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I placed my LO in assisted living 10 days ago. I was getting sick and run down caregiving and felt "I can't do it anymore." He is having a very hard adjustment period and I am feeling guilty causing this. I really felt this was right but now I keep wondering if it was and should I buck up and take him back home?

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Worriedspouse, I agree. The homecare sounds better. AL takes all the money it can and treatment is shabby. A former friend, an RN, was Director of Nursing at Harvard Park and she expressed disdain to other staff for recussitating people! She got fired, righteously so. Those are the kinds of people working in those places. Bring the person home. It is like being in prison. I live in Independent living and hate it. If I ever get enough money, I will buy my own place away from old folks!
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ChrisA1, My mom has passed on, but 24/7 care in my home would've been around $10,000 a month. That's a very unrealistic expense for the majority of us.
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Living in familiar surrounding is good for your parent.
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Can't you get assisted living in your parent's home.
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Dad could not qualify for ALF with his level of dementia & ADLs. Memory Care provides him with a spacious private room & bath, housekeeping, shower, dressing & medication assistance, meals, snacks & activities. He can (even in his wheelchair) go out to the courtyard when he chooses, & on his own. Of course he can't at night, but then he wouldn't be safe anyway, which is why he's there. He is not on any med to keep him sedated. We are private pay, but the only other option is SNF, which costs lots more, has a patient to staff ratio that is double, he would share a room & bath, & he couldn't have his own furniture. He is no more locked up than he was when he lived with me, because his own body won't allow him to get very far. He can be taken out anytime (24/7) family wants to take him. I really wish I could keep him here, though I see him almost every day, but right now I just can't. I just wanted to clarify, bc I was so happy to find it as an alternative to SNF when his care became too much for me. Hope all this makes sense for those looking for placement choices. And ...I still hope that I can find a way to bring him back home someday. I grieve for all of us who have to make these painful decisions, and every day I just want my old Dad back.
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Yes Barb Brooklyn! I have learned a lot from others here who are experienced and know what I and others are going through. Not much from the back seat drivers.
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There are plenty of folks out there who are happy to tell you what you are doing wrong: in raising your kids, in how you do your hair, your career goals and how to care for your aging parents. For the most part, they are idiots.

The folks to listen to are the ones who start their sentences with "I've done this, I know just how hard it is. May I share something that worked for me?"

