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About 9 years ago, my mom had ovarian cancer, a knee replacement, and cervical laminectomy in quick succession. She and I have a fraught relationship (I was abused), but I have taken care of her for the last nine years--going to her house every other day to take care of everything and keep her company, since she is barely mobile--using a wheelchair except for brief trips to the bathroom or bedroom with her walker. She has alot of mobility problems, and falls often.


I've been struggling with a spiraling depression, and finally reached out to PACE Southeast Michigan to see if they could help me help her. It's an in-home nursing home diversion program. Mom does not want to go into a NH.


The day before Pace was scheduled to come out and do an assessment, mom fell and broke her femur just about where the artificial knee was built into the bone. Then in the hospital, they did some scans and thought she might have lung cancer. I found out today that she doesn't.


I'm struggling with what to do next. They are talking about discharging her from rehab in two weeks, but she can't sit up without help yet, or stand, or walk, etc.


Money is an issue. If we liquidate all her assets, aside from a modest house, she has enough for about 6 months in adult foster care or assisted living, or 3 months of in-home 24x7 care. Then we would be with nothing left and she would qualify for Medicaid NH.


I've reached out to an eldercare lawyer, who recommended a case worker ($750) who is planning to come out to talk with mom tomorrow. The nursing home also offers a discharge placement service that could help, but I am leaning toward the case worker, since I don't trust my judgement. I'm at the point that I pray for one of us to die in our sleep, and while my goal has been to outlive her by a week so I don't abandon her, I don't know if I can stay the course.


She still thinks she wants to go home. She seems to think she'd do better there, which is clearly impossible. She can't turn over in the bed by herself, let alone get a glass of water, change her diaper or ostomy bag, make a sandwich. I think she thinks I will move in and be her CNA, but I can't. I just can't. I'd die. Of course she would probably die of a broken heart in a Medicaid nursing home.


I'm looking for advice about caseworkers (worth the money?), and assisted living verses adult foster care, versus medicaid spend-down and a permanent placement. I just don't know, and it's just me. She's widowed, I never married, I have no siblings, and no friends. We're alone with this, and I don't know what to do.

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Are your finances entangled?

I think a caseworker or elder care attorney are well worth the money. SOMEONE (and it shouldn't be you) needs to explain that she needs more care than YOU can give at home.

Is your depression being treated?

I don't quite understand why someone who was abused by their parent as a child thinks that they should do hands' on caregiving. It must be soul-murdering.

I had a "good enough mother" but would never have allowed myself to be hands on simply because I was told "suck it up" "offer it up" "don't make mountains out of molehills" so often as a child that it was my first (unspoken) and not very charitable response to any and all of my mother's problems. Had I lived with her or vice versa, it would have killed me.

The fact that you are thinking that the best outcome is for you to die is an indication that you are severely depressed and in need of immediate treatment. If nothing else, talk to the social work department at rehab and get a referral for counseling to help you through this hard time.
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Reply to BarbBrooklyn
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Seaglass,
I'm a bit worried for you. You have to get yourself into therapy pronto. You have to take care of yourself in order to be a positive advocate for your mom.
You can stop blaming yourself about how much money you have, or have saved, or doing the right thing, or whatever. It wasn't your job to do this. It's not your fault that the system is unfairly stacked against less fortunate families. You did nothing wrong, and now you are trying to care for an aging parent. There is nothing but kudos involved here, so you please try to be kind to yourself.
Ok, so about your mom. What you have to keep in mind is this. It is your job to make sure she is safe and cared for. You are not able to do that yourself now, and no one would be. She's a fall risk and she's recovering from a serious broken leg. She's still got some months of recovery, and hopefully she'll be able to walk again but that remains to be seen.
Every adult child on this site describes a parent who does not want to go to a facility. I won't either, but I don't know what will happen when I am 80 or 90. No one wants to give up their independence because it means truly facing mortality and that is scary.
What is this $750. fee for? What do you get for that? Does this person act as your liaison indefinitely? Is there some sort of hourly fee within that price? You need more information about this.
Personally, I was able to get help last year at the Jewish Federation in my city. They have a dedicated person who assists seniors only. There was no cost to me, and I got a lot of excellent, warm, and loving advice based on experience. Whoever helps you needs to be up to date on the particulars of your area. You don't have to be Jewish to call the Jewish Federation, but there is probably a Council on Aging in your state and/or city. Before you spend that $750., please see if there's an agency that can help you for free or for a much smaller fee.
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Reply to Rabanette
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cherokeegrrl54 May 12, 2019
Very wise advice...
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I'm so so SO sorry that you are suffering like this, my friend. My heart goes out to you in a BIG way. I don't have 'the answer' for you here, I just wanted to let you know something: my cousin was caring for my aunt in her home for well over a year. Her mom was bed bound and pretty immobile. My cousin called in the family members to say 'goodbye' to my aunt, as it appeared she was getting ready to pass away. For some reason, and memory escapes me now, my aunt was placed in a Medicaid nursing home right after that family visit. Instead of passing away, she flourished in the NH, living another 3 or 4 years and she did just fine. So, I seriously doubt your mom would 'die of a broken heart' if you were to place her in a LTC facility! Since she refuses to do for herself, she MUST be placed in a safe situation where you can go visit her from time to time. That's the kindest thing you can do. And then, you can see about taking care of YOU!

