The Next Step — Hospice

My father’s nurse came and discharged him from the nursing service today. It’s not so much that he’s doing well but that they can’t do more for him — they are a temporary service to help recently hospitalized people learn to deal with their infirmities and the various aids necessary to keep them going. My father really doesn’t have any such aids except oxygen, which he’s been using for several years, and a pacemaker he’s had for six years. He wasn’t interested in physical therapy or any other services they offered except the nurse’s assistant who cleaned and groomed him. He is capable of doing it himself, he just doesn’t want to because it tires him. (When he forgets that he’s old and tired, he romps around without his walker or oxygen, sometimes for more than an hour at a time. )

So the next step is hospice. I didn’t know anyone could apply to hospice — I always thought the patient’s doctor had to prescribe it. My father’s doctor has been uncooperative, insisting that my father isn’t dying. Perhaps he isn’t dying, but he’s losing weight, nursedoesn’t want to eat, doesn’t want to do much of anything except sleep and pray. (Personally, I think he’s bored, but it’s almost impossible to get someone interested in doing anything unless they want to.)

My sister went to talk to hospice today, and when she explained the situation, they said our father was a perfect candidate for hospice. Apparently there are other ways of getting on hospice than having your personal physician prescribe the service. The people at hospice said that if his doctor didn’t release him, they would send a doctor to examine him and sign the prescription. Like with everything medical these days, it’s a matter of hurry up and wait, but still, we’ve got the ball rolling. (Do you think I should have added another cliché, or is that enough to get my point across?)

I’m not sure how I feel about this. I want hospice here, of course. I can’t do everything my father needs (I simply do not want to bathe him, though many daughters do that service for their aged paternal parent). Besides, my father cannot continue going to his doctor — the guy makes his patients wait for several hours, and that is too taxing for an old man. My problem is that although this hospice is the one we had for my mother and so my father wants them, I was unimpressed (they and my father kept my mother hopped up and delusional on vicodan even though she had no pain, and they were rather surly when I insisted — rightly — that she be taken off the drug). And these are the same people who kicked me out of their grief support group and threatened to call the police if I returned. I do not have good feelings about them at all.

I’m hoping to talk my sister into staying so she can deal with the hospice people, but if not, well, I’ll worry about that when the time comes.


Pat Bertram is the author of the suspense novels Light Bringer, More Deaths Than One, A Spark of Heavenly Fire, and Daughter Am I. Bertram is also the author of Grief: The Great Yearning, “an exquisite book, wrenching to read, and at the same time full of profound truths.” Connect with Pat on Google+. Like Pat on Facebook.

13 Responses to “The Next Step — Hospice”

  1. Carol Paul Says:

    my mother was admitted to hospice one year ago….she fall and pulled a muscle which caused her to stay in bed and become depressed…..i live here now 24/7 and hospice is a god sent…..she never has to leave to go to the doctors and all meds are delivered and shower aids come 3 times a week…..and chaplain comes and speaks with my father and mother….and i get to have adult conversation 4 times a week…..i love my hospice……it is not just for the soon to die…..she is reviewed ever month now but as long as she is loosing weight she qualifies….she was admitted because heart (blood pressure was low) i think she forgot to take she meds…..she now has dementia and lower body can’t move…..i hope you take the hospice…..your parent deserves it…..good luck…..

    • Pat Bertram Says:

      I like hospice, just not this particular one. The people I dealt with when my life mate/soul mate was dying were great. And yes, if we can get him signed up, I will. You make good points. Thank you.

  2. Paula Kaye Says:

    My husband was on Hospice the the final 16 months of his life. We kept him at home and a professional nurse came once a week. We also had a health aide at the end that came and bathed him. I never used the chaplain or the social worker, but they were available. Everything was paid for by Medicare. All the meds, the oxygen, a hospital bed, walker, wheelchair, commode, adult diapers and wipes….everything you can imagine that we needed they provided. As for the one that you mentioned (which does NOT sound like a good fit) you have the right to refuse any and all meds. However hospice does believe in ‘end of life care’ which often means using meds for pain, anxiety, air hunger, depression, sleep and etc. If you don’t want him “hopped” up then simply tell them. YOU are the boss. Not them. There are lots of Hospices. Maybe you can find another one and convince him that one can’t take him right now…..good luck. I am keeping you in my prayers. Why on earth would they throw you out of their grief support group and call the police. Sounds like a crappy organization. We used Gentiva, which is a national Hospice

    • Pat Bertram Says:

      The hospice I had for Jeff was great. They were supposed to come a couple of times a week, but they ended up coming every day to help me with new crises. As for getting kicked out of my grief group – for some reason they thought I wasn’t grieving enough. When I told the facilitator that people who were grieving were vulnerable and he should be careful, he took that to be a threat and got all the heads of the hospice in on the matter. It was truly bizarre.

