Dementia getting worse, any advice?

Cindyn, I hope the responses below have given you hope. I just want you to know that my MIL is in LTC on Medicaid in a private room, receiving all the same care as the other patients. Please consider contacting faith-based facilities as they see their service as a mission, not a profit-based endeavor. My MIL is in Presbyterian Homes (in MN), but the Catholic and Luther churches also have facilities (at least they do in my state).

Also, I filled out my MIL's Medicaid app and I didn't find it hard. You do need her SSN, birthday, and her case # (from her social worker). You also need to be able to print out her most recent bank statement, and be able to provide her pension info. My MIL only owned a beater van and had a very small SS check. I didn't find it difficult at all.

It is true that at 93 she won't need much more than "3 hots and a cot". Depending on the state, Medicaid will take all but $90-ish dollars every month and I guarantee she will struggle to spend that monthly.

If you do an ER dump (and I have no experience with this), I'm not sure if this means the county will then get guardianship of your mom. Guardianship means they will be doing all the legal decision-making for her instead of you, namely where she is placed, and you won't be privy to any more of her financial info. I would ask the social worker this if you get the chance.

FYI I had a very excellent experience with several very compassionate and accessible social workers for my MIL's case. It surprised me, to be honest. They worked super hard on her behalf. The only one who drove me nuts was the one I had to talk to involving the Medicaid app. BUT even she would call me at 6:30pm to answer my voicemail questions. The app approval process takes about 3 months. If you apply for her make sure to watch your mailbox -- if they need any other info from you to complete her app it needs to be sent back immediately (like within 7 days) or you will need to start the app process all over again.

I wish you much success -- and soon -- in helping yourself and your mom. May you receive peace in your heart that getting her transitioned into a care facility is the best and only thing possible to help you both.

EmotionallyNumb, PLEASE stick around on Forum. We so badly need the input of a Social Worker on Forum. Thank you for your response below.

If your mom had made you promise that she could keep driving until the day she died, would you have co side red that a promise that should be kept?

A promise made by someone responsible for the care of a very ill elderly Loved One, to the Loved One who is suffering from a terrible progressive illness, is a CRUEL FAILURE to both people involved.

Your responsibility to your mother is to be sure she is Safe and receiving care by trained professionals, available to her every hour of every day.

Her pension is not providing what she needs.

You also have a responsibility to yourself, which you seem to be seriously neglecting. It is not good for you to feel sad or helpless or alone. We who post here have ALL known this despair, and want to help you.

You have received powerful suggestions here, and once you take a step toward providing for her you will begin to feel more empowered yourself.

Although our holidays have been very different this year, we can all make a fresh start as we enter a new year.

Contact your community social service department and learn what you can do to get real help for your mother. Take the first step.

This may sound harsh but this situation is one of the reasons I recently decided to leave my job as a hospital social worker. I see this same situation play out multiple times per week. I feel for the patient's and families and as of yesterday my hospital had about 20 people who were unable to discharge due to similar issues. That is a significant portion of our beds being taken up by non-medical causes. What happens then if someone comes in with a real emergency need then we have to find another hospital who has available beds to take them to. Then an ambulance needs to transport them to the other hospital, which is also an issue because we only have 2 ambulance teams on at a time and if one is occupied, what if we get two emergency calls at once? We have on call paramedics but that can take time to get them in and out to the emergency. Really a domino effect...

If you would like to help the social worker, be as upfront immediately when she calls you Monday and tell her in no uncertain terms that mom cannot come back to you and that placement has to be found. Sometimes families dilly dally about stating this, which also causes additional delays. Fill out mom's Medicaid application this weekend so that process is already started too, it takes awhile to get processed. Mom will lose her pension and social security, I believe they get about $98 per month for personal needs.

She probably needs IV antibiotics, could be a kidney infection from the UTI. Infection takes such a huge toll on the body, they'll do cultures, let them grow for a few days, find the best antibiotic and see if she improves with some treatment. If she improves, then they will recommend SNF placement, if she does not, they will initiate the hospice discussion as it's better for the hospital statistics if the patient dies on hospice status then inpatient status. Hospice also prevents frequent re-admissions, which also impact statistics. Sickening, isn't it?

Find a nursing home that takes Medicaid in your area of Nassau County. Ask THEM who they can refer you to that will HELP you thru the Medicaid process; ie: forms, getting them submitted, etc. "Losing her pension" is irrelevant, really, because the nursing home expenses are paid for ENTIRELY by Medicaid once she's approved. In a situation like this, there is little choice. The nursing home may even accept her BEFORE the Medicaid application is approved, on 'pending' status, you'll have to check.

