Hospice care, trying to understand how it all works. Any advice?

I think you need a new hospice company. Ours is very proactive and always anticipates her needs before I have to ask.

I don't know if you're being needy or not but hospice should be the ones being proactive in getting you what you need from CNA's to hospital beds to wipes and diapers or catheters. They should be asking you often what else you need and then getting it for you.

When we hired hospice for my dad the only time I saw the social worker was when we signed the papers. I don't remember seeing her after that so I don't know what the norm is for that. I'm a nurse and when I work hospice I rarely see the social workers.

Having both professional and personal experience with hospice I know that you should feel comfortable calling them anytime with any questions you may have. They should encourage you to do so. With my dad, he went downhill so quickly that I couldn't keep up with all the people from hospice contacting me, wanting to know if I need this or needed that.

Hospice should cater to you. They should be a comfort to you. They should give you strength. If they're not doing these things I would suggest you find another company but if your mom is declining rapidly you may not have time.

I'm sorry that you're not having the wonderful experience hospice usually provides. However, keep asking them for what you need. I don't think the problem is you, I think it might be them.

Mildred hospice is usually covered by Medicare or private insurance so $4000 a month was rip off territory. You were clearly dealing with a for profit organization. if you are younger and have no insurance there is an income related fee. My experience is that the SW visits about every two weeks or more frequently if needed. There should always be a RN available 24/7 to answer questions or visit if necessary. Durable equipment is provided such as bed, ogygen concentator and so on. The equipment company should set up the equipment and show the caregiver how to use it. A nurse will usually visit if there is expected to be difficulty transfer the patient to the new bed. Other things like diapers may or may not be provided in sufficient amount depending on the financial state of the individual hospice. Medicare if available will continue with supplies. Hospice will monitor all medications and pay for those directly related to the admitting diagnosis/ For example if patient had cancer and diabetes, they will only pay for cancer supplies such as pain meds and whatever is needed to relieve other synptoms such as nausia. they will monitor the diabetes but not pay for medications for that. A CNA is usually provided 2-5 days a week but sometimes 7 days depending on the circumstances. Services provided will vary greatly from hospice to hospice and the size of the organization. Nurses and SW are required to enter details of their visit on the computer and with a heavy patient load they can be more acurate do this during the visit. Personaly I found it intrusive and took paper notes. having a ten patient load is very different from having to visit five a day over a large area can be demanding. In a big city where patients may be clustered over a few streets it is easier. In the end it can be necessary to visit once or more daily which is very demanding. The key for best service is to anticipate needs well ahead and don't wait till 1/2 hour before the pharmacy closes and call demanding medications. As the saying goes "it takes two to tango"

Once the bed is in, then they can show you how it works. You will be getting aides more often. Hospice does not call you, they send the nurse/CNA who reports back to the supervisors. You can always call them if you have a question or need help. You are going to need a friend or relative to talk to, try to find someone who has been through this before, it can be a rocky road and you'll need a steady hand at your side.

My mother also quit eating and started sleeping a lot, so we called hospice for assistance. The nurse came twice a week, an aide came twice a week to bathe her, the social worker came twice and they provided respite care. They also left a lot of reading material that was helpful, depends/diapers, these sponges for wetting/wiping her mouth, and they called in a hospital bed when mom became to weak to walk. They also would come over when we called for help. My mother was on hospice for three weeks before she passed away. I have a large family so we tried to have two of us with her especially the last week or so, mainly so no one would have to be alone when mom passed. My two sisters were there and called hospice, who came over, helped clean mom up and then called the mortuary (which we had decided on a few weeks before). A service came later and picked up the bed.

Please call their number and ask for someone who can answer your questions instead of waiting for someone to come over who may not know the answer. If you are not comfortable with this hospice, ask your doctor, priest... for a recommendation or call around and ask questions. If you haven't already decided on a mortuary now is the time, also have her final clothes picked out (pressed) along with under garments (I bought new as she had lost so much weight). Since mom slept so much, it was a good time to do some preplanning.

