NH's social worker called to suggest that Dad get hospice services. I was shocked as Dad isn't ready to die and though he is thin and not eating well enough, he is not on his death bed. He just got over pneumonia and is still a bit weak.

The hospice worker told me that they would give him extra care on top of the nh but they would not give him more medicine than is necessary and would restrict what he's given.

Does this mean that they would stop his Parkinsons, AD and insulin? What would happen if he had a heart attack? Would they allow him to go to the hospital for life saving measures in that case?

Hospice can be a very beneficial service, and they provide a lot of support to families. The company providing the hospice care should answer all your questions. Please give them a call. First, write your questions down so that you don't forget to ask what you need to know.

Take care of yourself,

Beth

I can certainly understand your concern. Hospice is NOT only for those patients who are immediately expected to die or are in a moribund state. They provide the highest quality of life possible for those living with chronic, declining conditions which will eventually lead to death.

Hospice now starts early in terminal illnesses and conditions that are chronic and progresssive and will eventually end in death, when there is decline.

Criteria for admission is fairly easily met. With all multiple diagnoses your LO has, you will probably have not problem getting certified.

There is a six month longevity yardstick for Medicare approval for hospice; BUT, with dementia, that criteria is rather, "soft". Dementia is not like end stage kidney disease or cancer, etc. While Medicare has failed to keep up with dementia needs, most hospices know how to deal with this.

We have actually had patient's on hospice nearly two years!

Hospice WILL treat the Parkinsons AND the diabetes with insulin AND permit the dementia medication. These meds are not stopped while the patient is alert and functioning in some way.

If a patient is actively dying, and death is imminent, that may be a different story, but that is YOUR call.

If there is a stroke or heart attack, the patient is usually sent to ER. A stroke is often NOT fatal, and not to treat may cause the patient to have to live with paralysis or inability to speak. Of course, if the patient is actively dying, that may be a different story.

They do NOT have the patient hauled off to the hospital for MRI's and CT's, etc. for dementia. Hospice expects the patient to be a, "Do Not Resusciate" if the patient stops breathing. No ventilators. Usually no tube feedings if the patient stops eating.

They DO treat infections such as UTI's and pneumonias.

Remember, if the patient's death is upon him/her, they will not treat UTI's and pneumonia, etc. as that would have no benefit and death is to occur quite soon no matter what.

You can withdraw from hospice at any time. You are bound to nothing.

With hospice, as stated; they come in earlier than we would think and do a full assessment for every body system, every disease process, for physical needs and psychological needs, etc. The family is also screened for what they need. Hospice can go into the home or into any facility such as an ALF or NH.

Interestingly, (I am an RN and Administrator of Patient Case Management), I find many physcians WAY behind the times in how early they think they can ask for hospice. Some MD's even resist hospice, but these folks are few.

Hospice is all about leading the highest quality of life one can while dealing with a progressive disease that will eventually be fatal.

Hospice provides and pays for all equipment and for medications pertaining to the primary hospice admission diagnosis.

They send in bath nurses, have RN visits, social worker visits, chaplain visits if you wish, there are hospice volunteer visitors, they offer respite care and so much more.

Medicare and most insurances pay for all of this. There is usually nothing out of pocket. It is wonderful to have the extra hands, eyes and ears for our Loved Ones.

You do not have to have a doctor's order to call hospice. When I called for hospice service for my mother, I called three different organizations and spoke with their Supervising Nurse. Do NOT speak to the intake person who may or may not be a nurse as there approach is quite different.

Speaking to the Supervising RN will give you much info and she/he will ask you questions about your loved one. They can more or less, "pre-screen" while speaking with you. They are usually wonderful and very patient. This is an avocation for most of the nurses.

Each hospice is very different. After speaking to several, you will have a "feeling" for which one may suit you best or that you feel more comfortable with.

Some hospices are more liberal with their acceptance into service than others. So, if one should screen and not accept your LO to service, go to the next one.

In order to plug hospice service in, a doctor's order is needed. Some hospice organizations will get that order themselves; other times we or the nurses at the facility our LO is at need to make the request.

Having hospice for my mother has been an extremely positive experience. It was also a great relief knowing they were available 24/7. Any problems or issues? The hospice nurse took care of it right away. They work closely with the hospice doctors so there are very few delays in service.

But best of all, they were a wonderful group of dedicated professionals who were there just for my mother and were wonderful addition to the NH staff.

I would also invite you to come to the Caregivers Forum on this Message Board. That is where most of us are and you will get much input.

I wish you well. Let us know how you are, we will be thinking of you.