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.
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.
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’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.
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.
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
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!
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.
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.
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-
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))
It is impossible for one person alone to provide that level of care 24/7.
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. 🙏🏼🦋
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.
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.
Probably too much for 2 or 3.
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.