Tired of dealing with hospice | Caregiver Action Network

I am so tired of dealing with hospice

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I am so tired of dealing with hospice

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?







I couldn't agree with you more!!

We went through hell with Hospice. They were terrible!!

Whether it was coming at the wrong time when Mom was eating each and every time I'd ask them to either come earlier or later tham 5 pm; they came anyway. Mom wouldn't eat if she had company..she always felt it was rude, and so she wouldn't eat when Hospice came. She wouldn't eat later either and Hospice never seemed to get that.

Few of the Hospice workers were nice. Most of them were cold and uncaring. We had one that was so obese (and I have nothing against heavy people, some are the kindest people I know; yet not THIS ONE!!) that she could barely make it up our front steps. While Mom was laying in her hospital bed in our living room, this lady tried to sit down in Mom's rocking chair and nearly broke the arms off because she didn't FIT in it. No apologies, no nothing as she just went on to say that our entire family was in denial of the condition Mom was in.

Not that she checked the records at all. Three weeks earlier Mom had picked up an 18 pack of beer for Dad and ended up with a whole bunch of back pain. She saw her MD and was told she had a fractured vertebrae and it would have to heal by itself with no heavy lifting. A week later Mom's back pain was so bad she had problems breathing and ended up in the ER. They admitted her and two weeks later we found out she had 4th stage cancer. Test after test later, we found she had breast cancer that had metasized to her bones (they were infested with it); along with blood clots in her lungs.

We found all this out in the course of a few weeks..while this horrid Hospice person expected us to have processed it during that amount of time. I found it mean and inconsiderate, yet ALL the Hospice people were like that.

I always expected them to be angels and taking in stride whatever situation the family was in; yet Hospice for us was nothing but a complete nightmare.

The day Mom passed away, I got there in the morning and noticed that she seemed to be going into a coma. Dad called Hospice several times without a phone answer. When he finally DID get an answer, they told him not to take her to the hospital, but that a Hospice volunteer would be there witin the hour. THREE hours later this guy showed up and instead of taking my Dad and the rest of the family aside; he stood there at the foot of Mom's bed and said, "Her fingers are starting to mottle, meaning her organs or shutting down. It'll be a few hours to a few days now.."

Mom's eyes got as big as saucers!!

Slipping into a coma or not..the hearing is the last to go and he had no right to stand in front of Mom and say that.

Dad asked him to kindly leave and we'd handle it ourselves.

God DOES have ways though as a very close friend of ours, along with her husband; stopped by for a visit with no idea that Mom was even sick. She was a retired nurse and while keeping Mom comfortable, helped her transition from this world to the next.

What a Godsend!!


hospice suggestions

I am sorry you both had negative experiences with hospice. May I offer suggestions since this post is so old now! First, always always chose a NONprofit organization in your community. Nonprofits spend more money per patient then for profit companies. Hospice is a philosophy, not a place or thing. Hospice advocates for a natural death and managing symptoms. CMS has all the information on its website such as ratings, tax exempt status, complaints/grievances, etc. Remember you ALWAYS have the right to refuse services such as Social Worker but they will need to speak with the person or caregiver one time after signing up for hospice. 

While patients have the right to refuse services, probe further if you find a particular trend where a majority or all patients are refusing a particular service (e.g., social work, spiritual counseling, volunteers, etc.,) to assure that patients are fully informed of the service they are refusing and that the hospice is fully prepared to provide the service with qualified personnel.

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