Hello,
Has anyone had better or worse experience with non profit vs. for profit hospice providers? I'm thinking of changing providers for my mom.
I am dealing with a very difficult*patient* with a mix of conditions including vascular dementia. Today, for the second time, I asked a specific nurse to please change moms bandages and measure the wounds for me, as I really didn't have time or the steam. (I'm homeschooling my daughter and trying to work).
Anyway, about 2 hours after nurse leaves, I come down from my office. Then mom informs me the nurse told her she left the bandage changes for me. This is also the same nurse who told me she didn't *do* suppositories, but she would happily call it in for me to do!
I think my mother may need more care than what liberty hospice can, or is prepared to provide. I've also discovered they are a for profit, they have 3 nurses to handle THE largest county (and senior population) in the state. I'm thinking this particular nurse may just be lazy, but I can't have a lazy hospice nurse! She claimed mom was just in way too much pain for her to take off the bandages. I think that was an excuse. She has pain meds they could have administered if she was *so* miserable- I thought if the pt. was having uncontrollable pain, they were supposed to Medicare, then stay and make sure pt. is comfortable before leaving? Not run like hell! Right? Also, isn't a doctor supposed to show up from time to time? It's been since December, 2022 she's been in hospice and I haven't seen an MD, FNPC, PA DO, Nothing! Also, aren't the physicians supposed to visit? At least for recert? Only RN 1-2x, CNA 1x and Aide 3x per week. Aide gives bath and leaves, CNA does Bp and leaves. RN asks have you had a BM, checks oxygen, asks if I need supplies, then leaves. They are inside my house MAX 15 minutes. I've timed them.
I've done this caregiver thing for mom alone for 6, almost 7 years alone for the most part, from lung cancer, metastasis to the brain, craniotomies, strokes, brain swelling, arterial bypasses, wound packing etc. I don't get paid, but by grannies, this hospice does and well, and now, it seems that as care is starting to get harder/ more involved, they seem to be flaking out on me. I need help now more than ever. I have to have dependable people.
I am not sure if I will seek out a support group but if I did I would prefer one that wasn't online. I did one when my father passed away in 2010. His end came on faster and I felt bereft. My mother's health has been declining for some time. While I knew the end was approaching there are still difficult moments I have to talk myself through.
I am just offering this as an example of a positive hospice experience. The hospice nurse my mother had was truly wonderful and a great communicator. I hope you find one that brings comfort all around
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Our Hospice sent a nurse to check vitals and renew medications 2xweek and an aide 2xweek to help with bathing or bring supplies. The rest was up to me.
Much may depend on finances as Hospice doesn't cost anything to the client.
And, a person doesn't need to be dying to qualify for Hospice.
Yes, you may certainly request a transfer of hospice care services to another hospice of your choice; you may want to confer with your mother's PCP for a recommendation in your geographical area; or you may choose one yourself after speaking with several others. The current hospice provider must follow through with the transfer of care services to the hospice you designate.
You may also want to consider
" hospice respite" care for your mother ( in patient hospice care for 5 days paid for by hospice which is provided by all hospice providers). You can speak with the current hospice provider about this if you wish. This is a benefit that all hospice services provide, as it is well known that the " family", " Primary caregiver" / family in the home will need a BREAK.
Be sure that you are also utilizing all of the " interdisciplinary services" such as the social worker, chaplain for your care and support also !
Like others have said... there are many choices of hospice and if you are not comfortable with the way your loved one is being cared for, you have every right to change hospice servers as often as it takes until you find the most appropriate. That being said, I believe you also have the right to say you don't want a particular health professional back in your home... if that is not possible a meeting with the administration is in order to be sure the care plan is understood by everyone involved.
yes you can and should change hospice care. They are not all the same. Be sure to tell them WHY when u fire them.
I would file a complaint with Medicare about the neglect by the current hospice.
You can switch providers at any point in time even if there isn’t a problem.
We switched providers for my mom because she was close to a particular nurse. The nurse was very fond of my mother.
