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I've basically been nurse and housekeeper for 15 years now. She just turned 62 and I still have a 50 hour a week job. Wife has diabetes, MS and dementia. Not once has her doctor ever discussed dementia with me, even though for the past year she's had two office visits and was not able to communicate anything more than nonsense. For the past year, she can't work the TV remote and get to the bathroom. For the past three weeks she has been unable to communicate more than a few words, usually just random words and just sleeps all the time. She has been refusing to eat for three days. It's way past the point where she is able to travel for a regular doctor visit and she would be absolutely terrified if I hauled her to the emergency room. What options are there?

It's not as complicated as some make out. You literally just call the hospice agency of your choice and ask them to come out to do an evaluation of your wife, to see if she may qualify for their services.
Once hospice makes their assessment and if she qualifies, they will contact your wife's doctors and set things up from there.
So do your research first as not all hospice agencies are the same and then make the call. Hospice is available 24/7 so you can call them literally anytime.
Best wishes.
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Reply to funkygrandma59
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Endo,
I feel your desperation, but in honesty it is for YOU to discuss this with the doctor.
As husband you are her next of kin. That makes you the person who is informed and involved in her care. You do not say that you and wife have discussed her wishes for her future given the illness she has?
As she is someone diagnosed with MS I would assume she has told you and her caregivers what she wants in terms of heroic treatment and what she does not? I very much hope so.

In the New Year it is time for you to reach out to doctors:
Ask them what your wife's diagnosis and prognosis is.
Ask them if she is now able to access Palliative or Hospice care for her end of life care.
Ask for their advice, their Social Services contacts.

You may or may not be able to continue in home care of your dear wife; you aren't god. You have limitations. If you cannot continue with home care, then she may need to apply for financial help through Medicaid and you will need to protect your own assets for your future care. That may mean you need the help of an Elder Law Attorney to apply to Medicaid help for your wife.

I am so sorry you are going through all of this. It seems you are alone and without family?
I am so very sorry. You tell us she would be terrified if you "hauled her off " to the ER. But in some instances that is the only way to get care; you will be there with her to reassure her. And you are only a human with human limitations. You yourself now need help and care.

I wish you the very best. I am so very sorry for all you are going through now, and for your dear wife; she's lucky in not so much OTHER THAN that she has YOU at her side still doing your best for her. You can do no more than that.
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endofrope007 Dec 31, 2024
Yes I should have thought to discuss with the doctor, but always thought there was a little more time to worry about such things. I'm not so much worried about myself, kind of irrelevant at this point as the damage is done, but more about how to navigate this with minimal abuse to my wife. She would not want to be in a facility, no matter what. I don't expect anyone to come in and make it easy for me, but I could be a better nurse. It's been difficult to learn to be patient, and I'm sure I'm making many other mistakes. Some things simply require experience. And no, there is no family to help.
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Hi endo, just wanted to say hi, and I'm so sorry you and your wife are going through this, please keep us posted on how things are going and what you decide on the hospice. Virtually your not alone, many here have, are, or will be were you are now. 😔🫂🙏
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You mention she also has thyroid disease. The meds for thyroid is weight-based. If she's lost/losing a lot of weight (and is still taking the meds) it may now not be the appropriate dosage and becomes a circular problem. She's got a lot going on and I'm sorry for this complex situation -- but if she's now only 65 pounds you must get her appropriate care at the ER via ambulance. You meet the EMTs at your door and explain that she will be very frightened (and give them the low-down on her other health issues) and they'll do their best to work around that.

"...at the last visit in October there was a clear understanding that she was no longer in charge."

This is not how it works *legally* in the healthcare world. Once she is handed off to another doc or facility (hospital), they may require the PoA paperwork from you. I hope they don't, especially if you are not actually her MPoA. I hope it all goes smoothly.
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endofrope007 Jan 3, 2025
She has Hashimoto's, supposedly. The levothyroxine basically does nothing for my wife. I suspect it is not as simple as thyroid disease given her other complications. It must work for some people.
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I took my wife to the hospital. They sent her straight to the ICU. The setback is due to high calcium and failing kidneys. They brought up hospice before I could ask as there will only be further setbacks. She weighed in at 76 lbs (lots of boost and cheese cake after her extreme low weight months back). This is excruciating. Thank you so much to everyone who replied to my post.
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97yroldmom Jan 3, 2025
Thank you endofrope for letting us know you and your wife now have help.
I’m sorry the situation is so severe. Her extra weight could also be fluid. The important thing is she is receiving medical help.
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Contact the Hospice of your choice.
They can contact her doctors and get the necessary paperwork.
I presume that one of the doctors is a Neurologist. If so I am very surprised that Dementia has not come up in any of the visits.
If she has not been seen by a Neurologist I understand why none of the other doctors has not mentioned it unless they have ordered the battery of tests that are normally done.
Even her Primary should have done the "annual mini mental exam" that is typically part of the Medicare Annual Wellness Check.

