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My question is, that although to a long-time caregiver this action sounds like such a relief, are there others who have done this and then regretted that they had not waited longer? Also, if so, what were your reasons for wishing you'd waited longer......is it more trouble/heartbreaking to visit than to have them at home, is it a question of getting used to being without all the care you have given, or something else?

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According to me we should think of ourself and decide what our mind says,rather than listening of others.
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Tonylou65, I think that the longer you can handle him at home, the better off he will be. Many of you will disagree with that statement. NH care is long-term, and it may be final. The determining factor will be YOU. How can you handle it? If life is too exhausting for you and you feel that the time has come for YOU, then place him.
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Louise, you will hear pros and cons, the truth is you know in your heart what is right for you, so do it and if someone does not like it that is not your problem, do what is right for you, what is best for you and your health and what is in your husband's best interest.
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Louise - first let me apologize for my voice recognition. in my previous post, I intended to indicate "OVER" 10 years of caretaking...

For any dementia patient, it is really important to be completely honest about the true appraisal of their capacity. Someone who needs any amount of care or attention is probably not going to do well placed in independent or assisted living unless the place is wholly exceptional in the care that they give. Generally, additional assistance needed is charged on a fee-for-service basis which adds to the monthly charges. Also, independent and assisted living do not usually come under Medicaid guidelines, so there is no financial assistance, it's all private pay.

Then there are nursing homes, skilled nursing facilities and memory care facilities. My aunt for example was initially put in a locked memory care facility because she continued stating that she wanted to "get in her car (which wasn't there) and drive home" but after she settled in, it turned out that she was not inclined to try to leave so she had freedom privileges that some other residents couldn't be given. My dad on the other hand, was completely incontinent by the time we took him to the home and he was a wanderer, always trying to escape. So he had to be in a locked memory care facility and even then he tried to climb over 8 foot chain link fences.

There is a huge difference between nursing homes and memory care facilities. The staff in nursing homes are not necessarily trained in dementia. Some nursing homes and skilled nursing facilities will not even take a dementia patient for rehabilitation. Memory care staff typically are more well trained in dementia patient behavior. They won't allow a dementia person to choose not to take medication or not too bathe. They usually just wait and come back another time and try again. Untrained staff will just documented the patient refused, and then move on to someone else. THAT is certainly not proper care and should never be tolerated. As a dementia patient progresses through the disease, weather there at home or in a facility, it often involve some form of medication to obtain their cooperation.

IMO, the most important thing about evaluation is to look into the future a bit. What may seem to work for someone right now is likely not to work for them in 6 months. The major problem with placing someone in a lesser facility is that moving them can be very confusing, disruptive and disorienting. If your loved one is meeting a higher level of care and the rate of deterioration is fairly obvious, place them according to the future projection of their abilities rather than for the present. It may very well be difficult to observe them in an environment where other patients are worse off than they are but the harsh reality is that day too we're going in that direction and moving them when they get worse is harder on them and not to the benefit of being in a stable, structured and familiar location for the duration of their life.
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P.S. I really tried being my husband's advocate by speaking with the workers, explaining how to deal with an Alzheimer's patient, asking questions, talking to the head nurse, repeating myself dozens of times with every worker on every shift. But nothing changed, so I just did it myself so he would get good care while he was in rehab.
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Tonylou, Do not delay in looking for a facility, most have long waiting lists and you will be waiting a little longer anyway. You can still be involved in his care at a level that is comfortable for you.
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Well I'd say this is someone like Joannes described, imo.
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Tonylou65 - I can only share with you my experience - but, honestly, everyone and every situation is a little different. My husband has later stage Alzheimer's and I am his full-time caregiver - but I also work full-time to support us. I work from home T-Th and drop him off at an Alzheimer's day care on M-W-F on my way to and from work. Recently, after two back to back hospitalizations, my husband was discharged the second time to a nursing home/rehab center for some therapy. I took great pains to visit/interview several nursing home/rehab centers that fell under my husband's insurance to ensure I would find a decent place with good state scores, reviews, etc. Even though it was 45 min. one way, I thought that was a small price to pay to ensure he would get good care.

