How to respond?
Hi all. My wonderful Hubs has Alz at 66 years old. I'm wondering how others might suggest I respond when he says things like, "Well you never told me that!" or "I never knew that." Of course, he's been told of schedules, plans, etc. I even write them on his calendar now. But how do you respond? I don't want to snap at him, but sometimes I'm the one blamed when he doesn't remember and it gets frustrating.
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I just say, "Oh sorry. I thought I had. I'm getting forgetful", then drop it. I have 3 different calendars, notes all over the place, have told her repeatedly, etc.
Somehow, it makes perfect sense to my SO that I'm the one getting forgetful. Lol
I sometimes want to scream when I do this, btw, and it's taken me a year to get to this place of just saying it's my fault and moving on. Letting it go has been a nice relief, even though I still get really frustrated by it.
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Thank you for the helpful information. My husband is 67 and shows signs of Alzheimer’s. It’s sad and difficult to be kind sometimes. Not only does he ask about plans, dates, times over and over. He wants to take time to write it down. It’s already written down. Getting a neurologist appointment in Austin is a nightmare. Have been waiting since March. Our appointment was cancelled once, rescheduled for November. Is this normal?3
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I'm sorry you're going through this. I think this was the hardest lesson for me. He can't remember. He can't be reasoned with. It's hard, but you have to take one (or a thousand) for the team. "Sorry about that" and redirect. If it helps, think that you're sorry he can't remember rather than you're admitting to being wrong. That's how I deal with it sometimes.
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I hear this all the time-but now that she has progressed past the anger stage i am able to say "well you've just forgotten" in a nonaccusatory, very matter of fact voice, or sometimes I'll say, "you may not remember this, but....". Both of those approaches work. The only thing she still argues about is wanting to go home, she hates it when i leave after a visit.
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One of the many things my LO constantly asks me for is my mobile number (even though I am with him 24/7 and he doesn't remember how to use a phone); I just write it down and give it to him - over and over and over again lol. Much easier than telling him I already gave it to you. We can all related.
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We can all relate to this repetitive questions/answers circle dance. We, caregivers, are exhausted and frustrated. They, dementia sufferers, are scared and frustrated.
I would tell my DH, "It's been written on the calendar for awhile now. If you want to know, just look at the calendar." Then I would get accused of lying. Sometimes, I'd explode at him. Other times, I just ignore his accusations as if he never said it. Oh well, it became the new normal where I began to fluctuate between being patient/understanding/empathetic and outright explosive. Believe me, the repetitive questions and accusations are tame compared to other behaviors to come. Often I'd see posts about LOs sleeping all the time. Heck, I wished mine did.
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The thing you really need to do is to fully accept that he has a brain disease, and it will not get better. The reason I'm saying this is because when you finally accept the facts (not an easy thing to do) it will make things easier for both of you. Then learning how to respond to different situations becomes easier, but you have to keep telling yourself about his disease. Fiblets become your friend, and you will find it is much easier to take the blame for things, even though you are not at fault.
"I don't want to snap at him, but sometimes I'm the one blamed when he doesn't remember and it gets frustrating." Make up your mind right now that you will be blamed whenever things don't go the way he thinks they should. When you get frustrated (that's normal), think about how he might feel. Caregivers have to be the ones to change. Their LOs don't have the capacity to do that.
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@dhamilton2023 not to hijack original post, but we are located between Austin and San Antonio. Right now DH, who doesnt have a diagnosis, is refusing meds and any medical visits which is probably a good thing. About 3 weeks ago, I called Biggs Institute in SA and the soonest appt was May 24, Mulva Clinic at Dell was April 24, hometown neurologists were March and Feb 24. He saw one of the local neurologist in 2018 for neuropathy ... his earliest office appt was Feb but they did say since we are local, they could put us on the cancellation list. I got so discouraged and just didn't schedule anything since he is so anti healthcare. Don't even know what to do now.
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The repetition seems to go on and on! And I agree with Ed, when we accept the fact they can not help it, it does become easier. My dh is end of stage 6 starting 7 and we still have the repeating. Today dh asked what day is this, it’s Wednesday all day and when we get up tomorrow it will be Thursday. He took his nap and when he got up he asked is this Sunday? .gave him a hug and had to smile and told him nope it’s still Wednesday! When I can smile about things he will smile and not get frustrated. It’s easier to smile than it is to cry and it takes less time.
