What help do you get in hospice? I cannot take care of my husband alone and cannot afford to hire aides.

My dad was on hospice for the last 15 months of his life. He was independent with everything until a stroke at age 92. He died at home under hospice care at age 94. Hospice provided the equipment he needed, a hospital bed, Hoyer lift for the last several months, all the supplies like under pad chux, diapers, wipes, gloves, and barrier cream. This was worth hundreds of dollars per month. We were previously paying out of pocket. They provided 2 aides to bathe him twice weekly. First in the shower and later, very effective bed baths. They changed his clothes, shaved him, and got him up in the geriatric chair with the Hoyer lift. Put the laundry in the washer but didn’t turn it on. They also provided the Geri chair, a basic recliner that he could watch tv, elevate legs, roll around in. Hospice does not provide 24/7 hands on care. They provide 5 days respite in a local nursing home. We never used that benefit. Dad would have been so disrupted. But it was peace of mind, for me. In home care, close to 24 hours with agency or private costs about $10,000 per month. Or more. Hire help that helps you, and him. At first, 4-6 hours per day, may be enough. Or, overnight help, so you can rest, disconnect, and he is attended. None of it is perfect. Eventually, facility care makes more sense unless you have many family, friends and paid caregivers helping. I’m happy to answer questions. I have learned so much in the past 3 years.

Your husband sounds like my dad and I suspect it is a generational thing. Last year when my 83-year-old dad made the decision to enter home hospice care for his end stage COPD/emphysema, I was shocked to find out how little hands-on care Hospice provides.
As others have said they provide equipment, supplies and a few home visits pr week but the bulk of patients care falls on the family. The main difference for my dad with being in hospice care was the change in medication protocol.
His regular COPD meds had dragged out end stage COPD/emphysema for FOUR YEARS! But since the medication protocol for hospice dictates that meds are for comfort and not lifesaving, he deteriorated very rapidly under hospice care.
Unfortunately, there is no way to predict how it will go for any particular person.
For us it was a Sh*t show!
My dad was very controlling; he was used to taking care of everyone and everything and he had always done a darn good job of it BUT when he needed taken care of he could not. He could not let go of his pride to allow anyone to take him to the toilet or help him shower and refused a commode or a hospital bed. He didn't have enough breath to climb steps to get to the bathroom. My 82-year-old mother would get confused and was uncomfortable with allowing him to have morphine and ativan at will and would hide the meds from him. 6 weeks after entering home hospice he suffered a heart attack and lost all ability to speak. He already had lost his hearing and most of his vision but was still insisting on trying to navigate taking care of himself and refusing help. He was sleeping bolt upright in a living room chair and the meds would have him so out of it that he would nearly fall out of the chair. He couldn't walk himself to the bathroom without falling. His last day at home, I couldn't take it anymore, and three hours after a nurse had been there I called them and said we need you back here this isn't working. That is when they realized that the meds couldn't make him comfortable, and that he had had a heart attack but mom and dad hadn't told anyone because he wanted to die. He didn't want any more lifesaving treatment. It was heartbreaking watching him suffer, because he was not at peace. He was so agitated. So, the decision was made to have him released from home hospice and transported.
It is so unfortunate that the process involves calling EMS, which are forced by law to administer lifesaving protocol, then transfer to the ER (more lifesaving treatment), then ICU and FINALLY! AFTER 48 HOURS he was transferred to into hospital hospice care.
He was finally comfortable; and we could finally relax a tiny bit. We finally were able to have those meaningful conversations and tell him goodby. He spent one evening surrounded by his entire family (38 of us!!!) jammed into a tiny hospital room watching a football game and laughing and joking. Then he slipped into unconscious and was gone the next morning.
Home hospice is HARD. It is grueling. It can also be loving and dignified if that is what the patient and their family wants and is prepared to face. It depends on the personality of the family is. Do you think you can get through the ugly hard things with realism, and work together co-operatively?
If your husband, like my dad can't let go of his manly pride and allow others to care for him it will be very hard. As long as we were at home, it was HIS TURF. He had always said HE WAS THE KING of HIS CASTLE. But once in a hospital, he was so happy to let go and be the patient.
Time for a really frank honest conversation with him. And with yourself. Can you lovingly stand up to him when he gets embarrassed or feels like he is losing his dignity? Can other family members? If you think you can muster the toughness to do so and care for his physical needs while helping him keep as much dignity as possible, then it might work out for you.

You get very little. You get several baths a week with visiting AID and you get a Social Worker who will call and may help you arrange for help if you request. You get Clergy who will call to see if you would like to meet with them, and you get hospital bed and commode, other equipment as well as help with medications. You would see an RN weekly.

