Why is dementia so painful to family?

OK, let's agree that not all nursing homes or bad, I mean really! There are some very good ones out there, which is why we should really do our research for user ratings and reviews. There are some very good ones out there, which is why we should really do our research for user ratings and reviews and find the best facility in which to place our loved ones. Again, not all nursing homes are bad, but there are some questionable ones, and I said some not all. I think what makes or breaks a nursing home is really the staff running it, because a nursing home is only as good as the people running it as well as their practices. Yes, there are some nursing homes out there with low ratings and bad reviews, but for every bad review it is a good nursing home with a good review and high rating. Yes, something Apel have bad experiences because in some of the facilities abuse and neglect really does go on as well as theft. This is why research should be done when a nursing home is considered, because you want to only go to the one with the highest rating and the best review, even if that means you must travel for a great distance in order to find the right facility. One thing many patients don't realize is that they have the right to discharge themselves, two friends did just that, because both of them transferred from one nursing home to another. This would only be right for patients who are in their right minds and not so much for those who are in competent to make major decisions. There are also other patients who are only there temporarily, and they can discharge will when they feel they are ready before staff discharges them, if they don't stay long enough to get discharged. A nursing home can feel like a prison to many people who really don't want to be there, and I can clearly understand not being able to come and go as you please. As a preteen, I actually became a ward of the state after my rescue from abusive parents, so my experience with institutions helps me to fully understand how it feels to be shut in by someone else and not be able to leave, especially if you happen to be in a locked facility (where all doors are locked). This is why it can feel like a prison, depending on where in the nursing home you are placed by your family (or guardian).

NY2015, I've cared for my mom in my own home until I could no longer do it alone. 24/7 365 days a year is impossible for one person. My mom now lives in an excellent and caring AL. And no, I don't work in a nursing home and never have. You WERE generalizing and I did take offense at your remarks. Good day.

Knock Knock...
I need help with the long posts... please make them into paragraphs. My eyesight cannot read all the text if it is not broken down.
Segments would help me A LOT.
Thank you, and Yes we can ALL agree TO DISAGREE!!! and YES we DON´T have
TO
like
WHAT
others
THINK
or
SAY.............grrrr.............we are all maxed out. Good thing (if there is a good thing) we have not thrown the tablet, computer, keyboard, mouse out the window! (yet).
M88

Hello Mulata88, I agree with you that the long posts are difficult to read. Unfortunately this seems to be a fault of this site's program. Frequently my posts are very long, and they have paragraphs, indentation and extra spacing when I type the, but when I hit "post" all that goes away and all you get is on big block of printing.

Some times it works just fine, but more often not. I don't know what I've done differently on the posts that maintain their formatting, versus the ones that do not. I'll try breaking this one up, an we'll see if it works this time. Unfortunately there is no edit feature on here, so whatever happens when we hit "post" is what we're stuck with.

Wow. Not sure some of the answers were helpful to the originally asked question. Let's not make this most important site used for supporting one another into a social media free for all. It's my humble opinion. I have found great encouragement. Please, let's stay on topic and be here for one another, encouraging one another on this sometimes painful journey of aging care.

