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I plan to post a comment about the home-care issue (will likely have to split it into two, diarrhea of the fingers!), but there is one person I would like to see shut down.

Riley2166, Lockett2166, Rusty2166 is someone who needs to be banned.

This person has NO clue about dementia, yet spews all kinds of bad advice, sometimes bordering on abuse. Changing screen names doesn't change the MO. The "name" used is a hint (always uses 2166) but the comments always have the same tone/message. One shouldn't tolerate the "bad" behavior by those with dementia, doesn't care that it is the condition causing the behavior, demands that one either rather nastily curtail the behavior, let them have it. or leave them in the bed "they made for themselves." I would love to be able to find and point to one post made some time ago telling the person whose LO was incontinent they should tie the person to a tree in the woods until they learn! Perhaps it was removed by admin. I was horrified that someone would even think this much less suggest it!

This person professes to be some kind of genius, who knows all, sees all, yet not only gives bad advice, but complains bitterly about the AL s/he lives in. This person would better serve him/herself by focusing on his/her own situation and finding a place to live that best suits him/her. Taking some time to learn about and understand dementia better would help as well. But no, this person knows it all and has ALL the answers! Not.

After raving about what a GREAT job s/he did as POA for several "friends", s/he abandoned one who clearly developed dementia. Quite clearly his/her POA experience was limited to helping some people who just needed some minimal help, not helping someone with cognitive issues. That person who was abandoned became somewhat paranoid, "lied" to {name}2166, made accusations or whatever, which are clear signs of dementia. Rather than taking steps to ensure proper care for this person and continuing to act as POA, or ensuring the state takes over, s/he took this behavior personally and dumped him! The whole point to having POA is to be able to manage their health and financial concerns, and when necessary, take steps to ensure their well-being and safety. Nope. I was treated horribly, so I'm dumping the person. Clearly no pangs of guilt or regrets.

Admin, if you read this, consider banning this person. There are very few times when a little advice given is okay. The MANY comments that are NOT okay and often border on abusive suggestions outweigh any benefit from this person's "help."
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Wow disgustedtoo I don't think I've come across the person you reference, but then I tend to steer away from threads that become acrimonious or that AgingCare promotes and therefore generate dozens of responses. I have noticed other obvious trolls and a few others that I suspect are not really what they claim to be though.
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DG, haha I just commented on another post about Riley/Rusty being allowed to use 3 profiles here. I couldn’t remember the 3rd name, it’s lockett2166 as you pointed out and they have a history of controversial responses. They are living in an assisted living and are unhappy over their situation which is conveyed in their responses. Only reason I say any of this is because they have been using 3 profiles to do this and it’s gone unnoticed until now.....
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worriedinCali - Oh I've noticed! That one about tying someone to the tree caught my attention. As noted in the other thread you posted in, the MO is generally the same. I can usually tell it's this clown without even seeing the name. I was initially questioning a different name, but the 2166 gives it away. Now there's a 3rd name being used. I would like to see this one shut down. Never responds if anyone says anything, so likely either ignores or just doesn't read our responses. All 3 profiles still seem to be "active." Initially I thought maybe it was a way around being kicked off the forum, but apparently not. Maybe this one can't remember their own profile name? Whatever the case, it would be nice to get this one gone.