All the best of luck.
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Reply to lealonnie1
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I would talk to the Social Worker at the rehab. Tell her that you are not able to care for Mom in her home or yours. That you feel LTC is the option you need to explore.

With My Mom I had cashed in all her CDs. She was in an AL for 8 months. Money was running out so she paid 2 months privately in LTC and went into Medicaid from there. I think ur Mom is past an AL.

Her house won't be considered an asset but she also, once on Medicaid, won't be able to pay taxes, bills or upkeep on it. If sold, it has to go at Market Value and the proceeds to her care,
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Reply to JoAnn29
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First DarkSeaglass you were not and are not responsible for "planning" and saving for your mom's future care so relieve yourself of that guilt and any sense that it's you responsibility or fault that she is in the financial position she is, abuse or not.

The first thing I would do is check with this case worker you are thinking of hiring to make sure that his or her fee will count toward/be acceptable for any spend down should she end up needing the Medicaid route. I think it should as long as this isn't an exurbanite amount for the fee in your area but if not that might tell you something too. Then providing it is an acceptable expenditure to Medicaid it's probably money well spent, by your MOTHER not from your funds. It does sound like some professional guidance (working for you) would be helpful at this juncture. If for whatever reason it wont be covered in that process there are other options. Whatever care the doctor orders and want set up, like VNA/PT should have a case worker/social worker available to send out to meet with you and help guide you and might even visit you at rehab to do that as you figure out what to set up. Then of course there is a coordinate of some sort at the rehab facility and most states Agency on Aging have services as well making social workers/case workers available to help elders and families navigate these things too. Check these all out and set up appointments before she is ready for release so you can make an informed decision about the best way to proceed from rehab, I think you are clear that it can't be you moving in as her full time caregiver and that is more than ok. In fact owning that simplifies things and helps the professionals guide you better so it's a positive to feel good about not a negative to feel guilty about and you don't need excuses for this either. You certainly haven't and aren't abandoning your mom, just the opposite you are making sure she has the best, safest care possible. So many of us think that is us and don't learn we are wrong until we have gotten in deep with too many mistakes, not an reprimand and doesn't mean we were wrong at the time because we are all just doing the best we can to do right by our loved ones and that's all anyone can ask or expect. Truth is you are already doing the hard work right now and giving your mom more support than anyone has the right to expect.
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Reply to Lymie61
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Why oh why do people keep calling nursing homes depressing? Maybe some are but all are not like that. My mother in law and my mom did fine and the places were great. But you do need to take an active roll. . That said, if you don't take care of yourself then who's going to be left to help her? You can't bring her home. Don't let someone guilt you into it by making think you are a bad person for putting her in a "depressing" nursing home. Shame on them. How is that helping you? You do what you have to do. Yes, your mom will complain but don't forget, if she gets upset you can always leave. You don't have to be at the nursing home 24/7.
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Reply to whaleyf
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Seaglass,

