Today's Blog deals with this problem - the worse my husband's memory becomes, the less he trusts that I am telling him the truth when he asks me a who, what, when, or where question. I invite you to read the Blog and post comments here. Thank you.
Joan, I don't know about loss of trust but when I explain something to my DH for a second or third time and he says "No that wasn't it". I get irritated and want to tell him I am not the one who forgets things. I haven't so far. I have never had patience and don't know how I will handle the worse things that I know are coming.
Joan-When I am told that dealing with this disease falls squarely and only on my shoulders and not let the verbal abuse hurt me I want to scream. I am a person with feelings. My husband also doesn't trust me completely. He feels I make things up and exaggerate things. He also feels people steal things from him. This disease is just so frustrating. The doctor notes I seem to be upset about the seemingly rapid loss of memory of my husband. How am I supposed to feel? I am watching a man who started and ran an incredibly successful business, gave lectures all around the globe, etc. have difficulty making toast! I am retired from the medical profession. I don't believe the neuro people or the social workers etc really know what to tell us. This disease takes so long to run it's course, they can't possibly tell us what lies ahead because they have not walked in our shoes. I am not certain how one puts aside feelings and just transitions to caregiver. I don't think anyone who is not living this nightmare can truly understand how it totally destroys a relationship like no other disease. Joan thanks so much for giving us a place to say what we feel and not feel guilty.
I'm dealing with a loss of trust too. He knows I've been talking to people about him and he doesn't like that either. In the last week I've been on the phone with the Alzheimer's Association twice because people called to check up on how I was doing, with the police to tell me that a report had been filed from the time I called them when he was violent, and the local Assistant District Attorney because the report had been filed. He hates that. And that is part of the lack of trust.
He knows that I know things about his disease that he doesn't know, and he doesn't much care for that either. It makes him distrustful, and me frustrated and unhappy.
When I get mad, really mad, I cry. I have not had my husband call me a liar, but then that is not one of the words he can still use, I guess. :) If he did, I would get really, really mad - and cry. (That is because my natural born restraint refuses to let me clobber him.) I am thinking that I would say "I'm not the one with Alzheimer's" or "Let's agree to disagree" since you can't win an argument with an AD person. I have allowed myself to cry three times over AD - when I mourned the loss of my husband early last year; one day when he was so confused that he was totally out of it (it was just one evening); and the night he wanted to wander.
I don't bother to try to tell him about appointments until it is time to get dressed to go to them (because he has lost his sense of time).
Joan, you can't control the hurt. We are loving people who have deep feelings and it is going to hurt no matter what. We just have to forgive and try to forget and keep on plugging along.
Joan, it is okay to feel hurt by the stuff that they do. It is a change and we need time to adjust to them. I've read all about letting stuff go, let it roll off my back because it is the disease. Yes, it is the disease and every time there is a change in them that further erodes our relationship with them, it is an adjustment. I think it hurts a lot more when things that are the very foundation of a relationship (trust, love, etc.) start to break. It is okay to cry and rage (out of the person with the disease's view).
That said, after you get past the initial shock, you will need to figure out what to do about it and if there is anything you can do. One of the things that always helped me and my husband is that we both had a strong sense of humor and for the ridiculous. Once I got past the initial emotions of some of the changes, I could often use my humor to help me deal with it. Sometimes I would be overly dramatic and talk with him about it and sometimes I would just wait until a quiet moment when he was more aware and discuss it with him by asking what he thought I should do about it.
The most scary thing that was ever said to me was "you know him best and you know the best ways to deal with him." I find that frightening to have all that responsibility on my shoulders and that I am the one that has to adapt to all the changes, not him (that is so unfair!).
I'm not sure this is exactly loss of trust, but my DH remembers things that aren't accurate. He was telling friends yesterday about our flight from Atlanta to Paris a couple of years ago. He thinks there were no seats in the middle of the plane and folks were settled all over (which makes a funny picture in my mind). I just say something like, "Hank has a different memory of that flight that I do" (why bother?), but he is adamant that what he remembers if the way it was! In other words, he doesn't trust my memory to be the one that is correct and gets upset. I've related before how he thinks the present President Bush put in all these freeways and there is no way to get him to change his mind.
