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.
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.
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.
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.
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.
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
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.
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.
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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