Please contact a few Hospice and "interview" them and each can do an assessment.
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Reply to Grandma1954
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You can still call hospice and discuss her situation. If your wife has insurance, the plan should have hospice coverage.

Medicare does cover hospice at age 62 in some circumstances. the hospice agencies will know how to get paid. Call more than one to compare services.

I am sorry for your wife’s condition. She has been lucky to have your care.
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Being down to 65 pounds is a medical emergency. Get her to the ER now. If she gets terrified, they can sedate her. She may be past the point of even being aware of the situation. She needs full-time care, either at home or in a facility, and you can't do that while working 50 hours a week. Her needs sound complex, so just go NOW and get her a full assessment and a care plan going forward.
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endofrope007 Jan 3, 2025
Working or not working is not optional for a lot of people. That is the only reason she has decent insurance. It is also one of the only lifelines to sanity for me, regardless of the toll it takes on my body. But I do appreciate your reply.
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I’m so sorry but I’m glad she has been fully evaluated and that the hospital is suggesting hospice as the reasonable next step as you intuited. I wondered if she was consciously choosing to give up by not eating because she had had enough of the suffering. Take care of yourself, too.
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Reply to ShirleyDot
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Is it possible that you are not her MPoA or Medical Representative and this is why her medical team cannot legally discuss any of her private medical information with you? This is a thing. Spouses don't get to manage and make decisions for spouses just because they're married. It depends on the clinic, the state, etc. so it can vary. You can ask her clinic, nurse, doctor this question directly. Depending on their answer, you may need to consider guardianship.

Is her regular or main doctor a GP (General Practictioner) or Family Practitioner? Does she see a specialist for her MS? When is the last time she had an exam or medical test of any sort?

If her usual medical team doesn't seem alarmed that she's stopped eating (and I presume drinking, too) I would call 911 and have them take her to the ER. Even if she's terrified, she needs an accurate diagnosis. 62 is way too young, and there are many other medical conditions that can create dementia-like symptoms, some of which can be treated. They most likely will not test her for dementia in the ER but they will give her an IV and do other testing to discount other causes of her symptoms.

THEN you will need to find a new primary doctor (preferably an Internist) who is more proactive and responsive to do the cognitive testing (maybe a neurologist but this will probably involve imaging).

I wish you all the best outcomes as you work to help your wife. Also, please do as much self-care as possible so you don't burn out completely while caring for her. And, bless you for caring for her!
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endofrope007 Jan 1, 2025
It has only been the past few days that she is sleeping 23 hours a day and refusing to eat. She has been getting a full range of blood tests every 4 months for the past 3-4 years. Over the past year she has been wasting away from 95 down to 65 lbs, in spite of taking in enough calories. I've seen periods of delirium with various causes, and lately with a UTI about a month ago which was treated. But the overall mental decline has been long term. Cognitive testing would be futile at this stage, I'm not sure she can understand what I'm saying to her most of the time. But yes, she has been tested, tested, and test some more.

As for the doctor, at the last visit in October there was a clear understanding that she was no longer in charge. He spent over an hour with us. And over the years the doctor has discussed her care with me privately many times, so I don't think that is the issue. But the focus at the time was on her dire physical condition and the cognitive problems weren't really discussed. It kind of got lost in the myriad of her other problems; type I diabetes, broken hip and other bones from falls, MS, neuropathy, thyroid disease, low sodium, osteoporosis, etc.

Apparently this wasting away is not uncommon with a lot of conditions like cancer, ALS, dementia and even MS. Cancer can be ruled out, and from what I've read in those other cases the exact mechanism is not well understood.
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