NY2015, not all of the homes are bad as I mentioned before. Yes, some of them have not so good practices and abusive staff, but there are plenty of good facilities that will not abuse the patients. A nursing home is only as good as the people running it, so depending on who is tending to the patients and what kind of people they are will depend on how well treated each patient is. Also remember that even the best nursing homes can have only one bad person to spoil the whole place, all it takes is just one person to ruin it. However on the other hand, a bad nursing home can become good if all of the bad workers are replaced with good ones and giving the bad nursing home a higher rating, and all it takes is serious changes and improvements in facilities that once had a problem. This is why a nursing home is only as good as the people running it, because sometimes you just don't know what you're walking into. You can hope that your love one is well taken care of if they need a but nursing home. One thing you must be very careful of is to regularly check on your love one if they happen to land in an Alzheimer's unit. Dealing with those types of patients can and often does stress out the workers to the point but some of them can start abusing the patients, I saw use that one of our local nursing homes in my town. This was once a very good nursing home that has had at least two abusive people take jobs there. This is why you really want to regularly check on your love one in these facilities, and if possible even visit strangers, because people who have no one checking on them are most likely to be the first one is abused. Anytime you have someone in a facility, it's always good to stay on high alert and know everything that's going on at all times, and secretly observe how others are treated. In fact, this would be a very smart move before ever putting your love one into a facility, just see how the staff treat the patients before moving your loved one in. this is just one part of doing your homework and doing it well because you don't want to drop your loved one into a facility now and regret it later. This is why it's very important to do your homework and do it well. This is how you find the best facilities that are the safest for your love one

I agree 1RareFind, It's not like we drop our loved ones off at the curb in their wheelchair and zoom away. I've been on Aging Care for 5 1/2 years and the story of my experience here is well documented - the struggle of my dad dying of brain cancer, his death, bringing my mom into my home and how hard that was with a narcissistic mother. Her placement in an AL was the hardest thing I HAVE ever had to do in my life. Believe me, I checked things out and am in daily phone contact and visit personally several times a week. I'm full hands on deck and sleep with my cellphone on my nightstand.

I have no problem calling someone out for saying 'people dump their loved ones into evil places'. And saying they weren't generalizing in a previous post. The part about saying I work in a nursing home and need meds is also not what someone who has been through the drill of elderly care on a 'personal' level is not very nice.

They are sorry individuals whose intention is to hurt others. That's how I feel. I can't imagine how a new caregiver coming to this forum would feel after reading some of the posts on this thread. Negotiating through the FOG (fear, obligation, guilt) is hard enough without reading that screed.

TO 1RAREFIND: I don't know how old you are or how much experience you have with the health field, but when you say that people need to do their homework by observing the facility before they put their relatives in there makes the rest of your post weak. Don't you know, if you have even noticed, that when families are around they behave differently than when they are not around? Well, I have because I have worked in the field. Some of them are very cruel with their comments and I mean everybody. That is why I feel the system has failed. Therefore, This is NOT " how you find the best facilities that are the safest for your love one ". Windytown is also acting very naive by thinking that
by calling the facility and talking to his relative, I would assume and not the satff, and by " daily phone contact and visiting personally several times a week" and " sleeping with the cellphone on a nightstand " he is doing his homework? Sorry to hurt your feelings or turning both of you more against me the way Windytown is ganging up on me here by trying to defend the killers that hide in these nursing homes, but this is not how you " check out " a place like a nursing home. They try to protect themselves by protecting their " public image " despite complaints, fines, and lawsuits. Believe me they know as I found out. It is all about money.. They more residents they bring in the more money they get from the insurance companies. If the person is very sick or old they know how to manipulate the system. I can tell both of you do not know, but it is not your fault. Good luck with your families. I wish you the best for them.