The nurse decided to work for another hospice organization and told us that if we wanted to continue having her as mom’s nurse that we could switch to the organization that she was moving to.
We looked into the care of the other hospice organization and decided to switch so that my mom could continue having wonderful care from her nurse.
Don’t hesitate to switch to a different hospice provider. Do research and find a suitable replacement.
Best wishes to you and your family.
Between my two parents, I dealt with three hospice agencies. The first was Vitas, a huge nationwide company, and they were terrible. After I fired them for several of the same issues you're having, I hired a small, local agency that was also for-profit, but family-owned. They were great. So, too, was the for-profit company I used for my mom.
I recommend checking Yelp.com for reviews of hospice agencies near you and also contacting a local nursing home to ask who they use the most. Those are the ways I got the two good companies I hired. My dad's insurance company (Kaiser 🙄) is the one that stuck us with Vitas.
The hospice agency we had for my late husband did have a nurse practitioner come out to the house about every 3-6 months, otherwise it was just the nurse once a week to start and aides twice a week to bathe.
But hospice nurses are supposed to do wound care and if needed they can put a suppository in your moms butt as well. The hospice we used was a non-profit one, but because my husband was under their care for 22 months, I had to stay on top of them constantly, as they weren't used to someone living under their care that long.
You must remember though that even with hospice on board you will still be responsible for 99% of your moms care, as a nurse coming once or twice a week to check vitals and aides to bathe her a few times a week, really isn't much in the big picture of things.
I had to hire an aide to come in the mornings to put my husband on the bedside commode so he could poop. Otherwise I did everything else myself.
I would also recommend that you are present(as in the same room)when any of the hospice workers come to your house. That way you can make sure that things are getting done properly. No more staying upstairs and coming down 2 hours after they leave. If you're there, you'll be able to make sure things are being done that need to be.
Again, whether profit or non-profit, you still have to stay on top of them to make sure moms receiving the best care possible.
I wish you and your mom the very best.
I don't want to expect too much of them either. But I do need help. I'm only 1 person and I'm spread very thin. I just worry about the ulcers because they don't seem to be concerned. I'm doing dakins, wet to dry, medihoney and ABD pads I cut to fit, etc. Things I've bought after research online, things they won't supply. They told me it was too expensive. They did give me gauze and paper tape!
The Doctor does not necessarily have to come see your mom. The doctor relies on the documentation that the Nurse, CNA, Social Worker and the rest of the Hospice Team provides.
For a Nurse to not change a bandage, dress wounds, monitor a pressure sore is in my opinion neglect.
If you are truly unhappy with the care that mom is getting and the respect that you both are getting then I would change Hospice. I think a phone call to the Team Care manager is in order. I would let them know exactly what has happened.
By the way Hospice is also supposed to have Volunteers that can come in and help you, help mom. Typically it would be 1 time a week for a maximum of 3 to 4 hours. The Volunteers can do no "hands on" care. Volunteers are a Medicare requirement so all Hospice will have Volunteers. Ask the Nurse or Social if you would like to have a Volunteer.
I am finding it difficult to get in contact with the case manager (social worker). Our last conversation was well over a month ago, she doesn't visit either. I feel abandoned to be honest. I will absolutely ask about a volunteer. I wonder, as they are for profit if they have volunteers? I will certainly ask! I have days where I'm finding it difficult to put 2 foot in front of the other. I am definitely burned out, I've actually told them this. I have asked them to even help me get her into a care facility. No response, not a no- just nothing. I need people to do what they say they are going to do. I guess because my sibling, the 1 person who should be here won't lift a finger to assist. She just comes in to my house, barks orders about what she feels needs to happen, then leaves. I'm sad too, I feel very trapped. I am trying to keep the peace for my mother, but after she dies, I don't want any contact with my sister or moms extended family. When it's good, they're all around but when it's crunch time (and now that mom is penniless) *crickets*
Thats a situation for another day! An online Love scammer took every dime of moms money. Well, she gave it to him. She gave away, pawned, sold everything, except the house and that's because my grandmother put safeguards in place!