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Unfortunately,everyone's hands are tied here- hospital can't keep her if she doesn't need that acute level care, especially with beds at a premium due to the flu. Afib is usually treated with meds, and if she won't take the meds, there's nothing else the doctor can do to treat her. They can't place her if she hasn't been deemed incompetent. Even doing a mini mental in the hospital could lead to false results. If she makes repeated trips to the ER, however, I think the hospitalist will want to discuss the situation - they're usually pretty direct about this.

A relative recently left rehab to live home on her own - mini mental showed she was ok, ambulation looked ok, she's deemed competent so she went home. Within 24 hours, she exhibited signs that there are in fact cognition problems and she's back in rehab. We all knew it wasn't a good idea to go home (time for AL), but she had the right to make the call. We're hoping that now she'll get seen by a neurologist (they're usually a few months out on appointments) quickly.
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NeedHelpWithMom Feb 2020
Yep! Sad but true.
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Elaine, you can't care about her more than she cares about herself.

Have you discussed with her doctor the fact that she is not managing her symptoms? Does SHE realize that she has a fib and understand the dangers of not taking meds?

Has the doc ordered a neuropsych exam, which will possibly show her lack of insight and ability to plan?

Folks who are still competent who realize that they are "slipping" are sometimes able to trust their adult children to make critical decisions for them. Others dig their heels in and demand that they have things their way.

The thing is, in my view, is that WE as adult children can only cajole, suggest and point out benefits of care to our parents. If they choose to ignore or mistrust us, I think we have to back off and give them the opportunity to come to the end that they've chosen for themselves.
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NeedHelpWithMom Feb 2020
Oh, how true! My mother was very stubborn with me. I can relate to the digging in of heals.
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Needhelpwithmom, I wish I could detach and not give a sh*t.
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NeedHelpWithMom Feb 2020
Elaine,

You’re not alone. The only reason I somewhat detached is because my mom is with my brother. Truthfully, she needs to be in a facility. My brother is not well. He is a heart patient. My sister in law works full time shift work. If she were alone, there is no way that I could. Just being honest...when mom was at her house and wouldn’t answer her phone, I would hop in my car and drive over to check on her. Where was she? In the bathroom. She didn’t have a cell then.

This may sound terrible to some but I feel like the deacon that visits the memory care where Lealonnie works who says that he prays for his mom to die so her suffering to end. I think there comes a time when death is a blessing.
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I’m going on the computer to tell the family doctor everything you just said Barbbrooklyn. Managing Afib and a psych exam. I know in the hospital they weighed the pros and cons of the blood thinner. The downside of the medication is it causes bleeding. So she declined to take that medication.
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AlvaDeer Feb 2020
I am 10 years in with chronic a fib, Elaine. I have chosen to do only the baby aspirin daily, because as a nurse some of the most awful things I saw were a direct side effect of blood thinners. No problems for me, but an individual choice.
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Needhelpwithmom, thank you for your honesty and kind words. I also in the past have called her and when she didn’t answer, drove over to make sure she was alright.
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Elaine,

When my mom did home health her nurse told me about a former patient of hers that was essentially homeless. He stayed with this person and that person. One person allowed him to use their address but he would move around to different places all of the time. That is heartbreaking that the elderly are homeless.

Things needs to change with the treatment of any homeless person but especially with a senior citizen homeless person.

We have the UNITY program in our city but there are certain stipulations so not everyone will have housing. Plus, there are people who can’t navigate on their own. Think about it, Elaine. Could your mom have functioned well without you? No way! But are they considerate to their only daughters who did the most for them? Nope! It’s a puzzle that I got tired of figuring out. We did everything for our moms and got treated the worst.
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AlvaDeer I am so sorry you have this. I certainly respect your decision for not taking the medication and my Mother decided against it also. My Mother takes very little medication as it is. She only takes potassium, waterpill and metropolo, not sure of the spelling of that one. She use to take cholesterol medicine in the past but the doctor took her off that about a year ago because her cholersterol was low. I know it is all a personal choice whether we want to take medication or not. We have to weigh the pros and cons. What one medicine fixes for one thing, it can hurt us in another way. You have the advantage of being a nurse and sees what happens first hand. I wish you the very best with this.
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Riverdale, she reaches out for help because she doesn't want to die. The first thing she says when she sees an EMT is "I don't want to die!!"
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NeedHelpWithMom Feb 2020
Elaine,

In a way they are caught in limbo. My mom would say to me, “I don’t know why God is allowing me to live this long. I want to be with your father.” The other part still wants to live.