Frand, That's the problem I have with my DH and he is still in the mild stage. Most of his inaccuracies concern his sister in Ohio. I get emails from 2 people about her and I tell him whatever is in the email and after a while he has it wrong. I have even printed out some of them so he can read them for himself and it doesn't work. It can really get annoying explaining the same thing over and over again.
At least they can still talk to you and have a conversation even though it upsets you. I have one-sided conversations - and that is BESIDES talking to myself! :) (Sorry for the comments - I guess I am feeling sorry for myself.)
My husband's mother was very suspicious of other people, I don't know if it was the disease, but I recall his telling me she had always been like that. Now that my DH has AD, he questions taking his pills constantly. he insists that he just took them, and now he's taking them again. Why. So my answer is, don't you trust me? or do you think I'd do something to hurt you? that usually brings him around, but it is so frustrating. He has become very untrusting of the whole world, but I guess I would too, if I didn't remember anything. Frand, my DH has always remembered things differently than I did. So he has never had a good memory, he made things up, is what I always said. Now He says to me, what's wrong with me that I don't remember that? and I tell him honestly that it's the disease. what else can I say? It's so sad to watch your loved one disappear like this.
This was a timely blog for me. I cried myself to sleep last night. My hubby got so angry with me. He and I and our 16 year old son were sitting around last night, just goofing around, being funny with each other. It felt so nice. Son was doing some routines from his favorite comic (Dane Cook...the PG version!) and we were all just gently ribbing each other. Somehow, we got on the subject of motorcycle safety (we just purchased a super scooter) and my husband was saying "You know, in Mexico, they don't think about safety as much as we do and so therefore, they have fewer accidents". The way he said it reminded me of something that would be on a silly skit on SNL or somthing and I laughed and laughed. He had a half smile on his face and my son was laughing too. I said to my son "Don't believe him Sweetie, he is being so silly". Then I said to hubby "What you said reminds me of one of those silly skits..." and then I mimicked what he said. I honestly was not being cruel, or making fun of him. We were just having a good time together.
Well, he got really upset. I apologized to him and told him I was only joking around and in no way meant to be offensive. He left the house, mad. I looked at my son with a "WTF!" look and he looked at me and said "Is he mad at you? Really?" And I told him I thought he was. He then said "But Mom, what about? We were all being silly". And then the truth hit me...he wasn't joking!
So, when he came back, he was steaming mad. I immediately ate crow and told him again, how sorry I was, that I thought he was joking, yada, yada, yada. He ripped into me saying that I humiliated him in front of our child, and that I was mean, and cruel. I attempted to tell him that the manner in which we were joking around with each other is no different than the way we have always and his response was "Well, if that's the case, then for 19 years you have been humiliating me and our marriage is in a lot worse shape then I thought."
So yes, I don't think he trusts me anymore....
Oh my God. I don't know if I can stand to go through more of this...and I know it will get worse. How do you deal with not knowing when you're going to turn around and be hit upside the head with a cast iron skillet...out of the blue?
You DON'T know when you're going to turn around and be hit with something out of the blue. That's one of the things that makes it so hard to deal with. One minute things can be going along fine (at least in OUR perception of it), and the next minute -BAM! I think it's usually related to looking at and comprehending the world from completely different perspectives. Ours is supposedly the "normal" perspective, and theirs is the AD perspective, which is skewed beyond rationality. How do you deal with it? I wish I had an answer.
I think the "trust" remark finally pushed me over the edge to realizing that my caregiver role is coming to the forefront, no matter how much I don't want it to.
My husband and I always used humor with each other. It took me a long time to realize and understand that he could no longer follow plays on words and often could not understand the subtle humor that had always been a part of who he was and a part of our relationship. Even humor that seemed so straight forward was over his head after a while.
He could be very cruel in some of the things he said to me about our marriage. It was his preception that had changed not mine and I was still thinking the way I used to about all of it. I finally learned that staying calm and letting him calm down was better than getting upset when he was upset. Once he calmed down, he would realize that things were fine.
The only promise I made to him early in the process was that I would tell him the truth. He became very dependent on me giving him the answers he needed/wanted when he looked for them. When there are gaps in the memory, it really makes a lot of sense that they would not know who or what to trust. We don't really know what is missing from their memories and based on what I have seen with my husband and others, I suspect that they hide a lot of what they are missing for a long time.
