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So, even though SOME of us (myself included) are burned out/frustrated/unhappy/overwhelmed with stress and anxiety due to caregiving, many of us still INSIST despite all of our misery and frustration that we are NOT SENDING OUR LOVED ONE TO A NH. NOT HAPPENING. NO WAY.

So here's the question: Are we really doing the right thing? Is the right thing to suffer so our loved ones don't go to a nursing home?

I am grappling with this dilemma myself and just wanted to see what other's insight on this was!!

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On the contrary, I wish I could put my fil in an assisted living/nursing home. My husband absolutely refuses and so does my fil. I understand that most people do not want to go.
So here we are, living in his house ( fil's), and I am stuck taking care of him full time. I say "stuck", not to be insensistive, but beacuse that is the way it is. Due to the fil's dysfunctional issues, he has little contact with his daughters or grandchildren. He refuses to pay for any type of respite care or an aid to help him bathe ( he has not been in a bath or shower in five years), so he wears the same, smelly, urine/chewing tobacco stained clothes for days. It is a literal battle to even get him to take a bird bath and change.My husband and I cannot afford to pay for help.
Currently, he is on home iv antibiotic therapy and a nurse did say something to us about his dirty clothes and all the dead skin on his arms. I was so embarrassed. I think in my case, I am dealing with an alcoholic ( he drinks 5-6 whiskey drinks a night) and he is terrified that he will not have his drinks everyday.
I remember when my own grandmother was unable to live by herself. It was HER choice to live in an assisted living facility, because in her words she did not want to be a "burden" to her children. She was involved in different types of activities, church and shopping, She, for the most part, enjoyed her time there.
I find it interesting, that when we choose to be care takers, we are also taking on other issues/problems that may have gone unsolved for years. When one is truly dysfunctional,as well as the entire family, it is truly difficult. More and more, I see the same problems surface in my husband that his father has........denial, being the big one, being really stubborn, the other.
So, for me, the hardest part is the mental burn out, from frustration. When he gets to the point of needing diapers changed, fed and such,I'll be sure to call my husband. I have discussed this ( or at least tried to) about the very near future and have made it very evident that I cannot do that.
Don't mean to ramble on, but it would probably be different if I loved my fil, buyt I do not. I care for him and respect him. That's all I can do at this point.
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We have many NH here in our area to choose from I found the best are the ones who hire local staff-the one he was in most of the time get their staff -the aids from NY city-the NH sends a bus to the train station every 8 hrs to get them and they are the problem -they gang together and have an attitude and are in a union -this has always been a problem with this place-once they would not take my husband as a pt. in rehab and I found a NH that hired locally and what a difference. The best is to do what Cmag says -go in different times and report things you do not like-they would put Winnie's call bell where she could not reach it so I put a note on the wall that she needs to have it in place and I did call the NY State Board of health a few times and repirted things and got a letter back that stated that situation would be included in the next inspection-so there are things you can do to make things better-mostly make friends with the staff takein cookies etc that will help your lived ones get good care and compliment when you see good care.
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I want to add something new to this...my husband was in a rehab facility and it was piss poor...they had bed bugs and ppl crying out saying they need help and being ignored. They wouldn't even help him bathe fully and since he can't have surgery...well I take care of him at home its much better some positive feeling but when it comes to down to the wire ill see but as far as I am concern the system is broken and when u ask for advice you get terms you cannot understand and get treated as though u cannot see ur way through a paper bag. Not in my case I have learn to deal with the system tho i been told to get attorney etc and said i need to force spenddown on my husband. For what ?? its trial n error as it stands the system looks at money not the ppl...always will.
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Wow, 60% or the caregivers die before those they care for? That will make you pause and give it a think!
Anyhow, maybe I'm lucky, but in my situation, it is pretty clear cut when the nursing home/assisted care will happen. When I can no longer care for my Mom because, for instance, she has broken a bone, or gone fully into dementia where she runs the streets, it will be obvious that I clearly can't handle the situation. I don't intend to "die trying". My Mother would not want that either. My Mom would say something like, "I'm old, had a good life, and I don't want you killing yourself to keep this old lady alive. It's time for what I don't want--a place that is not my own home, but it is what is now the thing to do."
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cmagnum, I don't think your experience is unique. It definitely is not universal, but there are good, caring facilities out there, and any facility can do a better job with help and advocacy of family.

