I am just writing to say Hi, letting you all know I am back on this site. I see, even though it was off the net for a while all the messages seem to be pretty much still intact. I am doing well with my mothers situation and the cameras have been an invaluable tool in keeping my mother safe and secure in her own home. I feel so good being able to do this for her in order to give her what she so desperately wants to do, to end her days in her own home. If anyone has any questions I will be glad to answer them.

I have been fighting for my mom for several years now and the broken hip was what caused her hospital and NH stay, I was there and saw how moms skin got torn in the hospital and I was unable to stop them in time for it to not happen. They just slid her over and didn't have one of those draw sheets under her and I assume that they had done this several times before I even witnessed it.

I agree with you on the statement, one person can decide you are a problem and that is exactly what has happened in moms case, for us it was a social worker supervisor who had never met my mom and decided we, as a family didn't know mom well enough to make good decisions for her, which was untrue, and we have now come to the place where we have proven we care better for her in her home than any of the facilities she has been in has cared for her and we are getting her home on Friday, ending our daily trips to the NH to make sure she is getting the care she needs, but of course we will be seeing her daily in her home.


I need to defend the ombudsman, I guess I did not make myself clear, she is the ray of sunshine in this whole scenario, she is making the social services do what they were supposed to do in the first place, she was saying, and I should have stated this too, that many people give up because the system is to fraught with paperwork, time consuming detail.I also feel that many times the people who need the help get trampled on because many workers don't know what they are doing, may have to many clients, or just may not want to do the job they were hired for, or as in moms case, this person has her own agenda, her thought process is that all old people need to be in a NH. The Ombudsman said caregivers are also the ones who get hurt in this process, that caring for a ill family member is very stressful and caregivers should be helped and not hindered. I previously had a bad experience dealing with another elder ombudsman who did not do her job, this one is doing her job and I am so glad I contacted her.


I think what my family has done has opened the door a crack. There is some light coming in, we are going to keep on fighting. I know it is hard, from our own experience, to fight the system, to get things done to help others, but we have already shown them that they are not going to step on us, that mom has a right to end her days how and where she wants to.

I am not saying what has happened in our caregiving is right for others and others ways may not be right for our family, somehow these things have to be worked out to make it the best possible ending of life for each and everyone.

Fighting the system is tough and I personally have zero patience with it, which is why Mom never spent a day of her last 8 years in one! I took care of her myself and if I had it to do over again, I'd do the same. I knew that, like it or not, I couldn't allow her to live independently because her judgment was shot and she wouldn't get the same level of care or monitoring in a NH as she received at home from me.

Nearly every encounter with the healthcare system became a nightmare for me and for her care... Most of the HH nurses were wonderful but all it takes is ONE person to decide that YOU are the problem and the system will come down on ya quicker'n a jackrabbit on fire. Wish it worked that efficiently for folks who don't give a crap about their elders...

Frankly, an ombudsman saying that "too many give up" should earn 'em a swift kick in the butt. It doesn't HAVE to be that way and they COULD help folks more than most of 'em do! The level of vigilance required is simply more than should be expected of anyone! Most folks don't give up because they want to - they do not possess the technical expertise, intelligence, due diligence and sheer tenacity required to fight. It isn't the families who are so outta whack in many cases - it is the system itself and the greedheads who run it.

quote:

She went to the hospital without any skin tears, and left with her bottom being torn and very sore.

And this was because the staff did not keep her butt dry enough... IF they had used barrier cream and kept her turned, those breakdowns would NOT have occurred. That they did on a hospital's watch is unconscionable. I'd like to say that's an exception, but EVERY TIME Mom went into the hospital (20-30+ stays...), her skin broke down or became vastly worse despite wound care nurses and all the latest techno-toys for wound care available, not to mention a STAFF to do the necessary turning and changing. She came home to ONE WOMAN (ummm, that would have been me) who did the job right and healed the damned wounds the hospital allowed to occur on THEIR WATCH. Sorry for the rave - I'll be pissed off about that issue well into the next lifetime...

