Can anyone tell me how much help they receive from hospice at their home?

[Ilsa]

My MIL has dementia, it's getting pretty bad, and hospice comes twice a week to bathe her. A nurse comes once a week to order supplies (pullups, bed pads, reorder prescriptions, etc) and take her vitals.

Everything else is on us (mostly me), getting her food, washing clothes, dishes, etc, changing her bed pads and draw sheet, etc. Also, cleaning up her messes, finding items she's moved around, and putting up with her deteriorating personality.

I'm wondering if the aide and nurse are worth it, since we have to coordinate so much. So far, I think if it wasn't for the 4-5 days respite, I'd drop it.

We are working on getting her VA benefits approved so I'll get about 15-16 hours per week in help.

Thank you for your responses.

[Tetrachloride]

1. My family hired an extra nurse / general assistance 3x a week

They asked me what time of day. I said first thing in the morning. And that was just right for me.

[DURHAM D]

2. I live in a smallish town and there are three live in Hospice Houses

that I know of. Wouldn't that be a solution for you? I have no idea how you get to move in.

[CountAllVotes]

7. My husband was transferred there from the hospital

I could not care for him being he cannot eat nor breathe. They expected ME to care for him in this decrepit condition. When I told them I could not do it, they had to wait for a bed to open up at a nearby hospice facility that has 6 beds I was told.

They wanted the money paid in full upfront before they would transfer him.

Isn't this a fine country to live in and just wonderful the way our vets are treated?

GO USA! GO USA! GO USA!!!!!!!!!

[badhair77]

3. In 2020 we had hospice care for my husband.

He was bedfast and I had to do his daily hygiene and feeding. The hospice people were wonderful but I needed more help. An aide came 3 times a week for an hour. The nurse came once a week or whenever we had a crisis. Basically I was 24/7 till he passed. He had long term care insurance but we had to have the care providers approved and set up. They were scheduled to start the Monday after he died, which was on a Thursday.
Because of Covid all the respite care and volunteers were on hold. I really could have used them all.

Best of luck in your endeavor. Care giving is hard.

[Trueblue Texan]

4. caregiving is the hardest work there is...

Sounds like you are getting all the hospice help you can...hang onto it, if it's not worth it now, it will be and losing hospice is a big deal.

The VA will help you a lot, especially if the beneficiary served during war time. I have been deeply impressed with the VA services, but you gotta know the right person to talk to in your community that coordinates those services. Keep asking for this person's contact info if you're not getting enough help.

[CountAllVotes]

6. But if he did not serve during war time ...

GOOD LUCK!

[CountAllVotes]

5. My husband is in one now

He can no longer eat nor breathe.

The cost is $500 a day right now.

Its breaking me.

I looked into that VA thing.

They DO NOT cook, they do not CLEAN and I really DO NOT KNOW what they do for 16 hrs. a week to "give me a break".

I sure feel for you!

My situation is about over it seems but this care-taking thing is a nightmare and it sure seems like some one or some place should be able to help without charging you an arm and a leg for in such a horrible situation. I'm convinced it is all about money as my eye went out thanks the MS I have and I am doing poorly at best. I cannot drive and food is running low but hospice sure got here fast to collect their $3200 for one week of care when I told them I couldn't make it into town due to the MS flaring full speed ahead!

I don't blame you for feeling you want to get rid of them. I found them to be quite useless in the case of my late mother. This situation with my husband has been worse, far worse!

Take care Ilsa!

[Ilsa]

8. "I looked into that VA thing."

"They DO NOT cook, they do not CLEAN and I really DO NOT KNOW what they do for 16 hrs. a week to "give me a break"

Wow. My uncle in Texas has the 16 hour assistance and said they do alot for him.

I'm not having them in just to bathe and sit her. The feeding, laundry, Rx administration, and cleaning is driving me nuts and taking too much time. Bathing and dressing takes only 20-30 minutes.

Thank you.

[CountAllVotes]

9. Was he in combat?

My husband was not.

Seems that is the reason I cannot even get them to return a call as I pay $500 a day!

[Ilsa]

10. Yes, he took multiple tours

in Vietnam, etc, in Special Forces. He joked that it was a better, safer job than regular infantry.

She will get an extra $250 or $300 (above standard $1250) towards nursing home care.

[CountAllVotes]

11. That is why he is getting so much help

My husband was in Germany at the time of the Cuban Missile Crisis. He was supposed to get out but he was extended for another six months.

However, I'm finding he is eligible for nothing!

I'm picking up the tab on this whole thing!

Glad your uncle is getting the help he needs and deserves!

All veterans should get it IMO!

[Trueblue Texan]

12. Have you checked with her supervisors?

I know there are a LOT of paid caregivers who do nothing but sit on their asses and play on their cell phones. BUT that is NOT what they are being paid for. Those that do nothing are often just taking advantage of the situation.