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So I've been on this forum for a while, going through the Hell of dealing with my mom's decline after having two strokes within a year and developing vascular dementia. I gave up my job, and since we already lived together I devoted myself to being her full-time caregiver, believing the hospital when they told me that she needed time and rest and she would get better. She hasn't. To say that the past month has been hard would be a dramatic understatement. Mom is not to blame for anything because I know she can't help it, but it's been impossibly painful and difficult nonetheless. Mom is incapable of taking care of any of her personal needs, and I'm pretty sure that her meds are to blame for this but she has had uncontrolled diarrhea at least two or three times per day for a while. I tried contacting her doctor about it but they are incredibly slow. A few days ago she woke up very disoriented, aggressive, and when I tried to tell her we needed to go to the hospital, she grabbed my wrists and squeezed until bruises appeared, then spit in my face when I called 911. They admitted her to the hospital and, shocker to no one, she has another UTI. She keeps getting infections because she is unaware of proper bathroom habits and, as much as I try to keep her clean, I cannot do so 24/7. She is restless at night, wanders our small apartment like she's lost, and most frighteningly tried to go out the front door about a week ago. I have tried my best to take care of her, but with her third hospital visit in two months, I have to face facts that it's not working. I am also trying to take care of myself and as a type 2 diabetic I am suffereing big time. I am exhausted, depressed, stressed to the max and now I am worried about her safety as well as her health. She is currently in the hospital, and I have made the decision to keep her there until she can be placed in an assisted living facility, at least for the time being. I never, ever wanted my mom to go to a home, but I truly do not see any other alternative. In addition, since she didn't sign up for Medicare and she has too much money in her savings for Medicaid, we now have to spend most of her money (and my entire inheritance) to private pay for a facility until her assets reach $2,000, at which point Medicaid will kick in. So now I'm jobless, terrified, wracked by guilt and sadness and fear and uncertainty, and I have to go tour an assisted living facility tomorrow. I hope I can do so without vomiting. My mom is only 65 and I'm only 37, and yet I feel like my life is total chaos and every ounce of security that I've ever had is gone. I don't see an alternative to my decision, but I also don't see any scenario in which mom and I will be happy. Strokes and dementia are unbearably cruel.

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Wow....so sorry to read what you are going through. That is a lot. But, it does seem like you have a very workable, thought out plan. Keep Mom in the hospital. Found an assisted living facility for her, I hope the tour goes well at the facility, ask lots of questions and if possible look at another facility just for comparison sake. I would talk to a lawyer who specializes in elder law to find out about fiances and your rights. Good luck tomorrow!
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rovana Dec 2021
Ariadne, there may be no possibility of keeping mom in an acute care hospital, unless she is being actually treated. And it would be expensive since she would be private paying.
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It has reached a point where it is no longer safe for you to have her at home. It is not safe for her. It is not safe for you. You, if you were to keep her at home would need help daily and if she wanders at night you would most likely need help over night.
At 37 you are far too young to give up your life to care for your mom. I am sure if you were to get in Sherman and Peabody’s wayback machine (and you will have to google that cuz you are too young to have seen the show) and ask your mom if she would want you to give up your job, your life to care for her I am 99.99% sure she would not want that for you.
You can be her advocate, care manager you don’t have to be a full time caregiver.
Look for a Memory Care facility that will take care of her, they can be the caregivers and you can be her daughter.
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She sounds like she is beyond an AL. I would look into an SNF.

Meanwhile, do not feel guilty. Because it should go like this:

Step 1: The senior is legally independent in their own home. At which point do stuff for them as you are able, but you're not their unpaid workhorse. They should be thanking you at Step 1 or even perhaps slipping you some pin money for this.

Step 2: The senior's needs have devolved so that they want you or need you to do everything. That should only be done if you have POA over everything if you're supposed to do everything. They should be grateful. If they are not but are acting up, and if fecal or violent behavior is involved, there is no choice but...

Step 3: They need to go into a facility. By this time it's not usually AL, but usually the best memory care or SNF she can afford, and if not the family can make sure she gets one of the nicer medicaid beds. They should still be grateful, but if they haven't through 1 and 2, I doubt it would hold true in Stage 3.
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Rosewater, please don’t feel guilty. Your mom is lucky to have such a caring daughter. You stepped up to the best of your ability and now you will help her in a different way.