They didn't understand how to deal/communicate with an Alzheimer's patient, so he was labeled as combative (he's absolutely not) - nor did they have enough staff to adequately care for him. The reality is that very, very few nursing homes have adequate nurses, techs and other staff. Anyway, he resisted them when they tried to bathe him so they gave up and just didn't bathe him. He resisted eating, so they put food in front of him and then took it away an hour later. He's urine incontinent, but he has a habit of taking his depends off when they're soiled and because they didn't pay much attention to him, his bed and his clothing were regularly urine-soaked when I arrived each day. At first, I thought, "Whew, I'll get a little break while he's in rehab for a couple of weeks." Boy, was I sadly mistaken. In order to ensure he was kept fed, clean and dry, I spent 4-8 hours at the nursing home every single day he was there. It wasn't close so that added to the stress. Honestly, I was more exhausted doing that than having him at home. The doctors, nurses, therapists, social worker, etc. all told me my husband requires too much help with everything for me to care for him at home by myself and that he needed to be in a nursing home. But after seeing the care he received there - at a place considered pretty good - I just couldn't do it.

So I rededicated myself to caring for him at home. I don't have any family nearby, so I enlisted the help of friends at Church to give me some help and respite. I still feel overwhelmed a lot of the time, but I am at peace knowing this is the best for him - for now. And as long as I can manage it, I will keep him with me.
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Thank you all! It was so good to get feed-back and food for thought. I do feel, now that I'm more tired and disheartened than I have been until now, that a facility may be better for him, as well as for me.
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The key thought here, as someone else said, is that your role changes and you must think that part through. Instead of the 24/7 caregiver, you become the 'supervisor' of his care, while others do the work. If you can work this out in your mind, and consider that you now become his wife again, and his 'visitor' who does regular inspections while visiting to assure that he is getting all he needs, then it will work out. If you have a personality that says it all has to be done your way to have been done right, you will not be happy that he's been placed, because it's not always going to be done 'your way'! So you need to get your own thoughts and expectations about it straightened out as part of the decision. My Dad has been in 3 facilities since he left home in Jan, 13 and my Mom has been unhappy about all of them. I have been OK with all of them, but each had different ways they were good for him. She has spent her life wanting everything to go her way; being obsessive compulsive about how she does her own daily routines and lives by 'rules'. She is paranoid about everyone else due to her own dementia that is gradually getting worse. I am a retired RN who has spent much of my career being a supervisor, and worked in many different situations. I have a much more laid back attitude about how the world works and have no trouble accepting that there will be good workers and not so good workers; that facilities have their own routines because they are caring for many residents and that there will be good days and not so good days. Mom visits and rather than visit, she is looking for all the things that are wrong, but doesn't want to be the 'supervisor'...doesn't want to ask questions like, how is he eating? What is his weight? What activities did he get to do today? Did he sleep last night? She just decides what is wrong. If an item of clothing is missing, rather than assume it's in the laundry, she would rather assume that someone 'stole' it for example, but she would NEVER ask anyone a question! I live 5 hrs away, but she will call me and want me to call and complain about all she notices that are mostly nutty and non issues as far as I am concerned. SO....it depends totally on your personality and your ability to be a supervisor; ask questions; follow up with staff in a facility and move into being a warm and caring wife who visits your husband as much as you can, and 'do for him' what others are not doing or cannot do....rather than wanting his care to be exactly as you were doing it yourself at home....then it will work out OK for you. But, if you want total control....as my mom really does, but is not able to allow to happen....then keep him at home with caregivers coming to your home to relieve you. Only with him at home will you ALWAYS be able to know how his care is being given. My Mom doesn't want the caregivers in the home, we tried that for the first month Dad was really bad. Mom accepted a part time caregiver for 6 months, but when she couldn't manage feeding him all his meals or helping him to bath and change clothes, and when he started having incontinence and being more angry and aggressive towards everyone....she could not deal with any of it...so we tried caregivers during the night so she could sleep. She would not sleep and complained about every single caregiver over something or other. She would not assist or allow them to teach her how to approach Dad to get cooperation. My mom's only 'solution' is that 'family' should be there 24/7 to help her out...which means ME...since I AM the only family around since our daughters have families and live in other states. I live 5 hrs away, have a husband with his own health problems and still, at 69, run a home based business to try to shore up our income and replace savings we've lost in the bad economy.....so it is not possible to go live in with her. She is his wife, and 'should' be able to step up to the plate and act more like a wife, but she cannot and never could even before her dementia. She was always cared for totally by him and her 'bad behavior' was tolerated to have peace. Anyhow....all this is just to explain my thoughts about what you need to consider to know if it's right for you to place him. I do agree that a smaller, assisted living place with a family atmosphere would be a better choice if his care needs would allow for that...and this is based on seeing how my Dad did in a huge impersonal memory care place, compared to a small family oriented licensed facility. The family place catered to his and her needs much more. The third place, he is now in, is trying very hard to do that, but it's a bigger facility with only 15 residents living in small cottages...and 5 cottages on the secured grounds...so sort of between the other two types of places. None is a nursing home however....
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Louise, it sounds like you have done a wonderful job of keeping your husband at home for 14 years! I had my Mom in a Memory Care facility, trust me, there is still quite a commitment for a caring family. When I saw how hard the aides worked, I was convinced I would never have been able to be a full time caregiver. Eventually, every one of the residents at this place 'forgot' how to eat/walk/toilet/dress and sadly eventually speak. The routine provided by trained caregivers is essential to keeping these folks on an even keel. I learned by observing how each resident was handled. (Sometimes I even learned what NOT to do!) If you choose a place tht is near to you, you will be able to visit regularly and return to the loving wife rather than the caregiver. I'd also urge you to consider assisted living rather than a nursing home if he doesn't need extensive medical care. The settings are often more pleasant and that makes it easier for you to visit and for him to live.
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When I discovered my aunt, who had made me responsible for her through her POA's, had alcohol dementia, I initially felt bad that I needed to place her in a home. I really didn't have a choice. I was working nearly full time and my office hours were spent helping my mom take care of my dad, who had Alzheimer's, and their home. Prior to placement, a psychiatric PRN told me that most family caregivers err on the side of NOT placing their loved one soon enough, there by experiencing burnout and often illness themselves.

