Hospice pros and cons

[Tomswife]

I found this resource on Hospice care. The article is well written and comprehensive. It seems the big issue is that most hospice are for-profit.

Just Google zaggocare dot org
pros-cons-hospice-care


"Although hospices were once run by nonprofit organizations, sadly, 70% of hospice agencies in the US are now for-profit companies. In fact, providing hospice services has evolved into a $22 billion juggernaut funded almost entirely by taxpayers through Medicare payments. "

We are only interested in hospice for 24 x 7 care. We want more care not less care. Summit Health is mostly Monday to Friday. They do have a 24 x 7 emergency clinic. But that is not helpful to us.

We shall see.

 

[Mary2]

The article was good. Thank you for suggesting it. The only service I see us using on hospice is the RN visit every week or every other week. A lot would depend on how comfortable my husband is with this nurse.

 

[lynnbr2]

Medicare.gov allows you to search for nonprofit hospice providers

Medicare.gov

www.medicare.gov

 

[SeaGunny]

Concur with comments. Problem is with Hospice, if one is already using equipment needed for quality of life and to prevent ways to die, even normal living conditions such as quality of life such as physical therapy are withdrawn. And if one comes off of Hospice, getting back those items lost due to different providers may be harder to reacquire.

I think what most people are looking for is support. VA has Aid and Comfort (which is money to pay for the time and labor to bring in specialist (??) but this is reserved for actual veterans or widowed spouses. In some cases the VA (Veterans Administration has stepped in, modified the home, gave the vet a power chair compatible van and provided Aid and Attendance,

At present if the spouse is the non-vet, then the saying is SOL - Sorry Outta Luck. On the other hand Medicaid has some provisions, of which we do not qualify. Even Meals-On-Wheels will surprise one. If the patient is getting a formulated diet, in Texas, they do not qualify for Meals-OnWheels (MOW). If the Caregiver is able to drive, then they do not qualify for MOW.

So, Hospice is periodic (interruptions) visits. Home Health is much the same.

I think Tomswife may be looking for a Hospice facility. There are also Skilled Nursing Facilities (SNF) that do provide 24/7 care BUT, to a caregiver of an ALS patient, the care they provide is more like warehousing and checking on the patient whenever or to a set schedule, not bedside attendance. I would be happy with in-house 16/7 but the cost of that via a private company is a financial drain of the worst kind.

I do hire a company to provide 70 hours of attendance (10 X 7) and care so I (caregiver) can get some much needed) sleep! Doesn't work that way folks!

All of these employees are very caring BUT, the issues that happen, it would help if one was a former First Sergeant! My patient was diagnosed in 2021 and is now totally dependent on someone to help them in almost every task they do or dream up. They have lost the use of one hand and arm the ability to walk, even assisted. They can not talk, eat, swallow, spit, blow their nose, and are in a constant drool mode. More on these companys later.. I will try and make it humorous.

 

[lgelb]

If it's a nurse touchpoint you're looking for, Mary, NPs make chronic condition house calls in many communities, that Medicare pays for. You don't have to enter hospice for that. (I know ALS isn't chronic in the usual sense, but that's what it's billed as.) In addition, many hospital nurses will do that as a side gig, if you get the word out.

Kathy, I'm not aware of any Medicare-funded hospice program that provides 24/7 care at home, at any level. They would not be reimbursed enough to do that. As Gunny says, there are a few residential hospice facilities that may have availability at the end, but most PALS prefer to pass at home.

 

[Mary2]

I was looking back through the blog and I noticed that around 2019 someone came off bi-pap and the hospice provided around the clock LPN's for about 3 days. How common is this? I think I have this right.

 

[affected]

Welcome SeaGunny!

It sounds like you are a paid caregiver?
Would love to hear a little more about your situation, maybe start another thread.

 

[lgelb]

I do not perceive that Gunny is a paid caregiver., but rather, a spouse. Welcome, Gunny.

 

[Tomswife]

To clarify. Tom is late stage ALS. I will keep him home and he will stay home even with an emergency. He does not want to go to the hospital. Many tears have been shed.
I have been having paid home health aides about 18 hours per day. I did that for February because I needed to regain my strength. But I really just need the aides for: bed bathing; bed turning (very difficult for me); overnights. There is not much for them to do otherwise. I dont want them doing chores.
I am hoping hospice can help with their daily visits. I was originally told they would come 90 minutes Monday thru Friday. Then I was told twice a week? I am not in the mood for games. Will talk to them again.

 

[Tomswife]

The 24 x 7 care hospice provides is for emergencies and serious health issues. You would have someone to talk to and a nurse will come to the home if needed at that time.

 

[suematt]

My sister is on her third nurse within the last 12 months. I don't like the turnover. The first nurse was great, the second one was ok. Jury still out on this third one. And yes they are definitely for profit. Her Medicare statement showed the charges. They are significant.

 

[Mary2]

My PALS asks for something about every 15 minutes. This doesn't seem too difficult, but as the months and years add up, I have gotten tired and am presently adding more help. I find by the time I do the morning/lunch routine then I am too tired to be a partner to my PALS in the afternoon. We want to listen to audible books and watch tv shows together. Sometimes I lay on the couch and snooze, until he makes the next request rather than be a companion for him. I don't want our days to be like this.

 

[Tomswife]

Mary. Hugs. I spoke with a woman at CCALS who was caregiver for her husband PALS. She did feel like at some point she was more caregiver and less in the role of wife.
Your post reminded me of when I sit down. If I sit, he calls me. I hope I am burning calories. His timing is flawless.

 

[Mary2]

Well PALS really wants to go on hospice. We are turning a corner here. He is spending less time at the computer and more time in bed. He is having more discomfort and more aches and pains. I started him back on 1 Lexapro a day, but I think his change of heart is not going to be impacted by an anti-depressant. He is 78. He has been on bi-pap 2 years and is a quad. He has been fighting this disease or something like it since at least 2016. I am in tears and tears. I don't want to say good bye. But I must.

 

[affected]

Accepting decisions of our PALS can be the hardest thing we will ever have to do in our lives.
Thinking of you both Kathy and Mary. No easy choices.