Aunt Ethel worked as an aide in the small town care facility. When she was widowed in her sixties she used some of the insurance money to go back to school and become an LPN. She knew the difference in salary would never pay back the schooling, but she also knew that the facility truly needed someone with that degree. She worked there for many years before she retired. Later she walked in one day and said, "I think it is time for me to register here as a resident," and she lived out her last decade there, dying at age 100. Not every small town nursing home has a dedicated Aunt Ethel, but don't discount the possibility of finding very fine care even in small town low-tech nonprofit facilities.

Once the long term care landscape was bleak. There are still nightmares out there, no doubt about it. But do not despair at finding compassionate care -- it is out there, too. Even the care we give at home is not perfect. Fortunately perfection is not required.
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cmagnum; I'm happy for your experience and happy to know that the care you describe does exist. There are two skilled nursing facilities in our small town, both are wanting for staff. I was at the nursing home at all times of day and evening. I put in a complaint on several occasions just because of the obvious. The PT staff was absolutely awesome, but the floor staffing was very poor. One of the aids that I especially loved told me that they put too many on the evening shift, when things were quiet and not enough during the day when so much was going on. I mentioned this in a separate post that people can go to medicare.gov and find a link that rates nursing homes. There are better ones in our area, just further from where we live and I will check them all out should the NH come back into the picture. Read the last sentence of your previous post and make the necessary correction.
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The nursing home where my mother is must be unique. It is for profit which makes it expensive, but she never smells. Because she is bedridden, she has to be transported to see her neurologist in a wheelchair via the transportation van. I go with her on each appointment and the staff has her ready. I've never found her smelling. I have learned that some relatives do not come and go with their relatives when they go outside of the nursing home to see a doctor. In those situations, the nursing home sends a CNA to go with them. A few times, I have heard that the van driver actually stays with the resident. One thing that I do is to visit at random times on random days without any prior announcement and maybe that keeps the staff on its toes. Over time, I have met all of the nurses and all of the CNAs who work on my mother's hall on different shifts. So, in my opinion the challenge is to find a good one. It is true that generally non profit nursing homes do not have the level of care that nonprofit nursing homes give.
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Musiclover: I just want to say that nursing homes could provide better care if they were not so profit oriented. My dad was in a skilled nursing facility/nursing home after his stroke. My son worked there as the chef for the facility. He knows the finances of the facility and mentioned to me that they made a million dollar profit in that fiscal year. We brought my dad home, after rehab and care for his speech and swallow problems. One of the main reasons I brought my dad home was because it broke my heart to go there and see him, asleep in a wheelchair by the nurses station. When I reached him, I could smell him. He was sitting in his own excrement. This was pretty much a daily reality. I was there every day, I sat with my dad at lunch and worked with the speech/swallow therapist to help him learn to feed himself again. I often took my dad to the bathroom in his room, changed his pants and did what the staff should have been doing. Also, let me just say that the charge nurse on my dad's floor was also dating my son, so you would think we would have some influence as to my dad's care. And we did. But the powers that be are only interested in the profit margin. No employees can over ride that. These places are profit motivated. They are they to make money and they will cut corners to do so. Not enough staff is the number one problem. The aids are running their butts off and if you need assistance, especially in the day time, you can pretty much forget it. Anytime my dad needed to be transported to a doc appointment, ie removing feeding tube and other things, my husband and I would take him. We didn't want him being transported via bus with an aid. First of all, what would the aid care about what was being said, second of all, I want to have first hand input in what is happening with any doctor. Regardless of the fact that my husband and I were relieving the NH of the loss of an aid or the need to arrange transportation, I would arrive to pick up my dad and sometimes he wasn't even out of bed, dressed or fed. What the hell is wrong with this picture? It's profit and and lack of care. If you want to find a good nursing home, be sure you check out nonprofit and religious institutions. For profit can be a problem.
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It's a tough call. The choices we had, were not good, many were staffed with underpaid, English as a second language caregivers. Many are short staffed and under- funded. I wish I had the magic answer for you.
I had written earlier about my own experience- I moved to So. Fl. to help Mom out with my Dad's care. We were also, damned if you do, damned if you don't. - We let him stay in one of the "better places" . Everyone hid when all the care was done, and seemed annoyed that my dad's underpads had to be changed again. If we were not there, his needs would have not been taken care of. We always said, "OMG- so many people HAVE to put their loved ones here." - Its a tough choice.
What we did (homecare) may not be an option for some. We just thought we could give better care at home. Yes, it was hard. YES, we almost lost our minds. NO, I am not a Martyr. He was my father. He helped me when I needed it. That was my driving force. That's what kept me going.
I hope you all find what works best for you. I am no expert.
I wish I had the right answer for each of you. ((((HUGS)))
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I should have double checked this, but if you go to (I believe) medicare.gov, you can find a rating for nursing homes. If I gave you the wrong web site, just do a search for best and worst nursing homes and you will find the link. You can put in your zip code and a distance parameter and you can view all nursing homes within those boundaries. Nursing homes are evaluated annually by medicare and you will see how they rate in various areas of care. You can also read about complaints, etc.

