Everyone is giving me all these new "miracle' treatments. Family memebers who wouldn't even acknowledge there was a problem with my DH are now offering websites with the miracle cure. The new one is from a family member out of state on electric shock treatment. Really! My DH sees specailist at Emory and has a neurologist local and a geriatric doctor who specializes in AD. I am getting the best help I can for my DH. I would love for there to be a miracle cure. What I need is for them to quit telling him about all these treatments and discuss things with me first. I could use help around the house and a break from the house every once in awhile. I am sorry I am really just mad that people do not understand. My husband does not remember most things, but these things they tell him he will. I do not have a good relationship with his family. They were in denial for the first 6 years of this. Now I wish they still were. They have gone behind my back with the POA and had it revolked and I have had to have it reinstated. We have been married for 28 years. When did I turn into the bad guy. Again sorry, just need to blow off steam. They did offer to take him for a few days out of town. But I do not really trust them from things in the past, but I need a break. So I let him go and worry the whole time he is gone on what they are up to. When I had him evaluated on driving they really caused ne a lot of problems. He had a wreck after this. He is not driving now. I worried for 2 years for a law suit to come from it. I am really tired. Thanks for listening.
most of us find the people in our lives have no clue what our daily routines consist of. as far as the POA it would be very difficult for a person to gain legal authority thru a revoked poa once a dementia diagnosis has been documented. but yes they can do it but doesnt mean its legal. under usual circumstances i would think it pretty easy to prove that a change had occured under 'undo influence' and or duress of the afflicted person to get them to change it. the courts are pretty saavy and can see thru alot of the bs involved in doing such things BUT if they try to do something yo may not be aware of it. so be cautious.they can get you into alot of legal issues as well as financials.. you said you needed the respite and allowed them to take your spouse out of town. i would be leary of where they take him or what they may try to have him sign. you never know what some people will do. if at all possible quiz your spouse when he gets home to see if he can offer any info just the same. i hope for their sake they dont allow him to drive. it sounds like you have your hands full and need a rest. its what we do here best is listening , vent away! divvi
Ah, yes, the miracle cures. We have a relative who is always telling us about how exercise, mind games, socialization, and whatever else is touted in the media, will take away Sid's Alzheimer's Disease. We will never change anyone's mind no matter what we say or do, so I found that it is easier to nod than argue.
I think that many of us have gone through this. It is because, as Joan said, the media are constantly announcing that there's a new cure, prevention, etc. I truly believe that these family members/friends think they're doing us a service by alerting us to the cure du jour--giving hope in a hopeless situation. But it does get old after a while. Funny how the coconut oil is getting a lot of play now--those of us who have been here a while knew about it years ago.
What I hate most about family and some friends is....when they see him or when they are around him for less then an hour...their parting comment is alway ....."Well, he didn't seem too bad to me are you sure he is as bad as you think?".....I want to spit or hit or both. I usually just say..."well, there are good days and bad days you are lucky you got to see him on one of his good days".
But, I would never, never let my dh go to stay with anyone at anytime unless it was absolutely necessary. I don't trust anyone any more after what happened with his son.
Please let's not blame the media! It's more likely people are misinterpreting what was written.
DH's daughter sees something about MS - new drugs that can reverse some effects - and immediately emails him and tells him there's been a breakthrough. Of course it's nothing of the sort - and if she bothered to read the articles, she'd see that it's for a different type of MS, not what he has.
I get angry at her attitude, because rather than accept her father as he is, she is always trying to cure him. There is no cure. Love him as he is!!! My SIL is the same way. Used to sign birthday cards to him, "Maybe this will be the year of the miracle cure!" I find that sentiment so hollow.
I don't understand these family members trying to take over ... they have no standing. I would never let DH go off with his family - not that they bother with him, but if they did ... A good attorney is worth her/his weight in gold. Getting all the i's dotted and the t's crossed.
For me, setting up a trust took a lot of worries off my mind.
Before we had our diagnosis (even though we should have had it by then,) Jeff spent some time with his hippie brother in Colorado, who had him seeing all kinds of alternative practitioners. I think he came home on testosterone supplements, piles of fish oil, and a kit to test his urine for heavy metals. Well, brother meant well.