About the job offer you turned down, when things are more sorted out is it possible to check and see if that employer might still be interested? My impression is that there are a lot of businesses looking to hire good people now.
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bundleofjoy Dec 2021
“Rosewater, please don’t feel guilty. Your mom is lucky to have such a caring daughter.”

totally agree.
you really, really tried rosewater.

i guess you have considered also the idea of hiring professional caregivers to come to the house? sometimes that’s cheaper/better than a facility.

but i understand, sometimes the situation has gone too far/there are too many problems/illness too deep/too dangerous, and a facility is needed.

i wish you well, and your mother too!!
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Get the diarrhoea investigated. You say you suspect her medications are to blame, but there are other possibilities and this point is well worth tackling.

See if the ALFs you visit will consider an initial trial period. That will give you a breathing space so that you're not having to make final decisions at exactly the point when you're under so much pressure.

Best of luck, let us know how it's going.
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Especially with the wandering, and the progression of vascular dementia, it would seem that she is past regular assisted living, and needs a locked memory care. The regular assisted living apartments are mainly for mostly mentally compent elderly that need more physical help, like with dressing or bathing, and medication management, and laundry/housekeeping . She would need to be able to find her room, know how to get to dining or activities, and could still wander out her room or out the many exits of the building; they aren't monitored that closely, especially at night..
My mother's Memory Care cost 7,000/ monthly. She's affording that via LTC insurance combined with her SS/retirement savings. Her LTC will last about 4 more years, then it will be all private pay. But she is 91, and unlikely to outlive her money. Many assisted living/ memory care do not have Medicaid beds. Those are mostly in regular nursing homes. Depending on her finances, it might make more sense to start out in a nursing home, to avoid having to move when she qualifies for Medicaid.
When you tour, make sure that you ask about payment options.
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The money is for your mother’s care. It doesnt become your inheritance until she passes. If she runs out of money she can get Medicaid.

You’re a good daughter. You have nothing to feel guilty about when you place your mother. You’re seeing that she gets the care she needs.
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dear rosewater,

it's very clear you gave your absolute best to your mother, and you continue to do so. i'm sure if your mother could see everything you're doing for her, she would be very, very grateful.

you wrote a few day ago:
"I am exhausted, depressed, stressed to the max"

i really hope every day, the situation is improving for both you and your mother, and that good solutions are appearing.

bundle of joy
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You’ve done a commendable job in caring for your mom, at great expense to your own wellbeing. I’m glad you have the courage to make this change to keep you both safe. Her needs may be past AL, ask the places you visit if they’re appropriate for her when you relate her needs. Strokes were the cruelest thing my mom went through, she required SNH the remainder of her life. I’m grateful for the kind and compassionate care she received. Please guard your own future, get back to work, and change to being mom’s advocate in her new setting. I wish you both peace
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You've done all you can, and there isn't any better alternative. You're making the right choice.
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You are not going to be able to put her in AL. SNF or probably MC. Hopefully they can get her bathroom issues under control. And keep her safe. This is way too much to handle on your own.
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Get mom enrolled in Medicare. She has 3 months prior to, the month of and 3 months after turning 65 to enroll with no penalty. That is 7 months, hopefully, she falls in this time frame, if not, it is what it is and she pays the price for not following the rules. Her rate will depend on her tax return 2 years prior to turning 65, so, yes, she could be looking at fairly expensive insurance because of the surcharges but, it will be way cheaper then 1 hospital stay. Find an insurance broker to help you choose what is right for her right now.

Medicaid may require her to sign up, ask them, because it gets more expensive the longer you wait. They may refuse certain coverage because she is eligible and not signed up with Medicare, coverage is not guaranteed by Medicaid, do everything you can to mitigate the situation.

