I can't do it. It's too much for me. I have no idea what I am doing and she needs almost constant care. How can they even do that ? How do they know I am capable? They want me to use a lift to change her diapers and bedpan by myself? They say she makes too much for me to get paid anything for this. Yet at the same time she doesn't make enough money to go into a nursing home or other facility with medical professionals who know what they are doing.
She has advanced dementia, she needs help with all things. She cannot sit up. Needs to be repositioned so as not to get bed sores. Needs a complicated variety of medications for various things at different times a day. Also needs pain medication and or nerve blockers for phantom limb pain. She is incontinent and needs to be changed several times a day.
She is also on oxygen which needs to be monitored and administered.
I don't understand how it is that me, with no training or assistance and also having no money, am entrusted with her care.
I've been through this before. They send visiting nurses and physical therapists for a time once a week, but no disrespect, they do absolutely nothing for me or my mother. They check her blood pressure, listen with a stethoscope, see of she can move her arms and that's about it.
My mom needs more than help than I can give her. No one will help. I'm on my own yet at the same time I run the risk of getting in trouble should my care for her be deemed inadequate.
I suppose some of you might know how hard it is to keep an immobile person's nether regions clean! And to stay on top of bed sores!
This is my mother, she needs professional, skilled care! My care is loving, but I am overwhelmed and afraid. Her mental state makes it really impossible to tell how she is doing, if she is not well or if something is wrong. I don't know what to look for. I'm expected to be able to do all this and know all this but I couldn't walk in and get a job as a nurse.
I don't know why I am posting this really, a web forum can't help me and I am ready to be torn a new one in response anyways.
I just don't know what to do.
Nevada allows Miller Trusts.
This is what she will need to set up to qualify for long term care.
Tell the facility that you CAN NOT SAFELY care for her. Period. It is an unsafe discharge because she doesn't have care at home.
Keep saying no, no matter what they say to you.
The state will step in and take over her life. This includes all of her assets as well. If this makes you homeless then find a certified elder law attorney (www.nelf.org) to help you get the Miller Trust set up and get your mom qualified for assistance.
I think I would be talking to the patient advocate and screaming elder endangerment by sending her home.
You can do this!
When I told them I did not think I was able to care for her anymore they said the only option was a group home that would require 3 months rent paid in advance. The monthly rent was a few hundred dollars more than her monthly income.
I told them this wasn't possible financially and the lady I spoke with then lowered the requirements to one month in advance, then to no months in advance and brought the monthly rent down by a few hundred dollars.
That she would barter like this made me feel really uncomfortable so I declined the offer and agreed to having her come home.
I don't feel comfortable with claiming endangerment when I would be the one caring for her. I have not endangered her and I do not deserve to be charged of any crime.
Right now I am living with her but now that is only because I have to, they are sending her home to my care. I have other arrangements I would be utilizing if I were not required to be my mom's full time care giver.
She owns her own home, so I am hoping that this will help in providing for her the care she needs.
It just seems so complicated to me.
Thank you for your insights. I appreciate it.
Call them first thing in the morning and say that you changed your mind and that there is NO WAY that you can provide that level of care. REFUSE to take her home. Say it would not be safe for either of you. Her needs are complicated and she deserves and needs professional care that you are NOT able to provide.
Do NOT let the rehab facility bully you into saying yes. Say you're sorry but you just can not do it. If they insist, I would NOT be home when they say they are coming.
I'm not sure why they say a group home is the only option. What about a nursing home??
You may have to take a placement that is less than ideal and keep looking for a better place to transfer her to at a later date.
Who specifically is "they"? A hospital? Doctors? A hospice facility? I'm really not sure who is establishing all the requirements you address.
They should have set up at home care before discharge,
You tell the facility that mom needs more care than you can safely provide. You REFUSE to bring her home. It is an UNSAFE discharge. They will find a place for her and assist you is the paperwork end of it.
Do you have her POA's?
You sell mom's home use the proceeds to pay for her care until she is eligible to apply for Medicaid.
Give the Area Agency on Aging a call they will help you to negotiate the system. Do not bring mom home because you are afraid of what will happen if you don't. Trying to provide the care mom needs and you are not able to provide is more likely to cause you stress and possibly trouble.
And who is they?
I will try to answer as many of your questions in this post, sorry I am new to this forum stuff.
OKay, so at this very moment they are pressuring me to have mom come home.
I am afraid that if I say she can't come here isn't that going to be viewed as neglect on my part?
I don't know what to do!
