My husband has this condition. The ALZ has struck the part of his brain that gives him insight. Therefore he cannot see he has ALZ. It is not denial, he simply cannot understand he has the disease. This makes it very difficult to get legal paperwork done. He can't understand why his Trust needs to be updated, POA, Health Care papers, etc. I need to get these things done before he isn't considered legally competent to sign them. Reasoning is not an option, the neurologist can't help, nor the social worker. I am so frustrated I could scream. Has anyone else dealt with this condition? My husband is ~stage 4. I have Googled and read all I can read, but have found no suggestions as how to deal with it.
My husband also has anosognosia. I don't know if there is an answer out there. The suggestions I have are probably illegal, so I'm sure Joan would come along & delete my post. How can you possibly explain something to someone when 1.) their reasoning skills are gone, 2.) they have no idea anything is wrong with them. Beats me.
Hope someone can come up with some answers. I will be interested in seeing.
Could you contact a lawyer to have the docs drawn up then tell him it's some sort of "routine maintenance" on the documents you already have? Maybe he already isn't legally competent to sign them is one possibility, but no one wants to jump through the hoops necessary to have that declaration made if it isn't absolutely necessary. I'm wondering if the estate attorney would have any qualms about having your husband sign if he/she were aware that both parties didn't entirely grasp what they were signing.
emily, I am told he is still competent to sign because he can read and comprehend what the paper is saying. We need to make major changes to make certain his health care is addressed. When he did his trust he didn't have anyway for health care to be paid for. That's my problem, he doesn't see any need for the provision, because he doesn't understand he has the disease. Val, I sometimes just shake my head. It just adds another layer of problems in an already complex labyrinth.
ASY, I deal with a similar situation ("knows" he has Alzheimer's but thinks it is verrrry early). Due to some risky behaviour (potential identity theft), I went to court and got conservatorship/guardianship and I am creating a trust. Not the best solution I know, but it may be the necessary route. PatB
Just one more thing to drive CG's nuts, but it does exist. There's a book: "I'm not Sick, I don't Need Help." It is supposed to help you get thru to these people but mostly I think it applies to schizophrenia and non-AD mental conditions. If you type into Search: I'm Not Sick, I don't Need Help Video, the first hit should be the author's video. I don't know if it can help w/AD, but it's an interesting lecture. I think knowing about agnosignosia can help us better understand why some seem to be in denial, they honestly don't see anything wrong. But like w/everything else, knowing something does not always make it easier to handle. As ASY says, just another layer of problems. Wish I had answers.
Bettyhere, Most of the reading I have done on this condition addresses schizophrenia and bipolar. Very few mention AD except in passing that it does occur. One would think with our aging population they might check into it a bit further.
ASY, I can only tell you about how it worked for me, and in my state. The court notifies any interested party. For me, this was our kids, DH has no other immediate family. These people have the opportunity to object to either whether it is necessary or whether you are the appropriate person. They all supported me and my decision and no one objected. They did also appoint an attorney to represent my husband (actually to represent his best interests, not just what he wanted), and a social worker to interview the whole family. Both reported to the court, along with my attorney as to what they felt the court should know.
PatB, that won't work here. We have too many "special interest groups" in his family. This is a second marriage. They are so worried his money won't go to their accounts. It is really difficult when there is no emotional support from his kids. They pretend it doesn't exist.
