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.
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.
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.
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.
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.
They called all the time to have visits to the house.
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.
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!
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.
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,
I also tried to get out and go to the gym and lift weights during this period. This also helped.