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This has not happened yet, but it is the one thing I am most terrified about at this time. She has mistaken 2 of my children for 2 of my siblings, so I am starting to get extremely nervous that the day will come when I walk in to her room to start her day, and she won't know who I am.

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I am sorry I haven't responded to each of you. I spend very little time online anymore, and to be honest, did not expect so much support. I am overwhelmed by the support, and it is very much appreciated. I am aware that my situation is nowhere near what some of you (wow, there are A LOT of you) are going/have been going through, and your insights are invaluable. I am sure that I will be using your experiences and knowledge as time plods on, and for that I cannot express enough thanks. My thoughts are with all who have to travel this journey. Hugs to all
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It's sad to say my husband hasn't recognized me or anyone in the family for almost 2 years. The only thing he knows is that I'm someone who takes care of all of his needs. He goes to adult daycare and returns home in the afternoon which gives me a break daily with the exception of weekends. This is a serious disease my husband doesn't even know his own name.
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Sadly, it happens but you get used to. They can’t help it. My mom calls me by one of her brother’s name. And, yes, I answer to it without correcting her. I know she means to call me by my name, but her brain isn’t functioning well. She absolutely knows I’m one of her 8 daughters but is fuzzy on which one. It’s so saddening, but it is part of this awful disease.
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Her not remembering you may never happen. If that time does come, it may be devastating for you but not for her. For her she may see you as someone she is familiar with, even someone she loves, but not remember the relationship. So, realize your presence is felt and it matters to her, and you, that you’re together. Your presence will most likely be comforting to her. Being forgotten by a LO is not a reflection on you or your relationship, it’s a sign of the relentless progression of the disease.

So what do you do if that time comes? You may have to re-introduce yourself every time you see her, which, because she lives with you, will be every day. Something like, “Good morning mom, I’m Jane, your daughter, how are you today?” Even that simple intro may cause problems. She may deny that you’re her daughter. In that case, distract her- offer to go for a short walk or get a drink. Don’t try to convince her otherwise. You may have to revert to simply saying, “Good morning, I’m Jane, how are you today?”. Don’t test her. Asking, “Don’t you remember me?”, or “Don't you know who I am?”, will put her on the spot and cause her embarrassment or anxiety.

Relate to her in a dignified way. I realize your mom is still living with you, but I read posts where the LO is in a care facility and no longer remembers their family. The family may ask, “Why should I visit, my mom no longer remembers or knows me”. This is missing the point. It’s no longer about the caregivers, it’s about the patient and the dignity of life, however, fleeting that may be. Although their LO no longer knows who they are, they, the family, knows who she is. They know the importance of their LO in their lives. That importance needs to be reflected in continued visits.

So keep your mom’s dignity in mind throughout this difficult journey. And touch is important. Holding hands and hugging will always show her that you care.

My wife was in memory care for many months and when I would visit I would merely say, “Good morning, honey, how are you today?” I never mentioned my name or our relationship. When I left I would always say, “I love you”, and she would reply, “I love you more!”. I don’t even know if she knew who I was! But I was someone to her.
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lealonnie1 Sep 2022
You touch on an important point; dignity & human touch. There are those who insist on treating dementia sufferers like toddlers, which is patronizing & condescending. There are others who insist if they don't know us, why bother visiting? Because they DO know us and they DO respond to human touch and to love. Every single time. We had a poster here who insisted it was pointless to try to interact with a dementia patient, that it was a 'waste of time' and he was wrong about that, as you have so eloquently pointed out. Showing someone love is never a waste of time, no matter what brain issues they suffer from. They KNOW we're there; they KNOW we love them, even when they've forgotten who we are. Human beings respond to touch & they respond to affection, period. Until our loved ones breathe their last breath, they're alive & deserving of us showing them love & dignity.
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It's going to happen, so be prepared.

However, sometimes it comes and goes, depending on the circumstances.

When my mom lived with me, she often thought that I was a nurse, a man, or the another "Andrea" (my name). She thought that she was in a nursing home, and that lots of other people were there.

