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My husband entered hospice care yesterday. He's not in danger of dying soon though. He has congestive heart failure and possibly the beginning of renal disease. At the end of the intake interview I asked what they had for caregivers. I am amazed at the answer. They provide all kinds of grief counseling after the patient dies, but nothing before. I need help now to get through this. I am a reluctant caregiver, and need support with what is happening NOW. By the time he dies, I think much of my grief will be over. Anyone else experiencing this? The hospice nurse comes once a week. I can't imagine she will be of any help to me. They provide massage therapy (not for the caregiver) and volunteer "friendly" visits. Just don't get your hopes up when hospice is suggested.

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You are so correct.
I was an RN in the late 70s when we FINALLY got the godsend of hospice from across the pond.
It is a shadow of what it was.
It is now the honey of hedge funds and corporations who rake in huge amounts from Medicare to provide almost nothing.
Used to be individually tailored to patient and family involved and is now rote:
1. RN visit once a week and other than BP she sits a few minutes and chats
2. Two to three bedbaths per week by an aid
3. Hospital bed or commode
4. Call from clergy "do you want us".
5. Call from Social Worker "do you want us" and if you do he or she won't know much
6. Medications
7. Recommendation of well prices funeral or cremation
8. Numbers to call for grief counseling.

They used to provide so much hands on help. Now there is nothing.
Very sad for me to see and say as an old retired RN.
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Dillsburglady Sep 28, 2024
Thanks for your answer.
My husband is mostly interested in pain management, He is in no great pain yet but they already prescribed morphine. Maybe I should take it (just kidding). I have to deal with the poop, the swollen legs, the transfer assistance, and the need for everything to be done his way. I am beyond depressed , and yes, I am on medication.(have been for 30 years).
I was expecting hands on care, and perhaps a little consideration for how I feel. I see there will be none of that. They do stress it will cost us nothing (Medicare will pay) but it should cost nothing if you get nothing.
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I have been using hospice for about a month now and I am very pleased about the care my husband receives (3xweek bathing, nurse visit weekly, more if we need it). HOWEVER there is no support for the caretakers…when my Dad was under hospice many years ago they had people that would come and stay with him and they insisted my Mom get out of the house at least 3-4 hours twice a week….they don’t do that any longer. I was told they might have a volunteer willing to come sit with him for an hour a week but so far they haven’t found anyone that lives in our area. I have been doing this by myself for over a year now and to say I am at my wits end doesn’t begin to describe how I feel, physically, emotionally and mentally. When all of this started a couple of years ago I hired someone to come in and help and it was great…however, after going through our retirement fund, my 401k and most of the savings I had to let her go and am now doing it alone. I have been fighting with VA since last Dec but I keep hitting road blocks but I am not giving up! He deserves the help! I didn’t mean to vent but I feel your pain. Hang in there, we will survive this.
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Dillsburglady Sep 28, 2024
Instead of someone coming to talk to my husband, I wish someone would come to talk to me - out of earshot of him.
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I'm sorry you and your husband are going through this. We, as a society, have to do better.
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I understand what you’re saying. When my MIL started receiving hospice care she was in a group care home and I was surprised what little hospice offered, on paper. However by the time MIL died we were beyond grateful for them as they did things for her that no others on her care team could do, the most important being managing her pain, both mental and physical, seeing and addressing small health issues before they became big ones and giving MIL a few minutes of understanding, one-on-one, professional attention each week

MIL looked forward to those weekly nurse visits and one of the siblings tried to be there on those days to learn from her compassionate approach and pick up care instructions. Even when the hospice nurse was not visiting, her phone number was made available and she addressed any concerns the family had promptly. Although they had already been grieving the loss of their mother for years before she died, her death was still an intense, frightening experience and the hospice nurse was a support, and even a bit of a referee, for the family. After MILs death, hospice help was priceless.

As for you, I think you will find this forum and the articles and discussions incredibly valuable. I certainly have. Most communities have in-person support groups that meet monthly. You can find them online or by asking your husband’s doctor or your hospital care coordinator. If you are a member of a church you will find a lot of caregiver support there. You’ll soon discover which of your friends are willing to listen and help or just pick you up for a coffee date if you are able to get away. I know you are overwhelmed but you are not alone.
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They don't take over 24 hr care. They are supplemental. And I, for one, am very glad that I got that extra bit of assistance. And since they specialize in End of Life, I could ask and understand the stages with my Mom's death stages.

I had caregivers come in twice a week to assist with bathing. A counselor and pastor available anytime. And nurses coming out a couple of times a week. There were volunteers who came and sat with my Mom, so I could get a little break, but that was only once or twice a month. And when Mom passed, it was a simple system with no fuss and the funeral home had taken her away within an hour of her death. Unlike my Dad who refused hospice and died at home from emphysema which required calling emergency, having police and EMTs out, and then waiting for hours for the coroner to OK the removal of his body.