ASY--When I felt that I would probably be faced with placing DW in long term care at some point, not necessarily at this time but at some point down the road, I searched for an Elderlaw Attorney that I was comfortable with, Medicaid Law, and such. After making an appointment with her she then sent me a labyrinth of financial papers to fill out. It took me about a week to get everything together but when I had it I just made an appointment with her for myself and DW. I then told DW that we had to see an attorney to get our legal stuff together and get all our ducks in a row. I told her that our wills, medical stuff, powers of attorney, all the legal stuff in case something happened to either one of us. She made a general power of attorney for me naming DW and our Daughter as alternate. She made out a Durable power of attorney for DW naming me and again our daughter as alternate. She made out wills for both of us and advance directives for health care for both of us. She also had the deed to our house changed from both of our names to just my name. She did all this while DW was just thinking that we were getting all our ducks in a row. When DW was having a little trouble signing some of the papers the attorney just told her that it didn't make any difference what her signature looked like as there was a witness to the signing and everything was in order. It went very smooth. If and when I have to have her placed it will just be a matter of making an appointment with medicaid, getting assessed, finding out my spend down and taking care of that. Duane
ASY, I can only imagine how difficult that must be. Basically, the purpose of the court proceedings was to show he was no longer capable of managing "person or property" and that I was the best person to "take over". While those situations may also be true for you, it's another thing to prove it to a judge when others have a vested interest in either the person or his property. In fact, my attorney warned me that my DH could hire an attorney to represent what he wants (rather than the court appointed one who represents what is in his best interests) and that could get expensive and drawn out. So, even without other family, it could get tough. Fortunately (or unfortunately) DH didn't realize the difference and/or didn't have a problem with my plans, even though he thought it was unnecessary.
Duane, Yes we have contacted an Elder Atty. And he sent the paperwork, we are in chgo for summer, but live in fl in winter. My husband is now refusing to sign paperwork and won't proceed with POA, or change trust to deal with financial matters for his health care in the future. He is back on the I don't have any health problem track. So frustrating, he is ~stage 4. It may come down to he refuses and on down the road, I have to go to court. Then the stepchildren will come into play I'm sure. Like just dealing with the disease isn't enough grief for the spouses!
OK, so telling your husband that the papers need to be updated for HIS benefit or yours probably won't work, but would the attorney go along with it if you told your husband that the laws have just been changed, and the attorney said the docs had to be revised to go along with the new laws?
ASY, This is one nasty disease. In my case, DH got sucked into an internet scam, with a romance angle. Gave away all personal info. Fortunately, I had already started to review credit cards, etc. and he couldn't give any money away. He even had a suitcase packed so he could run away and marry his new love. Saw an attorney, and with copies of emails, got an emergency, temporary court appointment in just a few days.
Please note, as others have found, I did not know we were that far along at that time. What a shock. I forgot, the paperwork also included a doctor's report supporting the court proceedings. The court stuff is different than those short memory tests fortunately. It is really a legal establishment that he should have someone else making decisions. They work to make sure that the person is well represented and given as many rights as possible, and still consulted on decisions, although I get the final vote. And, while doctors may disagree with us as to where they are in the disease, they know that eventually we will have to make the decisions.
I think it is best to consider the court determination of incompetency as a proactive move, rather than a definitive point in the disease. It will come at different times for all of us, and with some of the other paperwork you have been working on, not necessary for everyone.
Sunshyne, Attorneys are very careful of how they present things. I don't think I could convince this atty to say laws have been changed. He told me he deals with this type of problem a lot. (He is in FL what a surprise). I guess I am just going to have to hope my husband changes his mind. Or I guess it will end up in the courts. I always have the stepchildren in the wings waiting to swoop in and challenge things too. Sometimes I just feel like walking away and let them deal with all of his problems. Some months ago he threatened me with divorce, wish I had taken him up on it, that threat has been taken off the table as he has been dx with prostrate cancer. That scared the you know what out of him and I am now his best friend.
I thank you all for your suggestions, it really feels good to have a place to bounce things off of other people and get new perspectives on a given problem. We all have so many different things we are dealing with it is a comfort to have someone who understands and listens. This disease is the worst. To take a person away so completely.
We tried updating our wills a couple years ago with a new Attorney. He had the wills prepared but before he called in a wittness and had us sign he asked my husband if he understood the will. My husband said no. I tried to explain to husband we weren't changing anything, that the same trusts were set up as before, we were just updating and making a change in Administrator from one child who had moved away to a child living locally. The attorney said there was no way we could continue and that no more difference than there was in what we were doing we would just have to stay with the old will.