I would interview them and ask what exactly they can do to help you.

My MIL and my BIL's mom had the same Hospice company. The thing that they learned was that you have to kind of ASK for a lot of stuff.

My MIL had someone come in once a week to help her bathe. Someone else checked her meds and brought more as needed. That was basically all they did.

My BIL's mom had aides (through the hospice company) that bathed her, took her to the store if she wanted to go, made simple meals, cleaned her house, did her hair and nails. She also had a visiting chaplain and a music therapist. Along with all this, she had PT and OT. So every single day, she had 1-3 people coming to help her.

Personality-wise these 2 women couldn't have been more different. BIL's mom was an outgoing party animal right up to her 100th birthday. My MIL didn't even want strangers to touch her garbage cans, much less come into the house.

When the discovery was made that these two women had the exact same Hospice Co., it was discussed a lot as to how they could get my MIL to accept MORE help. It never worked out, she wouldn't let people in her house.

So--my guess is it's kind of whatever you and your LO wants---

If you keep your husband at home the only help hospice will provide will be a nurse coming once a week to start and aides coming twice a week to bathe him.
Of course they will provide any needed equipment, supplies and medications for him, but as far as hands on help that is next to nothing. 99% of of your husbands care will still be on you.
And if you opt to put him in a hospice home, he will receive top of the line 24/7 care, however Medicare only pays 100% if your husband were to die within the first week of him being there, otherwise you have to pay out of pocket to keep him there.
But in your case it may be worth it as they will take care of him so you can just be his loving wife and advocate.
My late husband was under hospice care in our home for the last 22 months of his life and I had to hire an aide to come in the mornings to put him on the bedside commode, as he was a morning pooper and had a permanent catheter, so that was helpful to me.
Other than that I had to do pretty much everything pertaining to his care. Hospice anymore is pretty much useless unless you can afford to be placed in one of the hospice homes. That is a night and day difference from in-home hospice for sure.
I wish you well as you now do what is best for the both of you.

You can get Hospice Care through Medicare. I am sorry you are dealing with so much right now. Please have your husband's doctor recommend Hospice Care with the Terminal Cancer diagnosis. Your husband can be place in a skilled nursing facility soon.

Talk to an elder atty right away. You may think you have too much for Medicaid, but those attys are very familiar with the rules and can give advice on how much you would have to spend down for facility care. Monies are considered for the person who stays home and the one who enters facility care.

In home hospice via Medicare is not going to send someone to help you throughout the day for care like toileting, turning him, or getting him up. They may send someone to help bathing and check his overall stats like blood pressure, etc, but nothing in the way of round the clock care that you are probably going to need if he will be getting up and down for the bathroom.

In home aides are expensive for the number of hours you are probably going to need help each day. Those who saved wealth for the elder years can do this sort of thing and those who didn't, they have to rely on family and friends for the free or very low cost care in the home. Talk to atty.

I totally understand him not wanting you to change him. AND it is physically tasking so not appropriate for you to do, besides being embarassing for him.
Couple ideas
- Have Hospice suggest a place he can be and perhaps you can move to as well. You visit every day regardless. Hospice can help you identify next steps, who to contact/trust with steps AND is usually full of compassionate people.
- Think about what your life is "after" and keep that in mind while taking care of hubby. Perhaps that means you both move and use proceeds from the house to take care of both you now. Be sure you are left with companionship.
- Be sure will/trust, POA, MPOA etc are in place and clear for BOTH of you. Be sure you know where and when friends are our same age you need support of those younger. This could mean alot of things
- Perhaps consider 2-4hrs per day home care and adult underwear and/or external catheter. That 2-4 hours would be a shower each day, clean house, prep meals, anything that will help you help your husband and help you figure out how to handle things when help isn't there.
Hospice is great for equipment, sometimes ideas, sometimes outside resources.
"good enough" is the best to expect. Getting old is not for the weak.
Know that love is all around you and you WILL FIND the best course your YOU and your hubby. Everyone's answer is a little bit different.

As others have said, consult with a lawyer regarding Medicaid.

Even if you do get it, it will not be instant, and instant is more or less required here.

My husband has been on hospice for nine months and he gets: his nurse comes once or twice a week, a social worker and the chaplain come about every ten days, the bath aide comes once a week. He lives in an adult family home so everything else is taken care of by the caregivers who are amazing. Hospice also takes care of the medications and his adult briefs. The cost for the adult family care is prohibitive but something we can’t escape. However, I am not sure what I’ll do once my savings is gone. Good luck.