how do you say, "You have a form of dementia?"
Sometimes, in moments of clarity, after I've shown DW evidence of something that she's confused about, she'll say, "What's the matter with my brain? Why don't I know that?" Her medical record says she has Alzheimer's, but she says the people who evaluated her are a bunch of quacks, and she's pretty much in denial (anosognosia). I feel as though I can't talk to anyone about her in her presence, like getting in-home care, because she'll ask what I'm doing. I wonder whether it's a good idea, in her moments of clarity, to say, "The problem is, you have a form of dementia, and I want to help you, if you'll let me."
I realize the odds are pretty good that she'll resist, and maybe she'll get angry with me. But otherwise I'm stuck, because I need to look into day programs and/or in-home care or (eventually, probably) MC, and I feel as though I have to sneak around to do that.
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The short answer is that you don't. You do have to sneak around. I would not say it to her, regardless, as she will most likely be upset and defensive, and she won't remember even talking about it. Most folks on this forum do not use the word dementia with their LO or discuss the diagnosis. There are probably rare exceptions, but most do not and would not.
If you need to contact programs or facilities, do it by email if possible, or make phone calls when she's not around. You may have to recruit friends or family members to stay with her or distract her so that you have the private time to do so. If you bring in in-home care, say it's to help you (not her); or others have said it is a friend who needed a job.
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Early on, my spouse knew he had Alzheimer's. Later, there was a billboard we would pass that said, "It's time to talk about Alzheimer's," and my spouse said, "I hope I never get to be like that." Now he thinks he's in great health, "we're doing really well for our age," (we're early 60's). One day he called me very upset because he'd heard someone say he had Alzheimer's.
Now I go out of my way not to say it around him. His facility sent him to the ER, and the doctor was trying to figure our what was going on, "how is it you're young and married but you live in assisted living?" I actually stepped out in the hallway with her to tell her that he has Alzheimer's because he found that information so upsetting. I don't know why it wasn't in his medical record.
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Do you have elderly parents? I did, and I’d email ahead to tell about my husband’s needs and set up the appointments to tour, forewarning the administrators that my husband would be accompanying me, but I’d be pretending we were there on behalf of my parents. He went along just fine, even sometimes commenting he’d like to live there. It also gave the admin a good chance to see if he was a fit, too.
Good Luck! It’s a dicey dance.
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My DO does not mind my explaining to people that he has lost much of his ability to speak, but the word 'dementia' feels terribly insulting to him, and I avoid it.
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My mom has heard the word dementia several times from the doctors and she never processes it. She knows she has memory issues and a memory doctor. We leave it at that.
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Sounds 100% like my situation, I was told by group NOT to as may upset her and won't remember. They were right on remembering as in a week forgot all about it.
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Someone once posted about handing little notes or cards to ppl if there not aware.
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I used the “I have a friend who needs work” comment with my mom. A very independent woman! But she was agreeable to allowing her to come in as a means of helping her (the friend). Once she came, mom loved it! Someone who did what she didn’t want to do, like prepare her breakfast and make her bed. That soon followed with bathing care etc.
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TL:DR. You don't.
My situation was a bit different as dad had one of those treatable conditions that mimics dementia (WKS) in addition to Alzheimer's. He'd been told his diagnoses and given instructions to abstain from alcohol. Because of the emotional content of being told not to drink as well as losing his independence in driving and investment management the information "stuck" for a time" and angered him. Keeping him away from alcohol meant reminding him why-- "running out" led to violence and subterfuge like watering-down or non-alcohol versions were also unsuccessful.
That said, my dad was in a similar phase mentally for a time. While he readily admitted he was struggling to recall recent memories and was often confused, he felt the docs were scheming on mother's and my behalf. He would admit to forgetting things or being confused but blew it off as he believed his recall of long-term memory to be excellent. How could he have Alzheimer's if he could give you the address and phone number of every place her lived as a child? Who knows if he could or whether those memories would be as conflated as most others were. The anosognosia around other aspects of cognition and mood was real-- he wasn't aware of his mood changes, loss of reasoning skills or spatial reasoning, for instance, or how that played into his loss of autonomy.
I found this best approach was "you're having a bad memory day today, but you're better than yesterday". Once we abandoned all hope of sobriety, we just went with a breezy "we all have bad days" and left it at that. Offering help verbally was a trigger for him, so we found it best to do so discretely and without offering. The goal was to be the caregiver without being noticed as such. This was hard for mom initially as she wanted him to know all she was doing for him-- I suspect her motivation was as much about letting him know how his disease upended her life as it was about letting him know she was there for him.