A nurse on the phone was calling me because I guess the oxygen people were trying to reach me to deliver her oxygen supplies and I had missed the call. She is telling me how easy it all is, but again, she is a nurse! I'm sure it isn't too complicated but again, this is in addition to providing mom with all of the care she needs, without being a nurse, and I am to do this full time without any compensation. I love my mother but is that right? (#freebritney - sorry I'm throwing that out there!)
Its funny because when I asked why she could not stay at the rehab a for a little longer, if her insurance had run out or what not, she said thar it's a rehab facility and she had reached her baseline and they could not do any further. Before she left she was not on oxygen. Before she left she did not have a UTI. Before rehab she did not have covid. AND YES SHE GOT COVID WHILE SHE WAS THERE!
She has recovered and is testing negative but still.
The rehab has completed their course and are returning her in worse shape than she went in. But I digress. I am venting now. My apologies.
I have cared for my mom since 2018.
Its a long story but her husband passed in2016 and her physical and mental health have taken a nosedive since.
Initially u moved in because she had PAD and was having difficulty getting around. I was unemployed at the time so it was no trouble for me and I quite liked the idea of moving back in with mom. I wasn't getting or expecting payment, but living at mom's house is nice, comfortable and she doesn't charge me anything. Helping mom isn't something I had to think about, and comes naturally.
But at that time we did not know that mom was suffering from dementia.
Mom was a drunker. A heavy drinker. Being my mom, and her (to my knowledge) having all of her faculties. I was in no position to challenge her drinking in any way.
So for a time I thought my mom was just intoxicated .
I knew nothing of alcohol related dementia or how alcohol relates to dementia at this time.
It wasn't until sometime in 2019 I thought / realized something was really not right with mom. But, unfortunately, I had no idea the detriment thar alcohol posed with dementia. I really didn't.
So when mom had her hospital and rehab stays for PAD (she had to have her right leg amputated below the knee at one point) and sobered up, I expected her to regain her mental acuity.
It was an a friend of mine who suffers from alcoholism who enlightened me about as she called it, "wet brain," and from there I educates myself on drinking and dementia.
So that's when we made sure that mom did not drink.
No one ever has actually addressed my mom's mental health. It's always noted in her paperwork that she has dementia. But no one diagnosed her, no one ever discussed it with Mr. No one ever said anything about her drinking.
Not even when they treated her for her duodenum inflammation and her fatty liver.
I am sorry, but my mom could still be drinking a case of wine to the head if it weren't for my alcoholic friend.
Anywo. This went off on a tangent.
I have taken care of my mom for this long. I am going to try to do it for a little longer I guess.
Mom deserves it. She doesn't want to be in a nursing home yet.
But I'll be damned if my caregiving is found to be inadequate or not enough.
When you wipe fecal matter out of your mother's labia every. single. day.
I don't do that without the intention of caring for her properly.
Again. I apologize... this is totally a mess and more of a rant or a diary entry.
Thank you all for your help.
Yes that can be overwhelming. So overwhelming it leads to giving up & no actual change.
A friend has employed a specialised Social Worker specialising in elder care to source an appropriate residential care home. Also an expert in elder financial matters, probably a lawyer too.
Are they options for you?
WithoutAClue is literally WITHOUT A CLUE because she has no training or experience caring for any patients.
The mom needs to go to a nursing facility.
You will need to gather 5 years worth of bank statements and other financials for the Medicaid application.
If this facility does not accept Medicaid pending patients, ask for their help in finding one that does.
Do not allow them to release her to your home.
You must tell them that you can no longer care for her and that it would be an unsafe discharge.
If "push comes to shove" she can be made "ward of the state" and a State, Court appointed Guardian will be assigned to her and will manage her care. The "problem" with that is that you will have no say in where she is placed and what care she gets. but if that is your only option that is the way it has to be so that she will be cared for in a place that is equipped to care for her with people that are trained.
And no one will "tear you a new one" for reaching out and asking for help.
Unfortunately many people try to take on more than they can safely handle due to some "guilt" that someone heaps upon them.
Do not give in. You're right, it *isn't* sane or safe for a person with your mother's level of need to be left to one untrained and terrified family member to handle. For the sake of both of you, the discharge planners need to come up with a better idea.
Keep in touch, it may be only virtual support but we are definitely on your side. Hugs.
Keep saying no she cannot come home. She needs more care than I am able to provide. Keep saying she is an UNSAFE discharge. Keep saying N O
There's no way in h-ll that you or anyone else could give the same level of care to an complete invalid as a facility with the medical equipment and staff to perform 24/7 care. That's not a reflection on you -- it's 100% reality no matter who we're talking about.
Mom stays where she is until a suitable facility is found to care for her -- period, full stop, end of discussion. Don't be bullied into anything less for your mother, because you DO care about her.