Also during Mom's last week, she had some very lucid moments, she'd ask for people by name (which she hadn't done for a couple years) and she seemed more at peace. We had called her priest to administer last rights and contacted extended family and old friends some whom came over to see her. I wish you the best during this difficult time and hope you get the support you need.

Thank you for sharing the wonderful experience your family had during your Moms last days. It is such fantasict news to hear of a family thay pulled together to help Mom and each other. I wish that could be a lesson for all the families on this site who avoid their dying relative and hurl critisism at the one person who cares enough to do the caregiving. Bless you all.

Bellas all I can say is gather that last little bit of strength and call the other hospice. If your first encounter is similar to your current hospice leave well enough alone.What you have experience is not what hospice is all about. it should be the loving caring experience that Kathleen above described. As a retired hospice RN I can not in any way defend the horror you are experiencing.
You decide when to visit or not at all if you choose. i would however suggest going at least once a week to check that he is properly cared for, ie bathed, shaved clean Depends (or whatever you care to call them) ,no smell of stale urine,clean room etc. if you can look at his skin and take pictures of any bedsores or anything in the environment that disturbs you. You don't need to be an RN to see things that are wrong. Stopping drugs is a common practice and just giving those essential for symptom management so do not worry about that as long as he is calm and comfortable. When this is all over and you are rested I urge you to contact your state health department and share with them the what you have told us about this hospice
.After 40 years of abuse I am sure you feel this man should just rot in his own filth but you are a better person than that and feel the need to remain involved. Do not feel guilty about your feelings no one is responsible for the way they feel, We are only responsible for our actions and you are doing the best you know how for your husband. you will find lots of support her from people who will offer genuine love in the purest sense of the word. Another thread to post on would be :The caregiver and disfunctional famillies. The people there are mostly long term caregivers and do not focus on specific issues but ongoing life experience and provide the kind of support you so desperately need at this time. Blessings. come over and introduce yourself you will find a very warm welcome

I worked in geriatric research and one project we worked on was indicator when an older person needs Hospice services. We did this for NIH. As a general rule older people did not have proper end of life care. I was fortunate to know when my mother needed hospice services and I did go through a religious hospice. I believe they where the first hospice in the country. They where wonderful. They brought medication, bed pads. Hospital bed and oxygen. Everything to promote comfort care. When I needed medication it was a phone call away. The nurse came 2-3 time a week and it is true. It takes very special people to work for hospice. CNA came 16 hrs a week. I had also hired a CNA privately. She was wonderful. Little box of medication that had Morphine, Ativan, Haldol which was awful for my mother. Suppositories for nausea and Tylenol and syringe without a needle. You just had to take drops and put it slowly inside there cheeks under their tongue. I never needed Scopolamine Thank God. Being a RN. I didn't agree with the medical director's way of medicating and his nurse didn't either. But, I medicated my mother the way I was taught. The doctor was my only problem. I knew him as a fellow but, never met him through hospice. The hospice nurses knew what I was doing but, never said a word to me. The social worker came once a week and called a couple of times a week. I had hospice for a full 6 months. My mother had a peaceful death. I heard later the doctor was gone and that was a good thing. Even if you are poor and no insurance this hospice is non profit and will take anyone. Many people make donations and my family made big ones. That keeps hospice going and able to take the poor. I have no regrets