I know one older woman who tells me that she is afraid to live and afraid to die. So sad.
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I agree with you worried in cali!!
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You really do not want your 95 y/o mother taking any life saving measures here ANYWAY Elaine. The decision to take no medication is fine, imo. In fact, my mother went on Cymbalta about 12 days ago and the side effects are unbelievable. Let's just say she's been blowing up my phone every day demanding to know 'when we're picking her up to take her home?' Her confusion level is through the roof, so I had to dx the meds this past Tuesday. Palliative care is what's called for in the very elderly anyway, again in my own opinion. Extending THIS life........? What for? Let your mother be......of course it's hard, nobody says otherwise. But she is making a choice and you can't stop her, so step back and only intervene when you MUST. She may wind up in rehab one of these days after a few too many trips to the ER...........that could be a game changer, too. Try to hold on tight here and do some deep breathing exercises.
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Thank you lealonnie, I appreciate your answer! I appreciate everyone's input so much!! I just sent a portal message to her family doctor since she is suppose to be seeing her on Monday. I know that her own mental illness that she has had forever is getting in the way for her to want to go to assisted living. When we were in the hospital the first time this month when i met her at the hospital, she told the social worker that she couldn't live on anyone's schedule but her own. She sleeps all day long and is up all night long. She has her own way of doing things and that is why she won't let anybody else do them. Not justifying this in any way, just letting you know her mindset and why she won't listen to me. I tried calling her just now at 3:30pm she is sleeping because she takes the phone off the hook so nobody can bother her while she sleeps. She is upstairs sleeping and all of the doors downstairs are locked. I still haven't gone over there. I have to go over there sometime to bring in her mail. It is 12 degrees here and going down to 3 degrees in upstate new york today so I won't be going out today. Thank you everyone for your help. You have helped me. Whether you realize it or not. You have helped me. Look how long i have gone without seeing her so far? You have helped me realize she is going to live and die on her terms.
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rovana Feb 2020
Take care of yourself and your family. Please. You so deserve it.
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The truth is, hoarding is a mental illness that is anxiety related. She CANNOT throw things away; we can't understand that b/c we don't suffer from the problem ourselves. But to her, all that 'stuff' including the trash is 'treasure'. It protects her and makes her feel safe. To remove her from that environment and to impose a different lifestyle and schedule on her would be horrible *in her eyes*. I can understand that. Perhaps the best thing to do is to see this from HER standpoint and to allow her to live/die on her terms. It hurts YOU more than it hurts HER, you know Elaine? If she winds up dying as a result of this lifestyle, she's okay with that. YOU aren't, because you know you can clean the mess up, etc. But to her, that's like a death anyway. It's too late........you can't fix this........so what you're doing is really the right thing and all you CAN do, given the situation.
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This reminds me of 1978 when she was court ordered to go to a psych facility for harrassing her brother n law and sister n law and she harrassed them by telephone for months and months. She was court ordered to get help or go to jail. She still wouldn't go to the facility. My father tried to take her and she refused to go. So, the cops came to the door and forced her out the door and into the car. She didn't leave willingly. At the facility they drugged her up for 30 days and sent her home. I was 16 at the time. She was looney on the drugs so when she got home she went off of them and she never went back or got any help again. Now here we are again, 22 years later. Trying to help her and her refusing to leave her home. You are all so right. Why worry about her? She's not worried. She's upstairs sleeping with the phone off the hook so nobody can bother her and the doors locked to make sure nobody comes in.
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NeedHelpWithMom Feb 2020
Wow! The cold, hard truth is enough to make you feel any which way that you do, Elaine. Seriously, you have every right to be upset.
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Apparently, I don't understand the definition of "competent". My mother's doctor said she was competent and had the right to make her own decisions even if they were bad decisions. ??? My mother just passed away last month at 88. She had lived alone in a two-story house with a basement and a garage - all filled with stuff. When she was 85, she was in a car accident and spent a week in the hospital. I told her that I didn;t think it was safe for her to return to her house until it was cleaned and all of the obstacles were removed from the floors. It looked like a hoarder's house. She was furious with me and demanded that she go from the hospital to her house. She had to have home health care - visiting nurse, physical therapist. I spoke with the hospital social worker and told her that, in my opinion, the house was not safe for her in its condition. Still, she was released to her own home. A visiting nurse came to the house two days later. About two days after that visit, in investigator/inspector came to the house, unannounced, and my mother allowed him into the house. He told her it was a "hazard" and she had to clean it up. He returned in two weeks to find the first two rooms and a bathroom all cleaned (my brother and I and two nieces had cleaned it). The investigator told my mother those two rooms were fine, but that the other rooms were still hazards and had to be cleaned as well. He said he would return in two weeks. He never returned. He closed the case. The clean rooms were full of garbage and obstacles within a month. A year ago, she had to move in with my brother due to her medical conditions. After one month, she told she had made the biggest mistake of her life by moving out of her house. I tell you all of this because I learned the hard way that hoarding is definitely a mental illness. My mother was fiercely independent (mentally) and would scream at me if I suggested she do anything that involved change. My sadness is from thinking of lost opportunities for joy and happiness. Instead she chose to live in what appeared to be a miserable situation that she created. She had multiple falls, even at my brother's house, due to refusing to use a walker or cane and the fact that she was trashing her bedroom there and had obstacles all over the floor. I don't know the answer. I can only tell you what I observed. At some point, one must step away from the stress, all the rejected offers to help. Otherwise, you may become ill yourself. Is you step away, you may feel some "guilt" but you will probably experience relief as well. I wish the best for you.
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NeedHelpWithMom Feb 2020
My word, this hoarding situation is awful for so many families. So sorry your family dealt with it too.
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Lealonnie,

