New and overwhelming
My husband is 74 and I’m 68. We’ve been married for 43 years. He was recently diagnosed with mild cognitive impairment, but over the past few weeks we’ve begun experiencing some changes that have been frightening and confusing for both of us.
The biggest change is that he sometimes knows that he knows me, but isn’t sure exactly who I am or what my relationship is to him. At times he has wondered whether I’m his wife, and he sometimes thinks there are other people in our house when it’s actually just the two of us. What makes this especially puzzling is how much it fluctuates. He can have a very confused evening and then seem almost completely like his old self the next morning.
This all followed a hospitalization in August during which he experienced significant delirium. He also has several medical issues that could potentially be contributing, and his doctors are still evaluating what is going on. We don’t yet have a diagnosis of dementia or know how much of this may be related to the hospitalization or his other health problems.
I’m his primary caregiver, and I’m finding the uncertainty particularly difficult. On his good days I can almost convince myself everything is going to be okay, and then a confused episode happens and the fear comes rushing back.
I would especially love to hear from other spouses who have experienced fluctuating confusion or periods when their husband or wife didn’t recognize them or became confused about their relationship. Did it come and go? How did you respond when it happened? And how did you learn to cope emotionally with never quite knowing what kind of day you were going to have?
Mostly, I’m here to learn from people who have walked this road and to have a place where I don’t have to explain why something that might sound small to someone else can feel enormous to a spouse.
Thank you for letting me join you.
Comments
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Sorry you are here with us. In many respects, your post resembles mine. My husband is 67 and was diagnosed over the summer with mild cognitive impairment. He had surgery and a few days inpatient stay back in December 2025 and that seems to be our line in the sand.
He had been struggling with short term memory issues but now much worse and very difficult to find words to speak. Since communication is so difficult for him, it’s caused his to withdraw further.
I notice that some days are worse than others - either with the memory and/or communication. Some days, he’s like my husband I’ve always known and other days, this shell of a person. I think his bad days are when he is tired. He naps much more in the afternoon.
We do not yet know the why or what this is or how/if it will get worse. Coordinating doctor appointments and getting on their schedules takes some time. I am in the process of DPOA and getting financial advisor to manage our retirement. My husband used to do that and then he just stopped. It was too overwhelming for him.4 -
Hi Misteelyn,
My heart goes out to you as I know from personal experience how frightening and confusing, and also heart breaking it can be when your spouse/partner suddenly doesn't know you, or thinks there are others, strangers in the house.
I realize you don't have a diagnosis of Alzheimers or dementia as yet, but many, many people with that diagnosis experience something called Capgras Syndrome. I don't know if you've heard about it? I won't try to explain it here as it's complicated but if you look it up online you'll find lots of information about it.
It's a hard thing to experience and as I said, my heart goes out to you. In my case my Life Partner (I am 68, she is 77 and we have been together for 36 years) began to experience this initially probably 3 or 4 years ago. At that time it was intermittent. It came and it went. Sometimes with short intervals and sometimes with longer intervals. Sometimes she wouldn't recognize me and I wouldn't realize that she thought she was talking to stranger. When I finally caught on to what was happening and when she asked who "these other people in the house" were, I replied to her, "well, they must be your guardian angels!" At that time I was just trying to keep an upbeat note on something I was finding scary and weird and I didn't want her to know I thought it was scary and weird. I also did not realize how hurt my feelings would be that she no longer recognized me all the time. But that is a totally normal reaction. I found the important thing was to always reassure her that the Angels were here to help her, to keep her safe, to be helpers and to love her.
But for us at least, and I'm not suggesting this to you necessarily, as what works for one person may not be a good strategy for another, but over time I was fortunate that my LO came to regard these "strangers" as, yes, helpful Angels.
But before that, while she still had the cognition to read and understand what she was reading, I discovered "Capgras Syndrome" and had her read a few articles about it on her own. For us at least at that stage of her dementia, reading those articles gave her a rational basis to try to understand this weird thing that was happening to both of us. And it gave me the opportunity to be able to say, "well all the Angels are me, and I am all the Angels". I knew she got it when she told me one day, "I get it - all the angels are just different aspects of you, right?" Yep, I replied. Right!
