My aunt is 76 and one month ago had a stroke, resulting in anomic aphasia and mobility issues. Anomic aphasia is the kind of aphasia which is mild, but the person often has trouble choosing the correct words or numbers. They will substitute other words or numbers instead of the ones they really mean. The problem is worse when she is fatigued or anxious.
Before her stroke, we wanted her to get some extra help. She was not keeping her apartment neat, and while she was still driving, we felt she needed to stop doing it soon. She also had a drinking problem which alarmed us. Independent all her life (never married, no kids) but living nearby, we felt it was time to hire some help for her or explore senior living. We also suspected her health was poor (she fears doctors and would rarely go). Naturally, she was resistant to changing her lifestyle.
Before we could act, a disaster struck: her basement apartment flooded along with many other units in the complex. Turning misfortune into catastrophe, an overeager crew swept in and upended all her belongings, ripping out the carpet and insisting she had to vacate immediately. This caused her great stress, and although we secured a new empty apartment for her, she had a stroke just as the cleanout was concluded. She was found in the parking lot of her complex by a neighbor, who called an ambulance 10 minutes before family were scheduled to meet her. By the time we tracked down what hospital she was in, the hospital had already contacted her mentally unbalanced 78-year-old sister and labeled her "medical proxy/contact" which meant that we (her nieces) couldn't get information on her until we explained the situation begged them to add us to her HIPAA list.
My aunt fortunately seemed to bounce back from the stroke better than you'd expect and even her aphasia began to improve, but she also suffered memory slips (as you do with a stroke) where she forgot recent deaths. She also performed poorly on BIMS tests, saying "1920" instead of "2021" and the like. (Bringing her photos of her late cat, I asked her what year she had gotten the kitty; the correct year was 2007. She answered "1907." But when I asked what month it was - September - she said it was January.)
The whole time I visited her twice daily in the neurology unit, no one really cared to talk to me even though I explained who I was and tried to offer information about her baseline cognition (garbled words and memory issues never being a noticeable issue before the stroke). Nobody on the floor seemed to really care, just giving her BIMS tests and then pushing her down to the discharge unit -- as COVID and staffing issues were making hospital and rehab beds scarce all over town.
She didn't have power of attorney signed, so we explained the paperwork to her as best we could and tried, tried, tried daily to find a notary at the hospital. Because of COVID visitation restrictions, we just couldn't bring one in or find the requisite number of people who would be witnesses.
After a week, they seemed anxious to discharge her to rehab, and because we had no safe place for her to stay, she would have to go to a nursing home... the only bed left... the WORST nursing home in the region, currently under investigation by the state. Supposely, it took her Medicare PPO for 1-20 days.
We were agonized over what to do. There was no safe place for her to go, and no place she or we could afford, other than this rehab bed at Horrible Home. She seemed to be improving, so we were hopeful we could get her through rehab there and then find an alternative. I explained the situation to her, promised I'd be following right behind, and then raced across town to Horrible Home. Maybe they could help us find a notary there during the admission process.
When I got there, my aunt had been whisked upstairs and I wasn't allowed to follow. There was no admission meeting. Not even any paperwork!...
Little did I know that I would spend the next frantic week trying to track down anyone who seemed to know anything about her case, as Horrible Home had the lowest vaccination rate in the state (NY) and the state mandated layoffs of nonvaxxed workers. (We believe my aunt was the very last patient admitted to their rehab unit before they shut the unit down for lack of staffing.) It took me two days to reach my aunt on the phone so she could hear my voice. Meanwhile, we realized her file was being tossed from social worker to social worker, as staff left or got fired. No update on her condition, her rehab progress, anything. We were almost completely in the dark.
The paperwork arrived (including Medicaid application etc)... NINE DAYS LATER in the mail. By that time, her Medicare had already notified us of denial of further overage (the coverage ran out on the day we got the paperwork).
In the interim before it arrived, we managed to contact the state ombudsman for the county and she was able to see my aunt (I wouldn't be able to arrange visitation until the following week). She said that she had never seen Horrible Home in such administrative disarray ("they're out of control" she said). Every day, new newspaper articles were coming out about Horrible Home being in trouble.
We finally cornered one of the social workers on the phone (this after her Medicare PPO cut her coverage after 10 days of rehab) and demanded a care team update, which they scheduled, and then blew us off 3 more days until after the weekend, as yet another social worker was plopped onto the case. (This was before I had even had a chance to see my aunt.) When we did get the update, her speech therapist was not on the call (later I found out the speech therapist had left too and been replaced by another). They cited her terrible BIMS score and wanted to know what the discharge plan was, recommending memory care.
Having finally made contact by phone with my aunt, I felt that although she was having memory slips, she seemed very oriented to who and where she was, and we explained we still wanted to try to get a POA signed by her. She was walking, dressing, toileting. When I asked one of the social workers if they had a notary, they said yes, but "there's some question about your aunt's ability to make decisions" (citing terrible BIMS scores given to an anomic aphasic!) I asked to have a doctor examine her with a different assessment. I somehow managed to make contact with her actual speech therapist, who worked for another company and was understanding about my concerns about just not knowing what my aunt's true mental status was. She said she would try to administer a more appropriate cognitive test.
