Approaching a turning point in level of care.
My personality disordered mother has been living on her own, more or less successfully, for the last decade after she made a huge recovery from a catastrophic fall that almost ended her life. Although I've had to take over all her finances because she can't remember to pay her bills, she's managed to order her own groceries and shop on websites for other things she needs. I did have to take away her visa card and replace it with one I control because she was constantly falling for scams and dubious emails. I'm well aware she's in cognitive decline. Her doctor consistently refuses to answer my health portal messages or to administer the cognitive testing I've been asking for over the last 5 years.
All of this leaves me sort of consistently fatigued of her and her antics, but since I am a very capable financial manager and well organized person it's been ok. The more emotionally damaging part of her care I get invovled with from time to time is her medical needs. She's recently become resistant to using her healthcare even though she pays nearly nothing for visits. I think she just forgets she's supposed to deal with it. She currently has a huge skin ulcer that I recently got her seen for. It's pretty infected. And I doubt she's taking her antibiotics. I don't think she bathes. I have only seen her once in the last 5 years but that's my suspicion.
Anyway. I'm pretty sure we're approaching a disaster that will change her life circumstances and I'm a complete wreck knowing that I will have to fly out and deal with her drama and trauma when it finally comes down to calling 911, having her taken to the hospital, and then me having to make a huge fuss about that she's unsafe to be discharged. I know what to do but I am dreading it so much. I'm emotionally battered and it's not even happening yet.
She's showing behaviors of advanced dementia beyond simply forgetting things. She's now hiding things, important things, from herself. Her friend who is somehow a very nice woman keeps in touch with me when she has concerns and I guess recently they spent quite a long time looking for my mom's house keys which she had hidden behind books in the office. Now she's hidden her ID somewhere and I'm worried she won't be able to be seen at her doctors appointments. She showed up to the last one without ID and they let it slide but they may not continue to. I do absolutely not want to fly to her and take her to the motor vehicles office and someone is bound to tell me I should.
I don't really have a question but I'm a mess. Any random advice or words of encouragement welcome.
18 Answers
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I spoke to my moms attorney and after discussing my concerns and her mental status they made a house call and asked if she would agree to rewrite the powers of attorney to be immediate rather than springing and mom agreed. I did not expect that level of above and beyond from the attorney and I’m so relieved. There will be a second house call when the new documents are ready. The attorney is my hero.
I’m also liking the idea of finding a geriatric care attorney. I will ask moms attorney for a recommendation when I speak with him.
First, she is not driving and does not have her license. She has a friend and a friend/employee who drive her places as needed.
Second, all her legal things are in order including powers of attorney. They are “springing” powers that since she’s not laid up in the ICU I have to have two physicians fill out and sign certifications of her incompetence. I cannot just declare her incompetent myself and force her to do anything. I do have a meeting with her attorney scheduled in two weeks to discuss her rights and my options.
Of course she should not be living alone, but people have rights including the right to make awful decisions up until the day that are legally declared incompetent. She won’t be convinced to do the sensible thing with a lifetime of personality disorder and now cognitive decline. Why would she become responsible now?
Thanks to her finally getting to her doctor in person for the first time in years she’s receiving a lovely home nurse visit 3 times a week to change the bandages on her ulcer. She’s had that thing for literally years. It isn’t going to heal.
Until very recently she has been hanging in there by ordering groceries and other items for herself online, while I do all the financial work from paying every single bill to filing her taxes. We are reaching the point where if she takes a Lyft to a doctors appointment she may get out of the car, forget why she’s there, and get lost. I don’t have the heart to let that happen so I’m now coordinating her two friends schedules to cover her transportation. And this is becoming unsustainable.
Why don’t I go in person? I didn’t mention it but I visited last summer. Checked a number of things off my list and took pictures of the conditions in the home in case I need them. I dislike both my hometown and her, so I won’t be going any more than strictly necessary. The lifetime of lies and abuse I’ve had to endure as her child build up on me quickly and I lose patience when I have to go back there, so I choose not to.
1) You might want to hire a geriatric case manager to assist you with all of this. I do think you need to go there and put eyeballs on the situation. In 5 years there is no doubt a lot has changed. Line up a case manager to participate and let him/her take care of things after you leave the area.
2) For my husband, I first scheduled an evaluation with a health psychologist to figure out what was going on with him. At that point he was diagnosed with mild cognitive impairment. Later, he went to our university brain institute and was diagnosed with Alzheimers. You don't have to go through your mother's PCP.
3) I hope she has her legal documents in place. If not, you should definitely speak to and elder law attorney.
Good luck to you and your mother!
If as you say there is an approaching disaster the best thing you can say and do when you are contacted is....She can not be discharged to home, it is unsafe. She has no one to help care for her and I am unable to do so."
