Confusion about Ability to Move LO

cbmo

Our 78-yo mom was diagnosed with ALZ in February and has gotten progressively worse. A few things about her:

• She lives alone
• Her short-term memory is completely gone
• She has been very angry with us for the last year for "making" her go to the doctor
• We removed/sold her car from her in August at which time her anger escalated and she began sending mean/hateful texts about wishing she had never had us (upwards of 60-75 texts per day) - this took away her ability to get food as she ate fast food every single day (2-3x/day)
• We were able to get home health care - who comes 4 hours/day - 3-4 days a week, however, she won't let her do anything so her needs are still not being met (house is messy, no food in the house, may not be taking pills correctly - although we do deliver them to her once a week in a pill box)
• If we had to guess - maybe Stage 6 (?)

In the last week or two we are noticing that she seems more and more confused and is sleeping more throughout the day (most nights she does get up a couple times a night). Her texts have gotten more gibberish and mostly just swearing, but she often says she hopes she dies soon.

Here is where are confusion comes in. Because she has refused to look at AL/MC facilities, her doctor has said that once she has an "incident" she will not be able to return home. We are feeling like her anger issues and her texts about wanting to die would warrant an EMS call (since she is refusing a visit to the doc). Our assumptions are this would result in a 3-day geriatic psych hold which would then result in a doctor not releasing her to go home alone.

However, we have also heard our hands are tied if she doesn't want to leave her home and that no one can make her stay in a facility if she refuses. My question is how would that work? If we refuse to pick her up and take her home (because we are 100% sure she should not be living alone), wouldn't she have no other option but to remain at the facility?

We are exhausted with trying to keep her safe. Any advice is appreciated!

BassetHoundAnn

I'm sure others can weigh in with more definitive answers than I can provide, but my experience is that when it comes to discharging patients who are unable to continue living alone and caring for themselves, hospital social workers will try to work with families to find a discharge plan to send them to the safest environment possible based upon the doctor's recommendations. That can mean different things at different hospitals. Social workers will sometimes do what is most expedient to free up the hospital bed, and may send a dementia patient to a rehab facility for a temporary stay. Or they may pressure the family to stay with the patient or take them to their home. 

An important factor is whether you have an activated medical power of attorney for your mom. If you don't have those documents you absolutely have to get them. That would involve having a signed medical power of attorney and a statement of mental incompetence signed by two doctors. With those documents in hand you can get your mom into a care facility even if she doesn't agree. 

Otherwise you may need to go the more roundabout (and expensive) route of going to court to obtain legal guardianship. 

A worst case scenario: a lady I know suffering from mental illness and dementia suffered a stroke. She was homeless. She was hospitalized for several weeks. During that time hospital social workers were in frequent contact with her relatives, encouraging them to file for legal guardianship. All refused--because all the relatives were overwhelmed with caregiving for other family members with severe dementia and couldn't take on someone else, especially a relative so severely mentally ill. The family had hoped that hospital social workers would contact adult protective services and get the state to pursue guardianship. That didn't happen. The patient was ultimately discharged to continue living on the street. 

How much help you'll get from hospital social workers will vary a lot. Many are helpful. All are overwhelmed. I strongly encourage you to get an activated medical power of attorney in place if you don't already have one, and start shopping for memory care facilities that would be a good fit for your mom. Good luck! It's a hard, hard journey. 

BassetHoundAnn

One more thought that occurred to me to add. Hospital social workers, at least those I've encountered during my mom's hospital stays, have been most adept at helping patients get into temporary rehab or skilled nursing facilities. Memory care/assisted-living residences are not in their wheelhouse. 

During my mom's last hospital stay I had arranged for her to be discharged to a memory care facility. The day before her discharge the facility decided her care needs were too great and they didn't want her. This left I and the hospital social worker scrambling to find her a new place to go to. The doctor's order was that she needed to go into memory care. But the best the social worker could do was to give me the phone number of an outside paid consultant similar to A Place for Mom. 

Many assume that hospital social workers can pull strings, make calls, and arrange care accommodations that may be out of the reach of the family, but unless it's for rehab or skilled nursing that may not be the case. At least I haven't found it to be so. 

storycrafter

Brainstorming: The hospital may know of a hospice or palliative care that would take her. If they can't refer you to one, search them out yourself. Not every hospice is the same. Many will take on patients in various conditions and will be another set of eyes and source of help/information.

Check in on resources via your Area Council on Aging. Sometimes there are very knowledgeable case workers available; check local Alz support groups with informed people who know a lot about how to proceed in tough situations. Also, call the Alz number and ask to speak with a trained Care Consultant.

cbmo

Thanks so much for your comments. We do have the DPoA and we also have a room reserved for her at a local facility (that was assuming we might be able to get her hospitalized in the next couple of days so fully recognize we could lose the room if she doesn't move almost immediately). We are also working to get the letters of incompetence and are fairly certain that can happen quickly from her neurologist and her primary. I wouldn't imagine that a social worker would recommend family care as an option as we appear to be the ones that "trigger" her anger episodes but then again, it has seemed a very windy road as we navigate alz/mental health.

Cynbar

Yes, it is possible to place a LO against their wishes, IF the doctor has certified in writing that your LO can no longer make her own health care decisions. It doesn't require a hospitalization, although that can facilitate the process. You have done the most important piece of this puzzle, you have made a plan for her.  It wouldn't hurt to call 911 and have her transported to the ER, where mental health professionals could evaluate her suicidal statements and determine if she is really a danger to herself. If she is not, there probably wouldn't be any reason to admit her. I have not had to arrange placement myself, but many posters here have and hopefully will chime in. Basically, it seems to go like this. You arrange the move-in date and time. Family thinks of some subterfuge to get her to the building, something like going to lunch or a tour. Then, the staff takes over, and the family leaves. Staff should have a lot of experience helping a new admit who thinks they are fine and doesn't want to be there, it's how many of their residents arrive. Talk to the facility about your particular situation, see what their suggested plan is. Remember, it's about your mother's safety at this point, not necessarily her happiness. But once the doctor has said she can't make her own decisions, it is no longer her choice.