I find it really interesting that many of you would not consider sending your mate off with many family members. Honestly, it made me feel a lot better! For quite a while I believed when I needed a break, his sisters in Maui would take him for a few weeks, 1. because they love him...and as many native peoples do they take care of their own, and 2. because I took care of their AD Mom , very advanced case, every weekend for a year.
(I know I have mentioned before how they did not thank me ever, and at her funeral thanked all the day care people etc. , but not a word about me. This I believe was deliberate and callous)
Anyway after so many mean incidents this past year, I had washed my hands of them anyway. NOW I AM GLAD!!!
and emily, loved you little story, that sounds like MOST the people I know, and likely, if I was them, I would have tried those things too, lol..
CoCo: One of the main reasons I wouldn't send my dh to stay with anyone is because in the beginning of this AD trip when he first started acting strange he said to many of our friends and relatives how mean I was and how this and that I was...Anyone with an ounce of sense knows you don't go to your spouses friends and relatives and bad mouth your spouse. Most of them told me right away and they couldn't understand why he was saying these things about me. (especially when I am such a nice, sweet person..hehee). It really bothered me at first and when I asked him about it, he denied ever saying the things they said he told them.
Well...I know he did...but, I soon learned that he was parnoid about alot of things and shortly thereafter he was dx. with alzheimer. But, some of my friends and especially my relatives don't totally understand his condition and who knows what they might ask him and who knows what he might tell them...and more importantly what they would believe. I just don't need the stress of sending him some place with the potential of who knows what happening.
??? How in the world can anyone go behind someone's back and change a POA? This kind of trick scares hell out of me...we all read about the step kid thing..some of us have really good step kids but others are not so lucky so what should we all watch for with difficult family members? Now back to the rest of the article and responses...I am shocked..
it happens. unscrupulous persons have a demented person sign over poa to them, and if they are lucky it wont be questioned. until someone finds out. usually bank accts or assets go missing or deeds to property are changed, savings, stocks. etc. if they take them out of the state where they live in could be even easier i would think. if they are well enough to sign on their own, sometimes its not even an issue to even an atty looking to charge. like i said unscrupulous. heads up! a poa CAN be changed or revoked at any time, by the person giving it, BUT only if they are mentally capacitated and know what they are signing. this is the protection - if they arent, then usually i would think a court wouldnt have a problem restoring the original poa that WAS done when the person was capacitated. it could be expensive and alot of legal issues but some find themselves in this mess with relatives who want to assume the care and try to get the power. the point is yes they can do it but then you have to battle them and prove it was done under without authority and prove the person wasnt capable or mentally able to sign it legally. a mess to try to clear up. at least this is how i perceive it could happen. doesnt mean its legal but they can try. again, i am no legal expert here but this is how i see it happening.
divvi...You are so right. My dh's son had been in touch with him and checking on him before he tried the trick to take him back to Ill. It just really threw me off my rocker. I think maybe he had been talking to someone that put ideas in his head. Like get your dad back to Illinois and get POA and get what you can before it is too late. People don't realize what a big mess this can be when we least expect it and from those that we least expect to be so inclined to want to do things that are not right.
My dh was retired from the Fed. Gov. and when he was unable to talk to them about changing something and he told them they could talk to me...they wouldn't talk to me until this 3 page form they sent to us was filled out. Part of the form wanted statements from his son concerning his condition. Well, after the big problem about taking him back to Illinois his son refused to provide any statement on the form....what a jerk he became and still is. I don't trust anyone now. I feel really good about how our attorney has protected us and I can't say enough about others getting this done and doing it NOW.
Not for the first time in this journey I am grateful Lynn has no real assets that I have to worry about the "evil step family" trying to get. Of course, they are not evil, but money does do strange things to seemingly nice people!!
I would have dearly loved for one of Lynn's kids or sisters to have taken him for a couple of hours, a week would have been a dream! The house is in my name only, he has no money, so there is no fear that there would be an ulterior motive. Of course, they never took him either.
