home care

[vcaruso]

does anyone have around the clock care at home? i was told by someone that does not have als, but whose child is vent dependent that the facility he left from made all the arrangements for the transition home. including nursing staff 2 shifts who handle all the ordering of supplys to bathing, etc. my relative who was diagnosed in march 2009, with bulbar onset, requires 24/7 attention do to suctioning of both oral sercretions and trach. she is currently at a rehab facility, but they see no reason she should not go home. she is 37 years old, 2 young children and a husband who i know cannot keep up this pace. the progression of her symptoms happened so quickly we've had no time to prepare let alone digest the situation. what is anyone else doing? she is 100% vent dependent has movement is one leg and we lip read to the best of our ability. which is frustrating for all of us. is it wrong to consider a long term facility to care for her, with frequent visits home?

 

[Al]

Have you contacted ALSA or MDA? They have people that can advise you.

AL.

 

[tdamess]

so sorry it a hard thing to go thru , my thoughts are with you and every family has to handel it the way that best suits thier family so , listen to al he is sending you to the right place best of luck