What People Need

This one is fairly straightforward. As mobility becomes impaired transportation needs change. If a person uses an electric wheelchair or scooter there will need to be a mount on the back of the car for that, or a van with a lift or ramp and hold downs for the wheelchair, and possibly accessory power for medical equipment. In Jason’s case, since while in transit he needs suctioning and other care, the van needed a raised roof so the caregiver could stand to provide the care. Some people may have the ability to drive a car or van themselves and require modifications for that. Costs of modifying and/or purchasing necessary vehicles can run between $2k to $60k. Maintenance of lifts is another expense. Your help will keep people out in the world for work, social, and medical reasons, and not become invisible.

Ramps, wheelchair accessibility indoors and out, backup power, adequate heating and cooling – all these features are of vital importance to a person/family struggling with conditions like ALS. However, in our experience, of even greater importance is the layout of the dwelling and its ability to address and accommodate the lives and needs of caregivers as well as the cared for. We see ADUs or similar features or modifications as essential to the long-term sustainability of the care effort. We want people to recognize early that to turn a short-term prognosis around one must create a long-term model for care to reduce the stress that contributes to deterioration. The model needs to reflect that caregivers have lives and families and that proximity allows long term connection to the cared for person without neglect of the caregivers’ families. So, we encourage, and hope to support financially, the attainment/creation of homes with ADUs, duplexes, triplexes, etc – mini-communities where people can support each other and thrive together. The earlier in the process this goal is embraced, the easier, or at least more possible, the future becomes. The cost of attaining this goal varies geographically, according to the type of structure being purchased or modified, the type of modification, construction costs, etc… Costs can be in the 100ks and far beyond, but the benefits to the greater community of the existence of such dwellings will be felt indefinitely.

It’s impossible to overstate the importance and rarity of effective and reliable care of this caliber. Without it a person’s stress level will remain at unhealthy highs with cortisol and other stress hormones accelerating deterioration. It is also impossible to overstate the stress that this scenario puts on the caregivers themselves. It is not enough to offer respite care as a solution. For people with impaired communication respite care may be worse than useless – it may be dangerous, unless the respite provider has a very high familiarity with the person, their care, and their communication. What is needed is a team of adequate size and stability so that no one is overly burdened or tempted to leave the sinking ship to save their own health, and the recognition that all team members – even family caregivers – must be compensated adequately to prevent their involvement resulting in poverty, or working elsewhere to make a living while struggling to provide care, resulting in exhaustion.  Your support will enable people to achieve care team stability, letting them put their energy on the things that give their lives meaning: family, friends, work, creativity.

So many things contribute to the feeling that things will be okay when faced with a catastrophic diagnosis or condition, such as ALS. It’s a different recipe for each person or family. Common elements include

–  adequate financial resources

–  an adequately large, committed, and capable care team, with ability to fill in gaps that arise suddenly.

–  a dwelling that maximizes both interaction and privacy

– belief or involvement in something that gives a sense of meaning or purpose to life, even when living with limitation; i.e. the sense that one’s life still matters and is “worth the trouble.”

With your support we can give more people freedom from worry and fear, and the energy to pursue their true purpose, as we all should do in our time on earth – however long.

When a condition or diagnosis causes a person to lose agency, or the ability to interact with the world and make and implement their own decisions, the dangerous state of helplessness may become self-perpetuating. To thrive, a person needs autonomy. This need for autonomy must never lead to a state of isolation or forced “independence.”  All people need self-direction as well as a supportive and inclusive community. Maintaining hope requires having the freedom to try things: diet, unconventional or non-western therapeutic methods – especially when no conventional treatments are available. Hope and positive expectations change the hormonal balance in the body and have a protective effect against the disease process. If a person’s home-care is provided by a licensed home health agency there can be a marked reduction in the person’s ability to make their own treatment decisions. This results from the agency’s need to maintain bureaucratic compliance by documenting everything a person takes, right down to simple things like fiber and vitamin C, and to have a doctor’s order for every one of them. The documentation and communication with doctors required to stay in compliance can eat dangerously into the time for hands-on care the nurse can provide. To have the option of informal, non-licensed care is important for many people who value a higher level of autonomy related to their care. Higher overall quality of care can result from freedom from the agency model of caregiving because more decisions are in the “patient’s” hands and because time will not be spent (one could argue “wasted”) on documentation that serves primarily auditors.

With your help more people can have the freedom of informal care, which more often provides a lower rate of caregiver turnover as well.

Wouldn’t it be wonderful if all people had to do when faced with ALS or a similar health crisis was take care of themselves and their families? What if they didn’t have to do the draining, demoralizing, discouraging work of recruiting caregivers, coordinating care schedules, researching equipment purchases, home modifications (contractors, estimates, permits, etc…), fighting insurers and social service bureaucracies, etc.

With enough help from you and others we can create an advocacy/support system to take some of these burdens off overloaded families.

Many people with catastrophic illnesses or disabilities don’t have health insurance or resources to pay for needed equipment such as ventilators (and the needed supplies), tube feeding equipment (and the expensive food to go with it) custom wheelchairs, hoists, stairlifts, platform lifts, backup generators, portable backup power, communication equipment, emergency alert systems, call bell systems…. We intend to make sure these gaps are filled – with your help.

As an alternative to the concept of respite care, and to eliminate dangerous gaps in care, we envision a system of back-up on call care by caregivers well trained in the specific care needs and unique communication methods of each care recipient. This would give the care recipient and their regular team of care-givers freedom from the constant anxiety of call-offs by caregivers, requiring quick change in plans or dangerous reduction in quality of care.

With your support we can make this dream a reality, giving many more care teams sustainability long- term.

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