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You made the right decision. Availabilities are becoming harder to get. If you let things go until a crisis happens, then you are making "deer in the headlights" decisions. If frequent falls, incontinence, and memory loss are issues, then it's time for ALF. We'd seen several over 22 years of "I'm lonely and want company" to "I want my own apartment where no one will bother me." My opinion these days is that there are not enough simple facilities. Only wealthy folks can pay for the very (overly) fancy facilities. And, fancy doesn't last; your LO's ability to get around diminishes and/or they lose interest. The upfront fee paid "for overall facility care" ropes a lot of persons into thinking they need to stay w/ that facility because they paid so much. It was good to hear of many of you saying that "the staff is so wonderful" even at small ALFs. Look around, and get your name on a waiting list if you see "the one."

Back to the feeling of guilt. I found out that my LO didn't even recall the last few months of staying at home w/ all the holiday festivities ect. It was also a terrifying time of multiple falls, many Life Alert calls, and emergency room visits. I should have told the ER persons then that I'd already spoken with Adult Protective Svcs about my concerns. They will put an elder in a cab to go back to their house if the person requests it. I lived several states away and was on my sixth trip to her state in that year and knew I was at a breaking point.

Their wanting to "go home" is a wish to go back to their childhood home. Redirect conversation, compliment on how everything is going well, and please don't heap guilt on yourself. ALF's have safe and proper care. You've done the best you can.
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I agree with Johnandmom! Do what is right for both of you given the info you have. Regrets are equally powerful force. If nothing works and your LO ends up in an AL, you know in your heart you have done your best. Sometimes your best is no longer appropriate. But at least there won't be lingering questions about what-if...

No matter whatever you decide, you WILL run into problems and they cast doubt on your decisions. If you can, have a backup emergency plan and consult with your doctors, social workers, lawyer, etc ... for advice. Hire a geriatric care manager to guide you. Look online for questions to ask during your first interview with them. I shied away from solo practitioners because they can be too busy and they don't have a back up. Not to say they aren't good; just that you need a back up if they are too busy or if you have an emergency.

I am terrified with my decision to bring my husband home but the decision is made with a lot of input from other people. I take comfort in knowing that I am doing my best for him. If that fails, I will try another option and feel less guilty about not doing enough.

I am rambling...
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Sometimes I do not understand the acronyms used here.

What is DH?

Is LO = loved one?

Others?
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I have no idea what DH means. LO is loved one.
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Being around people their own age forces elders to make an effort, to use their brains, to think. Your mother is in denial of the fact that she IS old. Being around people her own age is a gentle way of nudging her into reality. Research demonstrates that people with a social network are healthier. Your mother didn't let you eat cotton candy and popcorn every day because it wasn't good for you; she made you eat your vegetables. Sometimes that sort of tough love is necessary.
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I'm in the same situation. My Mom will be 91 on Oct. 7. She had a stroke a few years back but could still use a walker, so I continued to work, which required a lot of travel. It has just been the 2 of us for many years. Then she had a second stroke and could no longer be left alone. But I couldn't afford in-home healthcare aides. So I ended up giving up my job and we've been financially strapped since. Still, with help she was able to use her walker and I helped her get in some exercise every day. Keeping her at home felt like the right thing to do. At her age, however, decline is inevitable. Last fall her feet began to hurt; she has bad hammertoes and is too old for surgery. Once her feet hurt she couldn't walk and that stopped the exercise. Which led to further decline. At this point she is basically blind, mostly deaf, and unable to get up at all. For a number of months she continued to feed herself and I was able to get her up on the walker to make it to the toilet. But she can't do any of that any more. Over the last 2 months it is to the point that I feed her, change her like a baby, get her into clean pajamas, and generally do everything for her. I'm 69 and trying to keep our heads above water by walking dogs to pay for groceries. I did not want my Mom to go into a home while she knows where she is and have her be afraid and miserable. But some days, now, she doesn't remember where she is. Most days she does, but not all. And I'm tired and frustrated. It's too much work for me. As of this last week she is now staying in bed. And I've accepted the fact that I simply can't give her the care she deserves. I know she's dehydrated and she's starting to get sores on on rear because of lying in the bed. I keep her as clean as I can, but i also have to leave to walk dogs, take care of the house, our pets, and the yard. I don't want to lose my home for lack of money, and I need to pick up more work to pay for things. I can't do it while mom is here. I've been told by the area agency on aging that although she doesn't have Medicaid now, our circumstances make her eligible. But the process to get it here in TX is daunting. She'll have to be in the hospital for 3 days and her doctor will then have to place her in an assisted living facility/skilled nursing facility for at least 30 days. There are several months of whatever after that, and then I have to find a home that takes Medicaid AND has a Medicaid bed available. Which suggests to me that sometime during that time period I may have to bring her back home until a place is settled on. In any case, around all of that I, too, am struggling with guilt, even though I know it's not my fault. My Mom is very old, I'm not young, and I simply don't have the physical or financial means to keep caring for her. I hope you see that you are certainly not alone in dealing with the issues of aging. It's a foregone conclusion that sooner or later all of us will deal with it. For some it is easier as all circumstances differ. But it's unavoidably sad. If a person doesn't find it sad, something is missing...
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She is in now, but this may not be the best alternative. Parent always do better in their own homes.
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I read on this very site that you shouldn't visit every day because they will not assimilate into their new environment as well. It is important that they get to know their surroundings and the people there. Usually AL facilities provide activities and entertainment daily and these and mealtime are great ways to get to know the others.
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LuvRLabs2 I took care of my mom Who had Alzheimer's for over four years and she was at home when she passed. I would not have had it any other way. But there were times when I cried and felt that I simply could not take it anymore. Then a little time would go by and I would rally. I never got close to putting her in a home. But I visited homes and had selected the one she would go into if it became necessary.