I can't feel sorry that mom has to use her money for her care and you don't get an inheritance. Put your big girl panties on and earn your living and retirement, it is your responsibility to provide for your future.
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Rosewater Dec 2021
Wow, thanks for all the judgment. You know, a lot of people come on to this forum because they feel free to share openly and admit even their darker feelings, which we all have. "She pays the price for not following the rules", huh? Well, not that it's any or your business but she didn't sign up for Medicare in time because SHE HAD HER FIRST STROKE BEFORE THE DEADLINE AND DIDN'T KNOW ANY BETTER. You might know that if you had bothered to ask instead of just making an assumption. I was not aware of the deadline rules until they were already up and I was going through her old mail trying to help her and get both of our lives on track. In addition, if I didn't have my "big girl panties" on I wouldn't have stepped up to the plate and basically dropped my entire life to take care of this woman that I love more than anyone else in the world. I do not think that it is selfish or immature at all to mourn the loss of an inheritance, my mom often told me that she was saving that money for that reason specifically and that she was proud of that fact. Again, not that it's any of your business, but I've worked my a** off my entire adult life and have always paid my own way, until I had to give up a well-paying job and spend my own savings taking care of my mom. She is worth every penny we both have and more, and I was simply distressed at the prospect of no longer having a financial cushion for either of us. It's because of people like you that some people are afraid to share on sites like this. You, judge without knowing the circumstances, and you try to make good people feel bad for having human emotions and thoughts that we all have at one point or another. I am going through the worst ordeal of my entire life, in a life that has been filled with tragedy and hardship, and the very LAST thing I need is for some stranger to come at me with a bunch of critiques.
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Rosewater. Let me tell you this. I too lived this for 5 years but what you are saying is happening now I wish the medical advise was truthful with you. Unfortunately the strokes will come sooner in-between. She will not get better because of the strokes and the dementia will snowball through all the stages quickly. Infections like UTIs will be common so know the signs. Low Temps and aggression. We hired a sitter first of all because it was becoming to much for me. She was a church member that did previous sitting before. She sat 3 days a week which let me have me time. I actually went back to work 2 days a week. We switch mom to a Senior Dr that knew how to help us address the the symptoms of the fast growing dementia and kept us up on the stages. Gave us reading material on what to expect. Gave mom meds to take at night for her safety and so we could rest. We had an alarm pad on her bed if she got up and one for her chair too. Medical supply $40 a pad. But again, unfortunately mom had 3 strokes in 18 months. 2 left sided where she went to rehab and came back home. The 3rd one was right sided where she lost her speech and eating capability. She went to rehab and we were making precautions to bring her home to a hospital bed but her health declined and she was tired. She passed with me by her side but had been in transition for over a week. I know the "what do I do" thoughts within itself is exhausting. I hope something here will give you guidance and many prayers for God's will. You will know you did everything humanly possible for your mother. After each stroke and after each rehab you should have a home health agency given to you also. The social worker should give you advice and networking agencies that can assist you from the home health agency.. Medicare gives you that. The home health agency is given to you before you leave the hospital by the hospitalist. You will be in my prayers and thoughts. Take care of you.
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Rose, (((((hugs))))).

