beachybirdie Asked January 2013

How do you know when to call hospice?

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My mom hasn't been told she has a terminal condition, there is no estimated timetable on her decline. However, she is going through a lot of difficulty right now with many issues...she has some dementia, and it is made worse by what her doctor thinks might be systemic candida. She has yeast infection sores breaking out all in numerous places on her body, as well as a thrush infection in her mouth. She does not have HIV.

To top it off, the ALF got her started on round the clock Ativan for anxiety, which really backfired on mom...her confusion worsened, her panic worsened, her breathing got very slow and shallow along with her speech getting slow and slurred. She had a large quantity of the classic side-effects to Ativan and I told them to get her off it.

Mom is pulling off it (she was on 1 mg, 3x a day) and suffering muscle cramps, confusion, speech problems, panic.

Now they are saying we should call hospice. How can I do that when her doctors don't say she's terminal?

Besides, she still wants to fight if the Candida is beatable.

I'm crying so much lately, this is just awful. I don't know what to do.

Thanks. You've all given me so much support recently and it's deeply appreciated.

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pamstegma Feb 2014
beachy, If the yeast is spreading despite good anti-fungals like voriconazole, the patient is not going to survive. If it's in her brain and clogging her lungs, it has probably also invaded the heart, kidney and liver. If the doctor says it is time to call Hospice, let him make the call and Hospice will evaluate the patient. They can use drugs the MD's can't use and keep her comfortable.
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Call Hospice because they care for not only the patient but also for the caretakers! They were invaluable to my mom and my sisters and I when my dad was very sick with Parkinson's; they answered innumerable questions and assessed the state of mind of all of us and gave advice accordingly. Once the connection is made, they are only a phone call away and it was so comforting to know that hey were there with knowledge and guidance and compassion and expertise! Prayers for you and yours and for ALL Hospice people!
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alohakind Jan 2013
I'm so sorry you are having to go thru this @ such a difficult time. Do you have POA, & or Medical Health Care Directive? if not, that's the first step, so you can take care of guide yr Mom. Have you & yr Mom ever talked about her wishes, if she can't swallow? or becomes incapcitated? if not talk to her now about it. I have more advice for you I will try to e mail you...
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Jaye Jan 2013
My Father had bladder cancer, then it spread to his bones and prostate... I do not think the Dr even realized how ill he was. He was NOT a man who complained. He had pain and we got him medication to help with the pain of course. I was his primary caregiver and I made the call asking for hospice. They came and did an evaluation and admitted him. He actually lived about one month. He was tired and he really wanted to go to heaven. He was able to die peacefully with dignity at home like he wanted. He was kept clean and dry and comfortable. He loved having lotion rubbed on his back and his feet. I will always miss him, but I am thankful he is NOT suffering. Hospice was wonderful they helped with medication and equipment I will always be thankful for their kindness!
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golden23 Jan 2013
"she still wants to fight if the Candida is beatable"

The candida may well be beatable. Has an infectious diseases specialist been called in? I am battling candida myself - due to too many antibiotics - something to be aware of. The only one who has known how to treat it is a specialist . He. or she knows if it can be dealt with and, if so, what to do about it. Systemic candida is exhausting, causes brain fog, aches and pains and a number of other symptoms, which are not helping your mum's overall condition. There are a small assortment of drugs that are pretty effective.

She still wants to fight, then bring in the people who can treat the candida. Once they have done what they can do, see how she is, and go from there.

Most people, including general practioners have no idea how debilitating systemic candida is. It also has a 40-45% mortality rate. Give her a chance and get her treatment for it.
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jeannegibbs Jan 2013
Call hospice. Get an evaluation. If they consider her to be ready, listen very carefully to the complete explanation of what it means to be on hospice. Decide if it is right for your mother.

