An answer for hiya about my DW's forgetting who I was

Vitruvius

In another thread 'hiya' asked me to expand on a comment I made. I thought it best to respond in a new post. In that post I noted that earlier in my DW's dementia she began to fail to recognize who exactly I was. Specifically the request was:

"Can you explain more about how the forgetting process took place? Stage? Timeline? My husband has started this during sundowners. It’s tough. Thank you"

I don't know how helpful our story will be as I should note that my DW has a fairly uncommon dementia, Semantic Dementia, a sub-sub variant of FTD. The symptoms and stages are very similar to that for Alzheimer's but not quite. Failure to recognize faces for example is characteristic of this type of dementia. In addition my DW has raced through the stages at a turbo pace, much faster than anyone else seems to have experienced. So your mileage may vary.

DW's failure to recognize me came fairly early, late stage 4, early stage 5 I'd say. She was still able to perform all her ADLs and function fairly normally. Her diagnosis was delayed do to the pandemic and other factors, so this actually happened within weeks of her formal diagnosis.

It came all of a sudden one day, she just thought I was our son and was rather casual about it surprisingly. I came in the house after a short outing and she asked me "when will your father be home?" I was initially quite confused until I realized she didn't recognize me as her husband. For about two months her recognition of me came and went. I tried to help her by always announcing myself when reentering her presence.

After several months her failure to recognize me became permanent. In the first few months she would would worry about where her husband was, sending me text messages asking me to please come home. It was not an easy time. 

After a while however, for the most part she was relatively untroubled by my presence unlike others here whose LOs reacted negatively to their presence. She would variously imagine me to be some relative at first but eventually came to just accept me as some sort of companion and eventually stopped wondering about her lost husband.

This lasted until Stage 7. Oddly, as she was wheelchair bound, being hand fed, and sleeping quite a lot. Although could rarely speak coherently, she actually started to call me by name when I came to see her every other day at her MCF. She would also refer to me as her husband. Sadly she has become non communicative and does not refer to me at all verbally, but still shows that she recognizes me as someone she knows well in her actions and her incoherent mumblings.

Hope that helps just a bit. 

hiya

https://alzconnected.org/discussion/66845/an-answer-for-hiya-about-my-dws-forgetting-who-i-was

Thank you so much for your response. My husband first confused me with his sibling. Then he knew he knew me but didn’t know our relationship. We have been married over 30 years so I get photos out to help with connections. Sometimes it helps but sometimes it causes more anxiety so I’m deciding it may be best just to go with the flow. During the day he seems like he does know, it mainly occurs 4.00 pm and after. I’m sorry you and your wife are going through this awful disease. Prayers for you both.

Ed1937

Hiya, it sounds like you want input from others too, so I'll chime in. We were from Indiana, and we had a son visiting from Florida. I think she was probably stage 4 at the time. My wife, my son and I were sitting around talking for some time, when she looked at him and asked. "How are your parents?" He just said they were fine. She didn't know who he was. Another time she was lying in bed, and a daughter was visiting. My wife (stage 6 now) asked her to lay down beside her, just to talk. Then my wife said "Did you hear what Jennifer did?" Our daughter said "I'm Jennifer." My wife asked her why she would say something like that. Those two instances were the only two times she didn't know family members. Later in the day, or the next day, she knew everybody. She knew me until she took her last breath.

But there was one time I'm not sure she knew who I was. She had a UTI, and spent three days in the hospital. She was totally confused. So I've always tried to stay on top of UTIs since then.

hiya

https://alzconnected.org/discussion/comment/186500#Comment_186500

Thank you, Ed for sharing your experience.

M1

Hiya, just to chime in that this is a common and painful experience. My partner knows me by sight but not by name any more. We've been together for 29 years but she has completely forgotten our history, will ask me how we met and how long we've been together. Has known my kids since they were 3 and 4, will ask me now if i am married and have children. It's the worst ghosting I've ever experienced. I am sorry it is happening to you too.

hiya

https://alzconnected.org/discussion/comment/186525#Comment_186525

M1, thank you for sharing your knowledge and experience. May I ask what stage your partner was in when this started happening? I’m sorry you and your partner are on this journey.

