Tim's brother
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Anyone have any good information about in home hospice care? What is it? When is the proper time to get information?
Hospice information
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Katie C
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The proper time to get information is as soon as you start wondering about it. Is you brother on medicare? Does he have private insurance? Kaiser? What are his level of symptoms? These are all questions you need to answer. Speak with your brother's doctor.. our ALS neuro is the one that referred Glen to hospice. While Kaiser's hospice was helpful, the company that took care of my mom (medicare and private supplemental) was much better, and the service much more personal. Still.. hospice had someone come in several times a week to assist with Glen's shower and grooming needs. An RN visited once a week to check vitals. There was no copay on his meds once he started hospice. And my son and I are entitled to a year of grief counselling through the hospice program. So I would check with your doctor and with the insurance company to see what they cover.
Tim's brother
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He has bulbar. Was diagnosed in September 2008. On trach, vent and peg. He can stand briefly with assistance to get from wheelchair to bed or bathroom and can write slowly but fairly well most of the time. On cough machine and coupage. Insurance is good. We have nurses and good family help. He doesnt want to be completely dependent on others to carry him from bed to chair or bathroom. Gets pretty stressed sometimes getting into the appropriate position in bed. Progressing fairly rapidly. Trach started in fall of this year, vent in Dec.
Sorry for your recent loss.
Dennis
Sorry for your recent loss.
Dennis
charlottecorday
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The time to start interviewing hospice agencies is when the doc gives a less than six months prognosis to live. Hospice is palliative care.
It is their decision to certify you with their company.It's a good idea to talk to three at least. The agency will need a referral from your Doc and a care plan,unless they have one done at the agency.It's not necessary, but in Texas, it's a good idea to have a DNR and a person designated as medical power of attorney, or power of attorney.If you have specific questions,and I am able to answer you,PM me anytime.
I helped start an agency 8 years ago with 10 patients.They have 150 or more today.I retired(early) late last year.
It is their decision to certify you with their company.It's a good idea to talk to three at least. The agency will need a referral from your Doc and a care plan,unless they have one done at the agency.It's not necessary, but in Texas, it's a good idea to have a DNR and a person designated as medical power of attorney, or power of attorney.If you have specific questions,and I am able to answer you,PM me anytime.
I helped start an agency 8 years ago with 10 patients.They have 150 or more today.I retired(early) late last year.
charlottecorday
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Anyone feel free to PM me anytime regarding any and all info regarding Hospice.If I can answer, I will. Please bear in mind I live in Texas, so things may differ from state to state, and internationally, I would not feel qualified to answer, but will try.
CAHPAH
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Charlottecorday
Interesting that you mention a six monts prognosis needed for hospice. I can't get any prognosis from her doctor for my wife and they have been pushing us to consider hospice for the last 4 months. The clinic where we go insists they have ALS patients that have been on hospice for more then two years, that you can come a go as you please. I'm a little sceptical since I know signing up for hospice effects your insurance and I'm not that sure getting our private insurance back once we have opted for hospice will be that easy if we decide to quit. What are you thoughts? thanks
Interesting that you mention a six monts prognosis needed for hospice. I can't get any prognosis from her doctor for my wife and they have been pushing us to consider hospice for the last 4 months. The clinic where we go insists they have ALS patients that have been on hospice for more then two years, that you can come a go as you please. I'm a little sceptical since I know signing up for hospice effects your insurance and I'm not that sure getting our private insurance back once we have opted for hospice will be that easy if we decide to quit. What are you thoughts? thanks
charlottecorday
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That's a lot of information.When you say they have been pushing you,who exactly are you referring to?
charlottecorday
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Depending on how good your insurance policy is, if it's good I would try to hold onto it.If she goes on hospice, I have seen many(most) people's policies cancelled.The variables are many here and everything really depends on her condition.
Legislation has changed so much since I retired, I was not happy with it because docs were being fined(here in Texas for keeping patients on too long if they were not deteriorating).
With ALS, one of the problems I foresee is if they don't go in with a vent, they will be taken off service if and when they get one, but can hopefully be recerted after that, if not with that company, then another.Hospice is palliative care.It really promotes quality of life,not quantity.They do not believe in taking any extreme measures, because they believe that not to be peaceful.I constantly fought for all my patients to receive antibiotics, under all necessary circumstances.
Have you spoken with the hospice companies themselves?
Legislation has changed so much since I retired, I was not happy with it because docs were being fined(here in Texas for keeping patients on too long if they were not deteriorating).
With ALS, one of the problems I foresee is if they don't go in with a vent, they will be taken off service if and when they get one, but can hopefully be recerted after that, if not with that company, then another.Hospice is palliative care.It really promotes quality of life,not quantity.They do not believe in taking any extreme measures, because they believe that not to be peaceful.I constantly fought for all my patients to receive antibiotics, under all necessary circumstances.