Now, she is in a nursing home, and she recognizes me every time. It's because I visit often, and made it a point to talk to her and do things to keep her very engaged.
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Don't worry, she will always recognize your heart, she will always know that you are someone who loves her, even if she forgets your name. I stopped calling my mother Mom and used her name because I thought I might be confusing her if I said Mom. It also helped me cope better because even though she was still my mother, she was not the same "Mom" as before. Once she said to me, "You are such a good person, your mother must be proud of you." I said, "My mother taught me how to be a good person." It broke my heart but in a strange way I cherish that day. Dementia patients "feel" love. My mother also kept her sense of humor right to the end.
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My mother was 95 with advanced dementia when she passed in February. She never didn't know who I was, fortunately, but for years she'd introduce me as her "mother" rather than her daughter. The first time she did that I thought she was joking and turned to look at her, expecting to see her laughing. She wasn't. I knew then and there she had dementia and was confusing our roles.....I became the mother as she regressed to being the child figure.

It may never happen that mom doesn't recognize you. It's more common with Alzheimer's than the other dementias to forget loved ones faces. With all dementia, however, they do regress in time to different decades when they didn't have children, so that's a reason for forgetting who we are or not recognizing us. It constantly changes, too, so tomorrow can be a whole new scenario for mom than today was.

I hate dementia with everything in me. I pray you don't see your fear come true with your mom, and that she knows who you are forever. Best of luck.
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It will happen but, dont get sad cause you can still treat them the same and tell them that you are a new best friend and you will help them as much as you can. Life goes on but for them their mind has stopped and all they want is for you to be there for them no matter what....
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I so wish my Mother did not recognize me. She showed the devil in her to me today. It has gotten to the point I can only stand a max of 10 minutes with her. At this point I can do nothing right. How is it I know it all? I left today thinking I wouldn't be able to do this much longer and in it all alone.
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kenobuddy Sep 2022
Yes , its sad when they get to some point and either treat you with anger or not. You have done all you can and it is not you, its the illness. Just pray and God will show you how to deal with it, he has for me.
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My Mom 5 years in MC after many years of in home help, has not known me for years, she does know I am someone she is happy to see and visit with. About 8 months ago she was lamenting she did not know the names of any of the people here and why didn't she. This was unusual because usually her conversations are just nonesense ramblings, so I said well my name is Cyndi, do you recognize that name. To my shock she said "My daughter's name is Cyndi" So I said I Am your daughter! I will always remember her reply "Well what have you done to your hair?" - I am pure white haired not the brunette she knew. I got old Mom I said, and then she was gone again. We have not had another lucid conversation since. When your LO does not recognize you just say I am a friend here to help. There is no correcting, bringing them back or reminding them-their brain is broken, can not be fixed and will only continue to fail. If they are afraid or scared of you, leave the room for a few minutes and when you come back in say something like Hi, I am here to help you... so they know you are a friendly person. Worrying about what will happen is not productive, I would suggest trying to educate yourself. The 36 hour Day is an excellent book (like what to expect when you are expecting) and Teppa Snow has outstanding educational videos, check her out. PLEASE have plans in place for help, if you get sick, hurt or just need a break it is too late. Do not wait to get all the legal papers, backup caregivers etc. Time is of the essence. Good luck, God bless and breathe.
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The 1st time my mother didn't recognize me I walked in the nursing home and she said "oh my look how beautiful you look! You haven't changed" which was odd because my narcissist mother had never said that to me. Then she said how is your mother? It dawned on me that she thought I was my cousin who she had seen maybe twice in the last 50 years. She appears to be living in her 20's again. So I wouldn't have been around then. It was really crazy when it happened. But she seems happy to be back in that decade.
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First I think you should seek out more information on your mothers stage with this disease. This will give you an idea on what to expect and be able to plan your strategy. You will know what's her brain is doing and be able to understand it a bit more from her point of view.
She is still your mother and she will need your care whether she knows you're her daughter or not. Since you seem aware that this is coming why does it frighten you? You should think about how you would feel if you were in her shoes. The disease is destroying her brain, and her understanding of who she is is determined by her brain so she will change.
But she will still need you. If you need more help it may be you can hire someone to come in and help you with feeding her and bathing her, and all other help you give her now. You can ask her doctor where you can find a health aide to come to your mother's home.
Her doctor can also put you in touch with a social worker who will also know where you can get help paying for a health aide for your mother.
Having help will also help you get some rest.
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Dementia can be overwhelming at times. My husband has had dementia for seven years. This has been worse over the past two years. He no longer knows me or our children. There are still good days, but they are different. Wherever his mind has gone, he seems to be in a happy place most of the time. In his own way, he is still kind and loving. The person you knew and loved is pretty much gone. Embrace your loved one even though she is different now.
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You are not alone. But some if the best posts suggest doing what will feel best for LO. Some describe this Validation Therapy. My mom suffered from Dementia from 86-100 yrs old. Once she was distressed as my dad (who had died years before this incident) was late getting home. I agreed to call him at his office to see what was up. It was a Saturday and in the 1950s he worked Saturdays. I told her no one answered so he must be on the way home. Another time my brother and sister-in-law visited. My mom thought my brother was my dad and angrily accused my sister-in-law of being his mistress.
Point: respect your LOs reality. It’s all they’ve got. Instead of fruitless attempts to persuade, say things that will focus on your love and care. And, deal with any hurt feelings in a way that doesn’t blame your LO. Fortunately my sister-in-law was fond of my mom and was able to smile about it with no rancor.
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As my mother has always been difficult, I felt relief when she no longer recognized me. No more blaming me for making her old and doing everything wrong. She believes herself to be younger than I am so I can’t possibly be her daughter. I’m just some old lady who pops by weekly (she went into care 1 year ago) to bring her things, chat and read her mail. I’d much rather be considered a pleasant visitor than her rotten, thieving daughter.
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My 95 y.o. mother fluctuates back and forth between knowing who I am and insisting that I'm not who I am. Either way, it doesn't bother me any longer.

