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To try and sum up what has happened. She is in ALF due to her blindness, and nearly debilitating anxiety and depression related to losing her eyesight. Over the past couple months we had issues with ALF not giving meds properly and ultimately a situation where she fainted, hit her head and had to go to ER. Long story short; that was handled improperly as well and I even had to call the owners who were unaware at all that was going on but this was right at the beginning of this covid crisis so everyone has been scrambling since. She was at rehab following hospital stay but they allowed her to make the choice to go BACK to this ALF despite me not wanting her to. I had already found another ALF to take her that I felt would be a fresh start for her given our amount of problems there. But again, they allowed her to go back. I was concerned that her anxiety which had grown severely since the med errors and all would make her once again have a “meltdown” once she was back there and that’s just what happened. 5 hours after being transferred back she panicked, had a severe anxiety attack and had to go to the ER where she did a voluntary admission in Behavioral health.


She’s been there for about a week and now the HUGE question/dilemma with all this going on....given her blindness, do I move her to the new ALF that’s willing to take her and will for sure quarantine her 14 days (praying she doesn’t lose her mind again) but she will be in ALL new surroundings in her room and only bare bare essentials. OR let her go back to original ALF we have had difficulty at but she would have all her things and is well oriented there? Go away Covid :( Caregivers have a hard enough time making decisions normally...this crisis decision making is even more awful....

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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.
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dontgetthechees Apr 2020
Hi,

Any suggestions on how to get someone to do any of that? I have an 89-year old father with macular degeneration who fights change with a vengeance. It took 2+ years to get him to go to a VA program, they gave him a lot of stuff and he won't use it. He has audio books that he's never opened, because why would you when you can watch GunSmoke and FoxNews....

Oh, and he rides a trike around the neighborhood. I know....
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A medication evaluation is in order for starters.
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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.
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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
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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.
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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.
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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.
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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.
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RPcaregiver Apr 2020
She should have a seeing eye dog but she refused for so long because she already had a little dog that was hers and didn’t want upset it bc it was old. I ended up with him when she moved into ALF, but I really think the main reason also is bc she is too scared to go to training as well. She is stubborn and does not listen to what’s best for her all the time, but she is working with Lighthouse for the blind here in Tampa. She’s taken several courses there and has been encouraged to go to support group meetings and events there on her own but there again, falls back on refusing bc she’s “scared” and basically just wants me to take her (which I can’t all the time).

She does listen to tapes of books but does not have the voice controlled computer. I’m not sure why. I’ll have to look into that when they re-open after this mess.

As far as the new ALF, we are just striking out. I have had very little contact with them in trying to help ensure she gets settled there, and I was let in with mask and after temp taken as an emergency when I brought her there from the hospital because her room wasn’t put together at all. They allowed me a couple hours of trying to at least get the bare essentials straight enough to where she would have an idea where they are but nothing else. She said she’s asked them for more help and they always attest that they are busy, which I know they probably are and she may be asking a lot or she is manipulating the truth of that to me too. It’s hard to say with how she manipulates stories to me.

