Frustrated

[jwife]

Last week we talked to our Home Health nurse about moving from home health care to hospice. My husband's neurologist told us in April that she would support the change whenever we were ready. So we talked with the social worker, listened to the differences in the two agencies and decided it was time to switch. A major factor being my husband could qualify for 5 days of respite care so that I could have a break.
At 8 o'clock tonight the intake worker for hospice came to our house to evaluate my husband for care. Boy, were we surprised when he told us that my husband's ALS does not qualify him for hospice care. He said that my husband's speech would have to be unintelligible for him to qualify for hospice. His speech is weak, soft and he can only say 3-4 words without having to stop to breath but those words are still mostly understandable. Never mind that he is totally dependent on me for everything from his tube feedings to lifting him in and out of bed. He cannot even turn himself over in bed. He is, of course, going to talk to the supervisor to see if they can qualify him under a category such as failure to thrive. He will notify us tomorrow about whether or not hospice will accept him.
My husband says oh, don't worry about it. Me, I say here again someone has dangled the carrot of having respite care only to say "sorry" we didn't really mean to give you any help. Now I'll be awake most of the night worrying about how I am going to get even a short break from being full time caregiver. Beyond FRUSTRATING!

 

[brooksea]

WTH? To qualify, you are not supposed to be able to talk? That would exclude a whole lot of pALS from hospice. Not all get bulbar symptoms that are severe before they pass, some not at all. It would also exclude other patients from their care that suffer from other diseases. That makes no sense whatsoever.

He may be very ignorant about ALS.

I hope this guy is not jerking your chain, that would be cruel.

Looking forward to hearing that he DOES qualify! Please let us know!

 

[trfogey]

I have been on hospice for 10 months and still speak clearly, eat and drink by mouth, can blow "raspberries" with my lips and tongue, etc. I have also been successfully recertified as eligible for hospice services three times, most recently last week.

So I am blowing raspberries and a similar noise from another body part in the general direction of your hospice intake worker.

 

[Jason's Dream]

Hon, I totally understand and can relate. We interview THREE hospice agencies. I would HIGHLY recommend doing this. The first agency was good, but wanted to see all options before choosing an agency (trying to make the best decision for him). The second, sounds sooo familiar to what you have ran into. A cold-hearted nurse kept flipping through her "quals" for medicare book and reading all the things and saying he wasn't qualified, with half of what she was reading, some of which will never apply, because he will probably go in his sleep before other stuff get that bad. I was soo angry with her. Who died and made her God? I thought it was the doctor's referral based upon thier expertise that qualled him based upon progression and symptoms. I kept reitterating the fact that his doc had said, a few months ago, that he thought Jason had 4-6 more months at best. She didn't hear any of it. In fact, she looked at you as rude for trying to converse or open your trap while she spoke. When she was done, the way she talked, you would have thought, we had just had Jason's funeral service, and she was coming aound to pay her condolences to me and the family. Blech! Not in my household. The third agency was fine, but due to equipment handlers (something to check out who thier carriers are), we opted for the first agency The people are great, but the management sucks, so I am contemplating interviewing other agencies. HTH. *hugs*

 

[dian_na]

call a diffrent hospice company. You have to have a diagnosed of less then 6 months to live, ALS automatically does this, The guy is wrong. Also jus so u k now whoever told you 5 days respite they also were jerkin ur chain, they will provide respite but not like that

 

[asantiago]

That makes no sense to me at all! Sorry you have to deal with so much!

What we experienced was so different from what so many on here describe.

There was only one hospice where we were but it was great.

They didn't go through any checklist of anything to see if she qualified.

I'm with Jason's Dream if a medical DOCTOR prescribes it who are they to say any differently?

 

[Katie C]

Absurd is the nicest thing I can think of to say. If you generally like the company you are working with, call and ask to speak to the guy's supervisor. Otherwise, start interviewing other providers! When Glen first went on hospice, we were contacted by a physical therapist who was part of the program. After we said that Glen was mobile, no he wasn't in a wheelchair or using a walker, his speech was relatively easy to understand, etc, she asked me why he was even on hospice! It happened that our primary case nurse was on her way to the house, so I was still pretty angry when she arrived. She asked me who the PT was, and immediately called the program director and left a message that she didn't believe that the PT had the appropriate attitude to be part of the hospice program! In general, hospice providers don't like employees that a) don't know what they're talking about and b) make the company look bad!