I am so glad to see this topic as the ALF where he was, said they had to send him to the hospital because he told them he had had a stroke. Four days later, the neurologist gave him a dz and said there was no treatment but he could order as many tests as I wanted, even a very expensive DNA test. I asked if any of those tests would change his dz and/or the outcome and he said they would not. He recommend palliative care and I agreed, seeing no need to charge Medicare for tests with no solutions. The palliative care person at the hospital called me and said she reviewed the chart and stated he qualified for Hospice and I should go that route. I was clueless that one must be interviewed by another person from the Hospice dept of the hospital. I felt like it was an inquisition by a seriously arrogant person that made me feel like I was trying to do something wrong. I told her it was the doctor and the the palliative care person that got me to this interview…didn't matter, she continued to tell me she would have to share his case with the doctor who is over the Hospice for the hospital and then they would decide if my husband qualified. She must have told me 4-5 times that if he got any better at 90 days they would 'boot him out' (my words) and then they would continue to check his condition every 60-90 days thereafter with the understanding that he had to meet certain criteria to stay in Hospice. I have been at this care taking by myself for 5 years now and my take away is that no one does what they say they will do unless you call and followup with them and document every single phone call. I cannot stand this hospice, the RN that sees my husband is rude and talks down to me (further proving that employees are a reflection of their manager, so I dread meeting the doctor who is over the unit). They were to call me and let me know the status after each RN visit, reassured me they would, met the RN face to face and was assured she would. I have yet to get a call but I now call them. Then…the ALF who have been saints called to tell me that Hospice had taken my husband off all his medications except the ones he has been on for anxiety and the miracle pill that keeps him from acting out (that took me 4 ½ years to get). The pills they took him off are ones that would be needed for quality of life, if he were to live out his remaining 76 years in 'good' health. I was so shocked that they did not tell me they were going to do that that I called them to confirm it and the gave me attitude and threw it all back on me to decide. Gracious, I couldn't decide life/death matters as a lay person but I called the prescribing doctors and they agreed it was ok for him to go off their meds but the process was exhausting emotionally…just another notch in my care giving 'belt' that further sucks the life out of me and my health. My husband has not been a nice man our whole long marriage (40 years), has no friends and his own son wants nothing to do with him. I just have done what needed to be done all these years but now, with his condition growing worse, I am falling apart emotionally with guilt. I always thought, since I have put up with his serious verbal abuse that only has gotten worse since his brain is turning into sludge, that at least, in the end, I would never have any guilt but I do, lots of it. The reason is the only place that would take him is an hour away and I cannot afford to go there on a daily basis but the RN and the SW that I haven't met but has called me twice and some of the ALF staff, all make comments about 'being sure that I must go over every day to be with him'. Not. They know he has no one else but me that will see him and I am just too tired and overwhelmed here at the end of this long journey to give more of myself. Anyway, hospice stinks but I am too tired to go through all the process of firing them and hiring the other one in town. Both sides of my family know he is in hospice and even though they can't stand him, I would think someone would ask how I am doing or even how he is doing but they don't, no one says a word, and they avoid me so they don't feel guilty or don't care about how hard this is on me either I guess.

I have mixed feelings about Hospice. At the time I signed my father up I thought it was the best thing since sliced bread. What I didn't consider was whether the additional help was a Godsend or a hindrance. My father was a little over 2 years out from a catastrophic stroke. He really wasn't improving much but he wasn't digressing either. I battled Medicare for 2 years to make sure he received physical, occupational and emotional support but there was a point where Medicare would no longer pay for the therapies - as far as they were concerned he would never get any better. They recommended hospice. I didn't think about how the mission of hospice would affect his mental health. Even though the additional help made it it easier for me, he took it as a sign that he was never going to get better. When all therapies stopped he went downhill. He was lucid enough to know that hospice was end of life care and and he eventually lost his will to fight. I had great help with Hospice - I can't fault them for doing their job with my Dad. I didn't really understand their need to give him medications that made him hurt (I asked why it was necessary if he was dying anyway - the response was that it was Doctors orders. Never understood why you would give medication that hurts and then have to give pain pills but in our pill happy society who knows). Anyway, my Dad reached a point where I could no longer lift him and assist him. We put him in a nursing home and he died the next day. All I can suggest is to think long and hard about the purpose of hospice and how it affect loved one. I have dealt with the guilt of wondering if I had waited to put him on hospice if he would have gone downhill as fast. As with all things when you care for someone else, you go over things you wish you had/hadn't done and wonder. In the mix you just prayed that you made the best decisions you could. Several months later I put my uncle in hospice and had a totally difference experience - if I based hospice on that one situation I would NEVER put anyone on hospice (of course, depending on need).