I am in a quandry. My DH does not know or understand what is wrong with him. We have discussed that he has dementia, but he doesn't seem to understand that he is not going to get better. He has not been formally diagnosed as having AD, but he has been diagnosed as having dementia. We did talk about the fact that dementia eventually ends in the person being like a person with AD a while ago, but he seems to have forgotten.
Do I tell him or do I not tell him? I don't know how much to say or what to say. Based on what the doctors say, I believe my DH is around stage 5 or 6. We will have more information, I hope, when we see a specialist on November 6th. I just am not sure what to say or do. Frankly, I still don't know how to deal with my own feelings right now. I cannot stand the thought of losing my DH. I am bouncing around like a ping pong ball that is a "super ball" - bouncing from trying to accept the fact that he is dying to believing that this just can't really be happening.
My DH acted the same way. didnt seem to grasp at all the neuros dx of Vascular dementia /and or combo with AD=in his office. when we left DH said , its 'burnout work related' and decided to retire - we never discussed it again-i see no point in driving it home as he wont believe it or isnt capable of assimilating whats going to be his future. its now on your shoulders and its a heavy burden to carry alone. we all agree on that-divvi
My husband has been diagnosed with FTD. He has been told about his diagnosis and and what it means, but he just doesn't get it . He will ask if he will be able to go back to work (he hasn't been able to work since July) and I just tell him to consider himself early retired. He seems to accept that on most days. I have not hidden anything from him about his disease he just doesn't seem to comprehend it. I now only try to explain the FTD to him if he asks and then just in the simplest of terms. If he doesn't ask I don't tell.
My DH keeps saying that he is going to get better. It's hard for me to sit quietly and not to correct him, but it's much harder to tell him the truth. The problem is that we were always so very honest with each other and it pains me to lie to him - either by actively lying or by omission. We went to church today and, for the first time in my life, I felt the urge to leave in the middle of the services. I was reminded of who I was and what I believe. I stayed until the end and left right away. I came home, called my son from the bathroom, and broke down. My husband couldn't read the word "firstfruits" even though the preacher was talking all about firstfruits. Granted, this is a long word, but it has 2 simple words in it and the preacher was using the word like every minute.
My DH does not ask questions, he doesn't repeat himself, and he doesn't talk much so it is very very difficult to know what he knows and doesn't know. Every night, when he goes to bed, my DH has to have help putting on his mask. Every night when he goes to bed, he sits on the edge of the bed and I help him put his ask on. He has started laying down on the bed before we even start putting on his mask. This is just one of many different new symptoms. It feels like he is just slipping slipping slipping away. And, then, he will do something that makes me think he is better (like remembering that we need the registration for the car or making the bed without being reminded).
I guess I am lucky, my hubby understands and reads about it, he introduced me to this site and joined in the walk when it was in Harrisburg. He worries however and fears being a burden. We both work but we are unsure how much longer he will work. He lost his job a couple of years ago, he was an engineer and could not longer perform his duties and do the traveling. He took a job just for something to do and keep him busy for however long he can work. We are both so scared but glad the aricept and namenda seem to be helping.
Discussing a diagnosis with the person who cant comprehend the linguistics of the words 'fatal', or dementia, for me, would serve no purpose.. other than to verbally share your feelings together if possible of remorse about the dx. by the time most of our spouses get thru the battery of tests and obtain a verifiable diagnosis they are in a stage that may hinder their ability already to comprehend the seriousness of the prognosis. seems Gerry is a rare case where her DH is quite aware of what lies ahead and got his dx still early enough to realize he has the disease and what it entails. being deceitful or not being truthful would mean that the other person is capable of understanding what you are not being truthful about. not so with AD, they lose that ability early on. sometimes avoiding the painful topics can be the best solution. divvi
First of all, it isn't denial that they have. It is literally a symptom of the disease that makes them unable to understand that they are sick, and sometimes they don't know anything is wrong with them.
And for Sharon, I know how hard it is to watch them lose language and skills day by day. I'm living with that too. My husband uses the same words for the mail, the garbage and the newspapers. I do a pretty good job guessing what he is asking about, but not always.