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The reason my dh asked if it was Sunday, I had told him our son was coming to visit on Sunday!!
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With my dad, I just said something like "I'm sorry, I thought I mentioned it" or "I just found out..." and then redirect to a different topic or expand on it in a positive way.
I really feel like sometimes the questions are a way PWD try to connect/get attention when their pragmatic language skills are tanking on them.
HB
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Thank you all for your responses. This is the first time I've reached out for help. Hubs and I live in remote Colorado, and there are no real support groups in my area. There is one, but it turned into a church thing - not what I was looking for. So it's nice to have support from others in my situation.
A few people have mentioned stage 6, 7, etc. His neurologist has never mentioned stages... what's this all about?
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Drangonfly, welcome to the forum. Sorry you have a need for it. Here is a link that will be informative for you.. https://www.youtube.com/watch?v=6l01RtZPg7c
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You might also want to check for online support groups? I taped a list of the meetings to my computer screen, but still haven't attended any :p
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Here's a handout someone else posted that helped me understand: https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf
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What ED1937 said. At first I got upset and aggravated that I had to repeat myself and answer the same questions over and over. Then after finding this group, I realized it was the disease and my DH can't help it. I did get him a large clock with the time, day, date and he uses that. I changed his analog watch to a digital one. He writes lots of notes but still asks lots of questions. He's Stage 5 going into Stage 6 and has started shadowing me at certain times of the day usually in the evening. I use the "sorry I must have forgotten" and distract him with another question or comment. He put tissues on his table by his chair and asked me why I put them there. I said I didn't and he acted like I was lying. So I said "oh I must have forgotten, do you want me to move them" -- he said no. LOL. Someone posted that really hit home... they said "you can't reason with someone whose "reasoner" is broken... Arguing doesn't help. Don't take it personally. If you haven't read the book "The 36 Hour Day" it really helped me.
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I find the repetitive questions ramp up when my partner is anxious about something. I've started looking for whatever set her off, and at the same time I try to be super calm about answering so I don't contribute to the situation. I make a game out of answering with exactly the same words and tone of voice. I do not count the number of times she asks the same question - it's too depressing - but I do pay attention to whether it's five times between home and the grocery store, or once, or not at all. She hates that she can't remember and I don't want to make her feel any worse than she already does.
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When my DH was at that stage of asking the same question over and over, I found it was easier for me to try to maintain a pleasant voice and a pleasant look on my face and answer the question with the exact same words. Keep the answer simple. Ex: Where are we going? ( probably asked 10 x within 3 miles ) I just said " To get pizza ." The more simple the response the better.
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That is lovely.
Truly, it's usually what I try to do. And sometimes when I answer exactly the same way, he remembers, "Oh, yeah, that's right!" LOL! He's sweet & exasperating at the same time. But I'm so glad I can reach out to others.
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Like you, I live in a remote area without any support. This group taught me the best lesson ever, let it go. We would bicker so much with me arguing with him about being accused of doing something wrong. Once I let it go, it’s been such a relief. Most times I, like the others say, will either Apologize or tell him I thought I had told him. He may try and whine a bit more, but more often than not a quick hug or a kiss will get his mind away from what he was accusing me of. And then I walk away and scream in my head.
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I hear the same thing day in and day out. Told my DW we have been married 30 years and she cried and asked me why I never told her. She sees left overs in the fridge from eating out less than an hour before and she wants to know what it is and where it came from? When I say "we" just got back from eating out she will look at me with hurt in her eyes and ask "Where was I?" "How come I didn't get to go?". . .
I've never come up with an very good response to that other than "I'm sorry I thought I told you!" or "you were there, I wouldn't go out without you!"
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I hear the "where was I?" a lot too. However, i am beyond fortunate that my partner has moved past the anger stage for the most part (medications may have helped here) and am blessed that she still has a good sense of humor. She laughs at herself every day. Even the leave taking in the afternoons has gotten a bit easier. I still can't get her to socialize with other residents or to let the care aides help her with ADL's. Care plan meeting this next week where I'm sure these things will be discussed. Going every day to get her to eat and leave her room is taxing. What a helluva year it's been....
