Mom has advanced dementia, is bedridden, an amputee, needs 24 hr care, and is on oxygen. It's too much for me, but I have no choice. Advice?

Ask the dr office for senior services number in your area. you need to know the resources in the area for help.
Do you have to care for her because financially she can not go some place with medical care? Again the senior services should be able to talk you through available options.
Is there a church with visiting volunteers? Can they bring a meal?
Also you need some resources and books on dementia to calm fears about what to expect or what is a warning sign.
If you feel your dr is not supportive to your concerns, are their other dr ( geriatric specialty?)

Hi!! My heart goes out to you! I’ve been dealing with my mothers late stage dementia for the last several months on top of that my 18yr old son is severely autistic and I cannot give her the home-care she needs (she’s a wanderer) AND watch him at the same time. After jumping through hoops for past 3 months I finally got her placed in a nursing home.
I would love to help you (if I can). What state are you in?
if your mom doesn’t make enough money have you tried you applying for “Medicaid” in the state you’re in? They call it something different depending on the state. Also, try reaching out to your states local Ombudsman for help & resources. That’s who I learned about my mothers rights and where I can get help from.
The people from my local Ombudsman were extremely helpful!
I hope this was helpful.

First take a deep breath. You did the right thing coming to this forum. Everyone here has been through something similar and you are not alone.

One option is to move her into a care facility, use her funds to pay the fees. Then when she is running low on money she can apply for Medicaid. Don’t pay the fees yourself, with this kind of stress you may soon end up needing care yourself! I’ll be honest here, sounds like your mom is nearing the end of life so do what you can to make her as safe and comfortable as possible. Spend her money to do this and to save your sanity and health.

Make an appointment to talk to a case worker to get the facts about qualifying for Medicaid. Also make an appointment with your local Adult Services agency to get some advice. Also! Medicare will pay for a week of Respite Care for your mother in a nursing facility to give you a break and time to address all these issues.

I'm sorry to hear this. Are there any other relatives or people you know who you can contact who could help you out? Can you hire affordable in home care within your budget to come out a few times a week instead of 24 hour care and get physical tests to make sure everything is fine? I don't know what to tell you. I just thought I would bring those ideas out there. If you notice the person is seizing up, only then should you call an ambulance.

OP has not returned. Hope she did not bring mom home, but have a hunch that she did.

You need the help of an eldercare attorney to help advise you. You need to contact the doctor. You also need to contact the Office on Aging in your county and tell them you are physically unable and mentally too to continue carrying this burden - she needs more care. There is financial help available and it takes time but it can be done. She must be placed. Start with these professional people for help and advice. They can get you started in the right direction.

I am surprised that somebody let this situation happen to you and your mother. Unfortunately our social culture is such that unless you take action nobody is going to help either of you. First of all, I think you need an empathetic social worker to review your help options for you and your mother. A social worker should have been referred to you when your mom was in the Hospital or Doctor’s office. If that does not work contact your State’s Dept of Aging or Department of Human Services. Even if you think Mom has too much money, you can start the Medicaid process and go to a spend down process with Mom placed in a Nursing Home that accepts Medicaid. May God Bless and Help You and Your Mother.

I am an only child and how you describe your mother sounds like my mother. I do have 24 hour caregivers and their management alone has been overwhelming beyond words. I live an hour away on a good day and travel back and forth constantly . She is burning through her savings, my inheritance like water through a sieve. My heart goes out to you and to myself . It's a life consuming nightmare for those assigned to this type of care.

Imho, you require respite through any means possible.