Finding and introducing caregivers, day programs and MCFs with require some time to yourself and likely a therapeutic narrative aka fiblet to make happen. A day program might be a good first project. Many people refer to such places as a "senior club" or as a "volunteer opportunity". One way to introduce it, and get a good sense of whether it's right for your LO, is to attend together the first couple times and then excuse yourself to get a haircut or doctor's appointment. If and when she settles in, you can do drop off and pick-up only.
We used an agency for caregivers. This would be another good way for you to research your Plan B for care. We told dad the HHA was paid for by Medicare and ordered by mom's surgeon after mom's knee replacement. He got used to having someone in which gave mom the freedom to get out of the house.
I did the legwork for the MCFs. As successor POA, I needed a Plan B I could implement in case mom could no longer manage dad's care because of accident, illness or death. I toured a dozen places and also had a SNF checked out for post-hospital rehab if needed. The SNF agreed to take dad on-the-fly if I needed until the MCF transfer could be done. Once I convinced mom she needed to place dad, I took her to my top 3 choices and let her pick.
HB
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My situation is different ,but similar. My DW knows and accepts that she has Alzheimers, and she is an active participant in her care. She only shares her condition however with close family as she is afraid, embarrassed and sad about her condition. I do my best to keep her mellow and don't mention her condition , her memory loss or repetitions in her presence. It does annoy me that her medical providers, including her psychiatrist, have on numerous occasions, asked me to describe her behavior while she is there with me.
In your situation I would think that any conversation you have with your DW that she would view as argumentative or combative would be useless and possibly damaging. I have been learning , however that each of our situations is unique and that there are no pat answers to any question.
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My DH will say he has memory loss and occasionally is able to acknowledge he has dementia. But I do not bring it up unless he asks. Right now, I still work full time so I can do alot of things while at work. I do agree sometimes it is frustrating his drs will ask him questions about how he is doing and he says fine! I have had to step in and explain things to the dr in front of him. Not pleasant but important for the dr to know what is going on.
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Another reason not to mention it in times of lucidity is because there is a good chance that it will result in depression. Even if she forgets about the conversation, there is a good chance she will remain in a depression because those feelings don't just slide away the way memory does. My wife knew she had problems, but would say she didn't know what was wrong with her. Dementia or Alzheimer's was never brought up by any family members or friends.
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I guess I’m confused. It seems most have had their spouses tested extensively for dementia, having met with specialists, etc. Now this post has people saying they never say the word dementia to their loved one. How does this work? My husband has dementia and 3 years ago I used the patient portal to ask his primary doctor to run tests. She did the one memory test (told him was a routine test) and also labs to rule out any issues there. He has since refused any other tests and is still upset she did a “brain test “ on him. I have never told him he has dementia and believe it would cause more harm than good, which seems to be the general consensus on this post. So how did you get a diagnosis of the type of dementia? My husband needs meds for anxiety and I have talked to him about this. He says he knows his body better than anyone and he’s fine. How can I approach this without using the dementia word? Any advice would be greatly appreciated. His memory is pretty good so can’t tell him he has memory problems. He repeats, repeats constantly. He obsesses over everything, is suspicious of most all people, etc, etc. His doctor believes he has some sort of frontal lobe dementia.
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Pat, the only way you could know for sure is to take him to a neurologist for more testing. But if he won't do it, you can't know for sure. You also can't talk to him about the need for medications, you probably have to lie and tell him it's for something else, or give it to him in liquid form that you can put in drinks or food. It's harder to lie about the testing as he'd probably see through that. You might be able to get him to a geriatric psychiatrist if you told him it was a consult regarding sleep or sleep apnea. The doc would probably go along with the ruse if you asked ahead of time. You should document the paranoia and agitation with video if you can.
FTD is extremely difficult and im sorry you're going through it.
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Pat, my wife knew she had problems. So she went for testing. When we went for the diagnosis, she didn't feel well, and didn't want to go. She just wanted to be home. But we went. She felt so bad that she didn't even hear the diagnosis, but I did, and I knew what it meant because I was already a member here. She refused "meds for memory" several different times through the years. We never mentioned her diagnosis to her.
Remember that more than half the patients suffer from anosognosia, so mentioning it to them could cause problems. I think M1's suggestion is golden.
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I started this thread, and I appreciate all the comments and advice. The general advice is not to bring up "dementia". However, one problem I have is DW sometimes looks at her online medical history or "care summary" from a visit, and "Alzheimer's" is just sitting there, and she asks why it's there. It got put there after a psychological evaluation a few years ago. As I mentioned earlier, DW says those people are a bunch of quacks. I usually say I don't know whether she has AD, but that she does have memory issues. What do others advise?
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M1, His doctor has asked him at last 2 appointments to take a sleep study for sleep apnea. He has refused both times. I have thought about the liquid medication to put in his food and even mentioned that to his doctor. She was pretty reluctant. Have been trying to think of a way to maybe get her to suggest something to “help with blood pressure “. I tried videotaping a couple of times but it’s hard to do and be inconspicuous plus catch him at the right time without getting caught. I need to keep trying to get a video. Thank you M1 for your suggestions. I appreciate it. Pat
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17pla1w2. The only thing I can think of is to tell her no one knows for sure as Alzheimer cannot be proven until after death. So it is only her doctors opinion.