M1

Hiya she was probably late stage 4 edging into 5 when this started happening. It was part of what pushed us to memory care. It was intermittent at first,and kind of surreal- twice when i was sitting in the living room she told friends on the phone that i had left her and that she had someone else staying with her now. I came up from exercising on the treadmill one morning and she had gotten my wallet, pulled out all the credit cards, driver's license, etc. and asked me whose they were. I went for a medical appointment one morning and within thirty minutes of my leaving the house, she called me saying that she had found a suitcase with my name on it in the basement. She apologized, saying she didn't know why she had it, but would be happy to return it and would love to get together so that she could return it and we could catch up.

All of these gutwrenching, of course. It was threatening to come after me with a knife when i wouldn't let her drive that was the final straw, our doctor was firm with me and insisted that i quit trying to cope by myself at home. Now there is a whiteboard in her room that usually says, "M will be back tomorrow." She'll look at it and ask me, "who is M?"

hiya

https://alzconnected.org/discussion/comment/186580#Comment_186580

M1 you have been through a lot!!! Thank you for sharing with me. I wish this hadn’t happened to you and your partner, but it does make me feel not so alone on this journey. Stay positive

Pat6177

This has been a big issue for us in the past week. I think we are in Stage 5. Months ago, DH asked me what our relationship was. Since then, he certainly has seemed to know me, calling me Pat, not questioning anything. Then in the past week, he has asked me “Where’s Pat?”, “Did you find Pat?”, “Who’s here?”, “Are we married?”. And this seems to come and go. When I tell him I am Pat or yes we’re married, he’ll say how confused he is or that there’s just too much info floating around in his head. I can tell how uncertain he feels and how distressed he is that he can’t sort it out. I was thinking it was sundowning but this morning after we woke up and before getting up, he asked me what my name was. On the other hand, he knows my birthday is coming up and asks me multiple times a day when my birthday is. And I find it’s disconcerting to not know on a moment to moment basis if he knows me and our relationship or not. I need to stay light on my feet to be able to respond to him as if it’s normal for him to ask me where Pat is. I’ve been telling him I am Pat but I am starting to wonder if I should start saying she’ll be back soon. But then what would I say when he asks why I’m in his bed? Sigh

Ed1937

Maybe when you walk into the room, say "Here's your beautiful wife, Pat"? It can't hurt, and if he hears it enough, maybe it can help.

GiGi1963

I don't think my DH knows my name or that I am his wife. He asks where is his wife. I say I am your wife. He then asks my first and last name. He will either believe me or reject me as his wife. When this started he didn't want to sleep with me. Now he does because he is very tired. It is also troubling when he thinks I'm a guy! He never calls me by name and tries to pay me for any meal I fix. I've just accepted this is new reality.

hiya

https://alzconnected.org/discussion/comment/186834#Comment_186834

Oh Pat, yes I relate so well to your situation. Last week my husband was confused daily on who I am. This week is a little better but I know it’s just a matter of time until it happens again. The biggest shocker was when he asked ‘who is that girl in the kitchen?’. It was our daughter with a hat on. The hat just threw him off but it was a gut wrencher:(. My husband definitely gets more tired nowadays and goes to bed around 8. I stay up to get some time to myself but on occasion when I go to bed at midnight, he is getting dressed to get up!! Thankfully, he usually falls asleep on the couch. I used to try and get him to go back to bed but have learned letting him sleep in the couch is easier. I wish you were not in this situation. I feel I cope pretty well overall but for sure the tears are happening more often. So thankful for you sharing. It feels a relief for me to write my experience on here and hear from so many wonderful, people. Hugs

charley0419

https://alzconnected.org/discussion/comment/186879#Comment_186879

My wife in beginning stage but I see the changes , and after 54 yrs it’s breaking my heart. Not same person. But this group does help

SDianeL

My DH, Stage 5 has started tipping me for doing things for him and he's telling me I'm so beautiful several times a day. He recently asked how we got back together. He doesn't know the names of our children or grandchildren. He doesn't recognize anyone in pictures, including himself. He also gets up in the middle of the night and goes to the sofa. I do get him back in bed eventually by telling him it's not time to get up yet and that when the alarm goes off, I will wake him up for breakfast.