I don't read every posting we get. If the topic isn't something I have any experience with, I usually skip it. As a result, I may not see all the comments this one posts, but those that I do see, ARRRGH! Often I post a reply, but I at least post something so the OP and others aren't turned off by the comments! Bad enough having the home-care-warriors, but this one is really something else!!
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Most homes are good. I worked 27 years in the nursing home business...yes it is a business...sometimes the concern is more subtle than “abuse “ per se....What I do not see is how we are judged by the very care workers at the memory care facility we trust to take care of our parent.....My mom ..woke up after 6 months of deep dementia, hallucinations and paranoia...she was admitted not able to walk, almost comatose..10 months later she is great...... ..she has Lewy Body..a type of remission can happen......two “workers” recently told her ...”I do not think you belong here”.......what????? A gal that gives her a shower has enough medical knowledge to make that observation and discuss it with an ill 87 yr old? Now mom is struggling to be happy there..she started saying she got locked up by me...she had been content..her disease at any moment can send her into deep dementia and hallucinations!! So....I am having her evaluated for a change to a different facility where the workers hopefully are better educated on Lewy Body..mom is unsafe at home...goes up and down cellar stairs carrying boxes, she moves heavy furniture with a back issue, uses ladders, {uses a walker for balance}, goes down a hill on ice to get the mail, leaves burners on and towels near the stove...she refuses to eat...lost 20# when living alone...she needs 24/7 supervision... THAT is why she can not live at home...no one should judge our decisions...I am sick of people trying to second guess this horrible situation!!
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Thank you for sharing. My father was a very emotionally and psychologically difficult dementia patient. I’m using the word “patient” for a reason. We never question families who send their family members with cancer to the hospital, but we do question it when we search for higher level care for family with dementia. Dementia is a disease just like cancer. Just like people who suffer from terminal cancer, the options for care are many and varied depending on the needs of the patient. When it came time for dad to move to a memory care facility, we had him help chose the one he liked best. He was more at peace with it because we were able to do this. He still wants to get back to his old “home” on the lake, but the caregivers at his memory care are fantastic! I really can’t complain at all. The hardest part is not being able to see him physically because of Covid. We are doing window visits right now. Even with this type of care, I often feel tired and exhausted! I visit him almost daily (facility is 20 minutes from my home), and often feel guilty when I don’t. Since he’s moved in there, he’s been far less combative and sarcastic with me. I think it’s because I no longer have to respond or deflect questions about driving, push dad to change his briefs (he was incontinent) or help him avoid specific physically dangerous situations that might cause him to fall, which he often resented. We just visit with each other! He’s happier and so am I.
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I applaud you for your well stated post and commend you for your caring decisions with regard to your loved one.
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I myself was one who when I first moved my mom, who lived in PA, in with me,living in SC, more than 2 years ago said it was an honor to care for her. I love my mom very much
She was always my go to person with any little bit of news I had. My best friend.
Bit little did I know what to expect with Alzheimer behaviors. It was not easy to say the least. She was not the mom she used to be. Although she did thank me many times a day for caring for her. She needed help with most everything. So I educated myself , reading books about the disease.
Ohe thing that I have not seen much of, if at all in these posts is the issue of money.
I know that many caregivers keep their LO at home because of selfish reasons. They do not want their inheritance going to a facility.
I know that many caregivers keep their LO at home because of promises they made to their LO to never place them.
I know that caregivers keep their loved ones at home because the LO does not have the money to be placed ...and it's not cheap. This reason to me is a good reason.
My mom always told me I don't want any of my kids taking care of me when I get old. I was always secretly glad when she said this because I never wanted to be a caregiver. But when she got Alzheimer's she couldn't remember she said that. She would waffle back and forth on telling me to put her in a Nursing home as she didn't want to take over my life to why can't I live with you. You are an excellent caregiver. At times she didn't know I was her daughter. Because I was her caregiver.
I have no family around me who can help me except my daughter who helped me whenever she could.
In those 2 years I saved my mom's social security check which was $1700 a month. After 2 years I had enough saved so that I could get her into Assisted Living. I found out though after 6 weeks that she needed more care than what they could give her. With the permission of the facility I had a camera installed and was able to see her and talk with her. She then went over to the Memory Care Wing which is wonderful. They have her up and engaged. They help her with everything.
When she was with me ..it just started to take over my life. I was crying a lot ...for her and for myself. I was terrified thinking...what if something happens to me...what will happen to my mom? I have one brother in PA. One brother who lives 1.5 hours from me..but he still works full time. It would be a mess. At least now if something happens to me, there would be time for my 2 brothers to talk and work it out. All 3 of us have our names on the POA.
So what started out as an honor for me, thinking my mom would stay with me..did not end up that way. But I believe I did the right thing for both of us. Yes. She only has so much money, which if she outlived her money, I will need to apply for Medicaid and find a Nursing home that accepts Medicaid.
Bashing and Judgement never helps anyone.
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I love your post. Excellently stated.
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Couldn't have said it better. I would like to have the resources, when needed, to provide care in a nice facility without leaving me without his income. It is always good to remember their are two sides to every coin.
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Thank you. As someone in the process of researching memory care facilities for my mom, I appreciate your thoughtful words.
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BRAVO
Thought this myself many times.
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Beautiful said .. I think everything you shared can be applied to life in general . Judge not as you also will be judged. We should all do the best we can with what we have to work with . It has also amazed me at some of the responses that are voiced on this forum .
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This commentary is spot on. My husband moved to an ALF after his day care program shuttered due to Covid. He stayed home with me till I recruited companions 7 days a week to keep him engaged and active. But as the community shut down, options for outings to malls, restaurants, movies and other activities that he loved also shut down and he was miserable - and became angry and combative. My daughter and I made the decision to temporarily place him in an ALF till the covid pandemic passed. After searching for the best, we found one with a covid free history about a half hour from home at a cost of $6800 a month. I had limited companion visiting but, as a former RN, observed questionable protective practices which I brought to leadership's attention. But in the end, the fact is that staff and visiting service providers go in and out of the facility without stringent policies protecting residents against possible contagions being brought in by these 'providers,' the residents cannot be safe. My husband wasn't. He died in Dec from Covid. I did what I thought was the best but now I'm dealing with wrenching guilt.
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You are wonderful to post this. So absolutely right - but the haters will continue their negative chants until their own bodies break down as mine did and I could no longer care for my husband. He is now thriving in Memory Care and I thank God daily for them.
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Thank you so much for this well written post. I truly appreciate you.
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You are spot on! I was on the other side of the fence when my 96 yr old parents refused to leave their home and refused to hire any help. My husband, son and I did what we could living 3 hrs away but visits always meant hours of hauling away garbage and doing just basic cleaning up. We were threatened by others about not doing anything but we couldn't legally. No POA or Durable POA. Mom passed away at 96 and dad moved in with us at 97 but still refuses to relinquish any control over property or money. Its difficult and we try to do the best we can. Its easy for others to tell someone what they need to do but they need to weed their own garden first.
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Well said Lea,