It would probably not be a good idea to continue to try to orient your husband to reality. Truly you are not lying to anyone. You are being kind. And you will be doing more of that as the disease progresses.
You no longer have the partner who you always told the truth to, and expected the truth from. You have someone who is like a little child mentally, and there are truths we don't tell children because it would be cruel to do that.
You said that "I was reminded of who I was and what I believe." Here is hoping that since you were in church you were reminded that you are a child of God who loves you. And that you believe in being a kind person. And that is is OK to be as kind to yourself as you would be to any other person who is suffering.
We don't talk about it. H told people 8 years or so ago that he had Alzheimers and he hadn't had any tests yet. Sometimes when he is having a problem with getting dressed or something and I get cross with him he will say, I can't help it I have this disease. So, I apologize and continue helping him. I think he knows about things but just don't want to talk about it and I see no need to continually remind him of a bleak future.
He can no longer do anything except personal heigene. Sleeps most ..all the time, day and night. He can still walk without a walker but not very far because of the spinal stenosis. Some days he is totally confused and then the next day seem almost normal. He has been on a roll with improvement the past 6 weeks but this weekend more confusion is returning. I think he is in early 6. When the day comes that he will let the Hospice Aide help him with his shower I am going to call them for evaluation. I think he would qualify now. He has always had a shower every evening before bed and he is not to the point of changing that habit.
Can't leave him alone very long. I have taken all the keys from the vehicles.
As to your question about finding acceptance - that was the hardest for me. I have written many blogs on my struggle with that one - to accept how AD changed our relationship; to accept AD. Please check out the previous blog section on the left side of the home page - www.thealzheimerspouse.com - I would suggest starting with the Welcome Blog, then #153, #173, #192, and #219. I am sure while you are scrolling through the topics, you will see many more that you can relate to.
My husband calls it holes in his head, and that excuses everything in his book. It's like he's in a marsh. Some days it's very flooded and he's in bad shape, other days it's almost dry and he's fine, but usually its' got wet spots and dry spots. Holes and mounds. The concept of time is, along with math, one of the first things to go. You'll find many many tales here of people not knowing what time it is, what time of day it is, even with a clock in front of them. So don't expect them to understand they won't get better, ever. Ever has no meaning for them.
Sharan, I noted the guilt you are feeling by not being honest. But what is kindest? The omission or playing along? Kindness would be best. No one but yourself will sit in judgement of you for trying to be kind. Your husband can't accept or even realize the extent of his deficiencies. I tried the honest approach, and I am really sorry I did that. It only caused conflict. My husband doesn't have AD, but he does have dementia, for which there is no treatment. Why weigh them down with reality?
What type of mask are you talking about?
I would just drop the fact that he is not going to get better. In his mind, he will. Let him have the hope, it is harmless. Forgive yourself for not being totally honest considering the circumstances, and do what is best for him...let him be.
The day that the neurologist diagnosed my husband, he spent a good deal of time examining him and asking questions. Finally, he asked my husband to come with him and asked me to remain in the room where I was. The doctor returned without my husband and prceeded to tell me that he had Progressive Supranuclear Palsy and dementia. I assumed my husband was in another part of the office having a test of some kind. It ended up that the doctor had taken him to the waiting room, told him to wait there, and then returned to talk to me. My husband was very very quiet on the way home and for several day afterward (he had aleady lost most of his ability to speak, but there is quiet and then there is quiet). Finally, I realized what was going on. My husband thought that the doctor had spoken to me alone to tell me that my husband was dying. I lied only by omission. I told him that he had a muscular problem that would worsen and that eventually he would have to be in a wheel chair and later probably confined to bed but that that was a long way in the future. I didn't get into anything that would happen in the end stages. I figure that by that time he won't know or care anyway. The bottom line is that I relieved his mind at the time and we havn't discussed it much since. Just general things like "your hands sure don't want to work today" "I guess I'll need to help you with your shower from now on". He seems to accept things as they are.
