YBeen going thru hospice for past 3 years; first with mom who passed away 11/15, & now dad. Worked with 2 different hospices. Mom's nurse was great and really did appreciate her. Dad's is just typical; has no unique insights & does not anticipate problems. I feel I do most of the case direction for dad.
I've learned a lot in past 3 years and more and more coming not to like what I have learned about hospice and how poorly it functions in certain ways. Mom was more acute than dad, but both bedridden & requiring total care.
The social worker visit is a monthly requirement which just wastes my time; same with their grief counselor and follow-up. They just repeatively offer solutions we don't qualify for (don't they know that by now) economically and the one thing we do qualify for (volunteers) they have consistently fallen thru on providing from day one despite promises.
I am just so tired about all the time I spend waiting for these professionals to show up and do the customary head-nod every week and particularly tired of dealing with their bath CNA's who work sloppy and turn-over quick. I think they should be barred from using no-rinse soap on clients. I mandate soap-and-water, but more often than not, they somehow manage to do a full-bath without leaving more than a slightly damp towel. Can't they credit one with the smarts to know when they cut corners and use wipes instead for a bath? Or, to be able to smell when they don't do the hair wash you direct them to do, or that one can still see the dry skin on the feet or the dirty hand nails when those are not washed either?? You complain a little and after awhile the nurses and social worker just shrug it off. I do a full wash (twice) far more competently and thoroughly than any CNA provided so far, and it is more trouble than they are worth to have to go behind these CNA's and redo their work. And, don't even get me started about the "equipment rental" and the routine shortages of hospice diapers, wipes, and bed pad supplies. While eligible for these, they are so unreliable I buy better and stock my own back-up so as to not be caught short. Hospice makes big bucks off my dad; billing medicare close to 5K a month for the so-called services it provides, but managing those hospices services with some grace is the biggest on-going source of stress and exhaustion to me. One visit per month and supplies is all I really need for the duration, and I really wish that the hospice formula made some provision for situations such as ours; where the caregiver is knowledgable and competent and the patient is slowly deteriorating but not so acute. I know I should probably feel more grateful, but I just don't and wonder if others feel similarly?