Nursing homes are never going to be as good for the elder as being cared for at home by loving family members. Still, what is the benefit if you must give away your life to care for theirs. Sometimes, there comes a time when you also have to give consideration to your personal health and the well being of your family.

I've been caring from my parents from age 55 to 63. I went to my dad's doc today for a consultation about his care. My blood pressure was 190/100. That's not good for me and I am pretty tired. My mom has passed, but my dad needs 24/7 care and lives with us. He's 89. Is it right for me to die so that he can stay with us? After I'm disabled or dead, then what? I know that it is perfectly reasonable for me to what to have a life of my own, but it breaks my heart to give him up to NH care. The logical answer is that I should be able to say that I have a right to my life. The emotional answer is that I should be able to handle all things for all people. Unfortunately, I know that I can't do that without a great personal cost.

I do have a caregiver that comes in 3 times a week for 3 hours. That is huge and more than many have. Still, it does not provide me with a life. That's the reality. My heart goes out to all who are struggling with this issue. You have to be kind to yourselves also.
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We are very lucky here we have several NH to choose from to use and I found the best is to use one close to where you live-the one my friend is in and my husband was in often have liberal visiting hours so you can pop in whenever until 9 pm. Our state does a good inspection that takes several days and the results are out for anyone to read.
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musiclover I hear you I have worked in them. Then never thought twice when we decided to take care of my mom who passed with cancer at home now I got my Mother in law with demientia & temporary clostomy bag due to infection out of one first of December. Well I wouldn't have it any other way its taking 24hrs. a day & i'm blessed because I was not working. One sister is helping out but, We have found out the other sister was spending her money while she was home well until my husband took poa last month.. been crazy ride and only 3 months and living day by day till she gets her colostomy reversal & I'm bringing her home after hospital & dr. saying she might need nh for bowel training i about laughed the 2 daughters put her there after the colostomy surgery in Oct. & O LORD it was a long 2 months .. Now we are home and I can take care of her needs and she is starting to get use to it....sorry for venting a little first time I have posted ..So needed to find it love n enjoy n pray for so many of you!!! Good luck on any descion you have to make for your family!!
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musiclover1 - it is your kind of post that scares me. Scares me because I DON'T want to put mom into a nursing home if it really is that bad. Never had to deal with them so I don't know. Your points seem to be quite logical though. Oh boy. I seem damned if I do and damned if I don't. As an only child, my mother has only me as my two daughters will be headed North soon. With a herniated disk in my neck, 2 bulging disks in my back, sciatica, diabetes etc, I am scared. How long can I reasonably care for her. But NO, I don't want her to suffer because of my "inadequacies." Seems like I am back to square one again.