I'm in a similar situation myself (from Nassau Cty originally, now in Colo.). My mother is 94 next month & lives in a Memory Care ALF. She's wheelchair bound herself & needs WAY way WAY too much help for me to even consider having her live with me (plus dementia & behavior issues that make me not interested in HAVING her live with me to begin with). Her $$$ will be running out this year. The SNF I want her to live in next gave me the name & numbers of 3 Medicaid agencies that help people like us with the complicated process of applying. The agency I contacted charges $1400 (in that neighborhood) which I thought was reasonable. They even submit the paperwork and check the approval status, intervening as necessary and helping me if further forms/documents are required. The rep emailed me the necessary forms and it greatly relieved my mind, especially after speaking with her on the phone.

You don't have to do this anymore..........stop crying and get busy DOING what you need to do to get your mother placed in a Skilled Nursing Facility right away. You can also take AlvaDeer's advice about taking her to the ER and not taking NO for an answer about bringing her home. The social workers WILL help you, especially if you make them understand in your best NEW YAWK voice that no, you cannot and will not take mother home. It's too much and you simply cannot do it anymore. Period.

Wishing you the very best of luck with a truly awful situation. Sending you a big hug and a prayer for a good resolution to your distress.

Take Mom to the Emergency Room, Cindy, or call 911 to do so. The perfect reason has just landed in your lap.
Once your Mom is in the ER and they admit her (even if the do not) LEAVE. When you are called tell them you must talk with Social Services. Tell the Social Worker that you cannot physically or mentally care for Mom anymore, that you have lost your job and are losing your home. Tell them you will not accept her home and she must be placed. They will work to get her on Medicaid and get her in placement. Do not bargain with them and do not listen when they say that they can help make this work or will help. They can't and they won't. You need to see Mom in placement now for your own good, and it sounds like you should have done this when she was in rehab; that would have been the ideal time. Medicaid will pay her costs Social workers will place her, something you could never do on your own in this time of covid. Were it possible to wait until Covid is over I would suggest that, but the truth is that is about 6 months out and I suspect you cannot nor should you try to last that long.
I am sorry. You have apparently got no guidance on medicaid. That would be difficult for you to apply for her for, but Social Workers can make this much faster and easier and they will because they need her out of the hospital.
I am so sorry. You are not alone in this country where we are refused help until we literally dump our senior into a hospital and disappear just as though that senior had no children.
My heart goes out to you; I can hear the desperation. You need to let the Social worker hear it as well, and do not do NOT DO NOT bargain with her. Tell her that sending your Mom to you will result in your calling another ambulance at once and you will file on them for unsafe discharge.
No, medicare won't pay. But Medicaid will. Not the care you would wish for perhaps, but not everything can be fixed or made perfect.

She lost the use of her legs, they kicked her out of rehab, and - what? What was supposed to be the discharge plan?

What do her doctors have to say about how she is? I'm just wondering, though of course I don't know, whether hospice might be a better option for her and at the same time get you a better response from Medicare. I hope this idea doesn't come as a horrible shock, and we don't have any information about your mother's underlying state of health, but at 93.5 surely she deserves more support than she's getting from them.

Maybe you could start by going back to whoever prescribed the antibiotics for her u.t.i. and asking for a full assessment.

I’m so sorry you’re going through this. Please don’t let a promise made when you didn’t know what you know now manipulate you into believing you can’t change this. Your mom needs more help than you can provide now, and that’s not anyone’s fault, most especially yours. My mother was in a nursing home, and after a short time went on Medicaid. It made no difference at all in her care. It’s okay to put your mother on Medicaid and get her into nursing home level care. Her pension will go toward her care, she’s past it being any use to her otherwise. The nursing home my mother was in had a business manager that completely walked us through the Medicaid process, at no cost to our family. Your mother can be admitted Medicaid pending while the process goes on. If things are too unstable at home don’t hesitate to call 911 and have her taken to the hospital, and from there she can be moved to a nursing home with the help of hospital social workers. Please know the importance of preserving your job, home, and life. Your mother in her right mind would want that for you. You can become a caregiver that oversees and advocates for your mom while caring for yourself. I wish you the best

Hi Cindy, I'm so sorry, I understand what you are going through. It is an awful, gut wrenching situation. I was in a similar situation, and I got help through the local hospital. If she needs to go to the hospital, you talk to the social workers and tell them you need a social admit. Do not take her back home. The other route you can go is by calling your local AoAging agency. Its possible they can help you, but it really is going to depend on what kind of staff is there. From what I've heard, some agencies are great, others not so much. If you have the strength to do it yourself, you can try to apply mom for Medicaid on your own and visit local nursing homes and ask if they have open beds in the ones of your liking. Some people succeed in that fashion, many do not, and today with the COVID crisis, I can't imagine it would be easy. Another route is by calling APS directly and letting them know you can't take care of mom anymore, you have no strength left. They may help you, but they are also going to scrutinize all the finances. The hospital route is the quickest way, so if there is an emergency, or you think there may be an emergency, don't hesitate to call 911. If not, please call or visit your local AOA agency ASAP and let them know your situation. If they are not helpful, you are going to need to go the 911 route. best wishes, keep us updated if you can.