I started experiencing anticipatory grief over 2.5 years ago after she broke her hip and her cognitive ability took a sharp decline.

I've already burned through the anticipatory grief stage and now I'm just numb from being her sole caregiver and watching the slow progression of her decline.
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ChirsM Sep 2022
You're doing your best, and you understand the situation well. This is good for you and for your mother. Take comfort in knowing what to expect so that you can plan ahead a little. If you can get someone from the County to provide some respite by sending a health aide that would be good. Her doctor may be able to give you more information. I had a health aide come in twice a week and aside from her friendship with me and my LO it also allowed me to go shopping, and to my doctor's appointments knowing he was ok and safe for these hours. Take care of yourself!
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This won’t apply exactly as my mom is in a MC and not living with me, but what I do is wear the same outfit every time I visit. I also wear my hair down and it’s big loud recessive gene hair that’s always been a different color from the rest of the family. Visitors have to wear masks ( residents don’t ) so I have a fun dog mask that has been really popular with the residents. Since I have a signature ‘look’ I think this has kept me recognizable to her for longer. She still has forgotten who I am here and there but huge thanks to this forum I know what to expect. For now if I wave my hair around she remembers who I am lol. My visiting outfit is also colorful.

This is tougher if you live with your mom, but maybe there’s some ‘signature piece’ you can wear around her, especially if its tied to the past? Like hair ornaments or shirts in a color you wore a lot as a child, or if you have wild hair like me just let it be free…you get the idea. Won’t stop the march of this hideous disease but it’s something.

Have to add that after being the chipper entertainer in the MC with my mom I go to my car and usually cry. We just have to get through this.

Big hug, wishing you the best!
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ChirsM Sep 2022
Exactly! We just have to get through this.
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My husband went through this with his mother, but he was not her caretaker. He left a visit with her and came out to the car to cry: I really couldn't say much, because it was our first experience with Dementia. I couldn't even imagine how painful that experience was.

Flash forward 40+ years and I was laying out family pictures on the dining table and he tells me he can't distinguish his daughters: I then knew what I only previously suspected. One issue still haunts me; was his vision impaired by his diseased brain or do the eyes deceive the brain?