Yes windytown, people can definitely be very difficult to deal with. In the case of dementia however, what is so hard is that someone who was doing so well came suddenly become as I know how to describe it as "scatterbrained" because their thoughts are everywhere when they become confused and especially forgetful. Someone who was once levelheaded becoming forgetful must be the very toughest thing especially when you've known each other so long and all of a sudden one day they forget who you are. As for narcissistic behavior, I know what you mean. There are people who think only of themselves and not anyone else's needs, especially during medical emergency where a permanent condition is considered a type of invisible disability until it shows up for others to see. I had such an episode one time and had to go home on my power chair when I had early warning signs that I could overheat, and I can become very weak and shaky and become very ill. The person kept his place pretty hot especially during summer, and I cannot be in a hot environment. The person knew this and trying to set me up for an ER trip in the squad, but I didn't fall for it and it made him pretty mad. Each time his agenda failed he got mad at me because I started wising up and taking precautions to protect myself. He was only thinking of himself and not someone in need. The worst possible time for someone to get demanding toward you is when you must deal with a medical emergency of any kind, especially when you must lay down during that medical emergency. This is the absolute worst time to deal with a narcissist, especially someone who may be developing dementia. Thank God I never have to actually taking someone into my home, I could never handle it and I would probably be the one running the other way and getting help because I'm not one of those kinds of people who's cut out for that kind of full-time responsibility. You can still have experience without having to take someone in, and your home is actually your safe haven. This is the biggest perk of not having to take anyone in and give them round-the-clock care. The kind of things that unfolded with the two people I knew actually worked out for the better because I could've never handle it any other way. You can come along and help them and do everything you can without necessarily having to take them in under your roof. When your home is no longer a safe haven, this is where sometimes families can go crazy, because actually you need somewhere to go to get away. This is why no one should take on this kind of task by themselves because it actually takes a team effort to be able to properly care for someone because having the full task on just one person will definitely break them

NY2015, I hate to tell you this, but one time I was visiting someone in one of the facilities near my home, and I actually secretly witnessed a worker getting very rough with a patient who was definitely not fighting anyone. I actually saw this so I know what I'm talking about when I say checking out a facility so who's post is weak? Yes, as I said before I actually witnessed abuse by pure accident. I do know about the money thing as well, I'm very well familiar with this because one nursing home harassed a friend of mine who had POA over his mom. They used for that's against him to scare him into submission of giving up his POA of his mom, he was the one paying the bills but they got very greedy and threatened him into giving them full control. Anytime you notice something suspicious in any facility, this is where I personally would never put a loved one. Not every facility is going to act differently, this is where it's up to you to be anonymous and in the background, this is how I witnessed the abuse firsthand in the same room I was visiting the person I came to see. This is why I suggested doing one's own homework and checking out facilities because I know good and well other people have done likewise. Others have gone so far as to temporarily put their loved one into a home to see how well they like it, so the love one can actually give you the review themselves before becoming a permanent resident. This is when love ones are put in temporarily. I do know that sometimes of users will be more careful with visitors around, but then they're going to slip up sometime, and someone will see or hear something. Again, this is how you know what a facility is really like when you can stay quiet and off into the background and well out of the way. All you have to do is simply go see people who were currently in the facility, and just secretly observe your surroundings, this is how I caught the abuse in the act and anonymously reported it. It's really not that hard to find out a facility, just go in and just be yourself. If you can go in alone, that would be your best bet, I did and that's how I caught the abuse firsthand and was able to successfully and anonymously report it. That is a facility I would never ever put a loved one! Now the other facility across town that threatened my friend, this is a big huge red flag when they threaten family members of the patients. Had I been in my friends shoes, I would've used resources to my advantage because someone who has POA and is paying the bills should never be threatened as he was. This is another place where I would never put a love one, because if they'd threaten someone on the outside, just imagine what probably goes on inside! Nope, certainly not a place I would ever drop off someone I love, and I stand strong about doing one's own homework before dropping off someone at a facility. There are very clever ways to find out about a facility by just simply growing your social network and listening to what other people are saying. Yes, just listen to them talk like I did and be very observant, quiet and off in the background when you visit loved ones in those facilities. Once again, it's very easy to find out anonymously about a facility just by watching and listening. I did, and I was very successful enough to know be able to give my own review of both of those specific facilities, neither of which I would never drop off a loved one, ever!