I hope everyone will fight the good fight but each caregiver simply MUST realize that each of us has to keep ourselves healthy as well. Our elders fall apart faster than we can fix them while we're spending our lives fighting agencies and buttheads, running endless errands, cooking and serving three meals a day, cleaning up unfathomable messes, etc. I just guffaw when people compare eldercare to raising kids! MAN!! I never expended one hundredth the energy raising my kids as I did caring for Mom!!

It all revolves around the caregiver remaining whole and (relatively) sane. It's MORE than being chief cook and bottlewasher - you have to become an instant expert in many different healthcare fields and wear each hat several times each day, not to mention a healthy dose of legal expertise as well. It isn't a job for the faint of heart, frail of body or spirit. It is NOT a job that everyone CAN do and our healthcare system makes it so much worse than it has to be...

I'd LIKE to think that our experiences will bring change, but I don't believe it for a second. As much as I wanted to make things better for others in my community, I learned to focus on my mom's care and let everyone else fend for themselves.

At least here at ECO, we can give service via our experiences directly to many caregivers if they will read, listen and understand.

Bobcat,
I could not even begin to tell anyone all the things that have been happening to our family in this 6 year long battle to take care of mom, the last 3 have been a total nightmare. Most of it dealing with the system which we never asked them to be involved and those that are in the system ended up making choices and judgements based on less than an hour visit with mom and in many cases have never met my mother, including the court appointed attorney that was ordered to represent my mother. The only contact she ever had with mom or my family was 3 phone calls, one to me, and 2 to my mother, none of them longer than 5 minutes in length, the 2 to my mother were less than that. Also the attorney in question was pro nursing home and my mother did not want to be in one. That was only the beginning. Then you get into NH care and that happened because mom broke her hip on the very day we heard that she didn't have to go in a NH.How's that for irony? Then the care in the hospital, and the 2 NH's she was in, was lacking in many ways. She went to the hospital without any skin tears, and left with her bottom being torn and very sore. That has been healed, so that is a blessing. Talk about NH nightmares, we have had that with 2 of them and the one mom is in now is doing a bit better as we have contacted a very good eldercare ombudsman who is helping us and says we have been an extraordinary family in how we are taking care of mom and the fact that we are not taking no for an answer is great. She says to many give up and I personally think that is what they want us to do, but we are still hanging in there fighting. There is more, but I do not want to bore you and I do not know how much you would like to know, it just helps to write and know I can tell others to never give up, it is hard, but I kknow it is worth the battles.

Hello JAH, welcome back. Sorry to hear that it has been so rough for your Mom and you and your daughters. NHs often leave a nasty taste for good reason. There are good ones and bad ones like with most things, and certain areas of the country do seem to have different standards.

Even in the best of places, Our LOs need an advocate, preferably a close family member, if one is available. Most of the reports on this board confirm that moving them into a AL or NH just means that the type of care giving you do changes, not that it goes away. In fact, sometimes it becomes more difficult. Your own story proves that out and if it can be a case study to improve things, I thank you in advance.

While it is true that when the time comes that they need to be in an NH (even temporarily) something is already going the wrong way, the point is to have them where they can be cared for properly by professionals. We shouldn't have to constantly fight to see that this is done. I know you have been jumping thru hoops for sometime now.

Hi Moms_Buddy

It has been stressful, but we are making headway and may be helping others in the process. I have been told that moms and our journey can and may be used as a case study to help others. Nothing could make me happier.

I do know that I feel badly for those in NH's that have no one there to help them, and if they have mental problems, such as alz or dementia, it is really not the best situation. There are good NH's, but we have went from one that was very bad to one that is a bit better, but not a place where you can trust that a loved one would get good care if you were not there daily to see that it is done. This should never be the case, all in a NH should get good care whether they have family involved or not. It has been a tough road that we have travelled, but feel that we are not alone and if what happens to us helps others, then in some small way it was for the best.