Were you able to tour facilities? How did it go?
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My mom at 83 had a psychotic incident and was not herself at all. 911 was called and the ER baker Act’d her (Florida) for 3 days in a psych ward. They tested for UTI and found none but they did find that she was not taking her thyroid med and her self care was abysmal. We took her home after a week and trying to find a facility for her. My sister wanted a MC and the MC evaluation determined she was not a candidate. I wasn’t sure what to do so my husband and I lived with her for 8 months while we took her to docs and found that she had dementia characteristics and normal aging and definitely needed the antipsychotic low dose Olanzapine. That med saved her. She is not in agony with fears and terrors. She is most of the time sweet and responsive but still cannot care for herself and forgets recent events like eating, drinking, or talking to us. We got her to look at a AL since we had to travel for a family event and she didn’t want to go. She picked one that she could afford and moved in for 3 months (respite). After 6 weeks, she loved it and it is home. We hired a companion for her while we were gone since in AL, she can say no and they have to back off. The companion who we introduced as a friend of ours was someone that did not have to follow the AL rules. All this was from October 2020 to now December 2021. Mom did great and loves her apartment and meals with the ladies. However, she is now declining due to not being social and resisting suggestions from the staff. We took a tour through the MC unit in the same facility 2 days ago and found that the residents there are high functioning and because of the schedules are more social and involved. They eat together, they get high protein nutritious snacks and they drink fluids. Medications are administered too. The process of moving her is going to be delicate. I don’t want to break mom’s heart. Prayerfully going forward, it appears that God is slow walking me to the MC unit. I have been told that mom is more confused, does not have a UTI and doesn’t leave her apartment. I know of her staying in bed all the time because I have a amazon Alexa show 5 to drop in and I took her iPhone, zip tied it to the standup charger and changed the settings to it will automatically answer after 10 seconds. I made the ring a Duck quack and have it announce the caller. I also blocked all calls from those not in her contact list so she will not get the scam callers. I changed her voice mail to say that this VM is not being used and to call her daughter (but I didn’t leave a number). She may have friends who are not in her contact list so this would help them still get in touch with her through me. This next step is going to be okay because I know that God loves my mom and us and he will guide us. I believe it will happen in the perfect timing. (When there is a available apartment for her-currently full at this time). I created a scenario where I take mom out for mani pedi and lunch and my husband moves all her stuff with the staff’s help. Then I get a phone call when I am with mom and find that there is a water leak in her apartment and mold has formed. Mom is allergic to mold. This is a true statement of the water leak-mom puts the heat and AC on at the same time and the 2 units create moisture and water logged carpet which needs drying weekly! I have said all of this because if you can get her in MC (check it out first and make sure it is high functioning people like your mom) she wont have to move again. Also check out the price and if it is all inclusive. See how much it costs with the full package. Mom refusing the paid help in AL was a frustration to me and wasn’t helping her. I also have to call before each meal and get her out but sometimes she is sneaky and opens and closes the door making me believe she has gone to the meal. I have come to know that she doesn’t know where the dining hall all the time and that keeps her from going.
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"I never, ever wanted my mom to go to a home, but I truly do not see any other alternative."

Big big sigh. That's about it.

We don't want ourselves or loved ones to get old, ill, suffer quick fatal accidents or diseases & certainly not long drawn out cognitive decline. But ..it happens.

I wish I had more to offer you than a forum ((hug)). But you have a plan now. It's OK to feel anger & sadness too.
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Rosewater: most of us will be on your side. Ignore the snipers; for the most part, they just can’t understand. You’re in a living hell and must find some help or respite of some kind. No ONE person should have to endure what you’re burdened with. It takes a village to raise a child; it takes a village to care for elderly people too!! Your own self-care must come first, or you won’t be able to care for anyone. Get whatever social services & counseling are available. Are you an only child? Any relatives around to help?
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I am sorry you have to make a tough decision like this. My Mother and Father went into an assisted living facility over two years ago. I looked at many facilities near them in Delaware and settled on a newly opened facility 1/2 mile from me. My parents did not have dementia but the facility has a memory care wing.

do not feel guilt over this decision. She can’t make it for herself and it is clear she will be safer in a facility with people trained to deal with her situation. You can go back to work and take better care of yourself which will enable you to take better care of her.

Dad just passed away and my Mom is on Hospice but stable. I see her most days, I handle all the finances, bills, etc. and try to make sure she has a good quality of life. We don’t dump them at the door and leave. We still care for them but the medical help is there.
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I can empathize with you. My mom had a stroke and several years later Alzheimer's kicked in. We tried Assited Living/Memory Care, but it just didn't work out, so Hubby and I brought her to our home, and we took care of her for 5 years. My mother-in-law also had dementia, but she coped quite well in Assisted Living/Memory Care. I even wrote a book about taking care of my mom called, "Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." It can be a trial and error dance to find the right treatment, medication, etc. You're right; it's exhausting and depressing being a fulltime caregiver. Maybe you could take your mom to a geriatric psychiatrist, and see if they have other suggestions re: medicine, activities,etc. Sometimes, we learned, it can be a UTI and something else. Not all Assisted Living Facilities are the same. I'd suggest visiting several at different times during the day, to see how residents and staff interact. I'd also suggest seeing an eldercare lawyer (some legal aid for seniors is free), and see if they have fiancial suggestions. Also, if your mom goes into Assisted Living, I'd suggest visiting her there at different times, so you can see staff members from different shifts. Good luck.
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Rosewater - I am sorry my dear for your dilemma and certainly understand the array of feelings that come with caring for someone you love and watching them decline. I know as I took care of my dementia ridden mother for five years. Moving her in and I too did not work to care for her.