Anyway you look at it, caring for our elderly LOs is a gut wrenching experience!!

We are not all meant to be Doctors or Lawyers and we're not all meant to be in home caregivers!! Furthermore, not all of our elderly LOs are compatible with in home care!

I know beyond a shadow of a doubt that my Aunt and my Mother are much happier and safer being in ALF than they would be as latchkey kids locked away in my home alone for hours on end!!

We are ALL caring in different ways!! There is NO shame in how we go about doing it!!
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Until you lose a love one please don't talk criticize care caregivers like my self . For your information my wife DIED at a assisted living because of NYS governor Cuomo sending positive patients from NYS hospitals into her assisted and nursing Homes where 15,0000 were infected and died Like my wife whom I was married 54 years. I will never stop fight for her and all the people that were infected and died, know matter what you say.

Yesterday the attorney of NY confirmed what all of us knew. All of the families want Cuomo to be prosecuted to the full extent of the Law. wright now the staff in nursing can refuse to be vaccinated and still work their, the monies that these private facility receive for the state are not being used properly to keep our loved
one's safe. Protocol needs to be enforced better. This assisted living facility have one thing in common profits over patients. The AARP INVESTIGATION OF NURSING HOMES will confirm all what I HAVE LISTED TO BE TRUE

Our loved one's did not need to die because Cuomo had the javits center and navy ship ready for positive patients to be sent but instead he sent them to nursing homes infecting thousand of poor seniors and covered it up.
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S Sounds familiar I finally sold my house Moved into an assisted living facility with my husband
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So glad you got that out of your system. I too feel like I am going to explode sometimes. But, not so much because of what others say. Rather it is what I am saying to myself. I have self doubts constantly. I have seen the really good side of ALF and some of the dark side. I know I personally do not have the skill or emotional sufficiency to handle my mother in my own home. So, I choose to place my mother in an ALF. I advocate like crazy for her. But since Covid l have not been able to supervise or even visit inside the facility for almost a year now. I am not at peace with any if this but just taking it day to day and sure that 90% of the time my mother is better off in a facility. The other 10% make me cringe sometimes but I keep the anxiety meds in my pocket just in case.
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"The fact is that no one should shame anyone, no matter what side of the fence they are on."

