My mother is home on hospice after 3 weeks in the hospital, and 3 weeks in rehab with 2 fractures in her lower back. She has been home 3 weeks as of yesterday. The first 2 weeks were very difficult. However the last 3 days she is up and around, with her walker, sitting up in the chair and seems to be improving. She has vascular dementia, and is up and down mood wise. Has anyone else experienced this, will it last? Not getting much support from hospice, been waiting over a week for her pain meds and test results from the endoscope/ biopsy she had. The CNA that comes to bathe her is great, when I text her nurse, it takes hours for him to get back to me always stating he will look into it.
They expect a patient to have approximately one visit a week from an RN for about one hour time, and only several baths from aids. This care is costing 100s of thousands of dollars in Medicare funds and quite honestly it is the Hedge Funds that are making out like bandits. Hospice is their new favorite. Families continue to supple almost all the care. There are a few out there dedicated and still carrying forward what was once a mission. But all too few.
You need to be on the phone with your hospice office and ask to speak to whoever is your teams leader and make sure that your mom is getting the care and medications that she needs in a more timely manner.
I can tell you that my late husband was under hospice care in our home for the last 22 months of his life and I had to stay on top of them ALL the time. I was calling the main office weekly if not sometimes daily. I'm sure it got to the point when they saw my number pop up that they dreaded answering my call, but you know what, I could have cared less as I expected them to give my husband the care he deserved in his final months.
You now have to be your moms advocate and if that means calling them every day...so be it.
Hospice has to be available to you 7 days a week and 24 hours a day. Don't forget that.
If you're not pleased with this hospice agency, fire them and bring another one on board. And yes, you can do that. Your mom deserves better.
not much can be done with heart failure, just meds, as far as nurse, talk to his supervisor.
Just enjoy and spend time with your mom while she is doing better, because it may be just her way of saying her goodbyes and finishing her business.
So sorry, stay strong 🙏🙂↕️
Did you ever hear what her recent ejection fraction was or her BNP level?
Call the hospice company and ask to speak to the person in charge, the supervisor. Let that person know the nurse in charge of your mother's case is constantly "looking into" your questions and concerns, but never getting back to you with answers or MEDS for mom. He either fixes this immediately or you'd like a different nurse assigned to moms case. Immediately. And her meds delivered today.
There are lots of hospice companies out there, so if this one is incompetent, you'll call another. In the meantime, make that call and get her meds.
As far as rallying goes, you'll likely see ups and downs with mom, good days and bad days, as I saw with mine, who had advanced dementia and CHF. When she went downhill, she turned on a dime one day and went from being engaged and interactive to bedbound and comatose, instantly, and passed exactly one week later w/o ever regaining consciousness. Hospice kept her comfortable and not agitated, so her passing was peaceful. She was 95.
Best of luck to you.
It’s definitely easier if your loved one and family are comfortable with end of life care and not automatically pursuing tests/treatments other than for comfort. People go on and off hospice all the time but I agree with you, easier not to of course. I don’t know your situation, but palliative care is also available, which is focused on decreasing doctor’s visits and improving quality of life for those with serious illnesses. It does not offer any hands-on care but a provider will come to the home and can order medications, bloodwork, etc. and the patient can remain on any treatment, including cancer treatments. It’s considered a step before hospice.
I think its the nurse. Yes, the doctor has to order the med and send it to the pharmacy Hospice uses. But the Nurse probably picks it up. A week is too long. And not calling you back is not good. Even if its to say the meds are being held up because they are out of it and waiting for the distributor to send it, the nurse s/be calling u . I would do exactly what Lea said to do. If you get nowhere, tell them ur looking for another Hospice.
All Hopice's should be using Medicare criteria. It depends on the size of the Hospice and how many Nurses and aides they are able to hire to how often you see them. And how long you can have an aide. Some its an hr, just long enough to bathe and dress a client. One member was able to get 4 or 5 hours.