Sometimes, I thought it was his fear of not knowing what he had lost that caused many of his outbursts. I was the convenient target for him to verbally vent the frustration on.
What really became difficult was that I could no longer trust him. I couldn't trust him to back me up when I was telling others what he wanted. He would tell me what he wanted in our quiet conversations with just the two of us but in group situations with family, doctors and others he would either just sit there or act like he agreed with everything that was said leaving me hanging out to dry as I tried to make sure his wishes were honored. This was very hurtful to me until we talked one day and he told me that he didn't usually understand what was being said in group situations, there was too much going on for him to follow.
The hardest part for me is the no warning switch between normal and not. For instance, she doesn't like to or can't remember how to put on her seatbelt, so I end up leaning over and doing it. 99 times out of a 100, no problem. Every once in awhile, she'll smack my hand away and hiss "Do you think I'm a CHILD? I can put on my own GODDAMN seatbelt!!"
Yeah, well you didn't know how to do it the past 100 times, so how the hell was I supposed to know? Thanks for the gratitude, lady.
But I don't say it. It's not her fault. She deson't know any better than an angry toddler. Still doesn't help our feelings, does it?
You mentioned that your husband stated, "You know, in Mexico, they don't think about safety as much as we do and so therefore, they have fewer accidents." Welcome to the bizarre logic of a person with cognitive problems. After a while, when they say things that make no sense or are so extreme for the situation, it just becomes another example of how the brain in malfunctioning.
As a few folks mentioned on another thread you started, definitely time to get him re-evaluated. Please get very concerned about your family finances. If this statement is reflective of his functioning, what do you think he could be doing with finances, the legal stuff about a divorce, making decisions while driving, etc.?
I don’t want to scare you, but if you read the many threads here, you find a lot of us have found out the hard way that our spouse is no longer making appropriate decisions and this has affected safety, finances, etc. In some cases, it has been devastating. My husband gave all his personal info to an online scammer, “fell” in “love” with this person in a few weeks and planned to marry her. He had a suitcase all packed. Please don’t think that your husband wouldn’t do any of these things. Perhaps, before the MCI or whatever you are dealing with, he would have. But he no longer thinks that same way. (I’ve been married for 36 years. Nope, not his “normal” thinking pattern ). My DH currently feels the solution to all problems, worldwide, is to bomb the country. The Junta not allowing aid after the cyclone? Send in the bombers. Yikes.
Please, do everything you possible can to check everything legal, financial, etc. that you husband usually handles, or could get involved in by accessing papers at home or work. And don’t expect that if everything is ok now, that it won’t change in the blink of an eye.
Does your son understand the problems your husband has? I hope he is a great comfort to you. Please, act proactively.
I have been reading Joan's blogs and the message boards for several months so I feel that you are all my friends. Thealzheimerspouse is where I go first every morning when I turn on the computer. However, this is the first time I have posted. DH is in the early stages but the trust issue keeps recurring. Our bank statements arrived today and he suggested that there is some hocus pocus going on. I think it is that he is unable to really comprehend and retain my explanation. Today he was upset that I have a separate checking account into which my Social Security & pension is deposited. Again I explained that I pay certain bills from that account (I started that a few years ago because he found it so frustrating to write checks.) Every now and then when our brokerage statement arrives he suggests that our bottom line used to be more than it is. He says that I am devious, the marriage was a mistake (We have been happily married for 39 years) and that he doesn't trust me any more. I used to cry a lot but after several suggestions I accepted my dr's recommendation for a Rx for Paxil and I am dealing a little better with these hurts. But it's not easy!
Frand, I think your story about the plane is an example of confabulation (inventing memories.) I used to argue with my husband that such & such never took place, but now I just let him go on his merry way with his own set of memories. What's the point of frustrating myself. I used to think I could convince him by prompters that would lead his mind closer to the truth with rational explainations. That never worked. I guess confabulation could be intertwined with trust issues.
As for trust issues, I trusted my husband to take care of our retirement funds. Now all gone due to his mismanagement.
Welcome to my website. So glad to hear you have been reading here for months.
It's definitely not easy, but I am beginning, and believe me, just beginning, to understand that when an AD "incident" occurs in their brain, and they say and do things that are so hurtful, there is nothing we can do but wait it out.