Just placing your husband will probably not lessen your involvement, it will just move you more to a supervisory rather than a hands-on roll. When my mom and I finally had to place my dad, he needed to be in a home nearly an hour from where we lived. One of us, usually my mom but sometimes me & sometimes both, would see him every other day for hours at a time. He did not like chatter, it actually disoriented him, so we would just sit quietly, she would play pocket poker or blackjack, I would crochet. We didn't even talk to each other, as it was just so much gibber jabber to my dad and he would get up and walk out of his room in disgust. But we were there to help feed him as he no longer ate on his own and my mother couldn't abide him being hungry.

Nursing homes have their problems, which is why you must be involved. Even the good ones have staff that is overworked and underpaid. When my dad went in, he immediately begin to lose weight and the doctor recommended hospice - which means Dr certification that the belief is the patient has 6 months or less to live. The doctors conclusion was that he was not "settling in" and that he was depressed; that we should prepare ourselves that he wasn't going to survive for long. But he survived for a year and a half.

You see, we knew it was a feeding problem and even though we were at a good nursing home, it was difficult to get them to attend to this. When one of the male CNA's noticed our struggle, he liked us and the care that we took with my dad and he quietly took it upon himself to do my dad's feeding on the days we weren't there. The home didn't assign him the job, but they didn't stop him from doing it either.

After your already 10 years of caretaking, no one needs to tell you what that's been like at home. It sounds like it's probably time to place your husband but, IMO, that will be the beginning of the process of constant vigil for you. The best part is that you now become his overseeing caretaker instead of his nurse or CNA. You will go home and sleep at night and come back the next day or the following day, refreshed and able to be alert to his needs and be his wife again. The caregiving doesn't and when you play someone in a nursing home.

Please keep posting.
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Louise, I see you have been taking care of your husband since 1999, that is a very long time and it is now becoming too much for you. You have shown your kids that you do stick through for better and for worse, but you also need to teach them about letting go when the time is upon you, otherwise you take yourself down and no one is served. It is a different level of difficulty when your loved one goes into a residential setting, you are still thinking about them all the time and it is hard emotionally all around and it hurts to visit. If he has a good place to go let him go, it will get harder and you are worse for the wear now. He will get the attention you can not give him at home, he will be seen by a doctor immediately if he falls, gets a cold, has any pesky issue that you would have to move heaven and earth before to take him to the doctor. It is hard any way you look at it, but you must remember you have to take care of yourself now.
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Th question is do you think he is ready for nursing home care? How far away is the nursing home? I waited four years before a VA emergency doctor popped that question to me, and I tried like the devil to get him in a home before then. Now he's in, and I have to drive 37 miles each way to see him.
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