

 

In Copenhagen, they have a home for the aging LGBT+ community.

 

In Scottsdale, Arizona, there is a holistic nursing home, which serves organic meals and is fragrance free, though not wireless free.

 

The idea of homes for people with environmental illnesses has floated around for decades, but so far the Scottsdale nursing home is the closest. Whether it is possible to mix MCS-sufferers with the EHS-sufferers is questionable. Just because people get sick doesn’t mean they become more willing to accommodate others, but then what to do with the many who have both MCS and EHS?

 

Staffing will be a challenge, though the EI doctors in America all got their staffs to live fragrance free and leave their wireless devices in their cars when they came to work. It can be done, if people’s paycheck depends on it, and an authority figure tells them it is necessary.

 

The cost is a major issue, as people who have been on disability for decades often do not have much savings.

 

Perhaps it would work to place an EI home in a middle-income country, where staffing is much cheaper. Then pay the staff above-normal salaries in return for their compliance, and to limit turnover. It should be a country where there is good health care and the local culture is not steeped in cigarettes and fragrances.

 

That rules out most of the world, especially Latin America, but South-east Asia holds promise. Perhaps some coastal parts of Thailand or Malaysia, where the ocean breeze can moderate the heat, humidity, mold, and air pollution. That part of the world already caters to “medical travelers” who come for surgery that cost a fraction of the prices in the United States.

 

 

References

Ackerman, Evan. A robot for humanity, IEEE Spectrum, November 2023.

 

Brygelson, Lisa. Elderly man with EHS abused by hospital and nursing home, www.eiwellspring.org, 2014.

 

Economist. No place like home, The Economist, July 25, 2020.

 

Gibson, Pamela, Mary Cate Horan, and Jacqueline Billy. Women growing older with environmental sensitivities: a grounded theory model of meeting one’s needs, Health Care for Women International, 2016.

 

Goodwin, Jan. Antipsychotics in nursing homes, AARP Bulletin, July – August 2014.

 

Lloyd, Peter. Mobile phone assault: the acceptable face of torture in the 21st century, ES-UK Newsletter, Winter 2020-2021.

 

Walker, Keddie. Caregiving, Ecologic News, Winter 2019. (Published by the MCS support group HEAL of Southern Arizona).

 

 

More information

The book Alzheimers and Dementia for Dummies has extensive coverage of eldercare in general, not just for dementia..

 

More articles about eldercare on www.eiwellspring.org/healthcare.html.

 

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