Sharan, after Husband was dx'd, it took me several months to even work up the courage to sign on - and stay on - to the AD site. I was lost and didn't know what or how I should be doing to help him. One of the first articles I read was related to telling the LO that they had AD. I remember it was written by a doctor so in my mind, I chalked it up to being a reasonable resource. The gist of the article said that if the LO doesn't actively take a part of the diagnosis and ask questions, then it was better to let it go. Although they may not remember the conversation, per se, they would likely remember the sense of panic or anxiety they felt at that time. Later it could come down to having those emotions triggered by simply hearing the words again.
So I never pushed that conversation. In the end, I think maybe it's better for him that way. I'd hate to see him having those same feelings every time one of those stupid commercials comes on tv. Like your husband, mine thinks he has a "memory problem". He's never indicated that it could be anything more, nor that it would eventually take him from me. Maybe that's the good news. The bad news is that we have NEVER had the opportunity to mourn this disease together. We have never cried and held each other. Never been sad about losing our future dreams. If he hadn't pulled away from me before then, this really did it. After so many years of facing everything together, he's not 'around' for the biggest crisis we'll ever have to face. It's unbearably lonely, but in a million years, I'd never put this pain on him just to ease mine. Doesn't make me a saint, but there'd be no point and it wouldn't make me feel any better.
In an aside, he knows that he goes to the doctor for his memory problems because he can't remember things. He actually will joke that he's "certifiable" because he has a note from the doctor. True gallows humor... but it does help friends to relax around him.
briegull, my husband will tell anyone who will listen to him that his brain is shrinking and that is why he can't remember things. He really doesn't understand what is going on. I have to say that I do appreciate when we go to his neurologist and he speaks directly to my husband even thought he really doesn't get what he is saying. My husband has developed the habit of saying "okay" or "I know" when anyone says anything to him even though I know he doesn't understand what is being said to him.
We use the word 'dementia' but not Alz. He's been told several times he has dementia. Asks what that is and I tell him "it's memory loss." He denies that he has any memory loss. He's 82 and says he has a lot to remember after 82 years and is bound to forget something once in a while.
A few weeks ago he was in his PCP's office and the dr said something about his dememtia. When we got home,he wasa very angry and sais he didn't know he was crazy. I told him he wasn't crazy. Then he really surprised me by saying" Well, isn't a demented person, a crazy person?"
I tried to explain that he wasn't demented. That he has a memory problem but before I got through with the explanation, he'd forgotten all about the start of the conversation.
I don't see any kindness in forcing him to admit he has AD. What would be the point? He's a very happy man and I'm happy (?) with his disposition. It doesn't matter to me.
I, too, don't want to burden him. He started the discussion (he may have heard me crying on the telephone with my son, but I hope not). It's just that today he logged onto the computer and found a website with AD so it made it harder to dismiss. He asked if I thought his dementia (he knows vaguely that he has dementia) will become AD. I told him that AD is a type of dementia, but they don't know what kind of dementia he has. He wanted to know if it looks like it is turning into AD. I told him there was no way anyone could know that. He seemed satisfied with the response. I then asked him what he understood dementia to be. He said memory loss and having things mixed up in his mind. I agreed with him, but then emphasized how he still knows all of the important things - God, us, our children, all of our loved ones, and all the things that he needs to know. That seemed to help. I asked him if he felt he was getting better, worse, or was staying the same. He said he feels like he is staying the same, and I told him that is good. I also reminded him not to borrow tomorrow's problems. He seems to remember that bit of wisdom from God.
Kitty, the mask is for his Central Sleep Apnea. He has a VPAP, which is an external respirator, because his brain is not reading the signals about CO2 correctly and thinks he does not need to breathe - about 30 times an hour. That, alone, is scary.
I may just have to go with the all out lie, but I am concerned that he might see through it. I am just taking it from day to day.
As or church, I am a believer and have strong faith that God is working in our lives and for our good (even though it does not look good right now, I know God has a plan). It's just that the people had that wonderful bouancy, the enthusiasm that I remember so well. It will return, I believe.
May God hold you in the palm of His hand and give you rest and peace!!!