Jackie, we call these people in our lives “Seagulls” because they fly in and crap all over everything and then they fly away. I am sure they are well meaning, and when first diagnosed I can even understand it. How many of us went researching for anything and everything that could possibly help. I know I did…….But, there comes a point when one realizes that no, there is no miracle cure. But still, I keep on researching….
Personally I DO blame the media for some of this “cure hype” and misleading the public about the truth of Alzheimer’s and dementia.
Even the FDA chastised Aricept for their misleading ads. http://www.eldercareteam.com/public/735.cfm?sd=34
JudithKB, my guy has said that and it was more in the beginning phases, that I was mean.
Just 2 weeks ago when one of his sisters "passed by' from Maui, for an hour, I heard her asking him if I was mean to him.
Something deep must had come up in him, he told her I was not mean to him and took really good care of him.
THEY DO NOT GET, THAT AD PATIENTS DON'T SAY WHAT THEY MEAN!!!! BUT THEY STILL ASK!!!??
When she called one time, she told me well, he does not even talk to me on the phone very long. HELLO!!! HE CANNOT TALK!!
They will paddle on that old river in Egypt forever, and he will not be going there. (He used to tell me, BEFORE he got sick, that his sisters were always mean to him)
back for an edit:-
This is the truth, I am very RARELY mean to him, he is helpless, and the few times I get short with him it is too painful for ME> to see tears in his eyes. Yesterday when I told him, no one wants to visit me anymore, he said "It is because you are taking care of me"
He is a doll, and in so many ways likely at this point, one of the best dementia cases. MY pain, is the wear and tear, the spiritual loss of being "normal" , the constant. How I want to make the rest of his days good, but sometimes I am scared of how to handle it. Like all of you, I am so tired and worn, and sad.
Blah on poo heads, the ones that say they want to help, but only if you listen to THEM.
This miracle treatment thread reminds me the most of my parents.
To be honest, I have to say that the more I understand my own limitations and impatience, the more I understand theirs.
This is just my story. Parents have never really liked H and they have their reasons. They CANNOT accept that he has a brain condition.
So, I have, in my prayers, tried to improve my own acceptance. I pray that if God needs me to accept H, it is also necessary that I employ my faith to accept my parents.
My parents have a filter, just as I do. It is like I walk into a room, I, you, anybody: someone will process who we are and how we present and some will like us and some never will.
My father survived brain cancer. He did so, in part, because he had percentages: with surgery and without. Where he went for surgery and for follow up treatment- and still goes there- Vanderbilt- he and Mother heard a lot about a coach? a woman? who is "going to beat this thing"?
I live far from there and really don't know why this matters to them and will not ask them. But it is a part of their filter. Regarding H, it is affected by not liking him, so they have that bias that he does not have the "spirit" to fight and they resent that, as far as I can interpret it, on my behalf.
I have been very angry with them and I have expressed that here. I am just trying to get to another place that I hope will be better for me.
thank you all for responding. When I read your post I see that all of us have the same issues. I am also a part of a blended family. My DH was married before. He had 2 children. They have not interfered with his care. They actually have been good about thanking me for taking care of him. It is his mother and sisters and others in his family. When I read Coco's comment "Hello, he cannot talk", that hit home. His mom will say his son wants him to call him so bad he really wants to talk to his dad. I think well he is a grown man and has a cell phone and knows how to use it. My husband did not call them before his dx why would he now. He doesn't even know how to use his phone let alone remember to call someone. She is trying to lay a guilt trip on me. I have more things on my mind than reminding him to call his kids. We have 2 children together and he doesn't even call them.
I know that I will have to deal with legal issues again, but I found out also that Social Security does not recognize a POA. You have to write a letter, or your Dh does saying that they can discuss issues with you, unless you are a guardian or conservator. Some Credit Unions want you to fill out their POA for you to handle that persons finances also. It is a really tricky issue. I check all our accounts daily and check on the deed to the house at least weekly (which in my state and county I can do on line). All our accounts I have passworded under my Dh's profile so no one can go change anything on line. Not that he would remember the passwords if he had set them up. But at least they cannot go in and set them up. It is awful that dealing with this dx that we have to deal with all this other stress. Sometimes I feel paranoid. My daughter told me mom there is nothing you can do sitting around worrying if they are up to something, just wait and if they do something then get a really good attorney. She is right. I will give them the biggest fight of their life if they do anything else. They don't want to take care of him, they just want to tell me how to.