This is true--but I hope in this forum we can tear down that fence.
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WHY are you bashing your cousin for home care (as seen in your comments below)? You seem to be the one trying to SHAME people for actually being responsible and finding BETTER solutions. There may come a time when you can not handle all the care, but even then you can find people to come into the home to assist. You obviously wish to close your eyes to the FACT that there is extreme abuse and neglect in some of these nursing homes and people should consider that when deciding what to do. I have seen it myself. So don't be so quick to judge those who do not want to follow your advice and want to think for themselves.
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Bottom line is: What you say is true.

Some folks are caregivers and some are not. Some folks simply can't put a parent in a facility. Some may not want to, but they can't/won't disrupt their own life/household. Some had very rocky relationships or parent simply was not a good parent, so the child has no sense of debt in the way of providing caregiving for the parent now. It may be true that what you gave out in the early years is what you get back at the end.

There are so many things to be considered when a parent needs help as they age. The type of care they need, the type of care the child is still providing to their own immediate family, the logistics of where everyone lives, setting up a home to function for the ailing parent. I don't believe any of us should really dog the child if child can't/won't be a caregiver - we never really know the family dynamic or the situation.

However, with that said - many of us have dealt with rehabs, hospitals, etc and know what CAN happen in these facilities. If you can't be a caregiver, for whatever reason, and there is some type of meaningful relationship with the parent, you - at the very least - owe your parent visits, observation, and stepping in when the care is not up to par (even for those parents living in a child's home who is being neglected). Those who cannot speak for themselves, who may be mistreated by an understaffed facility, need someone to be an advocate for them.

Pretty much, in my opinion, it comes down to 'what you can live with'. If you have the ability to put mom in a nursing home, walk away and never look back. So be it. Saints and sinners will be determined by someone beyond our own judgement.
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Back 20 years ago I had to place my mother in Assisted Living. I had DPOA and Health Care Proxy. Had to take her out of the home we'd had for 44 years and sell the place. I took care to keep the contents I knew meant a lot to her so she could keep friendly surroundings. Well, six months after her first AL placement I had to move her to another AL close to me because it was becoming increasingly difficult for me to drive a 184-mile roundtrip to the first one. The second AL was only minutes away from my home and my work. Much better because I could drop in many times a week.

What did I get for that? A few kicks in the @$$: 1, from a sibling who had hoped that the move to the second AL would result in a less expensive monthly cost (AL was/is private pay), 2, an intimidating threat from a financial official at the bank at which I'd parked her funds, when I was dumb enough to ask about Medicaid eligibility, 3, complete disrespect from the first elder care atty we hired (recommended by the sibling, very overpriced, and I severed that connection, got our money back, and went with someone else. If the first atty couldn't respect the DPOA who signed the checks to heck with it) 4, once we arrived at the second AL, a comment from a house care staffer there that she would have kept her family member home instead of placing them in a facility. Have to admit, I went completely ballistic for a moment.

At the time I was 50 years old and terrified of losing my job on the basis of inability to carry out elder care duties and work at the same time. My third-floor home at the time was an unsuitable environment for a frail elder who would need first responders in case of an emergency. My job required showing up at the office every day and staying there. If I lost that job I was sure I would not be able to get another one at my age. Then, more than a decade away from being eligible for Social Security and with what at the time was a pretty flinty retirement portfolio, who was going to help me? (things got much better over time).