This situation is very similar to when I cared for my brother who was addicted to heroin.

I realize hoarding is different but it’s kind of like an addiction. Both situations are mental disorders.

Oh God, I tried so hard to get him to go to rehab. He was not going to do it. Some people do turn their lives around. I wish he would have but didn’t.

I had to do exactly as you are instructing Elaine to do. It took me a long time before I could back off. I had to let go.

I have to tell you that before he entered the end of life hospice facility, I continually felt as if I would find him dead or someone would notify me of his death.

Finally, my anxiety rose so high that I had to step away until he entered hospice. It was such a relief that I was no longer responsible for him. Hospice was.
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Rovana,

I know. I guess I am not expressing myself clearly. I suppose I should say that I wish they could convince Elaine’s mom to accept help. It’s sad because how can being alone be better? Especially, in an unsafe environment.

No one can work miracles. They have to want it. If they don’t they have a right to be protected but of course family members want what they feel is best for them.
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My gosh, how can this be right? Staying away and letting the chips fall as they may??? How?? How can this be right??? I haven’t seen my mother since last Thursday which was 8 days ago!!! I called my mother tonight at 6:30pm and she sounded anxious. I told her to take deep breaths. She was upstairs. She was telling how the fireman went upstairs and was going through all the rooms. I’m sure he was looking at the clutter and looking for smoke detectors. I reiterated the appointment for Monday with her doctor. I asked her if she was ok and she said she was fine. She was pleasant but also sounded breathless and a little anxious. I asked her if she wanted me to call 911 and she said no. I told her I would come over Sunday and bring in her mail. This just seems so wrong. Sunday will be 10 days since I have actually seen her. Knowing that this AFIB could cause a stroke because she isn’t taking medication for it, is freaking me out!!! I meant to say the fireman was there on Thursday night. She never went to the hospital on Thursday. She never called 911 at all on Friday. She is alone there. Every time she calls 911 and they come out, they charge her for that 911 call. I mean on paper this all sounds like the right thing to do but this is tugging on my heart strings!!!
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NeedHelpWithMom Feb 2020
I get that. Nothing may happen and then again, something might. It’s almost impossible not to be unnerved because she is alone.