1RAREFIND: You were lucky you caught them in the act, because as everyone reading this would agree the moment they see a family coming in they will certainly change their behavior. You will not always catch them in the act. If you had not you would have gone ahead and left your relative there. So, my friend, you are taking a chance. This is very hard and there is no way that by visiting them once, twice, three times you will be able to know those evil people in there. Just think, when someone is married it takes " Years !!!!! " for the couple to know each other. You take a big chance. I took a huge chance because I trusted the hospital that was making the recommendation because I did not know about nursing homes until they broke that trust. When you are inside you get to see things that outside people do not get to see. You get to hear things that outside people do not hear. Life is putting all these stories people in front of you. You can either believe these stories or you can ignore them. If you choose the latter then you pay the consequences and there is no way that you can go back in time to correct the mistakes that you made. I made a mistake. I trusted those beasts. I do not trust the system and I hate it when people act like they love nursing homes knowing that their relatives hate them. You loved ones want to stay with you and this is what I regret. I only wanted my grandmom to stay there for the physical therapy and then come back home and just die with us. That is what our loved ones want and if we love them we have to grant them that wish. If we do not love them then just dump them in there. I would never do that with the rest of my family. Lastly, I have heard that life insurance companies are offering " long term care " in your home. You pay them a certain amount of money per year, I have heard $ 7000 dollars, and they will send someone to take care of your loved one at your home so that they can be with you. I never knew this. Some nice lady told me about this. I dont trust life insurance companies, but this service sounds reasonable. You might want to look into this. God bless you and those of you who are trying to survive in these hard times in such an evil world.

Correction. The life insurance policy would assign someone to take care of your loved one at your home. I did not mean to say you. This is a huge opportunity to get away from those hospices, assisted living and nursing homes that do not know your loved ones and that do not care the way YOU would care and oversee their care in your own place. The lady in charge of taking care of your loved one would be staying with that person at your place and you would be able to see how they take care of them.

$7,000 a month at home. Try again.

We all have an extra $7,000 laying around a month. Yeah!

NY, I have taken a long time to think about your posts. You are obviously distressed. You want to hurt people on this board because they made different choices in their lives. Are you jealous because they made choices that freed up their lives at least a little bit?

People, The $7000 dollar quote that I heard from this lady on a walker is per year. You can check with any life insurance company. I have heard from them too. The amount is per year not per month and they assign someone to be in your house with your loved one. This is only an idea. I never knew this until recently. I would have done this a long time ago because I was the only one trying to take care of my grandmom. You can either believe me or not. As WINDYTOWN I am not trying to change no one's mind. Stop being so defensive about nursing home. Your family can stay where they are. You can sign up too with them if you want to stay there. I am only trying to pass on information here to the community. If you love nursing homes and you like the way they are treating your family, then fine. I am not going to go out there and change your mind about them. Everyone is free to do whatever they want. I was only passing on information to you. These life insurance companies have advertised these services on their policies which I did not know about. I never did because I was the only one taking care of my loved one and I was not paying attention to nursing homes or life insurance companies. If you feel you are being treated fairly in those places then fine. Good luck. You should at least thank me for this WINDYTOWN. Just don't go searching for information about them on the internet. I don't want to change your mind. End of Discussion. Bye.

End of Discussion, NY2015? Thank you!!

Doingbestican,
My situation with my Mom mirrors what you are saying. As I stated earlier, my Mom wanted to go home, Wanted to know when her husband was coming home and told me that her kids hadn't been to see her in months. Truth is she was at home where she had lived for 27 years, my Dad never left her side and all 5 of her children visited every week, some of us every day. God was so good to us. My Mom only had Alzheimer's for 5 years and knew me all the way until the end. Her birthday is this Friday. She passed away 1 yr ago on the 19th. I miss her so much!!!

You are welcome Skizzie.

My condolences to you fixercantfix. I know what you are going through.

Chiming in late here. I actually read this entire thread and was absolutely flabbergasted by some of the negative comments, but some posters sound a lot like my family.

As caregivers we're often blamed or judged for decisions we've made by someone who hasn't walked in our shoes. IT'S OKAY! Just know that each one of us is doing the absolute best we can with what we have to work with.

My hat goes off to those that are able to care for their loved ones in their home either out of sheer love and patience or necessity. I know first hand how expensive facilities can be, and some people aren't blessed with the resources to be able to place their loved ones in a facility that is better equipped to handle their needs and have to face the increased stress that comes with having a loved one in a home that could be dangerous.