This is a huge decision to make. It is a heartbreaking conclusion to come to...that you must move you LO elsewhere. You have gone through emotional hurdles, and physical hurdles before even thinking about moving him to a facility. Then you start the emotional upheaval of whether it is time to make that move and you slogged the the river of guilt. And having born all this you felt it was right to place him in a professional home. I cannot help but believe you made the right decision. You went through too much to get to this place.

It would be the very rare situation indeed if you did not feel incredible guilt. You are a caregiver, it is not our nature to stop giving care. And you wont. Your caregiving will continue in a different format. The truth is, while it is understandable that you would feel sadness, your guilt is unfounded. You took care of your husband to the point of risking your own health. What would the healthy version of your husband say to that? I suspect he would tell you not to do it.

He will need time to adjust. From what I understand this is the awful phase. But in time he may get to feeling that your visits interfere with his fun time. Remember you are dealing with an Alzheimer's brain, not your whole husbands brain and it is different.

Be patient with him and show grace to yourself. You did what you had to do for his benefit as well as yours. Do not forget that part. When you start to feel guilty remember you did what was best for him, to ensure he has the care and support necessary for his condition. It takes a whole team of people on multiple shifts to meet the needs of an Alzheimer's patient. There comes a point where it is just too much for any one person to do.
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Of course, you made the right decision. The right one for your LO and the right one for you. You cannot take care of someone else if you yourself is not taken care of. Remember...your LO will only get worse and you need your strength to take care of him/her in the waning years.

Good luck and good wishes.
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Thank you, NY DaughterInLaw — that makes total sense and it really helps. I find that the more guilt I allow myself to have, the more narrow my understanding of the other alternatives becomes. So it helps to have someone say something that makes me question my assumptions and decisions. Thanks again!
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Don't second guess yourself and hang in there. I know exactly what you are going through. I put my husband in a Memory Care facility 16 days ago and it is just going to take time. I tried daycare and home health care. He got aggressive with me when he knew I had someone in the house that was going to stay with him. He only grabbed my shoulders, but it was enough for me to know that it was only going to get worse. My DH needed more socialization then I could give him and my health was deteriorating. He wasn't happy with our home situation, due to his being tormented by this disease, and neither was I. I have not seen him yet, as recommended by the staff, so he could get acclimated to his new surroundings. I chose a facility that had many activities and men to socialize with. I know in time that he will get use to his new surroundings and when the time comes, I will be able to visit with him and give him the quality time where we could both be happy, free of stress. It will be our 50th Anniversary next month, if all goes well we will spend it together and with our family at HIS new home. It is not easy right now, but I believe it was the best decision for both of us.
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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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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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You've made the right decision because you would crack trying to provide care for your elder any longer.
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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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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 wonder if it is more difficult to put a spouse in an AL than parents or other relatives.
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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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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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Acepoo - Did your husband take anything for sundowning? Seroquel works well and taking naps can help too.
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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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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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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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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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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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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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Not sure how my answer got posted twice. Sorry folks.
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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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Lassie: You're so right! We couldn't or can't make OURSELVES ill.
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