While you mention something about her not being ready for a nursing home or wanting to go, that is really not the issue at hand. It's not up to her, it's up to YOU. You know you will be over your head. And that's OK. My mom has been living with me with much much less needs than your mom had before this most recent decline, and there is absolutely no chance I would even consider taking on half of what you are facing.
I've been in homecare for a very long time and have cared for patients in your mother's condition. I certainly didn't start out working alone in the home with patients that need the level of care your mom does. You doing her care with absolutely no training or experience all on your own can be a safety hazard to you both. I would also like to tell you that I've never used a lift to change a diaper in my life. I can't even imagine how a lift would even be of any use in such a situation unless it's to transfer the patient.
You really only have two choices here for your mother.
Either you can bring in VERY experienced CNA caregivers 24/7 to take care of her. You will have to hire them privately because the really good and experienced caregivers like myself, don't work for care agencies because the pay isn't good enough. We're always privately employed and this can be quite expensive. The good news about hiring privately is that you can negotiate the pay with the caregiver directly. This is not possible when an agency is involved.
Or you can put her in a nursing home. Considering her conditions, a nursing home is probably your best bet.
Your mother's income and assets will have to be spent to pay for her care whatever you choose. If it's a nursing home, then her monthly income will have to be paid to them, along with whatever cash assets she has in the bank, and her home will have to be listed for sale.
You cannot get into trouble for not being able to adequately care for her. This should be discussed with one of the social workers at the rehab she is in. They have them and you need to speak to one. Explain that you cannot care for her. They will help to find her nursing home placement.
Ads have to say "consult your doctor" in order to prevent against liability as they are not allowed to say something will work 100% as they don't know you, and you could be allergic to something. Also, you could be taking something that will counteract whatever this ad is advertising.
Mom deserves it. She doesn't want to be in a nursing home yet."
So what happened? Is she home? Did you cave in and agree to continue taking care of her? I so hope that you did NOT...
You might also want to find a lawyer in elder care and pay for their advice. I know an hour of 2 is expensive, but the advise you will get will be invaluable. Just make sure the lawyer is local to where your mom is.
I’m in a similar situation, however my moms not paralyzed thankfully. I can relate to some of what you’re saying. I understand the financial piece, no one there much etc. People always have a quick answer, come on just do this etc.
You have to get help in one way or another. Either someone to help with cooking or other tasks. There are a lot of agencies or you can pay for care to assist and they can be affordable. It would be worth it to pay the $18-$30 an hour to have someone come in and help with these tasks for your mom and provide you support and relief. In fact you really have to. Whatever you have to cut out, if it’s cable, cutting back on some extra food…
You didn’t mention all the doctors appointments etc. that you are setting up. So all these things take time.
Don’t worry about getting into trouble. Unless you’re really hurting your mom, and you’re not, You’re making every effort to care for her and no one is coming after you.
check around for local agencies that will come in to your house. And even if you can’t do 24 seven at least get them for some hours of the day. You didn’t say if you were working or not come which can add a whole bunch of complications. But with FMLA you can get some time off work.
Also it sounds basic but I have to get myself ready for the day first before I care for me mom, get organized, etc. or my day gets crazy.
I’m on several Facebook pages for caring for the elderly parents. There are a lot of people on there, a great place to vent and get good advice. if you’re not on Facebook, try to get on these groups they’re very helpful.
You are doing a lot, and I know you lovr your mother too.
Do not be afraid to ask for help. Try to hire a trained nurse as a caretaker.
He fell recently and broke his hip which required a partial hip replacement,rehab,and now he's living at an assisted living facility.
Due to him not being able to walk currently I could not take care of him any longer.As I like you was doing so on my own.
My dad suffered a stroke in 2015 that left him with some left sided mobility issues but was able to reside at his apartment until Oct 2019.
Due to my dad reluctance to ask for help during the night he has had several falls since coming to stay with me.
He had staples to his head on one occasion and as I mentioned prior a broken hip.
Luckily,I was able to find an AL facility with the skills needed to care for my dad including a hoyer lift and two person assistance.
I went to several facilities and thankfully my dad didn't have to go to a NH which he couldn't afford.
He too is neither rich nor low income so he must pay out of pocket until his assets are low to qualify for Medicaid programs.
You should look into a similar facility for your mom,contact your local AOA,and research applying for Medicaid in your state.Best of luck to you.
Contact a well regarded Medicaid attorney who can guide you through the requirements and the process to apply for Medicaid services.
Contrary to what you may believe right now, this site is invaluable for support, advice, information, leads and tips in caring for your Mom. Take one step at a time, and you will be surprised at the progress you will make. We will be here cheering you on. Keep us posted - I wish you the best.