I know that when it comes down to anything that I have my family that I can count on. They have been a big help and done a lot of listening. Coming here is such a comfort to. Plus I learn what also to look for in people that I cannot trust. I really need a break so I will let him go with them and question him when he gets back. I need to do a lot around the house while he is gone. It is hard when he wants to help, because it causes me to have 2 times the work. I know he means well when he helps. It is sad. We have been married for 28 years but I feel as if I am no longer married. That just made me think, I guess they haven't really liked or trusted me for 28 years. Their true feelings must have been there all along and I just overlooked how they acted all these years. That explains alot of past events with them. Its funny but not funny.
jackiem29--Difficult family issues only make caring for a spouse with dementia even harder. In order to give you more peace of mind, perhaps you should speak to an elderlaw attorney about taking your husband's name off the deed to the house now, vs waiting until he passes. Ditto on the accounts that you check daily. If Medicaid is ever going to enter the picture, you will have to do some of these things anyway, so doing it now would give you the added advantage of less to worry about. You have your hands full taking care of your LO, it would be great if you could reduce the worries re your husband's family.
According to ourattorney...having your property in your name alone means very little because Ca. is a community property state. I did have some property in my name alone and titled "not part of community property"...and our attorney put that in a special trust and I cannot touch the rental money I get off the property or it will become part of community property. There was so many different things I didn't know what, how, etc. to handle that made it so much easier by having this Elder Attorney do all of the legal stuff for us.....one less worry for me. Each state is different.
Divvi is right. In Feb/08, I had a phone call from the bank saying that my cheques were bouncing. Since I had cashed in some bonds and already had a healthy balance in the accounts to cover the very expensive repair of 20 feet of stone wall, 6 feet high that had come down in a heavy snow storm and was blocking the city sidewalk and into the street, I was in shock. I had to borrow about $31,000.00 to pay off the bank. His three children had taken him from his room at the Care Facility, driven him to the bank, had him close his accounts and open a new one. Then they drove him down to Gastown,which is along the waterfront, took him into a lawyer and said, "Daddy is having problems in his marriage. and he wants us to have POA." My husband was 88 years old at that time; the lawyer had never seen him before, was not told that he had Alzheimer's, and the kids got the POA. Then they typed up a document and had my husband sign it saying that he revoked my POA that I had had since his diagnosis in 2007. It took a long time and a lot of money with the best lawyer in Vancouver to unravel that mess, and here it is 4 years later, and I'm still cleaning up the remains of the mess. When it comes to money, people will do surprising things. Divvi was so much help to me at that difficult time. One of the things that she said that pretty much summed it up: "They are low-life."
Oh 75 what Erics kids have put you thru,I sincerely hope its all behind you at this point.I don't know how some people can look themselves in the mirror in the morning,your a strong woman,you survived an did the very best you could,they should be ashamed and I'm proud to know you.You set a great example for the folks just starting this journey,an I wish you a belated Happy Birthday
Hb will see the ads on TV and ask me about them. he thinks his word searches are helping and they may be for now. Eventually the disease will kill brain cells faster than he can create new ones. When people tell me about something I just tell them I belong to a group that is up on all the latest news and I read alot. There is nothing out there yet that will stop or cure this disease. Some will allow them to keep cognitive functioning longer but the disease rages on underneath. Diet, exercise, mind games, - all have not proven to help. If they did Ronald Reagan, Charleton Heston, Glen Campbell, and anyone else well known I can think of, would not have AD.
Charlotte - you're right on. Who has a job with more planning and using of brain power than a coach. So if that would prevent Alzheimer's then coach Pat Summit would have no worries. I noticed in the NCAA games this year that her assistant was the coach on the floor at time outs, etc and also doing the interviews. Coach Summit is physically fit but still this disease will eventually claim her just as it will our loved ones.