I had no choice about telling my husband -- the neuro announced the diagnosis, quite baldly, to both of us. As in, "I don't see what the question is -- it's as plain as the nose on your face he has dementia." Later, when my husband responded so well to the namenda, the neuro started worrying that she might have been wrong and recommended that we get a second opinion from the university AD research center. He's enrolled in their longitudinal study, he was in a clinical trial for two years (tested every 2-3 months), and he knows I'm looking into enrolling him in another trial. He's fully aware that I come to this site every day, he asks how y'all are doing. I use the word "Alzheimer's" in front of him probably every day. I've been looking into nonpharmaceutical interventions (cognitive training therapies, that sort of thing) and have asked him if he'll be my guinea pig when I find something I want to try ... he says sure.
He's confident that he's fine.
One evening we were having dinner out, and one of the other patrons was in a wheelchair. He watched the person for a while, and then said to me, in all seriousness, "I'm so very lucky to still have my health." And then went back to eating his green beans with his fingers.
He thinks the diagnosis was wrong, and even if it was right, that he won't ever develop any noticeable symptoms. He saw some of what AD did to my mother, and he listened to my father mourning her for two years. He apparently did a little web-surfing when first diagnosed, and he knows what AD can do, but he does not believe it will happen to him. One thing that apparently "stuck" was that most AD patients don't ever get to the end stages because they're old to begin with, and therefore very likely to die of something else first. He believes that will be true for him. He will, on rare occasions, ask me to give him examples of his behavior that make me think he's sick. I stick with vague generalities, tell him a few, very innocuous examples of something he forgot. He simply seems curious, a little puzzled about why the fuss. I see no reason to upset or embarrass him. If the "A" word upset him, I wouldn't be using it. If my coming here upset him, I could very easily tell him I'm doing something else -- he won't get near my computer.
I do NOT talk about what might happen to him in the future. I see no point. My job is to keep him happy and safe.
When he needs help with something, I just do it, very matter-of-fact. When he makes excuses for not being able to do something correctly (and he's aware of it!), I agree with him. If he wants to think he won't ever "get worse", then that's fine with me, and I'll help him continue to believe that.
Bottom line, Sharan, it depends on the patient. Some are terrified of AD, and it's not a good idea to tell them. Some are aware of their problems, and actually are relieved to find out what is causing them. Some have developed anosognosia, and they don't realize they have problems and cannot understand the potential ramifications of having the disease ... so it makes little difference if you tell them. You simply have to feel your way as to how best to deal with your husband.
I suspect your husband falls in the last category. If you aren't familiar with anosognosia, there's a good explanation at:
The degree to which a patient has insight into his problems depends on where the damage is being done to the brain. It also depends on what is causing the dementia -- FTD patients tend to have much more insight during the earlier stages than AD patients, for example.
Sharan, welcome! Sunshyne and the others gave you great advice.
This is our story:
Once the neurologist confirmed that my husband had Alzheimer's (after the PET scan), she told both of us together, and asked my husband if he had any questions. He said "no." We got in the car and I drove us home. While on the way home I said "This is the pits" and he said "Yes." I asked him if he understood what Alzheimer's was and he said yes; I asked him if he wanted to discuss it and he said "no." When we got home from the neurologist, he wrote e-mails to our closest friends and our children and told them himself that he had Alzheimer's. (He spelled it wrong, but they got the message!)
Nowadays, he forgets that he even has Alzheimer's.
Your husband obviously suspects that he has AD, and it may be time to have the MRI and PET scan to confirm AD. Your husband seems still pretty much aware, and if he does accept the doctor's diagnosis, you could discuss making certain all the legal aspects are tied up together (instead of having to do it alone and just saying "sign here" in front of a Notary Public or attorney). We already had our legal papers in place for each of us, so we didn't have to do anything further in that area. But I wouldn't burden him with discussing Ad, even now. I think you handled the conversation very well!
Thank you all for your thoughts and suggestions. I do have a POA and Advance Directive with Medical POA. We don't have many assets, just our house, contents, and 2 cars. We spent most of our income paying for our kids to finish college and for their weddings. We were planning to start saving more now. =(
Today, he is having a confused day. I tried a mini-mental and, to my surprise, he did better today than a couple weeks ago - even though he is actually more confused and out of it. The test really isn't very effective. I had hoped it would help me track my DH. Oh well...one thing off the list.
