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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.

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You call the SW at the facility and tell them that when rehab ends, you want her admitted to the facility as a "Medicaid Pending" patient.

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.
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NO....NO.....NO....
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.
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mstrbill Aug 2021
Agreed and better said than me
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I can't tell you how relieved I am to read that she isn't already in your house.

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.
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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.
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Maryjann Sep 2021
You did the right thing. You might be permanently injured by now if you'd tried to have her home and lift her - as you well know. And she would be in long-term care regardless.
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Knowing your limits and abilities as you do, seeing to it that she's cared for in a proper facility is exactly the opposite of neglect. You ARE taking care of her by ensuring she's in a place with 24/7 care where she won't (fingers crossed) get worse care than what you could provide.

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.
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If your mom is on Medicare call the Medicare hotline and report it as a Unsafe Discharge” first thing this morning. It will put an automatic hold on the discharge and a Medicare rep will contact you and you tell them all the above. This will at least allow you time to gather your thoughts and make some calls so you can find a safer choice and additional resources for your mom.
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Not a friendly question? Nonsense! It would be good for you to browse around this site to see how often this question is asked. It happens all the time.

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
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Withoutaclue,

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!
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WithoutAClue Aug 2021
Thank you. I will look into Miller Trust. She is at a rehab facility but is to be discharged and transported home tomorrow.

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.
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You are not required to care for your mom. Her needs are way too much for any one person to deal with!

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.
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Whoa! DO NOT LET THEM DISCHARGE TO YOU! You tell them, politely at first, you are unable to safely take care of her. If they start to try to coerce you, you need to be firm. That's it, end of discussion. Your mom needs to go to a nursing home under Medicaid pending. You need to make it clear that you are unable to be there all of the time and be responsible for her. Hopefully they haven't discharged her yet. If you do end up taking her home and it becomes overwhelming, you will need to have her transported to the hospital (call 911) at the first crisis. Keep repeating the process as necessary, eventually the social workers at the hospital will get the message and find an appropriate facility for her. Please keep us updated.
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BurntCaregiver Aug 2021
Definitely, don't let her be released into her care.
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