You need to make clear to a social worker that you cannot care for your mom. I experienced a crisis with my parents. Dad had an unexpected/emergency surgery that resulted in 90 days of rehab. He was discharged to home with the order that he receive 24/7 care for two or three weeks. Mom and dad couldn't afford that through an agency. I along with my brother who came from several states away to help out for two weeks did the best we could to help. It was clear that mom was no longer able to help dad very much due to her advanced age. Frankly, knowing what I know now, she had done an amazing job for the 16 years leading to that moment. Anyway, dad experienced several setbacks and the entire experience was overwhelming for all of us. Of course, I did as much as I could but definitely felt like I was burning out. Being in the middle of it was extremely difficult, but still, I didn't have enough perspective yet. Fast forward through another hospitalization, a two week stay at a long-term hospital, and another hospitalization and subsequent rehab. They started to talk about discharging dad and I knew if he went home, we would be dealing with further crises in no time. I remember receiving a phone call from a social worker/nurse assigned to dad through their county elder services. As soon as she brought up dad's discharge, I found myself experiencing a panic attack. Like you, my parents didn't have the financial ability to pay $2100+ per week for 24/7 care and that it would fall entirely on my shoulders, plus I could see that mom needed my assistance too. Oh and did I tell you that in the middle of all of this, I fractured my ankle?? I, for the first time, opened up to her about my deep feelings of panic concerning dad's possible return home. I literally told her I was having a hard time breathing. I am an independent person who up until then never would have considered admitting defeat, but the extremely difficult eight months leading up to that moment changed all that. The effort from that point focused on dad obtaining long-term care. He was able to stay in the rehab facility and transition to long-term care. If your mother ends up in hospital, you need to dialogue with the social worker at the hospital. If your mom is hospitalized for three days, she can qualify for rehab. Once in rehab, you can work with her social worker there to help your mom transition to long-term care. To do this, you should look into the rehab/long-term care facilities in your area so you can hopefully choose the best one for your mom. Also, it would be helpful to apply her to Standard Medicaid if she isn't on it already and if she qualifies. I had done that in the middle of all of this and it helped that rehab/LTC facility believe that dad would successfully qualify for LTC Medicaid. If you or mom aren't ready for that, your town or county elder services may have programs that provide some in home care for your mom. My mom qualified for an in-home version of long-term care that was called Frail Elder Waiver at the time. This involved an application that was a little like the application for Medicaid. Again, they assessed her needs to determine what she qualified for. At first, she qualified for 2 hours of light housekeeping per week, but as she required more assistance, they added more hours and help with preparing food and assistance with bathing, no meds given. Eventually, she was receiving 24 hours of help spread out Monday through Friday. I am explaining this program because it could be a way to get your mom into long-term care eventually. This program eventually allowed mom to stay in rehab for two three-month stints (total of 6 months). She never would have been able to just with Medicare. She eventually transitioned to LTC. Hope that this insight helps.

I have not read all the responses you have received. I did read one that said yes, you have to do this. But no, you do not and cannot. No one person could do what you described for any length of time.
She needs professional care in a long-term facility where a team of professionals provide the care she needs and you visit as the loving daughter. Go to the medicare rating site and find some 5 star facilities near you that accept medicaid bc once her money runs out, you want her to be able go stay where she is. Visit these places. Talk with the admissions director of one you like. They will help you. Your current situation is a recipe for disaster.
Good luck.

Love alone will not cut the cake. It takes HARD work and you have to be there 24/7. Been there. Done that.

If you have nobody there to help you--YES you have to do it. Just wait until you have to induce a bowel movement in bed. If they were constipated your entire bed will be covered with stool. Not only do you have to clean her up and the bed, but also her private areas very very well or she will get a urinary tract infection. It can only take days to get impacted, so you have to establish a bowel schedule.

If she were from the hospital they should have warned you what was to be expected. If you absolutely cannot care for her call 911 and get her back to the hospital so social services can discharge her somewhere else other than your home like a nursing home.

If you do or did come home with home health - you can request a social worker through home health (who may or may not be able to give you local resources that she may qualify for). Mine did have some local programs - most I did not use but there were some that offered meals - additional aides through local programs etc so it is worth meeting with one to see if there is any additional help available.

Hopefully if you did not already have DME equipment (hospital bed - wheelchair - hoyer - commode etc) that they set up for you to have these items for home.

The home health usually also supplies a bath aide 2/3 times a week along with therapies. Even if mom isn’t capable of some things you should have them assess her even an OT may be able to help assess the home and have suggestions. I have shared resources I have found with all of my home health including therapist and they have also shared additional ideas and resources with me (just depends who you get but ask them all).
I am not sure where you are located but this year after a long UTI hospital stay I found a in home dr service in my area - covered by Medicare and they send an NP once a month to follow up or sooner if you need them - they can request labs/ bloodwork as well as urine samples etc and all to come to the home. they can oversee her meds and refills - it’s worth checking to see if you have one in your area.

If you came home or are about too - then we all know you are just going on adrenaline - so once you settle in - come back here for continued support - best wishes for a smooth transition whatever you ended up choosing. 🙏🏼🦋

I can't remember if this was mentioned, What will happen to her if/when you are so tired you fall and break something, or your immune system is bad because of your not having the time to take care of your own health, that you get sick? Or you just strain your back moving her? When we say an "unsafe discharge" it is because it is not safe for either one of you. One person absolutely cannot provide 24 hour care, it can't be done. Please, don't let them bring her home. Stand your ground. At this point, it doesn't matter what she wants or you think she is ready for. You can't do 24/7 duty, it is physically impossible.