So, did the social worker express what others have done in this situation? It’s not like everyone can afford to hire a private sitter for around the clock. That would cost a fortune.

Elaine,

Has your mom ever had help from Council on Aging? They help with baths, preparing food, light housekeeping, being a companion for 4 hour shifts. It’s only a few hours a month but better than nothing. It’s free and I am sure that your mom would qualify.

Do you think your mom will eventually become so scared that she will agree to placement somewhere? Can she afford to pay for a few hours of sitting?
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Needhelpwithmom, thank you for brainstorming with me. You just reminded me why I have been going no contact for so long. Because I know deep in my heart that nothing is going to change without something drastic happening. Like if she is made to clean up the mess by the code enforcer,,and not going to assisted living unless she really does have a stroke.,She has said it over and over to everyone that she doesn’t want help at her house even if it is free. Needhelpwithmom,,thank you. By you giving me all those nice and reasonable suggestions , makes me remember she WILL NEVER AGREE TO ANYTHING!!! You just helped me with that and you probably didn’t even realize it. A sound person would jump on those suggestions, but my mother is severely mentally ill. She is a severely mentally ill conniving, manipulating, genius!!!! Thank you Needhelpwithmom!!! You have just helped me more than you will ever know!!!!
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NeedHelpWithMom Feb 2020
You’re welcome. I just remember the hell that I put myself through with my brother. He was never going to change either. It didn’t bother my brother how his craziness effected me. I bet it doesn’t get to your mom if she drives you nuts.
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Zelda, her living conditions are nothing new. She has lived like this for the last 20 years. Even the fireman was there before and he said it looked like this 13 years ago. It was actually 8 years ago he came to the house, but irregardless, it looked like this 20 years ago. She takes call a bus to the grocery store, takes the motorized shopping cart, and when done shopping and gambling can ride the motorized shopping cart to the liquor store, buy her liquor and then come back to the grocery store and wait for call a bus. She’s a 95 year old genius who makes bad choices and she won’t let anything help her. Even in the grocery store she said people are always trying to help her and she says NO!!! I can do it myself!!!
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I went over to my mothers house after not seeing her for 10 days. She was in good spirits and I stayed for 3 hours. She was telling me lots of stories from the past. A lot of the stories I never heard before. Nothing earth shattering or anything just talking about her past. Then she told me that she has 2 leaky valves in her heart. She said that the doctor told her that she was too old for surgery and too old for the blood thinner medication. So then we just kept talking more about the past. I don’t know what the prognosis is other than the doctor at the hospital said it could cause a stroke. Thanks for listening.
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Elaine, it sounds as though your absence may have "reset" your relationship with your mom, at least for now. Good job!!

She can choose her own medical course of action. She is making a legitimate choice and has clearly talked to her doctor about this.

Go once a week and enjoy her on her terms. Don't stress.
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Thanks Barbbrooklyn, yes it was very nice. I haven’t had a nice visit like that in ages!!! She wasn’t even whining or complaining about anything. She gave me money today for gas money, McDonald’s that I bought her, she gave me money to give to me nephew for plowing then end of the driveway last Tuesday.,I paid him yesterday and she reimbursed me. She gave me money for me and my son for shoveling most of her driveway last Sunday. She told me next time call a plow and she would pay for it. I came home with a bunch of 20’s in my hand and she told me thank you for everything.
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Elaine,

I am glad you had a nice visit with your mom. She sounds a bit more appreciative. You are doing all that can be done. It does sound like she has accepted her fate. She sounds like a woman who wants things on her terms, for sure.

I am glad surgery isn't routinely done in the elderly. Same with medication. They don't always have to be taking more medication than is absolutely necessary.