If you are not legal POA that should probably be addressed. And talking to an attorney if the attorney does not think she is competent to appoint a POA the only option would be Guardianship. At that point there are 2 options. The State assumes Guardianship or you or another family member or friend can be appointed.
I have jobs I work remotely AND my Dad has funds, so being at my Dad's once a month has not been a financial burden on me, just being away from husband is hard (call every night). But worth it. My job at my Dad's is to be sure in-home care givers have the info to do their job, the house is in order, appropriate supplies are on hand (last month moved to 3X disposable underwear from 2X - must be ordered online, can't be found in stores). It is almost a half time job for me NOT being the caregiver, just the financial and overall care for my Dad (was both my parents until my mom's passing in January). I have a sister that I help financially and one that can't be stoic in the face of impending doom. Both trust me implicitly and I keep them informed.
Difficult? yes. Necessary to "be" there for some decisions? yes. Have to be mentally, emotionally tough? yes. I mentally put on armor or flak vest which I can mentally or use physical motions to replace when needed. I work to NOT take in the dramatics, not react to them, not burying stuff either.
Oh, and remember, anything you do is more than what they would have without you. It may be the only "thanks" you get. My Dad's team encourages me at least as much as I encourage them. We need to mutual support.
Sorry to see your situation but your mother is no longer safe living alone and requires placement in memory care.
Without family immediately present, contact APS for a local state social worker’s site visit and placement, hopefully not from the hospital. The worse decision is to let the chips fall where they may.
1. you need a different dr (medicare pays for home health and she does not have to remember it)
2. that ulcer is like a bed sore and it requires constant care - how does she manage to get meals? get to dr.? -sounds like she needs full time nursing care. Do you have a POA? If so you don’t need to deal with her. Just make the arrangements and call an ambulance to move her into the nursing home.
3. she is not safe alone - you can get a social worker out to do an assessment /wellness check without being there yourself and she can help you with the process of moving to nursing home.
4. Forget the id- just make sure you have copies of her health and medicare ins. cards…you can call for replacements if you have a POA…if not give that task to social worker
5. hire an elder att. in her area to assess her financial ability so you can employee an nursing home that can be managed. You can also hire the attorney to do all of this.
6. Drama takes two to escalate. You do not have to be a participant in any drama. Think-just deal with facts calmly in a business like manor without her. The attorney or social worker can represent her if needed.
Secondly, if she is hospitalized, I assume she will be covered by Medicare, and I am reasonably certain that the hospital is not permitted to discharge any Medicare patient against their will. They will do their best to free up the bed, but if you have not identified a safe discharge destination for her, you can simply tell them they will have to wait until you have. Be prepared to stand your ground.
Re DMV -- does that mean she's still driving? If so, taking away her keys will be less traumatic then an accident in which she kills or injures someone else. (Harsh and easier said than done, I know, but I feel pretty strongly about this.)
Lastly -- and I know you don't want to hear this and sounds like you live pretty far away -- but if there's really no one else, I would highly recommend you lay eyes on her. Seeing and speaking with her in person will tell you a great deal.
So sorry you are going through this.
Clearly she can't live alone, and it would be better to get her into a facility before an emergency happens. They will do their own evaluation, and after that, maybe her present doctor would write the order that she needs to be admitted.
Just a few thoughts, and I wish you luck.
When it does come, that is the time to jump in quickly.
As soon as she is hospitalized go there at once.
#1. Demand to speak with the Social Worker. Let her know what you have told us. She could have either TBI, mental illness, Dementia or any combo and let them know that you have never managed to get her or her MDs to assess which. Tell them she needs a neuro psyc eval.
Let them know she is unsafe at home but you have no managed to get her to understand this, to get her evaluated, or to get her placced.
#2. If you want her under guardianship of the state then don't take on POA if you haven't already. I think this would be the correct move for her.
I think you are looking at "the call". It will come from hospital (where mine came as regards my brother) or from the coroner. In that latter case she will have avoided the few years of misery in a nursing home where she will be very unhappy by having instead got sepsis or some other unaddressed problem that killed her.
There is no good answer in any of these cases any more.
You aren't there.
I personally would turn this WHOLE mess over to APS now.
You have chosen not to for your reasons, and you already know what's coming.
I am so sorry. Aging in America. Not only not for sissies, but not for anyone who can find a way to avoid it in time.
Best out to you.
I am 100% ready to immediately pull the trigger this time, whever the call comes. I will make it clear to her sisters this is non-negotiable, although at this point they may have finally realized what I'm dealing with. She does have mental illness, which made the line between outright lies and confabulations nearly impossible to distinguish for a long time. It's clear now.
I do hope we can avoid the nursing home, both for her sake and for mine. But I will put her in one in a heartbeat before I bend over backwards arranging tens of thousands of her money in the facade of independence again.