I'm guessing that setting out framed pictures with names on them would help, but that's only a guess on my part. Or, maybe wearing name badges would help?
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ChirsM Sep 2022
His doctor will be helpful with some of your questions. Knowing what to expect is also helpful. Read up on stages, and how the symptoms reveal themselves. the website MyAlzteam.org has good information. Look for it.
You're doing well in caring for your husband!
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I truly understand ❤️‍🩹. She is probably beginning to live in her past. That old saying “ once an adult , twice a child” is so very true! More than likely you may not be able to convince her that the names are misplaced..I would recommend for the sake of peace,( it will frustrate and upset the two of you if you’re always correcting ) so just go with flow.
My mom forgot my name, so often I’d ask her what’s my name and at early onset she remembered. Her span of dementia was from about 1996-2005. We’ll to make a long story short.. she began calling me “ that girl”😊 so until her death I was “ that girl” and that was alright with me!
So if you have to make a new memory…. Then go for it! Even though the tears may flow.. try to make them happy memories of the woman she becoming because as much as you may wish,😞 you won’t be able to change her back. Remember just as she is changing, so must we.( so very hard yes, but doable, in baby steps).
Wishing you the best outcome💕
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This can be a very frightening, exasperating, distressful experience.
It is good that you are trying to prepare yourself in the event that it happens. Speak with the pts doctor for any specific guidelines he/she may provide you re the patient 's specific illness. In the meantime
some general guidelines include remembering that safety, the PT and yours is a priority; try to stay calm, you may try to redirect pt as to who you are but avoid forcing the subject or making the pt or yourself agitated. Sometimes simply redirecting the conversation ( or name) helps...
Remember too that sometimes what or who the pt " knows" may come out " scrambled".... Word scrambling is one often observed experience.
Other suggestions to support yourself and the pt may come from a qualified in home health providers if you have these in your home ; and as mentioned earlier speak with the pts physician for referrals.
Prayers and peace for you all on this beautiful yet exhausting journey with a loved one...
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We have been married for 67 yrs. My wife has been in
dementia for over five years.
After three years she didn't know me for short periods of time.. Then there were three and sometimes 4 Dave's, its called CAPGRAS. She lives at home and those days are rough but I tell myself that's not my wife. The next day all is OK which makes it easier to forgive and forget.
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If she doesn't remember you at some point, just remind her and act natural so to not embarrass her. Make a joke of it, maybe that your hair looks different or you never wore blue before and that why she didn't recognize you. She may not forget who you are since you are always there. Only once in the 10 years of my mom's Alzheimer's did she not know me, asked nicely who I was and why I was there. Never again for 5 more years. She asked another time toward the end if I had ever been young and I felt she was thinking of me when I was younger. I showed her photos of me back then and she said that's how she remembered me. Then we looked at photos of her as a young woman and joked about how we'd both gotten so old. She did not know anyone else for many years, but talked about my deceased dad until the very end. That had always been a worry of hers, that she would forget him.
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You play along. My Aunt thought her son was one if her brothers. He played along because that is where she was in her brain, when she was a child with 5 brothers. I think my Mom, in the later stages, thought I was her Mom. When asked about her kids Mom gave the woman asking the question a look like she was nuts and said "I have no children". I was standing right there. A man at Church called me by my Moms name, thats OK, he got the right family. Not saying it doesn't hurt but that part if their lives is gone. I believe they revert back to childhood and everything before that is lost. My Mom, after a point, never mentioned my Dad, my deseased sister or my brother who lived 8 hrs away. Only me and my youngest brother who lived 1/2 hr away.
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That happened to my mother, while she was in a memory care facility. She no longer recognized me as her daughter. But even with advanced dementia, I think she recognized me as someone she trusted and loved. It was difficult to know, as she was no longer verbal at that point. I channelled my love for her and tried to be as positive and cheerful as possible when visiting her, even though she couldn't give much back at the end. When people have dementia, their mental and physical state is likely to decline over time. You have to be prepared for it. Towards the end, my mother "forgot" how to walk and eat. She had to be transferred from bed to a wheel chair, and sometimes it took two people to do it, if she didn't assist. She had to be fed (soft foods, because she was pocketing her food in her cheeks). Have a Plan B, if the caring gets to be too much for you to do alone. There are two basic options: in-home caregivers to help, and memory care/skilled nursing facilities. Get connected with a local social worker to discuss your (and her) options. All the best to you and your family.
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I just reminder her who I am. Than she smiles at me and says, I love you honey. Its was hard the first few times my Mom didnt recognize me or thought I was someone else. Its a daily morning , afternoon, nightime event now.