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Honestly, I don't know what is wrong with our country. I have personal knowledge and experience that I have NEVER come across a nursing home that I would trust to have my mom placed. For starters, the pay is low so they attract people to work there who are there for the meager money. Yes, once in a while you come across someone who is caring and there for the right reasons but this is few and far between. Many of the people who work there, and I have visited some 20 in two different states, are not even able to communicate English. They have dialects that are difficult to understand. I had my mother during a transition stage of relocation from one state to another to be logistically near me and I receive a call that she fell out of bed while suffering from dementia. If there are good nursing homes then I know for a fact someone needs a reality check who has this opinion. You can fool yourself all you want. When you visit your loved one you may be impressed but after you leave, watch out. Funding in our country causes nursing homes to have to make do. They can't afford top quality care so you get what you get. Infections are common. Workers act like it is a "pain" for them to care for your loved one. Again, I have a lot of personal exposure to nursing homes and I have never seen one that impressed me. Granted, there are "reasons" such as minimal funding but I can't excuse the bad attitudes and some people acting like they hate their jobs and roll their eyes and don't wear gloves and it goes on an on. Shame on our country. My mother always says please don't put her in a nursing home where people wait to die. I have my mother at home with me. I have caregiver burnout. Regardless, I will deal. Our country focuses on the young. When you are elderly, our country suggests nursing homes. Yes, for the wealthy they never have to deal with this because they can afford top of the line assisted living facilities. Don't I wish I could. Don't many of you. But our country has it all wrong. Actors/sports figures etc get high pay and medical personnel don't. So I am sorry, I don't agree with anyone who says there are great nursing homes out there. What are you basing that on?
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Cmag is so right a promise made with no knowledge of what is to come is not the right thing for you to keep. Their are good nursing homes out there-the best is the cklosest so you can go in there and check on things and keep the staff on their toes and take care of problems when they start. 60% of caregivers die before the one they are taking care of. If things get bad you will know when caring for them at home is not working-if you are doing it all alone and other family members are just too busy to help that is the time for placement-most will not be any more unhappy in a nursing home-in my case it was the verbal abuse that I learned I did not deserve that got me to the point of placement-especially when he told everyone I did not do much for him.
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When we reach the point where we are throwing ourselves, our marriages, our children, etc. under the bus in order to keep someone from going to a nursing home, I think such martyrdom is wrong and is often done became of emotional blackmail via fear of making them mad, obligation that we might have promised not to put them in a nursing home long ago when we had no idea what that might mean, and guilt when putting someone who really needs to be in a nursing home is not legally wrong and at least where I live there are good and there are not so good nursing homes.