Not the ones who say "I know a MUCH better way to do that".
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Lassie: You're so welcome. That is immensely kind of you to take this man shopping for snacks, clothes and the like! No, you are not held responsible to care for this man and people who may think you should, should look within themselves and know that they couldn't either.
Kudos and big SHOUT OUTS to you!
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It's never a easy decision. Worried spouse, I now see and understand what you meant as locked up. It's sad that some residents don't need or probably meet that criteria, yet are kept there just because the family pays. That is just unethical, and disgusting in my view. I hope new laws or procedures can be secured to protect our aging, and elderly. We all will age and possibly need special care, but I pray by then some productive changes are put in place. Changes are needed now actually!! I love the aging and sweetness of elderly and these special people need loving care in every way and deserve no less!!
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For those of you who have misgivings about placement or at least being on a waiting list for your LO's care. Right now -- sit down and confirm a list of who could step in and do what you are doing. CONFIRM it. If you don't have a backup plan then you need to have a facility as a backup plan, and believe me, you need to choose it ahead of time, you need to read their resident entry paperwork and know what needs to be filled out at a moment's notice. You could be gone in a flash and then what would happen. I had that moment of realization -- my parent's inability to manage on her own, and my own health concerns -- plus the concern that I could be killed instantly in a car accident doing the many trips that I had to take for her care (she refused to live in my town). It was coming to a crisis point -- it was only me to manage it all. So, if I couldn't? The state would take over to decide for placement in a facility. There would be little info presented ahead of time unless I did it. Realistically folks, the bureaucrats only look at a page or two of carefully prepared documents. They check for anything that would incite a lawsuit, and they look for funds. The "little details" you want them to know ---- likely not happening unless your LO is lucky to get a state-assigned caseworker who is not overloaded with work. When the state takes over, it's probably sudden and involves a caseworker and a lot of other strangers to take your LO to a facility w/ little warning. Is that the scenario you want played out??? It's never easy, but you need to be realistic. Please consider at least pre-admission at a facility you choose, or have a secondary Health-Care Proxy & POA established.
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Thank you Llamalover47!.... It's like with another relative of mine who needs to be taken care of, a huge mentally ill man, severely mentally ill. He is living in a group home now, he almost a senior citizen, getting food, shelter, and medical care. He has everything he wants, and I take him shopping for snacks, magazines, clothes, etc. And yet, there are people out there I know of, who are aghast at my 'lack of compassion' and that the poor thing is 'stuck away in a group home'.... Do they not realize there is NO ONE who can take him in and make his life all better? His mother took care of him for 40 years off and on, to what avail except to hasten her own death?... Do they not realize that, for example, I can't take care of him, 'make' him take his medications, bring him into my own home where there is no room for him, far away from his doctors and hospitals (he goes into a psychiatric hospital for weeks, every year), and I am a senior citizen myself? Yet I am seen as heartless by some! Amazing!....walk a mile in my shoes, beeyotches, if you had seen what I have done for him AND my demented mother for years and years, you would shut your pieholes!
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Ever now and then I question and cry whether the correct decision was made for my wife to go to Assistance in Living over three years ago now. If you loved the person who is not living with you now and had to get more help then it is no surprise that you could feel guilty. Leave it in HIS loving and tender care because HE careth for you. God knows your heart and mind so don't let anything deter you - HE will give you the grace and understanding you need during these challenging days ahead. Just another note: my wife and I lived together in a different apartment but three years ago she moved. Today she asked where I was living.
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Lassie: You're so right! We couldn't or can't make OURSELVES ill.
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My situation is all water under the bridge, now. My mother had dementia, was incontinent, fell down constantly splitting her head open, didn't know where she was. I was running myself into the ground, only me, and a few hours of paid help during the week. And the money was running out, so I got her on Medicaid and into a nursing home - in the nick of time, IMO - where she lived for 3 years....My point was, better to find a place for our loved one when we can NOT do it any more, and get the ball rolling. Because if we, the caregivers, die, drop dead from stress, our loved one will go somewhere, anywhere, any way.....are there those that feel we should die in harness, so to speak? Right up to the bitter end? I don't think so. I think when we know we cannot do the caregiving any more, we have an obligation to find AL or memory care or a nursing home and get our loved one in there. Because we could die and then what? Our loved one will be put in a place anyways.
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Not sure how my answer got posted twice. Sorry folks.
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DianneKK - Yes, every case is different. And every experience is different. No matter how one defines it, an "assisted living with memory care" is a marketing term for a place where residents cannot leave without permission from family. In other words, the residents are locked up. You and I apparently have a different interpretation of what "locked up" means, but if you are one of the residents, you'll probably feel locked up too.

Many times the term "assisted living" (AL) is used freely here, without clarifying that a true "assisted living" home is not the same as "assisted living with memory care." The former is a place where residents can have their own keys to their building front door and they can come and go as they please. The building is monitored by cameras and visitors are required to sign-in at the front desk. Meals, laundry, and housekeeping are responsibilities of the residents.

The latter is a secured building where residents cannot even go out to the fenced-in yard without having to ask the staff to open the door. They certainly cannot go out to the yard at night, period. Leaving the premises alone - day or night - is definitely impossible. I would call that "locked up." It is not "locked up" like a prison, because it is not a prison, but a locked up place.

Now, whether or not one SHOULD be in an AL with memory care is a different story. It depends on the needs of the individual - and even that is questionable. I toured several AL with memory care centers where many residents seemed to be in the advanced stage of dementia and were in wheelchairs. They seem to be doped up to know where they are. How could they run away in a wheelchair? Do they really need to be in an AL with memory care? The facility keeps them there because family members can pay the facility to keep them there. These residents clearly should be in a nursing home. As long as the money is coming in, the AL with memory care does not care. When the funds run out, out the residents go.