In the early stages it does come and go. And it can be spooky because I found that I could be talking to my LO and just assuming that she knew who I was, and suddenly, because of something she would say, I would realize she thought I was a total stranger. As I said it was hard at first but I’ve learned over time that it’s not a personal thing – it’s just her brain not working normally and instead, working in mysterious ways as it tries to make sense of the constant changes it’s experiencing.
You asked how I learned to cope emotionally with never quite knowing what kind of day I’m going to have? To be honest, I’m not sure I have ever entirely learned to cope emotionally with that uncertainty – but what I have, over these past 4 years or so, as my LO has continued to decline cognitively is try to accept that every day is going to be a new day, a new experience for both of us. I try to wake up each day with the expectation that I cannot predict or control what is going to happen, that there will be surprises constantly, and that my intention each day is to just go with the flow and to make the very best day of it that I can. There are always going to be good days and there are going to be bad days. I don’t mean to sound too Zen when I say this – but for me, learning to live in the moment, to be mindful, to enjoy the good moments and to realize that bad moments and days will pass by and there will be other good days and moments is what gets me through.
I send you my heartfelt best. I know the difficult place you are in at the moment because I have been there too.
Take care of yourself.
Debrah3 -
Hi Debrah,
Thank you so much for taking the time to write such a thoughtful response. Your description of the early experiences with your partner really struck me, especially when you said that sometimes you didn’t even realize she thought she was talking to a stranger.
I had already been reading about Capgras syndrome, although some of what I read didn’t seem to fit exactly with what my husband is experiencing. But your real-life experience sounds much more familiar than some of the clinical descriptions I’ve read.
One thing that puzzles me is that my husband seems to have some insight into what is happening. We’ve talked about the fact that the “other women” he thinks he sees in the house are actually all me. At times he seems to understand that intellectually and has even told me he’s trying to figure it out himself. He has also said that it’s hard for him to understand that I and his wife of 43 years are the same person. Then at other times he seems perfectly clear about who I am.
Just yesterday, for example, while I was sitting beside him he referred to me by name in the third person, as though I were someone somewhere else. I simply said, “I’m Mistee,” and he immediately seemed to understand, realized he had said something wrong and tried to correct himself. He wasn’t frightened or upset by it.
If you don’t mind my asking, I’m especially curious about those very early intermittent years with your partner. When an episode passed, did she ever realize afterward that the “stranger” had actually been you? Did she have periods when she understood what was happening to her, as your story about the Angels seems to suggest? And how long could she go between episodes in the beginning?
I realize our situations may ultimately be very different. My husband’s more significant confusion appeared after a hospitalization with severe delirium, and we’re still trying to sort out what is dementia, what may be lingering effects of that illness and hospitalization, and what may be related to his other medical issues. But hearing from someone who has actually experienced this with a spouse is incredibly helpful.
And thank you especially for what you said about learning to live with the uncertainty and enjoy the good moments when they come. That is something I very much need to learn.
Thank you again for making me feel a little less alone in this.
Misteelynn
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Hi RMremdler,
Thank you so much for your reply. My heart goes out to you. The uncertainty is awful as well as waiting for appointments to be scheduled. It's all so stressful.
Luckily, we redid our POAs, HCPOAs, Living Wills and Last Will and Testaments years ago. I recently reviewed them and they all look in order except he is the primary representative on my documents and I think I should change that. But his documents seem to be fine. I've always done our finances so that is not an issue for me. I guess I'm lucky in these respects because there are fewer things for me to learn and do. But I still have a lot to learn and I can honestly say that these past few weeks have been a great learning experience.
Good luck!
Misteelynn
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The uncertainty is not easy for me, either, because it's contrary to my nature which is rely on routine, predictability, and order. I’d say, make it a routine so I can stop thinking about it and move on to other things.
I remind myself that M (my wife, PWA) doesn't have reliable memory for routines. She'll put the half and half back in the fridge but not necessarily on the shelf in the door. At least it's in the fridge though, and I can put it back where it belongs so she'll find it the next time she looks, and so will I.
Left to herself she gets ready for the day just fine, though maybe forgets to wear a shirt under her fleece. I'll remind myself that at least she's warm.
