Most every CALS shares your experience. It's okay to vent, throw things, break things, etc. Just try not to do it in front of your PALS. I do not believe it is humanly possible for one person to care for a PALS after a certain stage. It requires a team, and it takes work to build and manage that team, but it must be done.
I seem to recall in an earlier post you said you have Medicare. You should check out
http://www.medicareadvocacy.org/wp-content/uploads/2016/07/ALS-MAP-Webinar-2.pdf relating to Medicare home health benefit for ALS patients. Basically, it says there is a federal statute that places a 35 hour per week limit on skilled nursing and home health aide care, and each daily visit must be less than 8 hours. (Not enough, IMHO, but maybe more than you are getting right now.) Here is the text from the key slide:
How Much and How Long
Can Care Be Covered?
- Up to 28 to 35 hours per week combined of nursing and home health aide services (Medicare Act: 42 USC 1395x(m))
- In practice, difficult to find an agency to provide
- And PT, ST, OT as medically necessary and reasonable
- Note: OT can qualify as the skilled service to continue coverage, but not to trigger it
- No duration of time limit. Coverage is available so long as skilled care required. Medicare Benefit Policy Manual, Chap. 7, §40.1.1
Here is the text of 42 USC 1395x(m):
Home health services The term “home health services” means the following items and services furnished to an individual, who is under the care of a physician, by a home health agency or by others under arrangements with them made by such agency, under a plan (for furnishing such items and services to such individual) established and periodically reviewed by a physician, which items and services are, except as provided in paragraph (7), provided on a visiting basis in a place of residence used as such individual’s home—
(1) part-time or intermittent nursing care provided by or under the supervision of a registered professional nurse;
(2) physical or occupational therapy or speech-language pathology services;
(3) medical social services under the direction of a physician;
(4) to the extent permitted in regulations, part-time or intermittent services of a home health aide who has successfully completed a training program approved by the Secretary;
(5) medical supplies (including catheters, catheter supplies, ostomy bags, and supplies related to ostomy care, and a covered osteoporosis drug (as defined in subsection (kk) of this section), but excluding other drugs and biologicals) and durable medical equipment while under such a plan;
(6) in the case of a home health agency which is affiliated or under common control with a hospital, medical services provided by an intern or resident-in-training of such hospital, under a teaching program of such hospital approved as provided in the last sentence of subsection (b) of this section; and
(7) any of the foregoing items and services which are provided on an outpatient basis, under arrangements made by the home health agency, at a hospital or skilled nursing facility, or at a rehabilitation center which meets such standards as may be prescribed in regulations, and—
(A) the furnishing of which involves the use of equipment of such a nature that the items and services cannot readily be made available to the individual in such place of residence, or
(B) which are furnished at such facility while he is there to receive any such item or service described in clause (A), but not including transportation of the individual in connection with any such item or service;
excluding, however, any item or service if it would not be included under subsection (b) of this section if furnished to an inpatient of a hospital. For purposes of paragraphs (1) and (4), the term “part-time or intermittent services” means skilled nursing and home health aide services furnished any number of days per week as long as they are furnished (combined) less than 8 hours each day and 28 or fewer hours each week (or, subject to review on a case-by-case basis as to the need for care, less than 8 hours each day and 35 or fewer hours per week). For purposes of sections 1395f(a)(2)(C) and 1395n(a)(2)(A) of this title, “intermittent” means skilled nursing care that is either provided or needed on fewer than 7 days each week, or less than 8 hours of each day for periods of 21 days or less (with extensions in exceptional circumstances when the need for additional care is finite and predictable).