So IMO all the clueless family members and judgmental outsiders can just take the next train out of town. If the person responsible for taking up legal, financial and health care proxy duties for an elder (that was me) needs to think of themselves as well as the elder, and gets disrespected, there is no need for the judgers in our lives and they can get their ticket punched somewhere else..
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I'm glad we can use this forum to discuss these sensitive topics. I fall into the category of "I am not a gifted caregiver." I have huge respect for those out there who are. I'm an only child, therefore I do not have to bear the criticism and judgment of siblings, as my husband had to when it came to the care of his mother. His older brother still will not speak to him, because my husband was elected as POA and the sole Personal Representative of his mother's estate. The older brother was bypassed, and has taken things personally and taken his anger out on my husband. In my case, I ended up with 2 parents who were stricken ill at the same time. My parents had taken steps to ensure I was not overwhelmed, had a trust, and I had access to their funds. But, when it came down to making these sensitive decisions, my father demanded that they both stay in their home, and have me move back home, or have myself and my husband alternate with caregiving tasks with fill-in home nursing care. (24 hour a day nursing care for 2 people is approximate $600 per day, not to mention the expense of maintaining their home, etc.) Although alternating care with nurses sounds ideal, I can tell you in our situation it was a nightmare. The logistics of scheduling nursing care and balancing our schedules wasn't working, everyone was stressed, and there was absolutely no quality of life for my parents, it was just daily tasks being accomplished and chasing my mother around (severe dementia) trying to keep her out of things, and basic care needs for my father who was suffering from a new diagnosis of cancer and taking radiation treatments. My mother was being isolated, my father was suffering in severe pain, we couldn't keep up with the housework, maintenance, groceries, medication pickups, doctor's appointments, and scheduling, rescheduling. Thus, we moved my parents into a lovely assisted living situation. I was lucky in this regard, after visiting multiple facilities, as my mother had a dear friend who had been in the assisted living we chose for over a year and her family had high praise for it. Once we moved them in, my mother was dancing and singing in memory care, my father was receiving one-on-one care and once again was able to enjoy a few hours a day without having to worry if the nurse would show up, if the kitchen faucet would get repaired, if the lawn was being mowed, etc., etc. It was a relief to us to be able to visit and enjoy our time with them, as opposed to running around attending to them, the house, food preparation, and actually not spending any time enjoying their company. AL works for us, whereas home care did not. I should also mention, my husband and I are still working, running 2 small businesses, and moving them into our home was not an option. Although, even if it was, we would have chosen AL. I want to be able to enjoy the time I have left with my parents, and not have it be a constant stressful situation. Again, I am also lucky as they have the funds available to do this.
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Thank you
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Joel, that's very tragic what the Governor did to your wife. He should be held accountable. My condolences, and pray for you to be comforted.

Many assisted livings across the country are taking precautions now to help their residents stay safe, so others don't have to go through that tragedy.

Blessings and all the best
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I remember very clearly my mother saying do not try and take care of her myself.  This was after years of caring for her father.  We held off placing her as long as we could and only when she made the decision for placement on comfort care.  I wished I could have brought her home but my family was in another state and my husband worked night and son was laid up with a broken ankle,  I chose to keep her close to her sister who could visit all day with her instead.
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My mother would thrive in assisted living. She is probably not quite medically eligible but if my parents had to the funds for it, I would not feel guilty moving her to AL. She would not have to worry about cooking and cleaning and most of all, she would be able to participate in daily activities and socialize with other seniors. Living at home, she is not able to do that. There is no one willing to drive her to senior activities and all of her friends are here in California. She herself says she would like to live in an assisted living community because she could be around other people. She has always said she does not want to be a burden to her children. She does not want us putting our lives on hold and sacrificing our financial wellbeing to take care of her. Sometimes I think responders forget that not everyone wants to spend their final years isolated at home.

my FIL was dumped in a nursing home to die. It’s true. It was either one of the children he pretty much abandoned as children, take him home and take care of him with part time caregivers paid for by the state or a nursing home. We all have young children and active lives, all 3 of his children work and have mortgages to pay. He could not afford to hire a caregiver. He moved out here in the summer of 2018 and he did not tell us he had come out here to die. My husband saw the writing on the wall the day he pulled in to town. The rest of us did not. We thought he had retired and finally followed through on his plans to live closer to his children. He was very sick when he got here and before long he was hospitalized and after 4 months in the hospital, we were told there’s nothing they can do for him. Either take him home and care for him yourself with the help of caregivers or put him in a nursing home on hospice. As I said his children have families and jobs and he had no money. So there really wasn’t a choice. He went to a nursing home to die and 6 weeks later he died peacefully in his sleep. Sometimes responders forget that there are elders who have children that are still working and can not afford to quit their jobs, who have families and cannot put their lives on hold.
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