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My two cents:
I don't have that conversation with my DH anymore. Earlier, when I knew little about what I was dealing with, I would try to remind him that he had MCI or cognitive issues. Those conversations ALWAYS devolved into an argument, frustration, agitation or worse. I also used to involve him in decisions about the house, finances, life in general, and now I don't. I make the decisions and if he asks, I tell him only the bare facts, usually ending with something to the effect that we both have it under control. That seems to work.
For an example of how I needed to change MY behavior, I offer this story: Our insurance company changed online pharmacies and the transfer of information, setting up the account, adding payment methods was too much for DH to handle. So, I did it. When he asked about his medications because he got notice from the new pharmacy that his meds were ready, I told him that we have it all under control and for him not to worry. He pushed back, super agitated and saying he wanted to be involved, and I relented, against my better new found judgment. That decision was wrong - he got tangled up in the details, confused about the process, agitated about payment, angry about his inability to do the task, and so on and so on.
That was the last time I involved him in these activities/decisions. On one hand, it was a painful development because we used to make decisions together and he had been so very independent and capable. On the other hand, it is now so much easier and less frustrating for him if he's not involved. It's the nature of the illness and his frustration, agitation and inability to do these things is an indication of progression. It's a difficult change in MY behavior but one that creates calm and harmony for him.
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Sadly, this is another example why access to technology can cause unforeseen issues for PWD.
If this upsets her, it's best she doesn't have access. I would change her patient portal password and tell her the system is down/being updated. Rinse and repeat.
HB
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I've actually pretty much taken over doing the things DW used to do. I have all her passwords and manage her accounts.
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Very well said, Anna. I pretty much have had the same experience and am in the same place for most things. One thing I have done is change all the contact numbers and emails to my number and email address but sometimes I have missed a few.
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Some places make it hard to change the email address, because it's also used as a login ID.
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Anna and Belle - me, too.
We dance around the "Alzheimers" word but my partner is generally ok with it, as in, when she's frustrated with not being able to do something, we say "Alzheimers sucks!" There was another poster who found that to be rude when someone outside the family said it, but for us, it's our way of blaming the stupid disease and not the person who has the disease.
She does not, however, acknowledge all the ways AD has affected her. She blames it for her memory problems and if pressed, would probably recognize that asking the same question over and over is part of it, too. But all the other things she doesn't do as well as she did in the past -- doesn't acknowledge, doesn't accept responsibility, etc.
Anna, we had similar problems to your pharmacy story. And the latest "I shot myself in the foot on this one" -- there's a memorial service for a friend's husband coming up on Friday. When we learned about it, I mentioned it vaguely and asked if she wanted to go - no, doesn't like funerals, ok fine. As I made plans to go with other friends, I thought I'd better ask again to avoid an argument that she wasn't invited... I got a "well, I should go, she's my friend, too." Rats. Now I have to figure out how to get her to stay home and think it's her idea. Wish me luck.
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Holly, maybe you could still use covid as an excuse to get her to stay home. My partner hates to mask so I still use this all the time (numbers of covid and flu are very very high here, still).
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l7pla1w2 if you can't stop her from getting online, maybe you could just say "I think maybe they might have had you mixed up with someone else when that was put in there, now trying to take it out would take an act of Congress. But that is only a word, and you know yourself best. Don't worry about it." Just a thought.
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Most people with dementia are unable to understand that they have dementia. This is a condition called anosognosia. Their brain disease prevents them from understanding that they have a brain disease. You won't be able to convince her. You just have to find ways to work around it.
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Good morning,
It’s true that everyone’s experience is not the same. Also things change with the stage your loved one is in. I hide the books I’m reading on this cursed disease and read in those moments I’m alone ( use your imagination) Unfortunately I left the 36 Hour Day book out by mistake and my DW found it. She took me aside and asked if I was concerned about her mind, memory etc. I didn’t use the word dementia at all but was able to talk frankly about where she is at with memory and some concerns for her needs such as why I do all her medications. I was able to bring up a time when she took 5 times the amount of a gummy laxative than was the proper daily dose ( she did this in about 30 minutes time and was about to take more). It was a moment of clarity and honesty where she said 2 things: “I want to do all I can to not lose what I have. If dementia is in my future I’d rather die”. We cried together. It was a special time for me. I was able to share what is so very heavy on my heart with my best friend and life partner.
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So, DW knows something is wrong and asks, directly, "What's wrong with my brain?" And you respond...?
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"You're just getting older, it happens to all of us."
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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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