My dad had heart surgery in his eighties due to a blockage. I was concerned and questioned his heart doctor. The doctor encouraged him to have the surgery because he could not have lived if he hadn't. He actually made it through the surgery fine. Shortly afterwards, while in the hospital recovering from surgery, he had a stroke, which is always a risk, That was tough. He was never the same after his stroke. I took care of him. He was so loving, kind, appreciative for everything I did for him. Most people are not as humble as he was.
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Needhelpwithmom I’m sorry about your dad. Did he have his mind when he had the stroke? Could he communicate with you. The doctor said my mother could have a stroke because her AFIB is going untreated. From what my mother told me today, the leaky valves in her heart are going untreated also which gives her a much higher risk of stroke. I’m so glad to hear your father was appreciative of everything you did for him. That makes all the difference in the world!!!! Just to be appreciated!!!
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NeedHelpWithMom Feb 2020
Daddy's mind was in tact. Stroke victims are confused right after the stroke though. He needed therapy At first he went to rehab at a nursing home. Then I took him three times a week for speech therapy. He would get frustrated and a bit depressed because my dad was very independent. Daddy was slowing down. He had been a very hard worker all of his life. He was worn out. He had to work from the time he was a young child. His family was a very poor family in rural Florida. He had to quit school in the fourth grade to work and help support his family. He went in the service. He was stationed in New Orleans, met my mom. They married. He worked, went back to school, raised 4 kids and my cousins too when my aunt and uncle died. So he was worn out. I adored my father. Oh, we had our rough patches during my teen years but I never doubted his love for me.

Mom was no longer driving due to seizures and Parkinson's so everything fell into my lap. It was hard because I was raising my girls too. Sometimes I look back at my life and I don't know how I fit everything in. It is one big blur now. Somehow I managed but I think I was just going through the motions going on autopilot.

I get the impression that your life has been on autopilot with your mom. Yes, having my dad show appreciation was very nice. Mom showed appreciation at first too. I know that she did appreciate me but she started taking me for granted. That makes it more difficult. I know my mom is worn out too. She raised us and my cousins. She didn't have much time for herself. I bet a lot of women of their generation felt fulfilled by their family but also had dreams they never got to achieve.
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Oh wow!! Thank you for your heartfelt comment about your Dad!! Your dad sounds amazing!! I’m glad you have such wonderful memories of him and know you were loved by him. My Aunt called me before I went to my moms last night. My Aunt is my mothers sister n law through marriage. She was my mother’s brother’s wife. My mom didn’t have any sisters. She called me today to say she kept trying to get ahold of my mother, but couldn’t. I unleashed everything on her. I told her about her hoarding, and won’t let anyone help her and won’t bathe or change her clothes. My Aunt was dumbfounded!! She had no idea!!! I never told anyone about my mother before. She was genuinely sorry and wished she could help me. I told her it helped me to vent. She told me to call her anytime. I was thankful I talked to her.
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disgustedtoo Feb 2020
Good to hear that you were able to "share" all this with someone who cares. It is hopeful that she says call anytime - at least you will have someone to at least commiserate with!

Having posted, I then read your post about your visit - that was a big change! Perhaps the visits from FD have "enlightened" her a bit... Or maybe she's now resigned to it is what it is? Hoping that the attitude adjustment remains, for your sake. As for the medical condition, surgery probably isn't a great idea at her age, but she has had 95 years and counting. Eventually we all run out of time. Enjoy her while she's being "nice."
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disgusted: Yes, I know that the house did not catch fire and that the lady had a panic attack.
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Elaine,

Your aunt sounds sweet. Lots of people don't know what goes on behind closed doors. I am glad that your aunt was understanding about the situation.
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My mother went to the doctor by herself with call a bus. The doctor told her she HAD to go to assisted living because she was in unsafe living conditions. She said the fireman, the EMTs, the hospital staff and her family doctor all said she is in UNSAFE living conditions. She is due back to the doctor in 2 weeks to check her potassium level. Supposedly my mother agreed to have a home health aid come in until she goes to assisted living. The doctor told me which assisted living to call and they are going to send me a brochure and my brother is coming up the last weekend in February to go see it with me.
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NeedHelpWithMom Feb 2020
Elaine,

She’s going? She agreed to go? Wow! Fantastic! 👍🏻
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Got my fingers crossed, Elaine!!!!
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Riverdale Feb 2020
Great literary minds think alike.
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My mother is in agreement TODAY!! Doesn’t mean she will feel the same way tomorrow.
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