Generally, I now wait 24 hours after the incident to bring it up and try to explain how much his words and actions hurt me. Usually, with very careful, simple explanations, he is able to see it, and he apologizes. But really, one of these days I am going to learn to let it go and not bother. I was hurt for days over the "I don't trust you to tell me the truth" incident, and he's long forgotten it already.
Oh yes, no trust here either, and I have managed to act on the advice of several of you and have the bank statements sent to my P.O. Box.. Also, took the DPOA WITH the letter from the doctor stating that my husband was being 'followed for dementia' and was not capable of carrying on financial business.. The banker made copies of these things. I changed the beneficiary on my own accounts and am paying everything from my checking.. If I need money (which I will after a month or less), I will transfer from our savings. Then I will repay savings from our joint account so if an explanation is needed, he will see that money was withdrawn to savings and that should be ok.
Confabulations...yes indeed...memories of what was changes and the amount of money that I have misused or hidden from him has grown from 70,000..in the beginnings of our noticing that things were not right, to now 200,000! There was NEVER an issue of monies being lost or transferred away from him (US). Thankfully our children know this.
Aside from money, there are numerous other 'made up' realities that he tells as complete truth. If someone doesn't know better there is no way to assume otherwise. That is the reason the first dr. was reluctant to help us pursue a cause for his behavior. He told the dr. I was in the process of divorcing him. Completely false and it was only when our children and I made an appointment with this doctor and met jointly with him with pages of notes, etc. that he finally agreed to refer him for further testing.
We have learned that it does little good to argue with his beliefs. It changes nothing and we find ouselves just stuffing our own opinions and our own feelings about it.. Its a lesson in becoming what I call a 'bobblehead'. Just smile and nod.. or just nod to the extent that we can.
Our sons have 'stolen' equipment and tools. He often goes rummaging in their storage bldgs. and retrieves things that he claims as his. It is just bizarre. Thankfully THANKFULLY, they have been kind enough to let it go and if they need whatever he's taken, they come and quietly reclaim it.
I'm in the same spot with so many of you right now and so very thankful to have your experiences to help me along.
Trust - yes that is something that seems to be changing at our house. We have been married for 11 wonderful years during which we nearly daily expressed our commitments to each other. We felt so blessed!!! My husband is MCI, not AD, and he has been spending hours on his laptop computer for about 8 months - just sitting and clicking, not talking - sometimes even when company is around. I have asked him to keep the computer off when we have guests, and sometimes he remembers and sometimes he yells angrily at me when I remind him and says I've never asked him to do that before. Anyway...the other night my tummy hurt and I couldn't sleep so I got up and came downstairs to my laptop. I read the news, checked this site, emailed some friends and after about 45 minutes got sleepy, felt better and went back to bed. I was just dropping off to sleep when my husband, who had been asleep when I got up, said angrily, "I have a right to know! Are you having an affair on your computer?" I was shocked, horrified, stunned, amazed, confused! I said no and reminded him of our commitments to each other. He began sobbing saying he had awakened, found me missing, and decided I had a computer lover. He said with heaving sobs he had been lying there wondering how he could live without me. I just held him and reassured him and comforted him until he fell asleep - but of course I couldn't sleep.
Oh do I see similarities here! Especially about the seatbelt. I too have to do DH's seatbelt MOST all of the time ,but I better let him try it first!! Then here are days of totally dependent dressing and then ones that boy did I step in deep do do to even consider it!!!!!! He's NOT an INFANT , he says, and "I can't ever learn to do it if you don't let me try for myself! " I don't know sometimes when he is "joking" and when he is mad! It is mind boggling, and I wonder at times after it is over, what will be left of my self confidence to do anything!
One of the things that make caregiving so difficult is that we are isolated. Our LOs do something that is odd, or disease driven, and we think it is us that is the cause of that thing. It robs us of self confidence. It makes us depressed and sad. It just rules our lives.
And then we come here and discover that half a dozen of the other LOs, or more in some cases, are doing that exact same thing too. And the other caregivers are suffering the same doubts and losses and pain we are suffering.
And as strange as it seems, just knowing that it is NOT us, and it is NOT just our LO, that it is the disease that causes the things that are driving us crazy helps. Not being isolated helps.
We are not alone, and boy does that make a difference. Knowing that thinking about AFTER is OK, and in fact necessary for our sanity also makes a difference.