Sorry things have been so tough on all of y'all, JAH. When things start to unravel, they really do pick up speed, it seems! Sometimes ya don't get one problem ironed out before three more pop up! I hope things smooth out for everyone soon.

Hi Everyone,
It has been a while since I visited this board. Been terribly busy. The cameras are still working, but things have happened, mom has been moved to a apt closer to us along with the cameras. She broke her hip in Dec,I was there asking her to use her walker when it happened, she didn't want the walker and fell well pushing it away from her so ended up in the hospital, got skin tears on her buttocks, ended up in a NH, got Pneumonia, dehydrated, mal nourished, a UTI. Went to the hospital, then to a different NH, we saw some progress. Mom was able to walk and go up and down stairs, she got dehydrated again was given fluids in the NH, she is getting better and we are planning to bring her home, she is now 88. Have really learned about NH's in my area,they are in my opinion not good and I know that you need to be there constantly to monitor the care and even then that may not be enough.

Jah, one never knows what will work til we try it.We choose the best way to make all happy.
I know you are doing all you can to asure mom remains in the compfort of her home with all the precautions needed.
This is something that is catching on all over.You show us it can work.
You made the decision that was right for you and I do believe we will see others follow your lead

Hi Mae,

You are right, where there is a will there is a way, and I think in many cases cameras are the answer. There are times where more aid is needed and I know that, but I think to many times people are taken from their homes too quickly, when if thought about there are ways to help them stay in their homes and be independent as long as possible. I am only talking about situations where it is similar to my moms health and care issues. No one is the same, no situation is the same. I only say these things to let others know that these things can and do work if you have a situation similar to mine. With minimal help and cameras and many other types of technology out there, care can be given with safety and less cost than many are experiencing now.

I beleive that I had been very much mis-understood in the past on some of the things I have posted on this board, I need to assure you and others my mother is getting every bit of care she needs.

I know there are cases where nothing but hands on care will work and those are really hard times for both the caregiver and the caregivee, I think though anything that can be done to stave off the actual hands on caregiving is a blessing to both, the ones who care and the ones care is given to.

Thank you Mae for your reply.

Jah, where there is a will , there is away.You had both because you wanted to grant mom her wishes.I watched a show one evening where they had a family that used these cameras for his mom.With so many families scatterd all over this maybe the answer.Plus you stated you have those who check on her.

bnot,

Thank you so much for your post, you do not know how good it makes me feel to know that I have helped someone.

The cameras are great, and I can see it being something that many can use and with the elderly population growing, there is going to be needed more and more innovative ideas.

Thanks again, you have made my day.

Wow, thats an interesting way to make sure a parent is ok. I know many do NOT want to give up their homes. Mine fought tooth and nail before she gave hers up.

I'd never thought about camera's. Wonderful idea, especially if they are frail, and really need more help than they are willing to admit.

I wish you the best of luck with this! Great idea for many, who's parents don't want to give up their home! Thanks for posting this, as most of my friends parents are getting to this age too. Something I can recommend for them.

Hi Mae,

It was good to hear from you. I hope you are doing well.

I would like to mention that having cameras, in many situations, can and does reduce much of the stress level for those caring for ambulatory loved ones, from long distance.

There are many that do not realize there are restrictions on who gets NH care, there are certain tasks that if you are able to do them, you are not, at least in my state, eligible for admitance into a NH. Also, in my state, if you are one who refuses to be put in a NH, there are legal steps that have to be gone through before this can occur. My mother fits both these categories.

My problem was, knowing this and my mothers personality, what was I to do? My eldest daughter came up with the camera idea, for long distance caregiving it is ideal, whether the elder has cognitive problems or not, the peace of mind for the family is PRICELESS.