My purpose to respond to Lassie was to calm her down and help her not to react out of fear, especially fear of the unknowns. We can plan only so far ahead, but letting fear of the unknowns dictate our future decisions and then make drastic decisions is never a good idea.
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DianneKK - Yes, every case is different. And every experience is different. No matter how one defines it, an "assisted living with memory care" is a marketing term for a place where residents cannot leave without permission from family. In other words, the residents are locked up. You and I apparently have a different interpretation of what "locked up" means, but if you are one of the residents, you'll probably feel locked up too.

Many times the term "assisted living" (AL) is used freely here, without clarifying that a true "assisted living" home is not the same as "assisted living with memory care." The former is a place where residents can have their own keys to their building front door and they can come and go as they please. The building is monitored by cameras and visitors are required to sign-in at the front desk. Meals, laundry, and housekeeping are responsibilities of the residents.

The latter is a secured building where residents cannot even go out to the fenced-in yard without having to ask the staff to open the door. They certainly cannot go out to the yard at night, period. Leaving the premises alone - day or night - is definitely impossible. I would call that "locked up." It is not "locked up" like a prison, because it is not a prison, but a locked up place.

Now, whether or not one SHOULD be in an AL with memory care is a different story. It depends on the needs of the individual - and even that is questionable. I toured several AL with memory care centers where many residents seemed to be in the advanced stage of dementia and were in wheelchairs. They seemed to be doped up to know where they were. How could they run away in a wheelchair? Did they really need to be in an AL with memory care? It is quite possible that the facility keeps them there because family members can pay the facility to keep them there. These residents clearly should be in a nursing home. As long as the money is coming in, the AL with memory care does not care. When the funds run out, out the residents go.