Regarding finances, know that your Moms funds are for your Mom’s care, nothing more, nothing less. If in the end, there is money left, then that’s what would be your inheritance.

Now more importantly on to her care, if the current arrangements are not working, then do look around, research and feel good about your decision. It’s not to say that if you move your mom out that you can’t bring her back to your place.

If you decide to keep your Mom where she is at, may I suggest getting a part-time caregiver perhaps in the mornings or every other morning to give you some time to regroup.

Remember too that this forum is a great community to get advice from and sometimes just vent. I know in caring for my mom that there were times I just did not think I could do it anymore and I would come to this forum, vent and then put my big girl boots on and go back to it.

My dear Mom has been gone almost two years now and I look back on my time caring for her and while it was the hardest thing I have done, I am honored to have had the opportunity to care for her and provide her with a loving place to end her final journey,
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Rosewater
You and your mom are young. Your mom could live a long time regardless of her present condition. That takes money. I suggest you seek the assistance of a certified elder attorney to help you navigate your moms care financially and legally. She won’t be the first person to have a catastrophic event occur at retirement age.
Each persons state laws and personal circumstances are unique and this collective forum, while knowledgable of their own personal experiences, can’t give you the level of advice you need now. There is no place more expensive than the hospital to have her placed in a holding pattern and in spite of what you want to do, it’s doubtful they will allow her to stay there if no additional treatment is called for at
this time. They will be ruthless in trying to get their money reimbursed. I am sorry for what you are going through but pull yourself together and get the (assumed) insurance benefits your mom is entitled to. You have nothing more important to do than act on this immediately. Dont let yourself get distracted or hooked into others opinions. It’s time for action in order for you and mom to have a better life. Being in assisted living is a good thing, not a bad thing but it’s really only for those who can afford it. Seek legal counsel.
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I just want to say I'm sorry. My Mom had a massive stroke almost 3 years ago. She passed away in February. I was only 40 at the time of her stroke.

Tthankfully she had already done POA papers for she and my Dad because he had dementia and she was trying to be prepared for him
God bless her. None of us expected her to need them first.

My Mom took care of both my Dad's parents when they became I'll and had cared for him for years with his dementia. She was adamant about never wanting to go into any type of facility and I swore I'd never let that happen.

However, the stroke left her completely paralyzed on her entire left side. Couple that with Dad's dementia and I didn't really have a choice. My husband and I did move 9 hours to be closer to them and visited daily until covid prohibited it.

I remember being where you are. It's overwhelming and scary. And sad. Yes, you know it's your Mom's money and she needs it. I can tell you are not a greedy person. But it's sad to have to spend her hard earned money like that when you know it's not what she would want. I would gave gladly spent every dime if it could make Mom whole again. But spending all of her money so she could still be miserable was a terrible thought. As was the thought she wouldn't have enough for what she needed.

I agree it sounds like skilled care may be more the level she needs. Ask her doctor and hospital social worker.

Ddefinitely go see a lawyer specializing in elder care so you can save what you can.

Keep your eyes open when you visit the facility. Check out what they serve for meals. Notice if it smells clean. One thing we also had trouble with one place was the facility over medicated Mom so she would sleep all the time. Check out Medicare ratings (you can google them) to compare care options.