Have you spoken with the hospice companies themselves?
Katie C
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The way the Kaiser hospice worked for us, you are initially admitted into the program for 90 days, then after that they do an evaluation every 2 months. Glen died before the 90 days was up.
charlottecorday
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Things really have changed dramatically.We were recerting patients left and right every 6 months, if they had a condition that warranted it/
We used the Failure to Thrive one many times if we couldn't find any better reason.Katie, I'm sorry for your loss,so recently too.Glad you are here, at least for the support.
We used the Failure to Thrive one many times if we couldn't find any better reason.Katie, I'm sorry for your loss,so recently too.Glad you are here, at least for the support.
Judith
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I have a Medicare Advantage Plan. I just started hospice this week.
My Neuro suggested I get hospice involved, so I contacted my primary doctor and she set it up for hospice to contact me.
I had an eval with the hospice RN who came to my house. She thought I qualified and signed me up. They have nurses who come out once or twice a week, or as you need them. They have aids that will come out to do bathing and toileting and also will help with meals and housekeeping, or taking you outside. They have volunteers that will sit with you, if you want.
Hospice will provide any meds I need at no cost to me. They provided me with a Hoyer lift and will provide a hospital bed when I want. They will work with you at whatever pace you want. I am starting out slow with a nurse visit one day a week. It is comforting to know that aids are just a phone call away, if I need them.
They have my DNR and Advance Directives and if there is an emergency, my husband calls them and bypasses 911. I am very pleased with hospice and glad to be on it.
The hospice RN said they have had people on for 3 years, so it is not a 6-month thing and then you are out the door. They do periodic evals to see if you should remain on. You have the freedom to go off and on.
One thing is that hospice works strictly with Medicare and not your supplemental insurance. While on hospice, you cannot be seen by your doctor concerning the illness you are on hospice for; if you do, your insurance will not cover you and you will pay out of pocket and you will be discontinued from hospice. Everything goes through hospice and they will contact your primary, if needed.
If you have an unrelated illness, you would be able to be seen by your primary and be covered by your supplemental ins.
Judith
My Neuro suggested I get hospice involved, so I contacted my primary doctor and she set it up for hospice to contact me.
I had an eval with the hospice RN who came to my house. She thought I qualified and signed me up. They have nurses who come out once or twice a week, or as you need them. They have aids that will come out to do bathing and toileting and also will help with meals and housekeeping, or taking you outside. They have volunteers that will sit with you, if you want.
Hospice will provide any meds I need at no cost to me. They provided me with a Hoyer lift and will provide a hospital bed when I want. They will work with you at whatever pace you want. I am starting out slow with a nurse visit one day a week. It is comforting to know that aids are just a phone call away, if I need them.
They have my DNR and Advance Directives and if there is an emergency, my husband calls them and bypasses 911. I am very pleased with hospice and glad to be on it.
The hospice RN said they have had people on for 3 years, so it is not a 6-month thing and then you are out the door. They do periodic evals to see if you should remain on. You have the freedom to go off and on.
One thing is that hospice works strictly with Medicare and not your supplemental insurance. While on hospice, you cannot be seen by your doctor concerning the illness you are on hospice for; if you do, your insurance will not cover you and you will pay out of pocket and you will be discontinued from hospice. Everything goes through hospice and they will contact your primary, if needed.
If you have an unrelated illness, you would be able to be seen by your primary and be covered by your supplemental ins.
Judith
Katie C
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As far as losing your neuro... we kind of worked around that... I was able to e-mail him, or leave a message and he'd call me and tell me what to say to the hospice nurse/doctor. So we were still able to get his input. This is important as ALS is not something most hospice personnel are really familiar with and they are sometimes in need of a little ALS-specific coaching.
CAHPAH
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Wow, the more I read the more confused I get. We have talked to one hospice group (Visiting Nureses Assosiation). Their rep told us Serena could keep two doctors; her primary care and her neuro. She also said they would work with our Ins. to get compensated for expensous. Serena is not on Medicare since I have good ins. at work. Well, thanks for the info. Now I have some good questions to ask prior to makeing the decision.
Charlott
What I mean by "pushing" is that they have verbally said they incourage us to have hospice come in now. At our last visit they had the VNA rep there to talk with us. Their opinion is that it is better to have hospice sooner then later but they do give recognition to the fact it is our decision.
Charlott
What I mean by "pushing" is that they have verbally said they incourage us to have hospice come in now. At our last visit they had the VNA rep there to talk with us. Their opinion is that it is better to have hospice sooner then later but they do give recognition to the fact it is our decision.
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