It makes me nervous, but my work is slow right now. My pay is constant, but it is wierd not to get many e-mails or requests. However, it is also very much a blessing because I am able to spend more time with my DH. God is in control. =)
"The bad news is that we have never had the opportunity to mourn this disease together."
This really gave me pause, and I've been contemplating it...
In my experience -- although maybe Fran will say otherwise -- facing a terminal illness "together" isn't all it's cracked up to be.
When my first husband was diagnosed with pancreas adenocarcinoma, it was unquestionably a death sentence, and more likely sooner than later. Naturally, I wanted to fight it any way we could. One of the things I wanted to try was biofeedback and visualization, since some organizations were having success using those on other types of cancers. So we trucked off to a therapist.
He told us that no matter how much we might want to, we could not help each other ... I could not help my husband face dying, and my husband could not help me face living. He was right, although I didn't want to believe him, resisted the truth for a long time. There was no way I could understand what was going on in my husband's mind, try as I might, and no way for him to understand what was going on in mine. We were not facing the same, shared experience at all. My husband was not losing his hopes for the future, he was losing his life. His loss would end at that point. Mine would go on. He was afraid of physical suffering, and of the great unknown. I was afraid of the emotional suffering of helplessly watching him die, of being alone, of trying to face day after day, year after year, without the husband I loved so dearly.
We talk about losing our AD spouses long before they actually die. Actually, that is true for patients with other terminal illnesses, as well. They may still be articulate and even seem to be fully cognizant, but in reality, they draw back inside themselves, marshaling their resources for the long, hard, exhausting business of dying, turning away from here and now to prepare for where they're going. They pull away from the living long before the last breath.
Even while my husband still appeared fine to those around him -- including me -- his reality was already changing. He had no interest in the biofeedback, showed no initiative to practice the exercises. He talked a bit about different chemo and radiation treatments, but didn't put much energy into researching them, and even left it to me to decide which to choose. I couldn't understand why he wasn't willing to do anything and everything he could to fight. His body already knew there wasn't any point. Was it "acceptance"? or does Nature, perhaps, give all terminally ill patients a form of "anosognosia" when they need it?
I am profoundly grateful that my second husband is not aware of his problems and does not understand what his future might hold. I have no desire for him to cry with me. My loss is mine alone. He cannot help me bear it. And since I cannot help him face death, I am glad he doesn't realize that's what he's doing. All that I can do for him is try to make that death as gentle as possible. I am grateful that he cooperates with taking the meds I choose and participating in clinical trials even though he doesn't see the point. It is a precious gift.
Sharan, about the mini-mentals. No, you can't use them to track the disease on a week by week basis. They aren't long enough or detailed enough for that. I am sure they DO work on a quarterly or semi-annual basis, however, which is what they were intended for. It isn't that the test isn't effective, it is that it won't work in the way you want it to work.
There are also the 7 stages of dementia. They track slightly different things from the mini-mental. They also will not work on a week by week basis. But between the two of them you will get a general idea of where you and your LO is now and were they were 6 months ago.
I also log whenever something new comes up. And I got the tracking document from Big Tree Murphy. The neurologist was impressed by that. The suggestion for the tracking document was that you do it about every 6 months to track changes. That document had bunches of things on it I hadn't ever considered.
You have to understand that your husband will change permanently very slowly, but there will be up days and down days. Just because he seems confused today about something doesn't mean that he will be permanently confused about that thing, but at some point you will realize that he no longer "has" that particular ability anymore. You can go months between the first time he forgets the word for the mail, and the point where you realize he no loner can ever remember that word. And still longer before he forgets that there is something that he used to call the mail.
The MMSE was designed for diagnosis. It has very limited utility for tracking the progression of the disease. At best, one must have a series of test scores, with a single person, trained in administering the test, doing all of the testing. The overall trend of the scores in each of the major categories is evaluated to help determine progression. The total score can bounce around all over the place from test to test, for all sorts of reasons, especially if different people administer it. Also, monitoring the overall trend in scores only works during the earlier stages -- the MMSE cannot be used to differentiate between moderate and severe dementia.