I would still have to pay, using Mom's funds, for caregivers, if I wanted or needed more assistance. I had been paying for years before. So, there was no real change there.
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Reply to Cashew
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Hospice is supposed to provide a grief counselor, ie a social worker or chaplain, at least monthly for the patient AND immediate family until death, at which point the service extends 13 more months for the family.
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Reply to PeggySue2020
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Dillsburglady Sep 28, 2024
How do I get this counseling?
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I found the social worker helpful to talk to.

They called all the time to have visits to the house.
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Welcome to the world of hospice. It honestly doesn't do much when your loved one is under their in home hospice.
My late husband was under hospice care in our home for the last 22 months of his life and they only had a nurse to come once week to start, aides to come twice a week, and I had access to their chaplain, and social worker, which I didn't take advantage of.
The nurse only took my husbands vitals and measured his upper arm each time she came and then was out the door.
Of course they supplied all needed equipment, supplies and medications, but was shocked when I first saw what my husbands insurance was being billed each month for ME to take care of him. It started at around $6500 a month and near the end it was up to over $15,000.
I'm not sure how they are able to get away with it when 99% still falls on the one caring for the hospice patient, but get away with it they do.
The only time you'll get excellent help is if your husband ever has to go to the hospice home. The facilities are always beautiful, peaceful and the care top notch.
I'm sure there was a time that hospice care was much better, but now it's all about doing the least amount but charging an arm and a leg. A racket for sure.
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Reply to funkygrandma59
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I would request a visit from the hospice social worker and ask about community resources for yourself. They should be able to help you but if not, contact your local council on aging. Also, do not hesitate to call hospice for any medical/nursing questions. They should have a nurse on call 24/7. Knowing that you don’t have to make medical decisions without guidance can be a support in itself.
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Dillsburglady Sep 28, 2024
The hospice social worker is the person I asked about pre-death help. She looked at me like I had three heads. This forum is more help than she was. Very disappointed.
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Hospice was emotionally helpful to me, always called me back anytime I had a concern, and good about talking to me about whatever I needed to discuss. All agencies are not the same. Request a social worker call or visit you and state your needs. You’re also free to change agencies if you wish
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Reply to Daughterof1930
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She was here on the intake visit. Not helpful.
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Reply to Dillsburglady
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My dad was in home hospice from January - May 2024 and only in a hospice facility the last 3 or so days of his life. I was very glad we did both. No more taking him to Dr appointments. People to call with any question or issue that came up. And the basics for free.

I think what the hospice groups can provide is dictated by Medicare. Like funkygrandma details below, there was an intake interview with me, my mom, my dad, the nursing supervisor, and the social worker. A nurse came once per week plus a few extra times for emergencies, and an aide would come twice per week supposedly to bathe him, though he fought against that. The aide would also do chores for my mom like laundry or the dishes.

They provided all the equipment he needed though he refused to use most of it. They also provided a large assortment of medicines to be used in urgent situations on top of his regular prescriptions. My mom and I also had access to the social worker and the chaplain. The agency we used also had other aides who we had to pay, who would watch him during the day, night, or weekend. Arranged by the same agency but not covered by the free hospice sevices.

I would suggest individual therapy and also hospice facility care may be better in your situation. There he would have a larger staff 24/7 and you should be able to visit him whenever you want, as long or short as you want. My mom was totally opposed to this until there was no other way. But she really could not handle his care herself the last several months.

best wishes!
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Reply to Suzy23
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Caregiver support in the form of a chaplain or social worker is a REQUIRED part of hospice pre death if either or both of the family or patient requests it. Medicare is literally paying the hospice for this.
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Reply to PeggySue2020
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Hospice is a huge relief to us because my mom always has something new coming up. The nurses can handle it instead of us having to get mom to the doctors office all of the time. The department of aging didn't renew the 5 hours of free help we had, so we use the hospice aides. for the baths now.

The only problem we had was the first nurse made assumptions that mom was farther along than she was and started telling us why she thought mom only had 30 days and my mom understood her and started crying. They see now she is doing better and changed their visits from 3 days a week to 2.
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Reply to Charliana
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Dills,

I couldn't tell from your posting whether your husband is still living at home. If there's any way possible, explore getting your husband admitted into an inpatient hospice facility or a skilled nursing facility that offers hospice care. See if Medicare will cover it, and if not, consult with an elder care attorney who might be able to get your husband on inpatient medicaid coverage without depleting your assets.

So sorry about what you're enduring - I hope you get relief quickly,
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Reply to LostinPlace
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I got outside professional counseling from a licensed therapist every couple of weeks while I was caring for Mom and also during the 1-1/2 years she was in hospice.

I also tried to get out and go to the gym and lift weights during this period. This also helped.
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