As a caregiver for a family member who requires the service of hospice, you don't know what you don't know. Thus, I think that hospice workers should be proactive with the information they impart to patients and their families, to include educating them. For instance, my mother was growing increasingly weaker, yet I was not taught how to help her get out of a chair safely (for both of us) or how to guide her while walking in case she started to collapse. I was not taught about range of motion exercises to help her muscles stay flexible and keep her walking as long as possible. I was not taught that providing morphine would help her breathe easier.
The nurse took her vitals and chatted with her. That is not what I needed. I needed to know what I didn't know.
The website says that PTs would be provided for hospice patients -- but the hospice company told me otherwise. And I didn't want full PT, I wanted range of motion exercises to keep my mom able to do her activities of daily living as long as possible. So, if a caregiver asks, do you provide PT, don't say NO outright, say what you can do -- but in this case it was absolutely nothing. That is pathetic as other hospices (such as Denver Hospice) will provide this service.
They also made me revoke hospice so I could take her in for a pleural catheter so they wouldn't have to pay for it -- which was strictly to keep her comfortable, which is what hospice is supposed to do. In fact, I got conflicting information about this -- the nurse said I would not have to revoke hospice, but the business office said I had to. Please you all need to be on board with what is permissible.
The nurse also told me mother to rock back and forth on her bottom, since she was sitting so much, to avoid bedsores. I was not taught to prop her up with a pillow on one side and then the other. Thus, my mother developed a painful bedsore.
I only learned what I wasn't taught after my aunt, a retired hospice CNA, came to visit.
When I called to complain, at the time I fired the hospice, I was received coldly.
Please note, the nurse was nice. The case worker/social worker was nice. However, that is not enough.
They only cared for my mother for a bit over a week, but it is a week that I regret.
For some reason this says I'm in CA. I'm in the Denver, CO metro area. read more