I don't know if you have a career or not, but you might start thinking about getting a job and moving on with your own life. You are important too.

((Hugs))

Call Social Services and they will come visit, see her condition, just (1) of you, and they will place her.
The neighbor behind me’s son and ex daughter in law, we’re exploiting her. They were bragging about using her credit card, signed her car over to them and I saw her skinny and generally unkept.
The son kept going in and out of jail.
I called SS. I told them everything I saw.
They did a wellness check and removed her on the spot.
Off to great memory care (they told me where they placed her and thanked me)
She was happy and adjusted better than I hoped, but died a year later.
At least she had a happy year.
The 2 “exploiters,” didn’t reap any consequences for financial abuse which sickens me to this day.
You can’t keep doing this is the point.
Help is out there.
They will figure out the finances.
Be well sweet one-

Who is 'they' who have placed mom in your care? Your siblings?

There are very few programs to pay a caregiver to take care of a parent, however you said she doesn't have enough money to go into a nursing home. Are you saying she doesn't have enough money to pay a full month of NH using just her own money? If that is true, you can apply for Medicaid NH assistance - she pays what she has and state pays the rest if she is eligible.

If she make too much to qualify for Medicaid, you can go to an elder attorney and get some needed financial advice. For example, he might be able to set up a trust where her excess $ goes in to the trust and remaining goes toward NH fee with Medicaid picking up the balance. If she has more than a couple thousand in her checking or savings, she would spend that down to pay for the NH herself and then become eligible for the Medicaid assistance.

The nurse that visits does exactly what you say she is doing. The other option if you keep her at home is to talk to dr about hospice or palliative care - and you would get a few more hours to care for her. The agency sending PT and nurse can also explain higher levels of care they can provide with dr's order.

If your family has helped get you in this situation, then tell them you need help. Without the help, you are leaning toward placement because you cannot do it alone.

I so hear you.

My mom lived with me off and on (mostly on) for the last 10 years.
Her social security (from her husband who passed) was the maximum amount which means she qualified for zilcho with any state services.

I’m an RN and I couldn’t get reimbursed for her care due to her “income”.
(My mom is 78, an insulin dependent diabetic, dementia, rheumatoid arthritis, atrial fibrillation-the whole shebang). I had to quit work to care for her.

Then, back in November, she fell. Just like my worst fear for her. From the way she landed I knew she’d fractured a bone.

They couldn’t repair her fractured femur due to her being a terrible surgical risk, and the bone is now permanently broken. She also caught Covid in the hospital (didn’t phase her) and then got sent to the only rehabilitation facility accepting Covid patients at that time.

After 3 weeks they deemed her as rehabbed as she was going to get and called me to let me know she’d be coming home in time for Christmas.


My husband I both were on that call. They started telling me about how Physical Therapy would follow for a month, and no she couldn’t even transfer to a bedside commode without full assistance.

Thats when the record stopped. I could just picture myself for the next however many years being a full time caregiver to a woman who’d already consumed the previous 10 years, except now I’d be CARRYING her.

Hell no.

My husband and I both interrupted them. We knew there was a nuclear option and we had discussed years ago when to deploy it. It was when I knew I would be put in a situation where I would physically be unable (and mentally, and emotionally) to continue to provide 24/7 care. And if my mom couldn’t even bear weight, that changed the circumstances.

We told them “no”. This is every nursing homes worst fear. Legally, they can’t evict patients and the onus is on them to sort out getting their obnoxiously high fees from the government. It was tough but also freeing. The last ten years had weighed me down like a millstone.

She ended up qualifying for the state resources (as a nursing home resident) to offset the $5,000/month bill.

So, that is my story after being in a similar situation. My mom continues to live at that nursing home-although I’m starting the process of transferring her to a closer one, and is doing fine. Her dementia is pretty advanced so she’s minimally verbal and doesn’t seem distressed by the change.

I’m on the road to my own recovery as I’d arranged my life around her for years.

Just remember, you too have a nuclear option. If/when your mom develops a UTI or change in level of consciousness, or a wound that’s getting worse, send her to the hospital and then refuse to have her back. The Case Managers are very skilled at placing people in facilities and will get her a bed. (Just get her vaccinated for Covid first).

And yes, I realize some people may think I abandoned my mom. But I did what needed to be done to keep her safe and my family intact.

