How much information to share with DH?
My DH has been showing signs of cognitive decline for a while. We are beginning this journey to get a diagnosis, which (as you all are well aware) will include a lot of testing and doctor appointments. My husband has excellent coping skills, so it took a long time to convince his primary care doctor that there was an issue….until he finally did some cognitive testing, which my DH failed.
My DH tells me that he wants to know "everything" as we see doctors and get more information, but he's also really terrified to know what's going on, since he was the primary caregiver for his own mother 30 years ago as she succumbed to dementia. Just wondered from this group…how transparent should I be with him as we gather information and reach a diagnosis? I don't want him to feel like he is losing control, but there will be some significant changes, such as the need to change his primary care doctor who is not giving us the support that we need.
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Only you will know how much to divulge/share. I would take cues from your DH's reactions. I was very transparent with my DH because we both needed answers. It took almost a year to finally get a preliminary diagnosis with confirmation after more PetScans. By then he knew his diagnosis but apathy had developed so that he had no empathy or sadness, just fear and anger. He knew/knows it's incurable.
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My wife knew there was a problem so as she was tested and after I have given her all the information she wanted, but no more details then she needed. Since her diagnoses almost 9 years ago I don't think I have ever used the words Alzheimers or dementia when talking to her. Memory has been the thing she has noticed, so I would say since your memory is not as good as it used to be, or something like that. 8 months ago she had a stroke and had to move to memory care and that was "because of the stroke" I still have not said Alzheimers or dementia. She has some delusions but other than that she has been pretty easy to deal with compared to what a lot of the people on this site have had to do.
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Thank you - it sounds like your approach is working well. How would you respond if she asks you directly if she has Alzheimers or dementia? My DH is already asking me these kinds of questions…
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Thanks - I am finding that I need to pay much closer attention to his willingness to accept certain details despite the types of questions that he asks…and the length of time that it takes to get a true diagnosis is probably one of the most surprising things that I'm finding in this journey.
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I was honest with my spouse as long as he could understand the answers. After a while he didn't understand any more or was upset by his diagnosis, at which point I stopped, and started giving vague answers like, "You know how doctors are," or, "they're not sure yet."
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I do the same as brupt30. If my DH asks me directly if I think he has what his mom had I always say no. Always. And I can see the relief in his eyes.
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It would depend on how far along she was at the time. I would have been honest the first time she would have asked, and insured her we would work it out together, but if she asked again I would be much more vague and less open because if she hadn't remembered after the first time there would be no reason to repeat upsetting news over and over. My wife was pretty easy to deal with as long as I didn't argue about her delusions. I am sure there are many others here that have had different experiences.
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I have mentioned dementia a few times and it did not go well. Now I really just avoid any mention of her condition since it really would not change anything. At some point, if medication is needed I will figure out how to explain it.
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My husband was diagnosed two years ago. He really didn’t ask many questions. I go with him to his doctors appointments. All he asked me was if he would ever get better. I gently told him no. Eventually he would get worse but he is taking medication to help. Slow some of the progress. He is pretty stable but I keep notebook. By the sofa I write down any changes. I notice so I can share them with his doctor. He doesn’t even realize I do it. You just share as much as you think you should. Give him information but keep it short and sweet.
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My husband and I rarely talk about his dementia. He knows and that is enough for now.
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I don't bring it up. Sometimes I say we're getting forgetful and help each other, which is true, although she is far more forgetful than I. She refers to her dementia as "losing my marbles" and says things like "You're a good guy because you know things and I don't." She hates the word Alzheimer's, however, because she knows what it means. I turned on the Today show the other day, and they were talking about Alzheimer's with clips from a movie about a person with AD and a doctor saying there was nothing to be done for it except at the very early stages. She was distraught, and I changed the channel.
I guess we are doing a lot of not thinking about and enjoying life as much as we can. We always knew we were going to die someday, and that we probably wouldn't die together, so we have spent 57 years enjoying life as much as we could.
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So sorry about his diagnosis. My DH’s doctors never used the words dementia or Alzheimer’s. They said white matter disease, cognitive issues, memory loss. My husband asked me directly once if he had it and I said yes but he never asked again. I called his Neurologist the brain doctor and when she prescribed Memantine he asked what it was for and I said to help your brain. Same when they prescribed Risperidone for hallucinations and agitation. You will learn to be vague and fib. No need to cause him unnecessary anxiety. Keep a list of his behaviors and don’t let him see it. It will help you communicate with his doctors. I sent the list to them monthly. You should ask for a geriatric Psychiatrist if he has anxiety, agitation or hallucinations. They are best to regulate his meds if he needs them in the future. You are at the right place for help and support. Please read the book “The 36 Hour Day” which helped me after my husband’s diagnosis.
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When my mom was diagnosed the doctor told her it was dementia. She asked for more information about dementia and what to expect, so I gave it to her. She has anosognosia like many with dementia. So while she knows she has dementia she sees very few symptoms and believes she is in the very very early stages. On bad days she tells me the doctor didn’t know what they were talking about when the diagnosed her (says she doesn’t do good on tests and she was just nervous). I never bring her dementia up in conversation. In my opinion let him know the diagnosis and see where is goes from there, but don’t bring the subject up yourself. I guess it all depends on where he is at, if memory is an issue he may just forget.
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That's a great approach…I hate the idea of withholding info from him if he is asking directly, but once I've conveyed once, it's much more compassionate to be more vague in subsequent questioning if my DH does not recall the original discussions. Thanks for sharing!
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I tell almost everything to my wife. I want her to know what is happening to her brain.
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When my DW was diagnosed, we both went through the 3 hour testing. When we heard the results of her tests, the person telling us was brutally cold and uncaring. We were both crying. As we left the office, the brutal woman told me her mother had also been diagnosed. We were told we should come back in a year. My DW said she would never go there again, and I agreed.
Since then, she has never mentioned her condition, and we never discuss it.
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Each person is different, so you share what you think is best. My DH readily tells people, sometimes strangers, he has Alzheimer's. At a recent family wedding, we were introduced to people we'll never see again. The first words out of his mouth were, "I have Alzheimer's, so I probably won't remember your name." Many people don't know how to respond to that. The neurologist he has been seeing for over six years at a local medical school has told him he has Alzheimer's and brings it up during every visit. Not too long ago, my DH told me that he has Alzheimer's, but he doesn't have dementia. I responded that Alzheimer's was a form of dementia, and he disagreed, saying he had looked it up on the internet. I haven't used the term "dementia" since with him, and I'll continue to avoid it.
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I was incredibly ignorant about Alzheimer’s prior to DH’s diagnosis (no longer the situation!). It caught us both off-guard. I try to avoid the topic, but he asks at least weekly what disease it is that he has. I’ve tried other answers, but somehow he knows they’re not the right word and gets agitated. So I end up having to tell him. The good news is that he isn’t aware of any symptoms other then memory loss, and I intend to keep it that way.
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My partner's providers talk to her about her "brain health," and use "memory" a lot. She's had depression for years so they talk about that pretty freely, even though I can tell they're also referring to all the areas where depression and Alzheimers overlap. They say "as we age" a lot, I guess to help her feel like this experience isn't all that uncommon (yikes). She knew the diagnosis when she got it in 2020 and if pressed, probably knows what it is now. She hates that her brain doesn't work right any more (her words). I'm careful not to use the word dementia with her or about her with others; I do say she has Alzheimers when I need to apologise to someone or explain a behavior, because most people have a basic understanding of that.
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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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