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 home or hospice, care planning is largely handled by the institution itself.
The progressive nature of ALS necessitates periodic reevaluation of the individual's care needs. Any time the individual encounters newfound difficulty performing a certain task, the task should be delegated to a suitable care resource.
Care needs can be fulfilled by:
Each care provider has a different set of tasks that they are willing and able to do, and different availability.
The needs of the individual should be determined, and the tasks can then be distributed amongst those providing care.
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.
| Table: example task allocation across resources | ||
|---|---|---|
| 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 little care and support in the early stages. The need for outside support will rise as the individual loses independence. It may be possible to meet the needs of the individual with only a few hours of assistance per week; in later stages, the individual may require round-the-clock care.
Care resources provided by caregiving companies typically have weekly or biweekly coverage allocations, and are subject to the availability of certain timeslots. The individual with ALS should remain in consistent contact with their primary care physician, so that these organizations can receive credible updates on the individual's care needs and expand coverage accordingly.
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.
If it is desired to avoid the need for family to provide any sort of personal care, it may be more affordable to hire two live-in caregivers as opposed to just one combined with providers paid by the hour to provide relief.
Government or insurance-provided care coverage is not likely to meet the needs of a live-in caregiver's respite requirements. Two live-in caregivers can alternate, providing round-the-clock coverage with one another. They may also both accompany the individual when travelling or doing recreational activities which involve greater difficulty in providing adequate assistance.
Any task that is not immediately obvious should be documented in a notebook that can be consulted by anyone that is providing care. 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 home or the individual.
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.
Diagrams of living areas and the kitchen are probably helpful. Cabinets and drawers could be labelled as an alternative.