It will be OK.
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The first time it happens it is devastating. While I have never really gotten used to it, it does get a little easier to take. Sometimes my mom thinks I am her mom. Probably because I take care of her. She may not recognize me, but she needs me and I am going to be there for her no matter who she thinks I am.

Sometimes I feel that Dementia is harder on the family than it is on the person with Dementia.
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Donttestme Sep 2022
I totally agree. Dementia is hard on everyone, but those “left behind” have so much more to deal with.
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Usually, when my mom had Alzheimer's, and was living with my husband and me, she recognized me. However, there was a day when I gave her lunch, and she said, "Thank you Dear. You're a nice girl. What's your name Honey?" And I said, "Mom, I'm your daughter," and I told her my name, I said, "You knew that." And she said, "No, I didn't." Ironically, it was the same day that my husband's mom, who lived in Assisted Living, didn't recognize him, for the first time. We both exchanged sympathetic looks, as we learned that it comes with the territory. For his mom and mine, their recognition of us was inconsistent: some days they knew us and some days they didn't. We'd just remind them who we were, and they accepted that. They always knew that we were nice people,(whomever we were), and that was really important. Hope this helps.
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It happening to me now. There are days where my wife thinks I am Someone else. It can be frustrating but I just go with the flow. I found it is best to try not to correct them. It is sad to see your loved one fade away. I try to make the best of those times of clarity. There is not much you can do but to stay positive and not blame yourself.
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Katefalc Sep 2022
It absolutely devastated me when my husband got out of our bed and said “ where am I? Does my wife know I’m here with you? Who are you ?” My life was never the same. Now he’s gone and it plays over and over in my mind. Sending you prayers and strength.
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Yes, that is a very common thing. Just keep putting yourself in that person's shoes and imagine how you would feel. Think of this: You will look like a stranger to her. Sometimes she may not even know where she is. The room she wakes up in may not look familiar to her. So, keep that in mind. She may be really scared to suddenly not recognize her surroundings or any of the people around her. When you feed them and help them bath and change their clothes, they will see you as a friendly person, but still she may be afraid.

A friend of mine said his father one day didn't recognize him any more and began yelling for help and screaming at him to leave his house. He hadn't began thinking of it so he was unprepared when it happened. Most instances aren't as extreme as that. People just generally don't remember anyone's name.

If or when she stops remembering who you are, you might have to repeatedly remind her who you are. Another thing that can help is trying to determine what memories she has. My friend's dad I mentioned earlier was a drum major for his college band and had very vivid memories of those time. He lit up when speaking about that period of his life. He didn't remember tings in current time. But those older memories seems to remain strong.

Another helpful thing is pulling out old photo albums of the family socializing. That can sometimes help a dementia patient. Seeing the old photos might be good medicine.
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Good Morning,

I simply hold their hand as love can be felt.

I heard a beautiful story on a Religion in the 21st Century video by Fr. Himes of Boston College. It was touching. As his mother neared the end of her life, she had moved to be closer to him in Boston then onto a home; dementia of some sought. He said his mother didn't remember his name but one day she said to him, "I don't remember your name but I know you are someone that I love very much". I thought it was so beautiful. It makes me fill up as I write this.

I hope this brings you some consolation...
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db5555 Sep 2022
such a lovely memory and so true. my loved one is in a home with dementia. he 'recognizes' me although doesn't always know my name. i don't push him to remember however he also says similar things - that he loves me and knows i love him and take care of him. i believe there IS still some memory there because he often comments about us getting married and brings up things from his past. i also truly believe touch is as important as verbal communication. i let my loved one do the 'talking' and i always respond as best i can - usually with 'yes' and 'no' gestures. i want him to feel that what he's saying makes sense (sometimes it does something not). whether we sit together or are walking around i always hold his hand/arm and show him affection. there's no doubt this makes him feel secure and loved which is all i could want for him. i wish all of you the very best with everything.
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