When we had this done 2 years ago, the elder care lawyer had a session with my DH to make sure he understood the questions she was asking etc before she would go farther..he passed her tests. Now it would be much more difficult but he could still express his feelings..just would be iffyier.
When we had this done a year and a half ago I didn't say anything to the lawyer and just prayed DH would act reasonable. He did and it went through without a hitch. Just told him where to sign and he did it.
I went to see a lawyer right after diagnosis, but hubs wouldn't go. I have all of my things taken care of, but he wouldn't hear of it. I even showed him the papers, but no go. As I stated in another discussion, he has always been the master of denial, but now I don't think he really knows what's going on. I haven't brought the subject up again, trying to avoid a confrontation. The more I read, the more I realize this Anosognosia is another problem with him - I thought in the beginning he was just being stubborn (which he is) or in denial, but now I realize he really can't see that there is any problem. By the way, can someone sound out this word for me - I can't figure the pronunciation!!!
ttt for new members. I was reading some old posts and found this link - a very useful article. Ithink it describes some of our LO's to a T,(certainly my DH has signs of anosognosia) and seems relevant to some recent threads on behavior, awareness and denial.
Wow, I was so taken aback to see what I wrote almost 5 years ago. That was such a frustrating and frightening time for me. At each turn there was something new to understand or cope with. I am still so grateful for this site. I wonder how I would have survived mentally without the help from these posts. Thanks again to this wonderful group.
A quick update. My now ex-H cat sits for me when I go to New York to visit my son, his wife, and my new grandson born October 2012. He still helps with some handyman jobs ocassionally around my house. He will go with me (I'll drive) for my colonoscopy in July. We email back & forth. I remain unattached, so no happy love story to share. I guess I have bonded with my cat. Ha ha, as Divvi would say.
good to hear you are doing well kitty! and congrats on that new grandbaby. they make our lives much better and gives us the light we so need. bonding with your cat sounds ok by me! divvi
I had to go thru three elder lawyers until I found one that we could work with.So, don't give up if the first one doesnt sound like you can work with them...and yes it is expensive. I found it was important to get as much info from as many people as possible. The Alzheimer's Association has a help line and they have been valuable resource for me at times. And this website. This is a group process.
Hello Divvi! So good to see you here. Nothing much has changed for me since last year. My exH still cat sits and seems to really enjoy it and gives me reports. He is still my cat's daddy. A role he very much enjoys. We still email back and forth. Sometimes it seems he is "normal" but I know he's not.
hi kitty! so happy you are doing well and have an amiable friendship with exh. give your Katrina a hug. I have refueled the holding tanks so many times but we are still in a very long holding pattern.
Thanks all. I miss the site and the companionship it provided. There are so few familiar names now. I should stop in more often to see what everyone's up to. Divvi, Katrina sends you big purrs. ♥
Kitty was part of the 'dirty dozen' from years ago when we were all living in a collective place called hell. We nurtured each other and often cried together. Laughed, too. Most of us have moved on but we will always have a place in our hearts for each other.
My husband does not think anything is wrong with him even though two doctors point blank told him he has dementia. It is very difficult for me because I don't know how to handle it. Every once in a while I remind him he has a memory problem but he just gets mad and tells me I am crazy. This week he has a doctor's appointment and he told me that he doesn't remember where his office is. This is a doctor he has been seeing for 20 years (diabetic doctor). Of course I am going to take him but he really does not understand why I have to go.
Thankfully, we redid our wills and power of attorney about 7 years ago so that is not an issue. This really sucks.....
A referral from this diebetic dr to a qualified neurologist who deals in dementias would he my suggestion first off. Medications are necessary and one usually needs a good dr onboard at the beginning to iron all this out and have on board for any aggression or anxiety as stages progress. Its not unusual all of our spouses denied anything was wrong. Good luck-
Nancylm, you might want to have an elder law atty look at your wills and poas if you didn't have an elder law atty draw them up to make sure you're covered and can act on his behalf. We have a durable power of attorney (dpoa) which is my understanding the type of document you will need when you start making all the financial, legal and medical decisions on your spouse's behalf.