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I chose home hospice for mom after her last hospital visit for COPD included a 30hr acute steroid induced psychosis. I had it set up for her to go to rehab, and from there was planning to have her stay in the nursing home, but I chickened out. She was so confused, and having been in restraints for so long, was sure "they" were trying to kill her. Hospice said they would cover her for the COPD, but her Medicare benefit remained in effect for the CHF, GI bleed....on and on. Her list of ailments is long, and in the past year we've been in the hospital over ten wks total. I told the hospice inception nurse my main concern was advanced undiagnosed dementia. Yes it's my fault three years in its undiagnosed, but she wouldn't see the neurologist for the first two, and the last year we kept missing appointments due to hospitizations. I tried to get a consult in house, which never worked out. I chose home hospice because they said she could still get care for any condition other than COPD, this proved patiently untrue. Even though the social worker has called the neurologist office to explain how to bill, they refuse. I have called various other doctors, they refuse. Three years into caregiving, and three months into home hospice, I am at the end of my rope. Hospice offers respite care, but mom says no so my hands are tied. I was also told she could easily come on and off hospice, but as she is on O2 24 hrs a day, that turned out to be just another false selling point. A year ago I would have been on the phone to CMS, the state insurance ombudsman, the TV news, anything to undo this situation. But I am alone, physically and mentally exhausted, and spiritually bankrupt. A parent who had been riddled with fear and anxiety for a lifetime gets even more so with dementia. And a parent who has been emotionally abusive does not lose that skill just because they wake in the middle of the night and don't know their own bedroom or daughter. All the rules in place to protect seniors right are well intentioned,but as far as I can tell, no one protects me. The only light I can see at the end of the tunnel is a half full bottle of xanax. I can just go to sleep and let the state deal with her.

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What you are describing that hospice told you sounds very much like palliative care, not hospice. Did they perhaps describe them both and you got confused? (Perfectly understandable under those stressful conditions.)

As you are finding out, hospice only provides comfort care. If the patient needs to continue something, such as oxygen or certain meds to prevent pain or anxiety, etc. they continue them. But no meds that are intended to "cure" anything. The expectation of hospice is that the person is dying and is beyond "cures."

I really can't understand what you think the benefit will be in having a definite diagnosis of dementia? There are no cures, there are no effective treatments, there are no extra benefits from insurance, etc. Why put your mother through testing at this time? I can imagine that an ethical neurology clinic would not want to test someone on hospice.

You get to decide if you want to use the respite benefit. Decide. Don't let your poor befuddled mother make this decision. For you to get a break will be good for both of you.

Your were planning on having mother stay in a nursing home, but you chickened out. Sigh. Stiffen that backbone, realize that you are the one who needs to be in charge, and reconsider the nursing home option. Hospice can continue there.

I'm not suggesting abandoning your mother. Just make decisions that will be good for both of you.
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I think one of the things that is blocking you is allowing a person who has the reasoning capability of a 3 year old to tell you what you can and cannot do. You have to be the adult. If you want to move your mthr to a nursing home or other facility, you can - it's allowing her to move. Those folks then watch her 24/7. Tough if she does not want to move, you are evicting her. The trick is to find a place that is affordable, or to have mom qualify for Medicaid and the home at the same time. Talk to a person at the NH you want while you are using respite care.
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I hope you were being facetious regarding the xanax, and there are many great solutions listed above. I don't see why the hospice medical director orcyou mom's PCP can't diagnose the dementia. With end stage COPD that is enough of a diagnosis to justify Medicare paid Hospice care ( oxygen 24/7). I would try to have her placed in a freestanding hospice center, or definitely seek respite care for your own mental health.
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there is good advice here - I agree with 1) take your respite and 2) place her in a hospice facility. You are not abandoning her - you are getting her to a place where she can be taken care of as she needs. You will still be overseeing her care and able to take time for yourself. No one says you have to kill yourself with home hospice. Good luck to you.
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Sunny - my understanding is that the neurologist needs to see her Mom to get the diagnosis of dementia on the records. Without it being formally diagnosed, it's just her word against Mom's that Mom has dementia, though it should be pretty clear to anyone who sees her, judging from the OP's description of her mom's behavior.

Alldone - take the respite care, not the Xanax. Get the neurologist to see Mom and disregard Mom's refusal to go - just take her there and get her evaluated. And then check into placing Mom in a facility. You don't deserve this. You can still go visit her and spend time with her, but don't need to tolerate the 24/7 emotional abuse and anger from her. I know it's hard - many of us here have had to make this tough decision - but there's a time when it's appropriate, and you've hit that time, I think.
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I agree, stay away from the pills. This situation is workable. It can be resolved, take faith in that. Get some respite care so you can clear your head and make some decisions.

What are you hoping to gain from a Neurologist? Your mom qualified for Hospice, right? What benefit is seeing the Neurologist? I don't understand.

People with dementia often aren't able to make rational decisions. It sounds like you have done a good job for your mom. I'd try to get some support from friends, support group, etc. to help you through this. Take care and let us know how things go.
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I am sorry you are going through this. My thought is that what would having a diagnosis of dementia achieve at this point? You know she has dementia and you know how it manifests in her. Is there really a need for diagnosis? It is not like there is a cure and treatments to slow down the progression probably are not going to make a difference to someone on hospice.

Now, it would be useful, from what you describe, to have her on anti-anxiety medications. Maybe Mom needs some xanax (but not the whole bottle, please).

You wrote "I am at the end of my rope. Hospice offers respite care, but mom says no so my hands are tied. "

Not her choice. Unless indentured servitude became legal again when I wasn't watching, she can't dictate the conditions of your involvement in her care. Get respite care, take a break, who cares if she "says no".
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Step away from the Xanax.

And call her bluff on the respite care. Seize it. Plan it. Do it. How's she going to stop you - take up her bed and walk? You need that break NOW. Call hospice back and make a date today.
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