My purpose to respond to Lassie was to calm her down and help her not to react out of fear, especially fear of the unknowns. We can plan only so far ahead, but letting fear of the unknowns dictate our future decisions and then make drastic decisions is never a good idea.
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Worried spouse, I don't consider putting someone where they will have 24/7 care as being "locked up" as you phrased it. If the caregiving role is too much for a person to safely, or reasonably be able to do, then AL or NH or SNF are there, just for these reasons. I'm sure thier are alot of slimy places you wouldn't never leave a Lot in but thier are also great facilities offering superb nursing, therapy, activities, etc. It seems like people make biased opinions based solely on thier on experience, but options exist for a reason and a lot of residents out there are taken care of quite well in a safe, and clean environment. BTW,  (kindness matters)....... not all employees make minimum wage especially in nursing. Most nurses I've encountered in hospitals or NH's got in there profession, not for the pay but for their love to take care of others and practice in healthcare. I think people should visit the prospective homes for a tour, meet staff, and just do some research. You will find a great, stable, medically- sound environment, so your mind can be at ease and your loved one recieves exceptional care. No easy decision. I'm in the midst of this horrid decision process, but I know I have to put mom's safety ahead of what she and I prefer, which is her to be home. I pray it doesn't come to that but with declining mobility issues and history of falls I may be left with no choice, except the one made of pure love. It's bittersweet. Judging others for what may be right for thier situation, is pointless. We all are essentially, in the same boat, on different journeys. I hope we can lift, inspire, and empower one another. Love and light, to all! Sometimes, I guess it's best to agree, to disagree. We all have opinions, or thoughts of how these homes are, but so many elderly have to be there and they persevere in a lot of situations. Guessing every situation is different, but no one should feel guilty for doing thier best for family and making a life changing and altering decision. Who would opt for it, just because?!?!?
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Lassie - You cannot anticipate for every situation. Things happen. You just need to inform family and friends of your plans in case something happens. And if you a hire caregiver at home, you let them know who to contact in case you have an emergency. Just roll with the punches. Don't lock up your loved one just because you are afraid something MIGHT happen. Too cruel.
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If you weren't around any more, if you died, or had a stroke or heart attack and couldn't take care of your loved one any more - and that can happen, being a caregiver can maim or kill you - what do you think would happen to your loved one? Do you have a big, close, loving family lined up to take their turns at caregiving? Do you have a large circle of kind, jolly, caring friends lined up to take their turns at caregiving? Do you have ANY help of ANY kind, or are you 'it'? Because if you dropped dead or had a heart attack or nervous breakdown or stroke, your loved one would be put into a nursing home or assisted living and not left to their own devices. So what is the difference between putting them in a safe place now, because you cannot do it any more, or having them put into a safe place after you die or keel over? Do you not deserve relief when you cannot be a caregiver any more, or must you grimly plug on and on until you get sick or die before your loved one?
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My MIL was placed in an ALF 2 weeks ago. It is private pay costing around $4,000 a month, which is being paid for by the money from the sale of her home, so essentially she is paying for it. She is struggling to adjust, as this was not her decision. Although it is a private pay, and it was assumed that care would be good, she was prescribed medications to sedate her, for the convenience of staff, and she has already been hospitalized due to bruises and hematoma on her legs either caused by falling or bumping into things. We had these same concern while she was at home, and we assumed she would be monitored and assisted. That has not been the case. The setting is depressing and most of the residents appear to be angry, lonely, scared, and sad. My MIL is not as vibrant as she was, and the stress of the new situation and setting is causing panic attacks. We have to find a better way to take care of our elderly parents. Expecting strangers, who get paid minimum wage, to care for our elderly parents in a loving, respectful way is unrealistic. The ALF is a for profit business, and this is reflected by the condescending attitude of the staff who act like they know my MIL better then I do, and generalize all residents struggles and behaviors as if they are cattle. We feel guilty and shame about our decisions because in our heart we know that our elderly parents are not better off in an ALF or nursing home, but most times we have no choice. It is a systematic problem, and there needs to be options available that don't make us question our intentions.
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Acepoo - Did your husband take anything for sundowning? Seroquel works well and taking naps can help too.
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It is a tough decision, but you did the right thing. My grandmother finally had to go to assisted living at 92 because none of her adult children could be with her 24/7. It took her a year to adjust, but she is still alive and doing well.
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You made the right decision for BOTH of you!! You can't be loving and patient when you are sleep deprived and exhausted. I put my husband in memory care in March 2016 only 6 months into the diagnosis of vascular dementia because he was sun-downing and I couldn't sleep. Now I visit everyday (sometimes twice a day) if I have time, but am also able to go on short or long trips with friends and family. This gives us a lot to talk about when I return. Our relationship is different from the one we always had, but we still love each other and are happy to share our time together. You'll get there - it just takes time to stop beating yourself up - and you know what - there's really nothing productive about it. You have our positive thoughts and prayers.
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I wonder if it is more difficult to put a spouse in an AL than parents or other relatives.
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I am in a similar situation. I cannot imagine putting my LO in a NH or Hospice (unless they are unconscious.) It would break my heart.
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I think when you get to a certain point in caring for an elderly person it's almost like the decision is made for you. My Mom fought the process valiantly from hospital to rehab to home health care. Eventually, even a strong woman like her had to admit defeat and while I would have probably continued helping her fight the process as much as I could I had to give in to the inevitable outcome along with her.

Don't feel bad. You did what you could as long as you could and no one could ask more than that of themselves. Unfortunately, guilt is par for the course. But it's a sign that you cared and that alone should relieve you of some of it just knowing that IT IS A SIGN THAT YOU CARED!!!! So pat yourself on the back and give some loving to yourself now. You deserve it!
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You've made the right decision because you would crack trying to provide care for your elder any longer.
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lindabf, I can tell you some of the benefits of them being around people their own age.... they don't have to keep up, for one. I know this because my husband is 15 years younger than me; at 41, when we met, I had a figure, teeth, and lots of energy to go horsebackriding, dancing, etc. Now, at 66, most of that is gone. He still wants to do things like go hiking, and I just can't. It would be lots easier if he were older. I see my elderly friends in AL and though they don't seem to socialize as much as we would think, they understand each other pretty well. They have decades of common life experience and memories, which just isn't the case when they are with younger people. Some don't like to be with others like themselves because they are living in denial - wouldn't we all like to deny the effects of age?
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Rosemary 44 hit it on the head about the days feeling very long at home when there isn't enough stimulation. Getting your LO's up, moving and participating makes all the difference in the world to their well being. I was just too run down and tired to provide that after 9 years. Now, maybe we can both bloom where we are planted.
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