I really hope you are able to find a solution that gives you peace. Time passes quickly and none of us are getting younger.
Blessings and peace to you.

If you have homecare currently, request a meeting with the social worker who should be able to provide you with guidance in getting set up under Medicaid. If you'd like, pm me and I will talk with you one on one.
As a nurse and geriatric care manager, I've found that there are many people out there who don't know what is available to them; you should not be going through this alone.
And if you take her to the ER, she may be required to stay for 3 overnights before she qualifies for placement in a skilled nursing facility. Be sure to confirm in the ER that she will be a full admission and not an "observation".
Hang in there and kudos to you for doing your best!

call an elder attorney, he can help (or office of aging) in getting her set up for medicaid. Get her into a NH where she can get the care she needs. YOU don't pay for it, she does and she can get medicaid. What happens if YOU get sick? then what......she will still end up in NH. Yes you love your mother and this is not a bashing, but a wake up call. YOU cannot do it all yourself without help. Get in touch with a good elder care attorney or office of aging and get things rolling. I am sorry you are in this situation but now is the time to take control (one step at a time)........and get back to being her daughter where you can visit without the worry of when will the oxygen run out, do i have more, what about the bed sores, how do i move her and honestly to use a lift requires 2 people. I wish you luck.

If she is at a facility, hospital, any place but home. Tell them in advance that she can not be brought home that you are not able to care for her and it would be an endangerment to her life.
Torally refuse to accept her!

Do not let her back inside the house if they show up and they will find her a bed.

BUT note, most Nursing Homes aren't the best and are all understaffed and patients are over medicated to make it easier.

But, if you aren't able to care for her and you rely can't without help, then it's Ike you don't have a choice, it's not like you didn't try.

Prayers

Stick to your convictions. You are completely right that you absolutely cannot provide this care alone. You could not provide this level of care even if you had appropriate training. Use the phrase "unsafe discharge" when talking to those pressuring you to receive your mother for care. It has legal implications. Suits filed for "unsafe discharge" have been quite successful in courts. Get a social worker from senior affairs to help you. Cooperate to the extent that you agree your mother needs extra help, then reiterate that you cannot provide that help. I have been through this. The staff that wants to "dump" your mother on you know exactly what they are doing and simply do not want to spend the time and money to find a better place for her. You and your mother will both be better off if she is placed in a place where she will get adequate care.

With a little help you should be able to find a placement which will take payment from your mother until the money runs out, then will convert to a medicare bed. Getting the paperwork ready will be a challenge, but not impossible. Get your hands on the paperwork for all her income and expenditures for at least a couple of years, but up to 5 years and be prepared for a certain amount of stonewalling. Most of the people you will be talking to might really like to help but they have far more people with needs than they have resources. Be patient but firm. MOST OF ALL, DO NOT LET YOUR MOTHER ENTER YOUR HOME. Once she is in your home, you lose the power to say no. Keep saying no until you get the help your mother needs.

Just a few thoughts. Do you have POA? Does your mom have a home you can sell? You could perhaps use these funds to place her. We were in same boat. Too much money to qualify for assistance so she (we) spent her IRA for 24/7 help at home. $25 per hour. In the last two years it has cost $167,000 for at home care. I tried to take care of her at my home but that did not work out.

I’ve seen a few responses to your post suggesting a lawyer. Do you have a local legal agency that provides free legal services to seniors. I finally had to get a lawyer for legal issues with my mom and it eventually helped but it was a long process. We are paying for the lawyer and it is expensive.

I know all these suggestions possibly just add to your load and sorry we can’t do something more helpful for you. So sorry you are facing this alone. I can second the thought that it seems like there is no one to help. It’s been uphill battle to get my mom settled and finally placed in care home. There were property issues, bank issues, trust issues, doctor issues . (COVID has not helped). I could go on and on about all the problems we had. I hope you find some help soon. Good luck.

Get your mother a trained Advocate as soon as you can. A certified advocate can get you the knowledge and support you need, including money.

If you are in the US, each state has a Department of Aging. I would start there - call and explain your situation and perhaps they can guide you to some places that can help.

As somebody else mentioned here, if you can get her to an ER, stating that she may have a UTI or difficulty breathing, when time comes for her discharge, state that you are unable to care for her at home and any home care that has come over has done nothing for her. Hopefully they will then discharge her to a skilled care facility. They may ask if you have a preference, so you can compare which ones are rated highest in your area and pick one of those - have a list of several because there are not always beds available.

