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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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.
If you don't call hospice, you are making a decision without all the facts. Get the facts first, and then decide.
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.
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!
In my Mom's case, she had already slipped into that coma-like state before the Dr recommended hospice. So even though the Dr wanted her permission first, I had to be the one as POA to let the Dr know what Mom would want.
Before Mom was on hospice, she was receiving palliative care from the same agency --- the Visiting Nurses Association. Palliative care is for patients who are not considered terminal but their condition is not curable.
For us, the nurse would come out two or three times per week to make sure Mom was not in pain or distress --- not to fix the illness but to make her comfortable. Mom had Parkinson's Disease, hydrocephalus, NF2 and many other health issues.