Difficult decision during COVID crisis for blind, anxious mother...

Uunless your mom has been declared incompetent, this is HER choice.

You need to convince your mother that she will get better care at the new facility.

What a hard situation! I’d certainly encourage mom to try the new place. There’s no sign the old one will improve

Take Mom to the New Facility.  One boo boo too many at the other one; next time then what?

Good luck.

Here are your order of priorities...your own health; your minor children; your spouse and marriage. Your mother has a whole "system" to lean on and she has not been declared incompetent.

Your children don't have anything to fall back on if you and husband get sick. Take care.

Moms competent. She may have panic attacks wherever you put her. Have you talked to anyone about having someone come in to teach her how to deal with her blindness? She is only 66. She needs to be taught to do for herself as much as possible. Call you County Office of disabilities. See if there is a training program for those who have recently become blind. Your State should have a Dept too.

Your mom is 66? What was her functioning like prior to her becoming blind?

Dear RPcaregiver,

Good points. I've moved family from a bad facility to a good one and wished I had done it sooner. That was my experience. This is hard and COVID-19 is just making it more difficult. Bless your poor mama.
My mom is also in an skilled nursing facility. I don't want her there either. Waiting for her amputation to heal and wound close so we can possibly move her out. She cannot see well either and is getting depressed. I'm with you friend. I'm sorry.

gratefultoday

Sorry, I can't see where it says - Mom is competent? Or Mom is not competent?

If she is competent, even though it's still a difficult choice it isn't yours to make. You say they "allowed" her to make the choice, last time: again, if she's competent there's no "allowed" about it. It was her choice.

Also, I'm curious: what assessment has the new ALF done? Have they met her?

What do the staff who've been with her for the last week advise?

RP, your response to CountryMouse's post cinched it for me.  If this were my mother, I would move her.    There's no guarantee of any improvement at the old facility, and it may even get worse if they become more complacent than they already are.

I would have a serious talk with the DON and Admin of the new facility, and even ask if they can assign someone special to assist Mom in acclimation, and volunteer to pay extra if you have to.   

And if you do move her, after she's settled and life is easier for her, I'd consider reporting the old facility.   What you described in terms of sanitation is inexcusable.

I think I might be a bit muddled - what do the staff say at the Behavioural unit where she is now? What's their assessment? - they're not the same people who think it's okay to leave vomit where it is, are they.

The thing is. You may be the only one she's got. And she may demand that you 'talk her down off the ledge.'

But what's the good of that if all the sacrifices you make for her don't help her? That's why I asked what the unit is saying - what's their assessment of her care needs, where would *they* recommend she go?

Spammer Eunicnoah has been reported, on this and on the other threads.

RP, thanks for answering my question.

So, your mom has serious, longstanding mental illness AND she has gone blind.

Her mental illness is the first and primary issue and needs treatment before anything else is addressed. Keep her in the behavioral health unit until they have her medicated to where she can function. Placement depends upon THAT level of functioinng.

I suspect that most of you don't understand RP. Mom should have ongoing support from Lighthouse for the Blind or a local training program. She should have had a Seeing Eye dog. Her suicide attempts may preclude her from qualifying for a dog, but this should still be investigated. There are support groups for RP and she needs one. She needs a voice controlled PC that will let her make and receive phone calls, browse the internet, get her news, listen to books, etc.

ANY ALF should have the training to set up an environment for her that is safe. They should know to get pictures of her room as it is, and arrange things in exactly the same way. She needs ongoing OT with a specialist in low vision to adapt and support her so that she can move in her environment. An OT can be brought in though home health, even with COVID ongoing. Medicare is more liberal about paying for home health since most out-patient faciities are closed.

OT will not only help her function in her new home, they can also teach her hobbies that she can do even with her loss of sight. If her hearing is good she can even learn to play a keyboard. There are many types of crafts that she can learn to do. Being completely alone and blind is more frightening and stressful than most people can imagine. That by itself will cause severe depression and can cause suicidal ideation.

Is there a close friend or family member that Mom can live with instead of an ALF? Having someone to be with who cares about you makes a huge difference. Can you hire a private companion a few times per week? Someone already on the staff? It's expensive, but Mom needs to be less frightened. Us Boomers don't like to admit we are scared of anything, but fom what you have shared she is literally scared to death.

All things considered, go back to the AL unless it was truly negligent. Your Mom’s blindness and her anxiety over it for the two biggest factors here. The familiarity that she was able to establish at her AL is valuable. Also given the isolation practices that are going on at every AL, she would not have the extra attention of the staff needed to familiarize herself with brand new surroundings.