There is unfortunately no one but me. I am it. I have 3 young, busy children, a husband with a first responding job that requires a lot and zero family help. Her “friends” I can’t even count in to at least call and check in more then every couple months. I know that hurts her, and she does have a sister and niece but they never make time to see her. She will luckily admit her fears but still won’t be completely transparent during therapy sessions bc she doesn’t want to “sound crazy” which I tell her only makes it worse. I wish we had the funds to a) move her to a higher quality facility and/or b) be able to afford a companion for her but it’s just not in the funds. She makes literally bare minimum on disability and is left with almost nothing after they take her Alf payment out. I could possibly try and look into once a week or every other week if somewhere would allow that but it would be us making that commitment so would have to see how much that would be as well. Thanks for the suggestions though, I will look into the computer for sure and how $ once a week would possibly cost us for companion!
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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.
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RPcaregiver Apr 2020
I wish they would keep her longer for sure to get more functioning but she can function well enough according to them that they think she can go back to ALF which is why they said now, she’s “stable” and not in crisis and they can no longer keep her. We’ve busted tail the last two days and moved all her stuff over to the new place. Hopefully they can help get it somewhat organized and help her adjust there, it’s not the ideal situation but nothing is now with all this going on. If I was able to move it all and arrange everything for her, it would be no question. This is just going to set her off though with everything a muck but it is what it is. Tough times. Just praying she can find trust again in this new place...its so extremely sad that mental health is SO lacking in this country.
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Spammer Eunicnoah has been reported, on this and on the other threads.
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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?
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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.
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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?
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RPcaregiver Apr 2020
We go for cognitive testing in June, she has not been deemed incompetent. There is a lot of paranoia and anxiety due also to her belief that they are “poisoning” her there. The whole entire story is probably needed to help understand but she had a manipulator of a male friend who lived there and tried to control her every thought and move. She now believes he is paying people there to “mess” with her. Hence why her paranoia has just increased and increased bc it was so bad that we almost had to get a restraining order on him and even the place there has an order he is not allowed to visit there bc of his prior behavior (he used to reside there and has since moved out) I know she isn’t deemed incompetent, but I had to explain to her that this is my last ditch effort to help. She can go back to original ALF but I will NOT be able to help talk her off the ledge every day that she thinks they are trying to kill her. I am all she has and at this point, so it’s easy to say that but when it comes down to it, I just wouldn’t be able to even a were her calls for help bc it’s honestly sometimes hour by hour with her even. Her mental illness is pretty severe. If she wanted me to help make the move to other ALF though I would do my best, given the COVID restrictions we are now given where basically they have to move everything in and out for us. Which is where we are at. Another big part of the story I left out is that the ALF she’s at gravely mistreated the situation that landed her in the hospital. Long story short, she fainted twice and pulled her cord and no one came...had to call me to call THEM to go into her (now, she could have felt like she was there longer, she does have anxiety and was post syncope) and when I got there (bc I was only 5 min away and they didn’t expect me) she was in her bed, had vomited everywhere from hitting her head...it was all over and the workers were all laughing and chatting it up in the dining hall. No attempt to help clean her up or be in there with her. Two days later I came back to get more stuff (she went to hospital to make sure she didn’t have a head injury from the fall) and they still had not cleaned anything up. The rug that still had throw up on it, her bed covered in it...when I asked about it? They said they ordered a special rug cleaner. But, that doesn’t explain why the bed couldn’t have been changed. Sorry, I know it’s a lot 🤦🏼‍♀️
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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
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RPcaregiver Apr 2020
So sorry you are going through that as well...it’s so hard to feel helpless when they get depressed and are not their normal selves. Hard for them and for us to watch. It’s really sad too because we just loved her facility up until changes in Owners, management and med tech’s that have been just constant.
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Your mom is 66? What was her functioning like prior to her becoming blind?
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RPcaregiver Apr 2020
She has a degenerative eye disease, RP and lived alone in an apartment until her eyes worsened and she no longer had the will to live. Had multiple suicide attempts and I was over there constantly despite having 20 hours of caregivers with her throughout the week. It just wasn’t enough so she went to a behavioral health unit and was moved to and ALF after her 3rd attempt and ICU stay.
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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.
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RPcaregiver Apr 2020
Yes, She has had multiple opportunities for outpatient mental health care and refused bc she’s scared...but she’s also been in care of a Psychiatrist for years now and also sees therapist weekly as well. She’s been to the lighthouse for the blind several times for refresher courses and has a mobility specialist who was coming to work with her prior to covid restrictions. Now, that has all came to a halt until this mess is contained and lifted.
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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.
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Tynagh Apr 2020
Barb,
I can understand about putting minor children ahead of mom's care, but I cannot grasp putting the needs of a fully, grown adult with (we are presuming) no particular health concerns ahead of fragile parent. Seems like the spouse would be exceedingly needy. Just one person's opinion on it.
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Take Mom to the New Facility.  One boo boo too many at the other one; next time then what?

Good luck.
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RPcaregiver Apr 2020
This is exactly what I am concerned about and why I didn’t want her going back in the first place...she chose to and they allowed her, which I get. She’s pretty demanding and irritated right now. It just stinks all around now bc restrictions are a lot tighter now but that’s a decision she made so I have to keep reminding myself that and that I am honestly just trying to do what’s best for her. Thank you!
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What a hard situation! I’d certainly encourage mom to try the new place. There’s no sign the old one will improve
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RPcaregiver Apr 2020
This is what I need to realize...thank you. They really try promise after promise but I never see a change. I know it needs to be done, just given the covid situation it stinks :( Thank you!
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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.
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RPcaregiver Apr 2020
She wants her comfort zone and the easiest choice bc people with anxiety and depression see this task as a mountain they can’t even begin to try and comprehend. We tried it her way, she panicked in 5 hours and had to leave. She of course wants what is familiar and I want that for her too, but I can’t keep fighting for her there and having to deal with their mistakes and mishandling. I have discussed this with her and also told her my boundaries of what I am capable of doing and that is not continuing to deal with the problem after problem and paranoia that they will mess up her meds again or make a bigger mistake. If this COVID stuff wasn’t going on, it wouldn’t be a question. I just hate taking her completely out of her familiar zone when I can’t be there to help her organize her room where she knows where things are at or get her acquainted to her knew space. :/
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