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?
I’m sorry the situation is so severe. Her extra weight could also be fluid. The important thing is she is receiving medical help.
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.
"...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.
Rereading your post I ASSUMED you were talking about your wife.
But rereading it again I question that assumption.
You say you are "basically nurse and housekeeper for 15 years"
Are you housekeeper and nurse as a position or are you talking about your wife and you have taken these roles on as a spouse.
If this is your wife you are talking about my response stands.
If this a position that you have in the house then you are not going to get information from the medical staff.
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!
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.
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.
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.
You can discuss hospice with her physician, but you can also start to contact hospice companies and ask them to come do an assessment. To me it sounds like she'd be a good candidate.
Basically hospice is for people who are ill enough that it wouldn't be suprising if they passed away in the next 6 months, but there's no time limit on how long someone can be on hospice--she would probably qualify given her MS, DM, and not eating, even without a dementia diagnosis.
Hospice will maintain her on the meds she needs and keep her comfortable, but comfort will be the main goal until she passes, rather than treatments to 'fix' any health issues.
Medicare will pay usually pay for all hospice services and care supplies, but do discuss the details of that with the company you hire. Here are some tips:
https://americanhospice.org/learning-about-hospice/choosing-a-hospice-16-questions-to-ask/
Companies may differ slightly in their criteria, so if one turns you down you should still look at others. Your physician or someone in their office may know of a good hospice provider, neighbors and pastors may know. Online, Yelp and searching Google Maps for 'hospice' can give you an idea of who's local, but of course take the reviews with a grain of salt.
Hospice will send a nurse at least several times a week, and they'll be good support to you as well. Good luck.
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.