For those of us that have chosen a facility, most of us would agree that it wasn't a decision that was entered into lightly. In fact, for some of us, placing our loved ones with people that are trained to handle advanced medical issues, away from household dangers (like unlocked doors, stairs, or appliances that could harm a person with compromised cognition) was the most loving decision we could have made, and it happened to IMPROVE the relationship with the loved one.

So... it sounds like some posters are still dealing with the pain of losing a loved one in a facility and their only recourse so early in their grief process is anger. I get it.

In addition, they may be dealing with the guilt of facing that they were the ones that put their loved one in the facility where they died and haven't determined that it isn't their fault.

Hurting people hurt people and we only give them power by responding. That is all.

This forum is a Godsend and I appreciate all of the love and support I get from you all!!!

I know there are many nursing home supporters around. No comment.

Why is dementia so painful to family was the OP'S question. ANSWER: Because it is not FUN to see your LO go downhill!

I have followed your post since the beginning and I am so disgusted with some of nasty and hateful responses you have received. I too posted a valid question and the "know it all" responses of some of the community out there floored me. People didn't read the post in its entirety or answered without thinking their post through. I was judged and scolded and chewed out by people who have no idea who I am or anything about me. This is supposed to be a support forum not a heap more crap on the caregiver of a dementia patient. I will NEVER again post a question on this site. If someone responds to a question in an accusatory manner they should simply refrain from replying because it doesn't help anyone but the negative jerk who just cannot control their tongues. They are probably bitter about anything and everything. I did get some positive and helpful feedback from some but the four or five hateful remarks pretty much ruined my experience. Hope those people aren't caring for a loved one suffering from this hideous disease. God bless you, I will keep you in my prayers.

Have an out. Have someone to call you with a pre arrangment so you can get out with an excuse..Bring him treats. Everytime you see him, have something in your bad for him,,, chocolate, chips, sandwich,candy, new soap, anything, This is for you Pops, hope you like it, I can only stay a minute. I'll be back next week to sepned more time. Luv ya. :)

Still many nursing home supporters out there. Unbelievable. Someone is paying a price. You have to see it people.

I bought my grandmother a table lamp when I went to Missouri to retrieve her and bring her to California , she loved it and made comments about it many nights, Feb 2011 Pradaxa overdose? and subsequent strokes over the next 2 yrs turned her into someone I never knew and someone who stopped telling me she loved me, started saying extremely rude, hateful things, and more I never knew about until after her death when the non-caregivers swooped in and to advantage of her condition and about 6 codicils that were made over 2 yrs that took away over $1 million dollars to me, money I have relied upon and due to not being able to work have now faced impoverishment after fulfilling my contract, yes I had a contract signed and verified yet my Sister and Daughter have retained attorneys who want 33% just to fight me! rather than send me a penny, I filed in Probate their last day I had and got $1 million back, however my Atty is eating up $350,000 of which I cannot afford to forget about so am now still fighting 2 yrs later for what I earned!

I forgot to finish the story of the table lamp, my Grandmother made it clear she loved the lamp I got for her, she used it up to her last 2 months of life she lived in a care home and quit talking with me, she had some women come take everything out of the house, including things that were mine , however left the lamp, I told the ladies you forgot the lamp and they both said she was very specific to take everything but the lamp, to leave the lamp where it was, in her now empty room, believe it or not after all the horrible things I've endured , this really hurt me badly, I think it has damaged me in ways I will never heal from. She had lost $500k to B of A when Freddy Mac crashed and I got it back for her as they told her they were bonds, we discussed this and I asked her how she felt waking up knowing she lost $500k, I told her it would ruin my life I would rather think I never had it coming than think so and relied upon it to find its gone!
She knew this, she often would tell me she wanted me to travel etc and I do not want to be poor and sick later in life etc. very painful memories.