      • Paula Kaye Says:

        It sounds like he needed to be educated in what grief is like. It is different for everyone. I was once told that by a doctor in a hospital. I had given birth to a stillborn daughter and I wanted to be released to make her funeral arrangements. The doctor told me he felt I was not showing the right amount of grief and therefor he did not want to release me from medical care. I checked myself out and never looked back. It has been 40 years and I still grieve the loss of that baby girl…do you think he would have kept me in the hospital for 40 years?

  3. cicy rosado Says:

    just be careful because hospice puts the patients on morephine my aunt had a friend who was not in pain and litterly killed her with the morphine so think about it ok?

    • Pat Bertram Says:

      I’ll make sure he doesn’t get it. He doesn’t really have much pain so he wouldn’t need it.

      • Paula Kaye Says:

        Remember, though that morphine can also help with air hunger if he is experiencing breathing problems. Richard had a lot of that towards the end and I was so grateful to have the morphine to give him. There are worse ways to die than in horrific pain.

  4. Joy Collins Says:

    There are many hospice agencies. Interview some and choose the one you want. I had two different ones for my mother-in-law. I fired the first one because I felt they ignored some symptoms. Do not resuscitate does not mean do not treat. The second one I hired was awesome. And debility is a term they use now for patients who are failing but not necessarily dying. The good thing is it allows for other services to be brought in like aides, social services, chaplain, etc. It’s good for the whole family. The nurse came once a week and the doctor and physician’s assistant came frequently as well. She never had to leave the assisted living home. And medications and supplies will be paid for by them as well. It’s a misunderstanding to say that they will over medicate. They won’t and they will follow the family’s wishes.

  5. shadowoperator Says:

    Dear Pat, Though I don’t frequently comment because I’m not sure I have anything to contribute, my mother has been a hospice administrator, and at least in some states hospice is only supposed to be for patients whom their doctors determine have only 6 months to live. I was astounded to read in some of the comments above just how long some people had been on hospice before passing on! If it’s different in your state or county, and you can find an alternate hospice to the one which has caused you problems in the past, then I would by all means go for it. They are in general a fine service. My mother even as administrator was called out to sit with people sometimes on Christmas and Christmas Eve and etc. when her nurses were elsewhere or couldn’t cover all the shifts, and I think most of the people are quite dedicated; though, of course, you do have to make sure that the doping which some of your commenters mention above and you also mention is not going on. Good luck. If you have any questions which I can ask my mother about from her own experience (though it sounds as if the quality of people involved varies a lot from place to place), just let me know.

    • Paula Kaye Says:

      I am a RN. My husband was on hospice for over 16 months. When we first went on hospice he was told he had less than 6 months to live. There were many times in those 6 months where I didn’t know if he would make it through 24 hours. The only one who truly can tell you how long a person how to live is God. Continued Hospice care, which is paid for by Medicare, and is not controlled by the states is based on continued decline. How long a person lives isn’t the final answer. If the person continues to decline then Hospice care continues to be needed. IT IS NOT BASED ON HOW LONG YOU HAVE LEFT TO LIVE. That is a common misunderstood fact about Hospice.

  6. Pat S. Says:

    I’m glad you’re getting the help you need. And as so many others noted, hospice is a god send. And, while respecting your father’s wishes is one thing, ultimately YOU are the one having to deal with them on a regular basis and it should be an organization that you like and that respects you. Would your father even know if you changed the group? And you know, shading the truth for the sake of peace is not a bad thing. Shadowoperator, I don’t know what state you’re in, but when we got Dad on hospice, they said one or two of their patients had been with them almost three years, although usually it was a year or less. It isn’t just for those at death’s door. It’s for those for whom further intervention, such as physical or speech therapy, etc., will be of no benefit but who need care and assistance as nature takes its course. Dad wasn’t in immediate danger, but he was simply mentally done with trying to get better. The hospice caregivers were just plain awesome. And at the end, the last weeks, the morphine was also a godsend. I’m forever grateful to Dad’s friend who told us about hospice, since, like Pat, we didn’t realize he was eligible (and the nursing home hadn’t mentioned it either). Good luck with this.

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