Yyou've done the best you can do for your Mom. She's lucky to have you. Hang in there!
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You have gone above and beyond what you should have done and you must never, ever feel any guilt or sorrow as to what needs to be done. Forget the part that she can't help what is going on - that may be true but that never justifies the suffering and negative impacts this has on caretakers and families who must come first. These people have lived their lives and if they can't abide by certain standards, we have NO CHOICE. THEY MUST BE PLACED. That is where they belong - not destroying the lives of others.
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Riley2166 Dec 2021
Seek an eldercare attorney at once and try to determine what, if anything, you can do to preserve some of the money. If you can, great but if you can't, there is nothing you can do - it is her money and if she needs it for her care, what choice do you have? If you keep her with you, you will be destroyed. You can't have your cake and eat it too.
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Get connected with a local social worker and senior networks in your area so that you can explore your mothers (and your) options. You also have to think of yourself and your future. At age 37, it may not be practical for you to not be working and to dedicate yourself to caring for your mother. You also need to put aside savings for your own aging. If your mother needs 24/7 care, and you cannot provide it, you have 2 basis options: get aides to come in and help you when you need to sleep or have a break, put your mother in an assisted living facility. You do not have to be the one caring for your mother. Your responsibility is to make sure that she is properly cared for.
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I too finally had it after several incidents where the police got involved. I went to the court house and talked to a Judge about a 1013. She signed off on it. She was later escorted to the ER. From there they transported her to a facility to be observed and stabilized. She was there for 8 days. Can back a new person. She is now in an assisted living at 90 and doing really well. Turns out she too had a UTI. Be strong, it is hard to watch, but it was worth the pain.
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Please make an appointment with a Certified Eldercare Attorney (no other kind). They know all of the ins and outs of Medicare, home ownership, loopholes, etc. They may be able to help you & your Mother tremendously. It may save a lot of private pay $$$.
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Rosewater: I am very sorry to hear that you had no other option but to quit your job when you are in your prime earning years, though I certainly do understand that mother is quite ill. Your mother needs to see her gastroenterologist to get the uncontrolled diarrhea in check. It is a good decision on your part to find an assisted living facility for your mother. Best of luck in these challenging times that you are facing.
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You're very right; strokes & dementia are unbearably cruel. But what you're doing to yourself here is also unbearably cruel! Mom needs 24/7 care now that you simply cannot provide, being only one person with 2 hands. You'll burn out and collapse, and then what? A 'home' is the only alternative you have, in reality. And you've attached SUCH a stigma to managed care that you're making yourself sick over the prospect of placing her! Stop doing that! Understand and realize that it's the right choice for your mom now. See an eldercare attorney, as has been suggested to you here, and then proceed accordingly. I doubt mom is Assisted Living material; it sounds like she needs Skilled Nursing at this point, but look at Morningstar Assisted Living because they DO take residents who require more care than usual.

Here is what I found in Bellingham Washington when I Googled it:
Morningstar Senior Living LLC
2315 Williams St, Bellingham, WA 98225
(360) 920-9598

Give them a call & see what they have to say; if they'll do an assessment on your mom (as all ALs will do before they agree to accept a resident) and what the monthly charges will be.

So try to change your thinking and redirect it now; understand that mom will be getting the kind of care she needs, and you can go back to being the daughter again instead of her full time caregiver. Then you can go visit her whenever you want and bring her small gifts & spend some quality time together w/o the anxiety and worry about how to clean her up and care for her needs all by yourself. You're not doing a 'bad' thing; you're doing a kind thing.

My mother is very ill with advanced dementia & a ton of other health issues & has lived in AL since 2014, and now Memory Care since 2019. It's been the best, most life saving decision for BOTH of us, honestly. She gets great care, and I get to live a life while still managing HERS from home. It's not like we 'give up' on them; just that we allow teams of caregivers and nurses to do the hands on caring for us. Please recognize that and let yourself heal from the guilt you've heaped onto yourself unnecessarily. You didn't ask for your mom to get sick but sick she is, and this is what's necessary for her wellbeing.

Wishing you the best of luck with all you have on your plate.
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rovana Dec 2021
You are right - the thing to concentrate is getting the best care for mom and that is not necessarily in her/your home. And OP must care for herself.
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Talk with social work and case management to help get your mom into her new home. Seems she needs 24/7 care and no 1 person can do that alone. You are making the right decision.
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Hi you are doing the right thing for mom wow both of you are young. My name is Gloria my heart goes out to you and mom..I have been taking care of my mom with Alzhiemers, catheter, bedridden she is 90 and lives with my brother but I'm responsible for her.. She has been in hospice for 1 yr. And I told myself if it got to the point that I can't do it any more then I would put her in a home as much that it would hurt me and sibs..I'm not a nurse I learned the hard way..There are resources out ther. Just Imput elder care near me/ or 211 number/ I'm from San Diego Calif.. I will keep you in my prayers...If you ever want to talk reach out to me....Take care🙏🏽 🙋🏻
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