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My DH has Alzheimer’s and this reminds me of stuff he would say a few months ago & I would also feel annoyed etc. but the sad truth is that it doesn’t bother me anymore, or, I should say that I no longer react. It’s the new normal. I’ll just say “this is what we’re doing.” If he says: “I didn’t know that” or “you never told me,” I simply ignore it. Keep it simple, keep it moving, don’t take it personally.
I think taking it personally means you’re still attached to the person he used to be and are still struggling to accept the person he is now who has a brain disease, which is normal. The process of acceptance and adjustment is ongoing. It’s really about letting go. It’s very sad. He’s losing his mind and you’re losing him, but you’re not alone.
I did want to add something funny. Before Alzheimer’s, my husband became hard of hearing and for a few years before he got diagnosed & fitted for hearing aids he would accuse me of mumbling and of not telling him things. It’s the same cognitive dissonance and unintentional gaslighting. I guess it’s not funny but it was ridiculous. Try to laugh and talk to people who can support you through this. As others on this forum have told me, he’s not gonna get better and things will change all the time just when you think you’ve got a handle on the situation. You’ve got to take care of yourself and realize that you are flying solo now.
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We had to wait about six months in NYC. Originally, it was eight but I was able to get bumped up by calling persistently and begging.
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It breaks my heart to hear you say that, but I know you're right. We just had our 40th anniversary. He's just not that old..... 😥
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It doesn’t help anyone to try and argue with them, they are sick and can’t help it. It will save you a lot of stress to just answer like it was the first time you heard it. My DH repeats current events like it was the first time he heard it. Even though we had discussed in length days before. And you will never win the argument because they can’t remember. Just go along with it and know that it’s only going to get worse. It’s truly a major life change for all, but the more routine and calm you can be around your loved one, the better both of you will fare. I hate this nasty disease - just like all of you, but unfortunately, it is what it is and there’s no going back. Hugs to all of us.
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This thread was VERY helpful as I have been struggling with my responses to "you didn't tell me that". Good feedback, thanks.
Question. Is anyone else seeing a lot of deja vu? My DW has been exhibiting this a lot lately. Why is the nightly news showing a story they showed yesterday (car wreck from that night), or we have already seen this movie, episode of a series, etc. Is this common?
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I'm sorry Dragonfly100. I know exactly how you feel. It was only a year ago that I quit work to stay home with him and less than a year since my husband's diagnosis. In this time, I have sorted myself out and that was essential. In this time, too, it seems he has progressed.
There's the stuff that was happening for a while that we did not notice that we now notice; then, there's new stuff. I am surprised at how fast he seems to be progressing. I don't know if his progression is normal, really fast, or there's just more that I notice, and/or if the progression will slow down, then speed up, etc.
He is hanging on to chores like tending the woodstove (but he'll leave it go cold often), running the dishwasher and doing the dishes (always greasy and not put away in the same place twice!) and sweeping the deck (while letting the dog out, which is not allowed). So, I watch him all the time, and, if i don't, I know there's a risk.
He does little else besides watch sports (I have to set up the TV). He will sit on the couch and look out the window silently for 3 hours if no one encourages him to talk or to do something.
He used to be an early riser. Now, he'll sleep until 10 or 11. He used to shower daily. Now, I have to walk him into the shower and supervise and wash him weekly (or more often, if I have the energy). He puts on the same dirty clothes every day unless I take them and replace them. This is just a glimpse of where we are.
I recall reading a few months ago a post where a wife told me: now you have to urge him to brush his teeth. Soon enough, you'll be brushing them for him. That stung. I was advised on these forums that change is constant. Just when you feel you have things in hand, something new pops up. Also, each PWD is different.
I have had basically no help from the neurologist. I hope you get good support and realize it is like taking care of a baby. You would not argue with a baby. When a baby is fussing or out of sorts, you try to find out what's bothering the baby. You do everything for the baby. You love the baby. You do not take the baby's fussing and crying personally. That's it. Sending love and prayers to you and all who are caring for PWD.
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I've been told too that the questions are a sign that the PWD may be anxious or something else is going on. My DH does it when he so badly doesn't want to forget things, or there are lots of appointments coming up, or a few chores to be done. It's hard for me to remember it and look for what's causing the questions instead of reacting to them. None of it is easy.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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