First of all, ignore Shad. Do listen to Barb and JoAnn. They both have experience with nursing home care. I do not. My mom lives in my home but given your circumstances I feel I wouldn’t have any other choice but a nursing home. You can’t possibly do all that is needed for your mom all by yourself. It’s too much for you to deal with, even with hired help. My heart goes out to you. I’m so sorry you are in this predicament. Many, many hugs and I hope that you get the answers you need soon. Take care. I wish you all the best.
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Reply to NeedHelpWithMom
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When I was read your question/letter I had nothing but empathy for you.It was like I had written it.My husband and I are going through a similar situation with his Mom.Up until 18 months (when we married)ago my husband (like you)was doing it alone.My MIL is 92 with dementia.He moved in with her after his divorce because she was falling a lot and lived alone. He had promised his Dad before he passed that he would take care of her.His older sister had passed away a year before his Dad.As time flew by while we were dating she got worse.It got harder when she decided not to renew her drivers license.When we spoke of getting married he felt it wouldn’t be fair to bring me into his situation. In our 9th year,she was 90,healthy aside from dementia and arthritis,Takes no medication.I thought she could live another 10 years.Do I want to wait? No! Although I thought I knew how much he did for his mom because a lot of our ‘together’time was planned around her needs.
When we got married,moved in,thinking I knew how much he did for her.I was wrong!!! It was such a small fraction of what he does! I don’t know how he managed to date me! Today in the present,she got shingles,went into the hospital for something different. She was there for 3-4 days.Came home,5 hours later she got up (was told not to) to get some water.We have cameras in the house so we can watch her when we’re not at home. I was in our room and he was there in the dining area.He turned to go in his office. He had only taken 3 steps when she got up and fell on the kitchen floor.She ended up breaking her hip!
Called 911,the same firemen,paramedics from the first time,back to ER.2days later she had surgery, 3 days after surgery she’s in a skilled nursing home for her rehabilitation.This is her 8th day at this facility.Convenient that it’s a 7 minute drive.Nice place. She’s in isolation because of the shingles. We have to wear gloves and gown to enter. She’s wearing a diaper cause she can’t walk let alone share a bathroom with anyone.Because she’s a risk of getting out of bed my husband had to hire a babysitter per the NH suggestion.The sitter comes from 11pm to 8 pm.Between her Medicare and secondary insurance the NH is covered.The sitter is out of pocket. I’ve heard so many stories from many of my clients in regards to NH,caregivers etc. I also have a soft spot for elderly people as a majority of my clients were seniors. When someone has dementia someone has to be their advocate. My husband with his culture and his personality its going to take something really big for him to speak up. One of us gets there about 9:30 10:00am so we can be there for her PT and one of us stays until the sitter comes at 11 pm. I am shocked, pissed and sick in regards to how poorly some of the staff is let alone the lack of compassion. Which is how I came across this website and your letter. Go to California Department of Aging. Or whatever state you live in. It’s to help guide people like you in situations like this. Many resources that many of us aren’t aware of! Please do yourself that favor. I was so relieved to get information I was looking for!!! Take care of yourself too💕 I will be updating myself on your situation! Take Care.
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Reply to Lsosaki1014
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An update on my mom, who this post is about. But first, thank you all from the very bottom of my heart for your responses. It's a lifeline to have someone to talk to.

The caseworker came out yesterday and talked to mom about her options. While I'd prepped mom beforehand, she was very, very upset. She said she can't believe that conversation was her mother's day present this year. She won't admit being angry with me, but clearly is, and I expected that. I haven't heard back from the caseworker yet to hear the caseworker's side of the story, and I called the SNF social worker a couple days ago but haven't heard back yet.

I did get a call from physical therapy, and they said that she's not making much progress, that she's not motivated, that she'll say she'll do exercises in her room, time and again, but then doesn't--just wants to be put back in the bed. This has been my experience for the past 9 years--she will not do anything to help herself. She's fallen and had in-home rehab at least four times. While they're there and doting on her, she wants their approval and affection, but she does nothing when they're not around. Her tentative discharge date is 5/23, and they don't think she'll be walking or standing yet. They don't know if she will be walking or standing in three months or ever. There are alot of physical mobility problems that have been there for years.

Mom only wants to go home. I explained that she needs 24/7 care, which would cost a fortune. She counters with we can put a potty chair next to the bed, and have someone come in a couple hours a couple times a week.

I have a doctor's appointment this afternoon, and I'm hoping he can give me something to help me function better, so I can make a sound decision. When I think about going to visit her tonight I get bile in the back of my mouth and I can't stop crying. Being this much of a mess is really not helpful to anyone.

I thank you all for your responses. I know nobody can fix this or tell me what to do, but I really appreciate you listening and trying. God bless.
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Reply to DarkSeaglass
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shad250 May 13, 2019
She wants to be home not a depressing NH
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"I'm at the point that I pray for one of us to die in our sleep, and while my goal has been to outlive her by a week so I don't abandon her, I don't know if I can stay the course."

That's heart-wrenching and while I don't have any solid advice for your problem, I really hope and pray you find one. Nobody should have to live like that.
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Reply to TekkieChikk
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