She’ll recognize the blanket folded by the bed, and remember she wants it laid out across half of the bed. Sometimes she’ll spread it across the bottom half, though, instead of her half, where it keeps her warmer.
When she’d feed Dylan, she’d often get a new can and we would have two and even three open cans of dog food in the fridge. I recognized the pattern, “she tends to look in the cabinet for dog food” so I changed things around and moved all the new and unopened cans to the shelf in the fridge. Problem solved.
By now it's become fairly predictable that she can't be on her own for too long before she'll get blue and may even start crying. The first few times that happened I was so sad for her, and dismayed for myself as I realized my caretaker role really had transitioned beyond full time to 24x7. I held onto normalcy too long. Now I know that I need to be by her side or, once she's settled into reading social media, leafing through a magazine, or watching TV, just in the same room or in sight. It can still happen that she'll get sad but I've learned to gently help her move through it, and to have simple activities ready which draw her out of it. We'll go walk the dog, run into town for ice cream, visit a neighbor.
I'm afraid I'll always be habit-bound, I guess it’s my nature. I try to learn her patterns to build up a library of responses. Completely new things do happen, and when they happen, I try to hold an open mind and uncritical eyes, see what's there and not what should or used to be, and respond in the moment with flexibility, warmth, and humor (if possible and when I can).
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Welcome to the best place for info and support. After hospitalization many with dementia have a steep decline. Some go back to baseline and others don't. There is so much that is not known about dementia. Alzheimer's is a form of dementia so the diagnosis doesn't really help except for early onset or to know how it might progress. A few things that helped me after my DH's diagnosis: Read the book "The 36 Hour Day" which was recommended by a nurse. Search on this forum for the DBAT staging tool which will help you know about what stage he's in. I kept a list of my DH's behaviors and sent them to all his doctors monthly at first. 18 months after his initial Neurology appointment, his Neurologist changed the diagnosis from Dementia-Probably Vascular to Alzheimer's-Posterior Cortical Atrophy. She compared his behavior to his latest CT Scan. Search online for Dementia Caregiving videos by Tam Cummings or Teepa Snow. There are very helpful. Learn all you can about the disease so you can help him. If his behaviors come in the evening, he's sundowning. People with dementia can also "showtime" for short periods of time and appear almost normal. They do this with other people and with doctors. When my DH had difficulty recognizing me, I would introduce myself when I came into the room. I would say, hi honey, it's me, your wife Diane. That seemed to help. He thought my daughter was me. She would introduce herself to him also. It's heartbreaking when they don't recognize you. There is a video about time-shifting which explains why they don't recognize you. I don't remember who made the video put you can search for it online.
People with dementia can mentally go back in time, a real neurological experience known as time-shifting. According to the Alzheimer's Society, this is a common symptom where a person truly believes they are living in a past era of their life. Maybe put some old photos of you along with some newer ones that he can look at.
Come here often for help, for support or to vent. We understand what you're going through.
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Hi Chris D,
Thank you for telling me about your struggles. I know I can learn a lot from them because it seems like you have implemented great strategies to adjust to your wife's way of doing things. I also love routine and predictability so I'm trying to keep things as normal and routine as possible for my husband. I'm also trying to be gentle and respectful and not upset him.
The problem with us is that these issues are all brand new and very sudden. I knew there has been some minor confusion with doing a few tasks before, but sudden misidentification episodes are very disturbing. I correct him each time and he seems to mostly accept these corrections. As long as my corrections do not upset him, I will keep doing it. This morning was a particularly confusing time for him so I've been on the phone with his new Palliative Care team, PCP, and Neurology.
Thank you again for your tips and insights. I will definitely try to apply them.
Blessings,
Misteelynn
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Thank you, SDianeL. I so appreciate all of your information and recommendations. I have downloaded "The 36 Hour Day" and will start to read it. I found the DBAT, and I read through some of the chart, but I found it somewhat overwhelming so I will need to look at it when I'm not so emotional and fearful.
I keep a very detailed daily log of my husband's episodes. I uploaded the log to ChaptGPT and had it summarize it and I just sent it to his PCP in preparation for a telephone visit later this week. I wanted her to be somewhat updated with all the latest information before we talked.
Thank you again for the warm welcome and all your informaton.
Blessings,
Misteelynn
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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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