If you don't call hospice, you are making a decision without all the facts. Get the facts first, and then decide.
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txcindy Jan 2013
Call hospice. Ours was very helpful and supportive, even though Mom didn't quite qualify the first time. They gave us a lot of information so we were better able to help mom.
A couple weeks later, she qualified and they arranged a respite stay the first weekend, which we sorely needed.
I can't say enough about how much support our hospice gave mom and us. One day, the nurses came out 4 times, but mom was able to stay in her own home till the end. That meant a LOT to mom and the family.
Our hospice helped ease mom and my family thru the end, took care of all the details so she was able to skip the hospital, etc. They still call us to see how we're doing and offer grief support to our extended family.
Catjohn22's post sounds like we could have written it. Thank God for hospice.
Bless you. Hang in there.
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Besides Power of Attorney, you need to become her Health Care Proxy. The HCP makes medical decisions when the patient is unable to do so. I have had to use it several times over the past 10 years for my mother. It is a legally binding agreement and it makes everything so much easier... medical facilities and professionals MUST listen to you and be open to you. Bless you in your loving efforts with your mom.
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Sudie7 Jan 2013
Carol, of course I agree that even with POA you are expected to follow your Mom's wishes! Unfortunately, there are times that those wishes and decisions crop up that are unexpected and were never fully discussed PRIOR to setting things up, i.e....dementia, swallowing disorders, constant and severe pain, complications with other illnesses. My understanding is that the loved one is entrusting you to honor what they would want and make those decisions when they no longer are able. Sometimes you are on your own. Hopefully, one can get their knowledge and support from the professionals and in my case, my Lord Jesus Christ. I don't believe that any of this is easy. Those are the often 'unspoken' difficulties that crop up with the task of caregiving. I'm only suggesting that one cannot make any legal long term medical decision without legal power to do so.

Many agencies provide palliative care and I'm fully supportive of Visiting Nurses Association. In my case, Hospice did both and we knew eventually, we would need them. That was our choice. I'm only suggesting that instead of wondering...the best thing is to make the call and ask. Sometimes we all need a nudge to know we have that much power to do that. It's comforting to know there are many options to these VERY difficult issues that we all begin to struggle with. It sounds like we really are in agreement. :) I hope 'beachybirdie' finds encouragement from all of us!
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Catjohn22 Jan 2013
Beachybirdie: In our experience, it seemed to be virtually impossible for someone to estimate a timetable for someone with Alzheimer's or other dementia. You can call hospice at any time, but it may not be the right time for their involvement. In the case of our caring for my husband's mother the past couple of years, we first called hospice over a year ago, when she was 92 and began losing weight. We were frightened, but it turned out to just be a part of the long process of the Alzheimer's progression, and we adjusted to that and did what we could. She went on relatively well for more than a year after that first visit without the need for hospice. Other issues came and went, as the disease relentlessly marched on. I raised the hospice question periodically at her every two month doctor visits, but he was always vague and seemed to not think it was time for that, so we continued to get along as we had been. We did have a couple of instances of home health care being called in, following some minor falls and a pelvic fracture. They mostly monitored and really did very little otherwise. But around mid-November, soon after her 93rd birthday, I noticed that something was suddenly very different. There was a different look in her eyes and her behavior became less agitated, almost more accepting of whatever was coming. At that time we called hospice again, but decided to wait until after the holidays to have hospice come in and work with us. However, two weeks later I had to call them back, as changes were coming so rapidly. She was much less communicative, balance was being lost, there were changes in swallowing and appetite dropped off even further. Hospice came in on a Monday the second week of December and did paperwork. Tuesday a hospital bed was delivered, along with a bedside commode. Wednesday an aide came and helped us get her all cleaned up and settled comfortably in her hospital bed. That evening she went to sleep in her fresh bed, all freshened up and never woke up again. Clearly, that was the right time for hospice involvement, as her death was as peaceful and as comfortable as it probably could have been, but I still wonder whether she could have benefitted from earlier hospice involvement. We worked hard to care for her, and with the occasional home health care, and also accessing her doctor's physician assistant, who is a particularly compassionate, sensitive and responsive young woman, we all got through everything about as well as we possibly could have. You really have to reach out to all sources of support when you're focusing on palliative care. I wish you and your loved one all the best in achieving her comfort and your peace of mind. It's certainly not easy, but if can be done.
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