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....
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.
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....
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
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.
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!
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.
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?
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.
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?
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
Your children don't have anything to fall back on if you and husband get sick. Take care.
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.
Good luck.
You need to convince your mother that she will get better care at the new facility.