Consider what you would do without COVID-19. Is she safe in her old ALF? You have communicated that she is not. Will she need to adjust to a new ALF? Most definitely. Old place or new place, both will probably have her on quarantine for 14 days. If you want to change ALFs, talk to your aunt and social work about making this happen. While she is in the Behavioral Unit, go ahead and get her place in her new ALF set-up: furniture, belongings, schedules... When aunt is released, everything will be ready in her new place and we pray she will do better.

Go to the new ALF, given the med problems at the old one. My mom is in ALF and since COVID, the workers have gotten lazy. Sure, they are doing more, but that's just the way it is. It is their job.

Under no circumstances should she go back to the ALF she was in. I would most definitely report them to the State as well as the Federal governments. The lack of appropriate care is inexcusable & will (perhaps already has) result if not in her death someone else's.

Frankly, I'm surprised any ALF accepted her with her mental issues. Most don't want to have to deal with residents with such problems or who "create" problems for the facility. In fact many places will get rid of their "problem" residents by creating a situation where they can legally send them to the mental health (locked) ward of some hospital & then refusing to accept them back. They aren't supposed to do this but the state only "slaps their hands" so to speak making it the easiest way to solve the issue.

Dr. Benshir's advice was extremely good. I suggest you seriously consider it. There is help out there & your mother most definitely needs all she qualifies for.

If you are her designated Power of Attorney & you allow her to go back to the ALF you will not be acting in her best interests. If you are not her POA has she designated one?

There are plethora of complex aspects to this situation that revolve around her mental status & her blindness. I would think a guardian needs to be appointed for her. I highly suggest you consult an attorney who specializes in Elder Law & discuss this with her/him.

Having taken care of my mother for over 12 years, I am aware that most ALF will not meet your mother's needs & they will charge the proverbial arm & leg whether they actually provide everything they say they do for her or not. If I had the chance to do things over, I would have done things radically different. I would have kept her in her own house even though I realize it is often a problem getting reliable help. I'd do this because I don't know of a place where she would get the care I expect for the money being charged. I would set up a hidden security camera system so I could see how she was being treated, etc. I would even do that if she had to be in an ALF.

It sounds as if you have no other family members helping out, which is not unusual. Neither of my sisters were involved except to criticize me. One was too far away & the other one doesn't drive. I kept meticulous records of how all Mom's money was spent down to the penny so I could prove where it went. Such a hassle.

My mother (Iike her mother) became increasingly demanding of my time - wanting me to be with her much of the time. I couldn't because for a little while I had a job (because I needed the money) & I had Mom's properties that needed to be maintained because she'd neglected keeping up the annual maintenance & the yards had to be kept up to city standards. Frankly, it was pretty awful because I had lived 81 miles away before I moved down to be with her & I had a house with property that needed taken care of.

But that's not addressing your dilemma.

Checking into the organizations Dr. Benshir mentioned is a good start.

Being a caretaker is an emotionally taxing job even when the person being cared for only has basic needs. It isn't easy watching a parent physically (& mentally) change from the vibrant person we've always known to a frail individual who is headed toward "the end of the line". I lost the mother I knew & loved years before she actually died. And by that time I was physically & emotionally devastated.

So, please take my advice & make it a priority to take care of yourself above all else because you can't help her or any other loved one if you don't.

Best of luck

Why doesn’t she have an emergency med prescribed for her panic attacks? Or ideally, before her panic attacks ramp up too far? I feel so bad for her, not knowing where anything or anyone is. The least they can do is keep her calm.

A medication evaluation is in order for starters.

I am blind so I have some ideas that may help. First of all let me say I think you should strongly encourage your mother to move to the new alf. I have read some articles that state the alf community is unequipt to handle the needs of a blind individual. That being said I see somme options for you

Every state has a program for people 55 years and older that are blind for independent living skills. They can help her adjust to her blindness, work on mobility, work on adaptive ways for living with vision loss, and more. They can also help her find out ways to partake in recreational activities.

Are you aware of the Library of Congresses program for the Blind? The national Services for the Blind and Physical Disabled provides books to listen to. They have a branch in every state. You're local Lighthouse or Department for the Blind should have this information. The Department for the Blind in what ever form it is called in your state has the most knowledge and offerings for the blind. Ot may or may not be covered by insurance but the programs from the state are most often at no charge. They should be able to come into the location where your mother is at and train her.

Another thought I just had is to look up the Hadley School for the Blind in Illinois. They offer support groups by phone free of charge that discuss a wide range of topics. Did I read your mother has Retinitis Pigmentosa? That can explain some of the depression she is dealing with.