I also agree with Sunshyne, i would rather not him know he has this terminal disease and know his life is ending- and yes the brunt force of suffering is mine alone-divvi
Sunshyne, I did not realize you had already lost your first husband to a disease. And now this. I am so sorry.
" I have no desire for him to cry with me. My loss is mine alone. He cannot help me bear it. And since I cannot help him face death, I am glad he doesn't realize that's what he's doing. All that I can do for him is try to make that death as gentle as possible."
I lost my last post, but here is the Case Study page from Big Tree Murphy:
http://bigtreemurphy.com/Journal.htm
What I did was copy the actual questions and paste them into a document where I could answer the questions. I gave that dated document to my husband's neurologist. When we go to his family doctor in a couple of months, I'll copy that one and answer questions on a new one and hand both to him. We won't be returning to the neurologist unless there is a real reason to do so.
It isn't the stages of dementia, but something similar and maybe easier to use. My understanding is that you choose where the patient is on each of the lines, add it up and divide by 6. And that tells you were the patient is overall.
My husband, for example, is sitting either in level 1 or level 2 on this scale. I think the Severe level is basically level 7 in the 7 stages scale.
Actually I think the 2.5 on this scale is the equivalent of a 5 to 6 on the 7 point scale. And what I'm calling a 3 on this scale is a 7 on the 7 point scale.
One of the advantages to this scale is that if you've got a LO who is healthy in some ways, and very unhealthy in others, you can see where they are in each of the 6 areas. For example, my husband is mostly in the Moderate area, with a couple of Milds and one near Severe. They don't have an area for ability to walk, and that is very close to normal but he is very week in orientation. He hasn't known what day, month or year it was (except for this year's lucky guess) for over a year now. And I literally don't know if he knows my name. He hasn't used it for so long I can't remember the last time he did that.
I think that to understand what is actually going on, you need to look at more than one scale and more than one viewpoint on the disease. The mini-mental tests which we can frankly estimate if we don't actually give them show one area. The 7 stages another. And this spreadsheet still a third. There were things on Big Tree Murphy's list I've never seen anywhere as well.
Starling, do you have a link to the extended mini-mental? I've googled with no luck over and over...I find references to it, but never the actual questions.
This string of posts reflect just how helpful it is to have ya'll here to help. Thank you all for your insight and your guidance. The mini-mental and the other scale are both helpful, but none of them capture the full picture. They really just give you something to compare with ideas as to what kinds of things to look for and compare to "normal." As many note, you really need to consider the person you are working with when assessing a person. For example, my DH was very good in math (engineer) so his inability to count backwards from 100 by 7s is very significant. Of course, if you use your fingers, you can figure it out. Still, my DH cannot get beyond 93 EVER.
Hello everyone. I have missed being on, I was feeling very overwhelmed with alot of issues. I was away in Arizona last week and my husband took off with the car. My DH had an appointment this am with the neurologist and failed worst on the test than he did 5 months ago. From not knowing what year it is to his phone number etc. Asking him to draw a clock and for it to read 2:10. He drew a circle and wrote 210 in the circle. The doc ask him to write a complete sentence. He writes " I feel good. My husband told unbelieveable stories to the doctor that sound so believable the doctor asked me is that true He's giving lectures? Make a long story short we were there for over 2 hours. they want to start him on namenda along with exelon and seroquel which he is already on. No matter what you say to them they cannot comprehend anything.
FTD, my husband couldn't even make the circle for the clock this time around, and has never been able to draw it in the 18 months since his diagnosis. He can't write a sentence although he can still read and actually can still print things out. His doctor spent close to 2 hours on the first appointment and about an hour on the most recent one.
He no longer tells stories, but believe me his doctor does not actually believe them, which is why he asked you what he asked you.
FTD, I am SO relieved to hear from you again!!! I've been worried about you...
You must have been frantic over your husband taking off like that. I hope it didn't take long for you to find him, and that he wasn't hurt or your car damaged.
I know it hurts to watch your husband struggle with such a simple test. (Although one does have to admit that what he drew for the clock is perfectly valid for a digital clock -- that did make me smile. Sometimes our spouses find very clever ways of compensating.)
It's good that the neuro is asking you for your input. He obviously knows that he can trust you to help him help your husband.