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To make my long and grueling story into a shorter one, my caregiving journey was not truly presented to me accurately at the beginning. Therefore, what I thought I was agreeing to was not what played out. I thought I would be either providing a lot of care and re-orientation to her home environment over the SHORT term (she was supposed to get better over time), or I'd be providing minimal care over the long term (I had already been doing a lot of this for the person). Either of those would have been fine.

What happened was a disaster. Incontinence, leaving the phone off the hook so we could not reach her, calling the police for no reason, medication errors, wandering at night, brandishing a blade to fend off an intruder who was not there and never was there, failing to lock doors, leaving doors not only unlocked but wide open, hiding financial documents from me that I needed in order to arrange care for her, leg wounds that needed care (I had already been providing this, but it got much worse), falls and other dire safety problems, moments of drastic disorientation which were hard to predict, and countless other things. She needed supervision and care at a level I could not provide. This was on top of cooking, laundry, shopping, dr appts, phone calls, etc. I had little to no backup. People would tell me to just "hire a visiting nurse" but that's costly and 24/hr care would not be covered by any insurance and she didn't have the money.

Sure, I agreed to help her. But it was supposed to improve or at least stay remotely the same for a while. I do understand that she wasn't going to be a 20 year old again, but the nosedive of a decline and all of the safety problems she had was something I didn't see coming. She had been in a rehab setting and in that protected setting, she SEEMED much better than she really was. I have cautioned people about this experience.... She was able to really work the room at the rehab center and she seemed very normal while there. Her home where she lived for decades was not that protected environment she'd adapted to at the rehab and her true condition became apparent once she was home. She would showtime for people I'd bring in to assess her - including one expert who looked right at LO and told her "No one can force you into a nursing home." Well, where did that leave us? I was still struggling and LO got to remain home and her lifelong entitled self had me where she wanted me - waiting on her and cleaning up her messes (including bodily fluids). I could not keep up and prayed either for an answer or for something to happen to me so I wouldn't have to keep trying. I fear that I'm not adequately expressing all that happened so that I can convey how it really was.

After she had an unwitnessed fall with likely loss of consciousness, I told the hospital she cannot live alone anymore. Hospital sent her to rehab. I told rehab that she cannot live alone anymore and I was not taking her home. Period. She was transferred to a NH bed in the same building. She has done well there. However, I really, truly do believe that it's the protected environment which makes her seem better than she otherwise would be.

Not everyone can be cared for at home. I had plenty of onlookers telling me "All you have do do is____" or "Why don't you just...." or "I have TOLD you how to handle that" and "You cannot just DUMP her in a nursing home so that you can ignore her" all of those other not-so-helpful statements.

I'm still new here, so I'd hate for anyone to delete their profile over others being insensitive/inappropriate. I have learned so much from all of you and I've tried to convey my experience as well when I have something to add. The majority of the comments are helpful and have come from experience and soul-searching. What could be better when trying to make decisions for those we love? Thanks to all of you.
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No one knows what others are going through and by no means should be judged either on here or anywhere else. In fact we should not be hard on ourselves. How many of us have said “I will never” or “I would never”. Ha, not easy to always follow up on. No one knows until you walk in other’s shoes, is what I have always felt. I agree judging should never be done. Kindness and caring can go so far and can be so helpful. We all deserve hugs as we manage through life and this mind robbing disease.
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You hit the nail on the head. Not every person is suitable to be a caretaker and often for very valid reasons that are no one's business. YOU have to do what the best is for YOU and your family. Know there will always be some people to take your side and others will crucify you at dawn why YOU are so selfish. They are wrong, wrong, wrong and it is none of their dam business and I would tell them that. Please do what you feel is best all around but if she is placed, check out the places and keep tabs on her. I am on your side.
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lealonnie1: Genius thread! I had a real dilemma of what I would do with my mother's elder living arrangements since she demanded to live alone in her own home 7 states away from mine. As many of you know, I had to move there, but it wasn't go to be FOREVER. We thought we had struck upon an answer when we had mother finally situated in an SNF. But oh no, they had a family meeting and said to my mother "You're too well to stay here." So okay - laid down $12K for an AL, only to have to try to get a refund when my mother suffered an ischemic stroke at the SNF less than 48 hours after that statement.

Since no one individual knows someone's situation, judgement should not be passed. The individual in the active caregiving role has no use for it.
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One important point is nowadays most families have both husbands and wives that work. It often takes two incomes to survive.

It isn’t like years ago when many wives were free to choose being at home.

That era did expect wives to remain home. I personally believe that ‘the good old days’ weren’t as good as people made them out to be. Every generation has their issues.

I wonder if many women in previous generations would have preferred to be working rather than taking care of the sick and dying elderly in their families.

They didn’t discuss things freely as it is discussed today.

It isn’t uncommon to have facilities these days. Yet, they are often criticized. Some are certainly better others. No one can argue that there is a clear need for care of the elderly.

I suppose the same happens when childcare is discussed.

Ask any school teacher and they will tell you that the children that don’t go to a preschool program are behind in socialization and academics. This is why Headstart was established for families below the poverty level. Moms do not have to be with children all day long. We have childcare.

We have nursing homes to care for those who can’t afford assisted living or if they need extensive care that perhaps an assisted living facility or a home caregiver could not provide.

In a facility they receive medical care and socialization. I hated that mom would not participate in the senior community center. For those seniors who don’t participate, the burden falls on the caregiver to be everything for them, leaving the caregiver drained!

It is a hardship on the family when a person refuses to go to a facility. Many here on this forum can testify to that, myself included.

People struggle and do their best in the situation that they are faced with.

As for me, I will never burden my daughters. I know first hand how hard it is after caring for my mom in my home.
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FamilyNeeded.....what on earth are you talking about, if you are speaking to me??? My cousin left her mother alone upstairs in her bed for months on end until the woman was dying. Only when she was placed in a nursing home did she spruce up, wake up, and engage with others after being removed from the bed she lived in. I am stating a FACT that not ALL in home care givers are FANTASTIC and neglect does happen there. It's not ONLY reserved for care facilities, as you and many others insist on. I'm not trying to SHAME my cousin, simply stating the truth of that situation. Don't close YOUR eyes to the fact that abuse happens at home too, and from hired help that comes in, and even from sons and daughters themselves......I've seen it myself. Burn out is real.

It's very important for all of us with loved ones in care facilities to ADVOCATE for them always. To check up on them and to make sure their needs are being met, definitely. I had my mother in a horrible rehab SNF and it took me several days to get her out of there and reestablished in a lovely well managed SNF. There are bad ones and good ones, bad home environments and good ones, bad caregivers and wonderful ones, that's the point. It's not a one size fits all solution for everyone.

Joel, what happened in N.Y. with Covid and the LTCs was nothing short of murderous, and now the news is reporting the death numbers were greatly DOWNPLAYED. You have my deepest condolences over the loss of your beloved wife thru no fault of your own.

Worried, I was telling DH the other day that my mother would not be alive today if not for AL and MC. They caught pneumonia twice with her, immediately, and her life was saved 2x as a result. Plus the socialization she gets is instrumental for HER to thrive.
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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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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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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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Thank you
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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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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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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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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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"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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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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S Sounds familiar I finally sold my house Moved into an assisted living facility with my husband
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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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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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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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Thank you so much for this well written post. I truly appreciate you.
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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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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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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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BRAVO
Thought this myself many times.
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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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Well said my fellow caregiver!!! If only those doing the bashing could spend even a day in your shoes.....
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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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I love your post. Excellently stated.
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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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