Care planning refers to the delegation of tasks to supportive people as the individual with ALS loses the ability to perform those tasks themselves. Generally speaking, these considerations are made in a context where the individual is still living at their own home or with family. In a care facility or hospice, care planning is largely handled by the institution itself.
Care needs will continue to evolve as ALS progresses.
Assessing the needs of an individual with a disability is itself a task that may need to be delegated, depending on the type and scale of the disability in question.
An individual can likely assess their own level of independence for something straightforward, such as using an electronic device or opening a jar.
A qualified physician should assess needs that are more complex or of a medical nature. Changes in need should be communicated to all individuals and organizations involved in providing care.
Care needs can be fulfilled by:
The resource performing a given task must be able and qualified to perform it. Only a physician or qualified nurse should administer medications. On the other hand, anyone is qualified to change the channel on a TV.
It is desirable to place the largest possible burden on care providers that are external to the family, especially those provided by government or insurance providers. The less work that family and friends have to do, the easier it is to preserve those relationships.
Private care billed by the hour is expensive and should be minimized.
| Task | Resource | Notes |
|---|---|---|
| Breakfast preparation | UAP - one hour morning visit, government-funded | |
| Nail cutting | Family member | Most UAPs are not able to do this task, not worth paying for a private service either |
| Lunch preparation | Meal delivery service | Something nice for the individual |
| Wound care | Nurse | Not suitable for family or UAPs |
| Cleaning the garage | Family member | Personal task; not covered by government or insurance |
An individual with ALS may need only a few hours of assistance per week in the early stages of the disease; as the disease progresses, they may require 24-hour care.
Care resources provided by caregiving companies typically have weekly or biweekly coverage allocations, and are subject to the availability of certain timeslots.
When the individual with ALS requires round-the-clock care, it is preferable to have longer visits from caregiving companies, as opposed to more frequent short visits. Longer visits allow family or live-in caregivers to better rest and recover.
Caregiving companies are often less able to provide reliable coverage on weekends compared to weekdays, especially on short notice. The staff of these companies place the same value on weekends as anyone else in the wider population would.
Certain times of day, such as common waking and sleeping times are harder to get from caregiving companies since there is higher demand from other clients.
Tasks should be kept as straightforward as possible, so that the people performing them can do so independently. Diagrams of living areas and the kitchen are probably helpful. Cabinets and drawers could be labeled.
Any task that is not straightforward should be documented in a notebook. This is especially important in circumstances where the individual receiving the care is not able to clearly communicate their needs and how to satisfy them. It also saves time when working with a new provider that is not familiar with the individual or the home.
A simple method for determining what to add to a task notebook is to give no verbal instruction on how to perform a given task, and instead require that the provider consult the notebook as-is. Each time they encounter difficulty, or have a question, the notebook should be updated with that information. The notebook will eventually become complete using this method.