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I've been the sole caregiver to my mom for the last 10 months, who has rapid onset of Alzheimer’s, Vascular and Lewy Body Dementia with behavioral disturbances and is completely incontinent and bed bound. She requires me to do everything for her. She does not even try to fix a pillow herself to be comfortable. She doesn't help at all when I have to turn her to change her and she is 220 pounds. If she doesn't get what she wants when she wants it, I suffer from constant non stop verbal abuse and not stop calling me. My 11 yr old son can't handle it anymore. I can't handle it. I need a break from all this madness and overwhelming amount of work. I am applying her for Medicaid this week but it will take 3-6 months I am told. In the meantime I am trying to find a place for respite care to get a break and the cheapest I've found is $5,560! How does anyone afford this?! Does anyone know anywhere that is cheaper. I am in Virginia Beach, VA. I just desperately need a break. I'm emotionally and physically exhausted.

Your mother may need a legal aid attorney. She may need to file for bankruptcy. She should then be able to pay for what she needs and relieve you and your husband from having to pay.
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Your son and husband come first. Your mother does not need to be living in a 2 bedroom apt with your family. You are not responsible for your mother’s debts or her care. Find a nursing home that will accept her Medicaid pending. It might not be a 4 star hotel, but that part of the price she will have to accept for not planning. I know it’s harsh, but that’s the result of her failures.
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Check with Area on Aging center in your area. I know only too well what you mean by needing respite and you are entitled to a day or two off or even a vacation at least 1 time per year for at least 1 week. While I can't say that you won't have some worries during respite care, it will give you a different kind of break. Connect with the social worker at the hospital in which mom frequents, talk with her PCP, talk with people at a church if you are a participant in the entity.Even connect with Department of Human services in your area. I wish you the best of luck,
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"my husband is stuck working non stop so we can afford what she needs." What is it that she needs that she can't for herself?

Take her to a different hospital next time, so you will be dealing with a different social worker.

You have got to get out of this hellish situation. It is not fair to you, your H, and your 11-year-old son!

Yes, Medicaid approval can take months, but she doesn't have to live with you during that time. Refuse to take her home from the hospital. Can you do that?
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CTTN55 Oct 15, 2020
oops....I meant to write, "What is it that she needs that she can't pay for herself?" Is it because of the bills she is paying off? What kinds of bills?
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The cost of a nursing home is astronomical without Medicaid.

Respite care is very expensive too.

You’re in a bind! Nevertheless, start looking at nursing homes now. Explain her situation to them. See what they tell you. Ask to speak to the social worker.