Meanwhile, the business office started coming after me for the paperwork, specifically the Medicaid application. I said "I cannot sign this, I am not her legal representative, and I do not attest that she is incapacitated or incompetent until I can get her properly examined." (They are, of course, trying to get me to sign everything as the responsible party)
I spoke to my attorney about possible guardianship, but he recommended we wait to see if there is some way we can arrange her to sign a POA (and she can sign her name quite beautifully!) It's a week later, I still haven't gotten an assessment, I still don't even know if a court would find her actually incapacitated/incompetent, just that I cannot get a notary into the facility....!!
I feel like Horrible Home badly screwed up by not having a proper admissions process with paperwork done at the proper time (yes, they still would have tried to get me to sign as responsible party). Why do I need POA? Because we are really not sure where she will end up in terms of abilities -- she's a tough lady and is very motivated to get back to independent
Oh, and you can't hire any home health aides anywhere, because of the COVID vaccine mandate, many have quit.
I DON'T KNOW WHAT TO DO NEXT. Seek guardianship... for a woman who may not really be incapacitated? Kidnap her from Horrible Home and spirit her to a notary? Wait for the proper, aphasia-appropriate cognitive assessment that may never come?
We want to do the right thing by her. I am willing to sacrifice my time and some of my life savings, but neither she nor we can afford assisted living or memory care (memory care which she probably doesn't really need). We want a place for her where she is safe, peaceful, and healing (and that may be a different nursing home other than Horrible Home... but she's already been refused for transfer because of the "terrible BIMS score" administered to a woman who cannot choose the correct word (and sadly, KNOWS IT! "I can't talk right" she says constantly)
She is no longer covered by her Medicare PPO and is racking up $400 a day that it seems the nursing home will have to eat because her family cannot access her finances (no POA) and they cannot legally hold a third party responsible for her charges.
Is it just me or has this whole thing been wrong from the very start? How did this poor woman end up in this situation? I would gladly file for guardianship but I don't even know if it would be successful, and also it takes MONTHS!
Having been in a similar situation with my mom, I completely understand the difficulty trying to get answers from anybody at the nursing homes. I did get to the point where I was going to just take her out and bring her home since they weren't giving her the PT she was there for - had the transportation arranged and everything - just out of sheer frustration.
I'm not sure of your lockdown rules in NY, but it may actually come down to you visiting her and "taking her out for the day" and taking her to a notary. Here you should be able to find the most recent lockdown rules regarding visitation, etc. https://coronavirus.health.ny.gov/long-term-care-facilites
I’m also scared if we initiate guardianship and pay all the lawyer fees, that they will examine her and say she is competent, which would be fine except especially with COVID and court backlog the process will take months. Honestly I am more worried about the time delay than the fees.
I’m just so incredibly frustrated that nobody seems to know or care about anomic aphasia. It’s not like I am trying to have her declared competent or declared incompetent - I just need to be able to access her finances to pay her obligations and request important documents on her behalf. Notary or guardianship? I don’t know which way to turn, and this incompetent nursing home from hell isn’t helping me (and I think they are also in their own bind because they admitted this problematic patient without proper paperwork secured… not that I was going to sign as responsible party, but at least the issue of her competence, her aphasia, and lack of POA would have been discussed).
I just skated quickly around the NYS guardianship guidelines and - https://www.nycourts.gov/courthelp/Guardianship/AIP.shtml
- looks like a promising information source but it will take longer than I have this morning. What I was looking for is something like an Emergency Protection or Emergency Guardianship Order which you would apply for pro tem, pending your aunt's recovery.
As well as stroke damage itself, it is essential to make allowances for fatigue whenever anyone's doing an assessment. As you rightly observe, her symptoms become much worse when she is tired or stressed. This will improve but it takes time and she's had only a few weeks.
I should make a list of the tasks you need to carry out on her behalf, take it to a lawyer, and see if there's a court process that would answer. She needs advocacy for medical and rehab decisions, and basic admin for finance and property, yes?
I don't know if it's any consolation but it seems to me that the entire health and social care field worldwide is utter bedlam at the moment. Headless chickens are serene by comparison. Remember: this is early days; it will get better; prioritise calm in her surroundings, just to allow the dust to settle.
PS Nobody's getting very excited about the aphasia because it's not that big a deal. If time doesn't sort it out Speech and Language therapy will help; and if anyone doing an assessment of competence isn't used to communicating with people whose speech is impaired then he's in the wrong job! Reassure your aunt, resist the temptation to correct or finish what she's saying, interpret what she has said and confirm with her that you have understood her, and acknowledge any frustration she shows. If she's struggling, stop and come back to whatever it is later - very few tasks can't be postponed until after a good nap.