hospice

[smwelder]

the word hospice has come up as i read post. i m not to clear on what hospice is and what they do .im sure if i search the web i would find hundreds of sites. i want to get a better understanding as to what role they have in a pal's life. ife.

 

[sadiemae]

Ask Ann. I have heard that they are a great help. Just be sure you get all your toys(Equip)first though.

 

[kelly]

Hospice has been a life saver for our family! I will start by saying that you should make sure you have the majority of your durable goods purchased before interviewing hospice agencies. They do not pay for wheelchairs, walkers, etc. However, they do take over payments for rental equipment such as bed, bi-pap, cough assist, suction machine. They pay for the bare minimum with lifts. So, we had to rent our own lift and getting a ceiling track (out of pocket). They also pay for medications. We are fortunate because our hospice pays for rilutek. I am not sure that all agencies pay for this medication. We pay out of pocket for medications they do not deem necessary or consider life extending. Our agency really focuses on quality of life while battling a terminal illness. We have an aide come to our home 5 days a week for 90 minutes which is a huge huge help. The main nurse also comes once a week and happens to be a massage therapist (perfect). My hubby also is still allowed to go to pool therapy..which was huge for us! A massage therapist also comes one morning a week. We have been very fortunate with our caregivers they have provided. Also, hubby had an incident in the middle of the night and I was able to call a nurse and ask questions in the middle of the night. They also offer a social worker and religious support (if you want). I will be glad to share more if you have specific questions.
Take care

 

[abbas child]

Shon, as I understand it, hospice varies from one state/town to another, and in many areas you might find there is more than one. Each seems to follow their state's ruling on what they offer, also. Lori is correct, when you choose them, you only have them--at least that's true here and others I know of. So, I cannot get a procedure done which would prolong my life--they are all about keeping patients from discomfort and pain. Also, here they pay only for medications on their list--many things would not be paid for, including Rilutek.

We are charged (to insurance) by the day, no matter who comes to the house. They provided me with an oxygen machine and portable oxygen. The folks here did not know how to use a sling/hoyer lift, so we trained the aides ourselves--but it worked out fine. Two aides come and shower me, and frequency will change according to what we decide is needed. Right now I see the aides once a week, and an RN once a week. I'm not offered PT or massage. I pay my deductable, and afterwards, pay according to the insurance plan, so that varies--I don't have medicare.

I suggest you or your family member find out what you have available, and then if you have more than one, shop to decide if you would benefit from having them.

 

[smwelder]

thanks ladies , i gather from your replies there home health care. i have medicare and med-cal insurance which together cover all my meds and equiptment. i guess im lucky to live in california . my wife i s my caregiver. there is a hhs home health care service program here that pays my wife for80 every 2 weeks to take care of me. the part about hospice i of read about is how there used at the last stage of a pals journy. how and what do they do . im a bit confused

 

[Katie C]

Hospice was developed to provide terminally ill patients with an option to die peacefully and comfortably in their own home, surrounded by loved ones, rather than in a hospital setting. There are some in-patient hospice facilities to care for patients who need more extensive care than could be practically provided in a home setting. All care is based on palliative (comfort giving) needs, not curative. Most hospice begins with a referral from the primary care doctor (or neuro in the case of an ALS patient) with an assumption that the patient has 3 - 6 months remaining to live, which is generally reviewable every 3 months.

Depending on your insurance and the hospice company you deal with, hospice fees will cover things such as oxygen, hospital bed, commode, etc. They will provide all medications... usually they have their own doctor, but in the case of a rare disease like ALS they will often consult with your neuro as well. Depending on the patient's condition, nursing care can range from a 1/2 hour visit once a week to check in to full 24/7 care if the patients journey appears close to the end. Other help: health aide for showering and dressing, physical therapist, etc, may also be provided. They will also walk you through the paper work regarding DNR (do not resuscitate) orders, health care directives, etc.

Hope this helps you understand a little better.

 

[sadiemae]

I have heard of PALS who are on Hospice, and they plan on going off it when it is time to get a Vent.

 

[Miss]

Or pals who get the vent and then go on hospice.

 

[smwelder]

you all are great. upon getting the diagnosed of als a card with the forum's web site on it should be give out. this place has help me more then my clnic has when it comes to living with als . love to all pals and cals here

 

[sadiemae]

If you are on a vent, NO HOSPICE

 

[Bad Balance]

Annie:

I am sure that you have looked into this, but it is worth a mention. As you know, ALS is an automatic qualifier for Social Security disability which boosts you up to age 65 benifits, including medicare.


- Jerry

 

[abbas child]

Shon, different hospices will handle different things. As sadiemae says, getting a vent may mean no hospice--find out what the hospice you would use will allow before you plan on using them. Some will not clip fingernails. Seriously. The real point, as Katie said, is to help at the end of the road, when breathing is difficult--they have medications to make anxiety/air hunger settle down, so that the end is peaceful.

Jerry, will cut and paste on that subject right now, separately.

 

[abbas child]

You need to have worked and paid into the system for a certain number of quarters during the 10 years before your diagnosis, and to have earned a minimum income. I missed the number, and although my husband works, and has always worked, that doesn't count. The tough thing for the forum members is that an unpaid spouse caring for the ALS patient is not getting those Medicare requirements met. If, after the patient died, they were to be disabled, they may not qualify for Medicare.

I'm thankful my husband has a job...which has insurance benefits. Your belief is one that nearly everyone shares--but only applies to those working for pay.

Hugs,
Annie...who is a "kept woman"!

 

[Katie C]

LOL Annie. I too was a "kept woman". The good news for me is the last two companies Glen worked for had "old style" benefits... so receive a surviving spouse pension and while I have to pay for my health insurance, I still GET it through the company. Blood pressure and arthritis issues could have precluded me from getting insurance otherwise.

 

[Al]

Smwelder, look at the bottom of this page for links to other threads about it.

AL.