I am so very sorry that you are living in this nightmare. I hope it will end soon.
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lmcdermott Oct 16, 2020
Thank you
I spoke with hospice today and I think there will be some relief in site! Plus they should be closing on her house Nov 30 and the lawyer said he will file for Medicaid once it’s closed on.
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ImC, Take her back to ER asap. Do NOT take her back home. Do NOT take no for an answer. Say it would be an UNSAFE DISCHARGE. Tell them you are unable to continue to care for her as you have developed back injury from lifting her. Take care of this tomorrow morning. HUGS 🤗
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lmcdermott Oct 16, 2020
When she went I sent her with a letter explaining how belligerent she is to me verbally plus hitting and kicking me and how it’s effecting my son. I told them all the trouble I’m having hiring help and pretty much begged for any help the care coordinator could give me. She was nice enough to call Adult protective services on me, that was her helping. I spoke with her doctor today and a hospice coordinator and they are going to help me. Then Medicaid should kick in and I’ll have more options.
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Your situation is the perfect example of how difficult it is to place someone with no money on your own into a nursing home. The only way around this mess is the "ER dump". The next time mom is in the ER don't accept the rude care coordinator. They can find placement in nursing homes, trust me. You need to be adamant you cannot take her back home because everybody's health would be at risk. Nursing homes take Medicaid pending and will be paid retroactively once approved. Its up to you.
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Is your Mom on any meds? Sounds like she might need something. Since she is bed bound, I would switch rooms with her temporarily— give her your room for now so you can provide care and then shut the door. Don’t allow the verbal abuse. If she gets up and falls, I would call 911 and have her brought to ER for evaluation. Once there I would tell them need placement as can’t care for her. I know first hand how hard this is and can’t imagine doing it while being verbally abused. Sending hugs to you.
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lmcdermott Oct 16, 2020
Thank you
I can’t get her in my room. One my husband would be very upset with that and two cant get the hospital bed in with the walls and door set up. I spoke with hospice today and I’m hopefully they are going to help me. We do go in our room and close the door lol you ask her to stop, yell at her to stop and then get pissed and tell her to be quiet and no matter how you approach it she just keeps going so going in my room and shutting the door is the only way to get away from her and that. She is on meds and I find it incredible they do not knock her out. I think she needs elephant tranquilizers lol
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If you call an ambulance to take her to ER ...tell them you are physically, mentally & emotionally unable to be her caregiver anymore. Social worker there will work with you to have her placed in NH. Otherwise, if you have Nursing Assessment come to house & then shop around to different nursing homes admissions...you still have to get her there...& she’s too heavy for a one person transfer from bed to WC ..unless you have lift machine & don’t have to deal with stairs....? ..Hugs🤗
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lmcdermott Oct 12, 2020
I actually had her in the ER last week because I thought she may have a vowel obstruction. Didn’t have a bm in a week and was complaining of stomach pain. I sent a note asking for help from a care coordinator and the woman made me feel worse than I already do. My moms very well cared for. She is clean, not one bed sore, bruise, anything. Clean clothes and hasn’t been in the hospital in 5 months. I have an attorney who is supposed to be filing for Medicaid next week since my mom moved from out of state and had a home we had to deal with first. She has no money as she reversed mortgages it. But the care coordinator was rude, told me she talked to me 5 months ago and told me my only option is apply for Medicaid otherwise everything is private pay. She said I have however contacted adult protective services for you. I said why would you do that she isn’t being abused or neglected and she’s like I’d have a serious conversation with them if I were you. All they did was come and see she is being taken care of and let me know it could be months before I get Medicaid and gave me the same numbers everyone else does for help that gets me no where. I don’t even have time to make a million phone calls and then they want me to come see the facility, really? I can’t leave her alone. I just feel like I’m trapped with no where to turn. I’m going to see if a place will wait on Medicaid like another lady suggested in the thread, when I can actually make some calls again.
thanks!
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Some NHs will take a patient with Medicaid pending, please start looking around
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lmcdermott Oct 16, 2020
I will!
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Is mom on Hospice?
One of the "benefits" of Hospice is that Medicare will pay for almost 1 week of respite each year. In addition to that Hospice has Volunteers that will come sit with your mom.. They can not do "hands on" care so you might be limited to 3 or 4 hours each week.
You can check your local Senior Center they may have Volunteers that could come sit with mom for a while so you can get out. There may be other programs that she may be eligible for that would also provide weekly service of a caregiver.
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lmcdermott Oct 12, 2020
I’m going to find out if she can get on hospice, but it takes forever. Everything takes forever around here. When she first came to live with me it took 3 months of people coming and just doing reports to finally get someone to come help give her a bath 2 times a week and I did everything anyway so how was that a help? I will never put my children in this position. My mom has no money, no life insurance, no savings or bonds or anything whatsoever. She gets her SS and that’s it which has been paying and catching up on all her thousands of dollars of bills she never paid so my husband is stuck working non stop so we can afford what she needs. This process has been so slow and people have not been helpful at all. It’s been extremely difficult. Then when I talk to her about going in a nursing home she cries and begs me that she’ll be good and don’t do that to her. She was in the hospital once for a UTI and called me everyday begging me to come home crying hysterical that she doesn’t want to die there. She had nurses aides using their cell phones to call me, it was worse than her being home the week. Everything falls on me and I just wish I had someone to help me. Thanks for your reply
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I agree that you should consider placing mom in the NH for real, not just for respite. After a break you will be right back where you started and in need of another break. It's too much.

So sorry, I am not looking forward to the day that I will have to have this convo with myself. So far, my workload with my mom is low but the writing is on the wall as her physical and mental well being continue to decline.
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lmcdermott Oct 12, 2020
It is extremely difficult. My mom told me yesterday that I just need to accept this is a life sentence. It wouldn’t be so bad if she wasn’t so verbally abusive to me and she acts and talks like she’s entitled to me giving up my life to change her diaper and everything else she wants. Last night she tried to make her great “escape” out of bed again, she’s bed bound, she sure can move when she wants to escape but when I ask her to turn over she can’t, she’s in to much pain and lay there and makes herself a hundred times heavier. Anyway, I didn’t have ice cream so she pitched a fit from 9:00-1:30 in the morning trying to get out of bed, threatening me, putting me down and on and on. It was an unexpected thing for her to come live with us and were in a 2 bedroom apartment right now so she is in our living room so there is no escaping her. She does this anytime she doesn’t get what she wants from food, to a tv show, to being paid attention to. They will sedate the heck out of her in a nursing home and leave her for hours cause of her self righteous attitude and behavior. I had to hear for hours how I don’t take good care of her and she’s gonna go live with her brother or sister who don’t even return her calls. No ones called in 6 months and I always get the if you need anything let me know but don’t need anything cause I’m busy. I just never expected this to be happening and it’s exhausting and I thought finding help would be much easier. I’m just tired and look at that being called again to fix the pillow behind her neck!
thank you for replying
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Sorry, but I would get her in a NH ASAP. There is no way you can care for this person with all she has wrong with her. In my state you have 90days after applying to get all criteria met and place the person.

I guess Mom has no money? Good way to spend it down. The only way I have heard to get respite care free is thru Hospice. And Mom probably doesn't qualify for that.
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