Best of luck. You're doing the best you can.
https://www.medicare.gov/care-compare/

I’m so sorry for you and your mother. This will be the harshest suggestion you might receive. Your mom has no quality of life at this point and being sustained by medications and oxygen as well as your constant care. It seems there is no chance of recovery for her conditions. Did she not have a Living Will/DNR or Physician’s Directive?

I am also responsible for managing 24 hour care for my Mom. When my Mom was released from the nursing home after her stroke, they inspected the home to make sure it’s was safe etc., which is laughable because Mom can’t walk or do anything for herself. Safe for who?

These social workers tell you that you are responsible and can be held liable etc. I’m not her husband, I’m her daughter.
But if you need real help, there isn’t any help. All these agencies, but none of them provide services you actually need.

You’re right. They show up and take temperatures, listen to their heart. But if you need urine checked, or blood drawn Mom has to be transported. There is no help with care.

You would think they would make it easier for people who have family who are willing to help and manage care, but they don’t. We have to find our own help and pay for everything until there is no money. And then after you’ve provided all this wonderful care, in the end your forced to put your loved one in a Medicaid facility and we all know what those look like and the care that is provided.

It’s a very difficult situation for anyone doing it and there are no good solutions. I never understand the lack of help for our elderly.

I would like to offer a couple things that I have found that help in my Mom’s care.
I purchased a sit to stand from Midwestern Medical Supply. The cost with the harness was around $1500. This enables us to lift her, stand her and move her around. It’s much better than a hoyer and you only need one person to operate it. You can also get a sling for it if needed.

My Mom can’t walk or stand on her own, but with this we can stand her up so cleaning her “parts” is much easier and it also puts her in an upright position several times a day. We can move her around with it, get her in and out of bed, on and off the bed side commode. It really is a great item and we couldn’t function without it. They have videos to watch so you can see how it works. The manufacturer is Bestcare.

The other purchase I made recently was around $80 on Amazon. It’s a mat you put under the fitted sheet and it has 130 air filled bubbles. They quietly move in sections to keep the body moving while in bed. We did this to avoid bed sores and also for pain and stiffness from being in bed so much and unable to move your body on your own.

I would encourage you to at least get some help a few hours a day. I can’t imagine doing what you are doing. I get overwhelmed and I have caregivers helping with my Mom.

Good Luck to you. My heart goes out to you.

I know you mention your mother makes to much money to go into a nursing home, which it most definitely sounds like she needs and qualifies for. It is a process to get this to happen but it can be done. I see on here many have said get an elder law attorney to help you through this. That may be a good first step or check with your local Office for Aging. I volunteer at such an agency and helping people with applying for nursing home and Medicaid is some of what we do. You could also apply at the Medicaid office. I went through this same thing a few years ago with my own mother. (part of why I now volunteer) In my mothers case she also made to much to be qualified for Medicaid but not enough to pay for a Nursing Home. How it works with Medicaid is that all of her income except $50/ month for personal care items is paid as a spend down to the Nursing home and then Medicaid pays the rest. Just an FYI any amount of the income that is used to pay for medical insurance is allowed prior to figuring the spend down. If your mother has any assets or savings that would need to be used up prior to qualifying for Medicaid. That’s not a bad thing because self pay residents get placement quicker in Nursing Homes than Medicaid. If she owns her own home that would need to be sold to pay back at least a portion of the cost to Medicaid but only after her passing. Medicaid is just for the type of situation you have found yourself in. Good luck.

Secure a Medicaid attorney who can set up your mother with her assets and income with your State's Medicaid program/Skilled Nursing Facility. My sister and I are in the same boat, spoke to an elder care attorney - you do not have to 'spend down' her money, just secure it in a way to hand her over to skilled State facilities.

If you haven’t already done so you should talk to an elder law attorney. They can help you with reallocation of your mom’s assets and income to very possibly help her qualify for medical assistance and placement in a skilled care facility. At the very least you should be able to receive some compensation for caring for her at home. If you can work on getting her qualified for medical assistance there are a number of programs that could help by providing an aide to assist you with her care at home. One other thing is if she or your dad are/ were veterans there is an aid and attendance program through the VA that she could possibly qualify for financial assistance. Good luck I hope you find some help soon.

She is nursing home care level! Take her to the ER saying you think she has a urinary infection due to increased confusion and then refuse to take her home. We did that with my mom due to confusion then we told them we can not care for her at home. She spent 4 days in the hospital and then was accepted in Long Term Care. Her doctor told us to do this and it worked..a nursing home will use her money until it is gone and then switch to medicaid help.