When we martyr ourselves, we place ourselves at risk of dying or going to the nursing home ourselves before they do.
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To Cindy Laverty- that's the bind. There are really NO good NH's out there, at least, in South FL. It was like sending Dad to a snake pit. He'd get one infection after another. I realize his case was complicated, and he was complete care, but no one wanted him. And it was not a case of bad insurance or money. I just want to make others aware that when it comes time to choose a NH, its daunting. We were given a listing of 200 and were expected to check them out ourselves. A "consultant" would help us- to the tune of 100 dollars/day. forget that. It's not as easy as it sounds, or was not for us. No one wanted him. Rehab, Hospice, No one.
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Hi! Read your comments and I feel for all of you. My dad passed away this past Feb 4. My mother and I were the primary caregivers. Each case is unique. Some people can do at home, and some will choose a nursing home. We tried it all and gave it every chance, but in the end we took care of dad at home. We even had to fight for everything we got.---In the end...It was a good thing. He died at home, (in my mothers arms)- every bedsore he got in the hospital and/or nursing home healed with our care at home. He was totally dependent on us for everything. Feeding tube, tracheostomy - and was bed bound. It was hard. The good days, were good, but the hard days would tear your heart out.
My point?
Not everyone can do it. And, if you can't you shouldn't feel guilty. My mother, age 74 is a retired nurse. I am a medical assistant. There were days I didn't know my own name, even though mom and I slept in shifts. The first week home of getting him settled was hell and we wondered if we could do it.
As you get into a routine- if you can call it that- depending on the level of care...it helps and it gets better. The saving grace is that he didn't know how sick he was and was just happy to be home and have us around him. If he knew how sick he was, it would have been harder.
After 3 weeks, I still miss him, his smile and taking care of him. It was the hardest thing I have ever done, but the most rewarding. I hope my post made sense.
Do what is right for you, and the person you are caring for. That's all I can say.
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I have two children that keep me moving on the go while taking care of my husband's needs. I also know a woman who has a made a career of being a caregiver simply cuz she felt she was called for it. I will only do what I must if my husband no longer recognizes me or the kids or becomes abusive physically to the point its not worth the stress. NH home has been brought up many times and he rather be with us and I can see that. I am still young and have a solid head on my shoulder...I just can't stand putting so much distance between my husband and our kids, I will know until then ..I am praying and hanging in there cuz I know he is walking with my family :)
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You will know the point where you have to make the decision-I kept waiting for others to tell me what I knew was true for my husband but him going on medicaide would affect me financially-with a parent or other elder relative they are responsible to pay down to get on medicaide. I would suggest you go to visit the nursing homes near you and take a tour and find out as much as you can-it is best to find one near where you live so you can pop in often. Ckeck out their meals their PT their activities-look at the rooms and talk to whoever does the tour-then go on to the next one-if you have not been in a NH for a time you might be surprised how nice most are-they do get inspections and most are clean and the staff is well trained and you can always change to another-our local one is really nice I could live there. If having the person at home is really affecting your life and you feel like a prsioner it is time and if they are treating you badly it is time-my lawyer told me that 60% of caregivers die before the one they are caring for-I did not want to go from being treated badly to dieing so that got me thinking and my therapist said no on was going to rescue me I had to do that myself. If you life stinks you have to make the move. Good luck and keep us posted your experiences will help other-and there are so many people who share your burden and they always are happier after they place the person and usually after a short time have a great relationship with that person and you usually can take them out for a ride or to visit.
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When the challenges of keeping someone at home become too difficult and you and your family are sacrificing your lives; moving someone to an assisted living or skilled nursing facility is something that should not be off the table. When health issues become more than the family can take, alternate living options are often the best thing for the person needing care. There are wonderful facilities and there are terrible ones. Do your due diligence and explore your options. You are not abandoning your loved one. You will most certainly come to visit, but you will also have peace of mind that your loved one is being well cared for. You are not a bad person because you want to have a life. Depending upon the situation, sometimes alternative living is in everyone's best interest. Often your loved one will make new friends and have social activities that you haven't thought about. The elderly become demanding when they lose their friends and feel isolated. It's one of the bonuses of finding a really good care facility.
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I don't know what the answer is anymore than you do. I feel like keeping our dad at home and not sending him to a nh is affecting so many other lives that it is not even funny. I have a little boy and a husband. My sister has a husband that she rarely sees or gets to spend the night with. And i know it has affected our lives. Dad is not bad enough to send to a nh. But he is not well enough to stay by his self. So we are stuck!!!!!
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Great question. All I know is that my friends and close family thinks it's too hard on me, healthwise. She has nursing home insurance so it isn't a money issue, it's just I see how she still has her independance. She is up and down in the fridge all times at night. I did a respite care this past June and they said she would go down to the dining room/kitchenette wanting food. So they would get her something. She likes to have her own say. I hate to take that away from her. She can roam around the house, pet the dog. Has a nice room with beautiful view. If something ever happened to her where she no longer knew me I would definately do a NH. Because I couldn't take that.
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