I also, now have someone coming in on a daily basis for a hour to check on her, not that it is necessary in her situation, but, in part to appease the neighbors. These caregivers basically do nothing in her home, they sit for an hour and visit with her.

So, it is working, til the next thing happens, and we will figure out what is needed and get it done, just as everyone does, you just keep going.

Nice to hear from you Mae, best to you.

When we want to look out for a loved ones best interest we do what we can .Where there is a will there is a way.We can have some peace of mind when we live long distance and can keep an eye on a loved ones.Cameras are used so often.
Anything that gives positive results, I am all for it.We leave no stones unturned.

Hi Anna S,

I am sorry I didn't reply sooner, I had sort of lost track of this board. I do think it would work to watch from work, if your employer was willing to allow it. I can and do watch my mother on camera as I do things on my computer, in fact I am watching her right now and she is getting a snack out of her refrigerator I do have an outside camera and I can see who comes to my moms door. There is also voice, so I could hear if my mom needed help, if she was in a room where there is no camera, the private areas of her house, such as the bathroom. You can put up more than one camera, I currently am using four of them for her. It has been the best thing I have ever done in the many things I have implemented to assure my mothers well-being and safety in order for her to be in her home as this is her wish. I wholeheartedly think you will be glad you decided cameras as a caregiving aid.

Hi JAH:

Cameras would be a great asset for me. I am the sole caregiver to my mom. She’s OK on her own for about half a day. In the near future, I will probably have to return to an office. (I currently work out of the house) More than likely, we will move to be close to my office so I will be only a few minutes away. If my employer agreed, could I check on my mom via web cam from work? I would also want to know if anyone was coming to the front door. I plan installing an intercom system, so she doesn’t have to open door but when not there I would want to keep watch. Please note, I also plan to utilize day care and a paid companion but this can be expensive if done every day for eight hours. Any suggestions would be appreciated.

I hope we all can say things and not mis-understand, I wanted to come back to this board and show everyone that I am a person with feelings and emotions just like everyone else. I just chose a different way to caregive, one that allows my mother the freedom and life she wants to live. I have never wanted to have others do as I was doing, just wanted to give others a message that there are many ways to caregive and if one thing isn't working there are other things you can do. I respect everyones right to do what they can the best they can.

Hi there,fat, dumb and happy, I apprediate your post, I don't think you or anyone on this board is the B word, I feel and I really don't know, that there was someone pushing buttons and we all got caught up in it. I don't hold grudges, we all have our hands full enough without turning on each other. I think caregivers are in many ways very special people and sometimes things just get testy. So lets just say enough said and we can all be friends. I think we all have a lot to offer to those who are posting now and those who will come later. Peace to all of us.

hey jah, welcome back! i have been wondering how the kodak house was going! good to hear it is working good. if daisy's family ok's it and pays, i am going to install them around my house. maybe i'll even get to catch my son and his friends on film! who do you contact for a system like this. let me be the first to say i was wrong and apologize for being a b*tch. welcome, and thanks for the wisdom and new tricks for caregivers!

Yes I am a big proponent of cameras in the home I had them for almost a year while my MIL was still here JAH they are a great tool to use I said that from the beginning.
My problem here was that my house is so big (3 levels ) Dang those stairs! so by the time I could get to my MIL the deed or deeds were already done, the camera afforded me a peek if you will into what she was doing to get to her before she did any damage...now the only time I couldnt stop her of course was in the bathroom BLAST IT lol
Ok not so funny but now everyone knows why I emptied out the bathroom of everything and put locks on all the doors
Hallway and bathroom was unmonitored so she used to get into my bathroom to find her picking tool of choice until I busted her and of course 200 bucks later for new doorknobs on all the doors I didnt have to worry so much on what she could get into....unless of course you count her climbing up on the shelving in the hallway to try and see if there was something she could use up on the higher shelves
Man Im tellin ya that woman was gonna give me heart failure