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unless we try to get additional help in the home for her.

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She was evaluated again for hospice and denied, but, palliative care (a program called Journeys) was suggested, so we again will have to be evaluated again for that, which I am fine with. But, I believe she needs to be more honest with the people who are doing the evaluation. No, she doesn't eat much, yes, she wanders AND is up ALL night, and she tells me about the pain she feels, but does she even mention or admit to it?
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Sadly, we had a similar experience with my mother's PC not interested in treating her since she was non ambulatory after hospital release and bedridden.

We begged for muscle relaxants for her back - not opioids as they do not do a damn thing beyond crazy making.
OT an PT indicated they could see her back muscles and body torsion when trying to stand and asked why she was not on MRs. I had more advocates begging the PC Doc to help her pain from spasms. Doctors in hospital wanted her gone due to mismanaged pain and exhaustion from trying so hard to help herself recover and breathe through the pain. As a result of pain she was psychotic and screaming - they told us take her home to die or nursing home.

UNREAL.

She really tried to hang in there and stay in her right mind. Now we are in a pit of loss of her ability to be a part of helping herself.

The hospital did not brush her teeth in 4 weeks. I was shocked and disgusted as was the in home case manager who did her home treatment assessment.

The list goes on.

We hired 24 hour care because I cant continue to do it all - especially since she had to return to hospital and then was turned around and sent home or to nursing ward. She is far worse condition than before.

Hold on even if it is white knuckled.
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Lostinthemix avatar
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Lostinthemix Sep 2018
UNREAL is for sure the proper word for it! I have ALWAYS just wanted the BEST CARE for my mil, but it seems to me, like I, AND IN TURN, SHE, is not getting IT! We rely on, the "supposed professionals". They are all jokes, in my opinion, but they can call the shots.

I have another scheduled evaluation with hospice AGAIN this week so we shall see what happens after that. We have been denied twice already because she didn't fit their "criteria". Yes, I know she is still verbal (with me), mobile, and she is able to feed herself but in all the reading I have done, this doesn't mean a thing. So, yeah, we'll see.
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I hadn't given any thought to hospice for my dad even tho he was really declining. its not like I had been through it before it was all new to me. he was bad on a scale of 10 being bad. and slowly going to a 9 then 8 then 7....and no one at AL ever said "hey this is getting close".....But things happened on their own. he rolled out of bed and was unresponsive - so they called 911. went to ER. while there I was approached if we wanted hospice. They explained what it would do. and I accepted. Once he was back at AL, dad was visited by hospice and they actually called me and said: he didn't think dad qualified at that point.(which upset me) the hospice person told me they saw him "walk on his own" Which was crazy, because I knew ~if~ my dad was walking - it was only because dad didn't have a clue that he COULDNT(because of his dementia) and they only happened to see that in that second. if they would have stayed longer they would have seen how bad. I think since my dad just returned from ER(and in observation all night) he wasn't acting his normal dementia self. I cant remember what happened, but he ended up being approved very soon after I was told 'no'. My dad was only under hospice for a little over one month. So even the hospice opinion almost got it wrong. I knew my dad was getting bad. not knowing HOW to eat, sleeping and unresponsive. saying weird words garbled. overall pale and shrunk looking, ill.
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Lostinthemix Sep 2018
I am so sorry for you both. Nothing can describe it. EVERY.SINGLE.DAY is different. You would think they would know that. I depend on someone in their position to guide me and work with me.

My daughter, who's helping me, made a comment the other day after her grandmother asked for help getting up, "Do they just sprout legs when wanted? ". Pretty much how it works here. Still shaking my head about that incident.
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I said, in my opinion, her Dr has washed his hands of her. We were calling her Dr about getting some more assistance here, like a nurse, or some other person, that can check her vitals occasionally, but her Dr feels the need to see her again first. Getting her to see the Dr is a real chore and again, in my opinion, don't think it is necessary as she is not sick but is progressing. I know hospice is separate from the additional help. I also know that I am unable to do this. We have some one coming in 2x per week to shower her, cleaning and companionship but I don't believe it is enough. The neuro dr she has seen seems to think she has a mental disorder on top of her AD. I am completely overwhelmed by everything that is happening and has happened and I have grown to understand my wishy washiness. THIS IS A WISHY WASHY DISEASE. One day she is up, a second later she acts like a true person suffering from AD. Not sure what else you may need? Enlighten me, please? if it's at all possible.
Thank you.
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Scaredtaker avatar
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Scaredtaker Sep 2018
Going through this now and I had hospice nurse manager meet with us in hospital for my mom. I had her case reviewed - it was approved - and the hospital wanted her out. She has vascular dementia which was progressing as it does, and with a compression fracture of the spine - hospital psychosis. Hospital could not get her out of her state of mind and into one whereby she could participate in rehab...they said take her off all heart meds and take her home - or if we couldnt - send her to nursing home.

I contacted our local chapter for ALZ/Dementia and they are incredible in terms of being advocates and providing people to speak with to help navigate this rollercoaster.

Got her home - My dad is resistant to death and reality. Family coming in and going back and forth from "allow her to go" to "panicking and trying to take over my role" as a caregiver and med proxy.

As you mentioned - one day they can be up, the next day: down. This is not a linear upward trajectory to recovering - but rather an erratic line of progress and setbacks.

That is so frustrating for all.

I wish I had the answers but I am hanging in there in solidarity with you. Our elders need advocates because frankly, there are few and far between and the elderly are treated as a burden to many in the medical field and community.

We need more services and preventative programs - awareness and radial compassion in order to experience changing the current mindset.

I try to put myself in her place and when I do - I realize I have a task - to protect her rights and dignity with my big mouth. I am a pitbull on the pantleg of those who toss the elderly aside as if they are nothing.

You are a voice for the voiceless - the hands and feet of the bedridden - hang in there
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When my mom began palliative care at home the nurse asked me whether I would be surprised if mom died in the next six months, there is a big difference between needing additional supports and needing hospice, where do you think your mom is at?
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That's strange - a doctor who's washed his hands of it? Obviously, something's missing. You don't give us much info. It seems that the doctor would suggest hospice, if she's in the last stages of life. When my Mother was noticeably losing weight, incontinent and sleeping too much, I called. They sent a representative who evaluated her and accepted her into the program. Call them! They are there to help and they'll give you the advice you need.

I don't know why this won't post, but I'll try once more.
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Lostinthemix avatar
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Lostinthemix Sep 2018
She (my mil) had been evaluated and we had been told at the time she didn't qualify because she was still mobile and could feed herself. She still does both. My initial question about hospice was due to my reading. Several answers and it seems to me there really is NO BLACK AND WHITE answer. I guess due to the kind of person I am, that is unacceptable to me. After this much time (since November 2017) I would have adjusted and learned what an unending roller coaster ride this has been.
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OK - it posted.
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