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CQCumber Asked October 2020

Mom with dementia/Alzheimer’s gets upset and cries when she asks who I am and I tell her I’m her daughter. What should I say instead?

My mom’s condition is deteriorating and now she doesn’t recognize family members most of the time. Sometimes she’ll recognize me for an hour in the morning but that is all. She is 75 and started having symptoms of Alzheimers about 10 years ago. When she asks me who I am, I tell her I am her daughter and she starts to cry because she doesn’t understand why she doesn’t know me. She asks why nobody told her she has children. She has a hard time accepting that I am who I say I am. She doesn’t recognize herself or any of us in photos so showing her photos doesn’t help. Should I lie and tell her something else (what??) so my answer doesn’t cause her so much emotional anguish? I don’t live with my parents and the hardest part is that when she doesn’t recognize my dad she gets scared and tries to make him leave the house. She gets very upset when he says he’s her husband. What should my dad do when she gets scared and tells him he needs to leave because she doesn’t know who he is? She can’t be left alone but her reaction to a strange man in her house is reasonable; I would tell a person to leave my house if I was there alone and didn’t know them. Especially a man!

sjplegacy Oct 2020
Your situation is so heartbreaking but so common. I'm providing a link that addresses this. Meanwhile don't mention your relationship. "Hi I'm Mary.
I just wanted to stop by and say hi". Or, "Hi I'm Mary, I'm a friend of (your dad's name, not his relationship). This is very hard and emotional for you both. I wouldn't want to represent myself as a "friend" of my dad, but using the word dad could also confuse your mom. AD is such a debilitating and insideous disease. As a caregiver you have to form a totally different mindset to interact with your LO. Go to the link below. Dr. Natalie Edmonds discusses this very issue. She has many, many videos (Dementia Careblazers) that discuss all aspects of dementia.

https://www.youtube.com/watch?v=9rmpuF_D1hw

LoopyLoo Oct 2020
My friend's MIL had dementia and asked multiple times a day where her husband was. He had died several years prior.

Friend would tell MIL that her husband was in Heaven. Problem was, MIL would dissolve into tears. It was as if she was hearing the news the first time ever... in her mind, I guess she was. She'd ask multiple times a day, be told he was in Heaven, and she'd cry. Each time.

Obviously the honest approach wasn't helping. Time for the aforementioned "therapeutic fib". Instead of being in Heaven, he was at the store or at work. Of course it felt wrong to lie to her, but it was for her sake. She'd still ask about him 1000x a day, but did not have the crying and upset the real answer gave her. It was either lie or her have constant breakdowns. Wasn't a tough choice.

As for your situation? Try "I'm the nurse here to help you." Your father could be the doctor who makes house calls.

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my2cents Oct 2020
Tell her your first name. Don't get in to the family tree. With pictures, find some very very old ones and see if she recognizes anyone - she might surprise you. Memories seem to be erased starting with recent so older ones are the last to go. If she recognizes you as a small child, then tell her it's you. Just don't do into too much detail.

Has to be very difficult for your dad to see her losing memory of him while he's there with her each day. Maybe he could try the first name only thing with her too. If that doesn't work, tell her 'you're just having a little trouble remembering me, but we've known each other for years. I'm here to help you out'.

This is simply the cruelest disease out there - for those on both sides of it. Each case is different, yet similar. I hope you all find some words that bring her comfort.

AnnReid Oct 2020
Can you leave your feelings about “lies” behind and say “I’m someone who has always loved you a LOT, and I’m SO HAPPY every time I get to see you!”?

Your job, as a sad but very loving child of someone whose brain is failing her, is to give her safety, peace, comfort, and love. Attempting to convince her of something she can’t believe presently serves to make both of you more upset and uncomfortable.

You have wisely observed what is happening in your mom’s dealings with your dad. She is frightened and unnerved by the presence of someone she doesn’t know, because tragically, her damaged brain can’t access the information she used all through her life to recognize and interact with people she loved, and who loved her.

Consider yourself as someone else who is helping her to accept love and support from someone whom she doesn’t “know”. When you consider interactions with her this way, it’s more possible to understand that attempting her to accept your version (I’m your daughter!) isn’t possible, but accepting your love as a compassionate and friendly person whom she doesn’t have to identify is more accessible to her.

That’s no “lie” is it?

I know how painful this is for you, and how disorienting. That doesn’t make your unfailing love for her any less important. Hoping you will find peace with doing your own best with the challenges you’re all experiencing.

Geaton777 Oct 2020
On this forum I was introduced to the term "therapeutic fib". Puts some of our necessary actions into a right perspective. May you have peace in your heart as you venture on this journey with your family.

AlvaDeer Oct 2020
I would like to recommend a book for you, likely cheap on Amazon used as not new, called Still Time, by Jean Hegland. She, the author, worked in memory care as a volunteer. The book is about a Professor who is in Memory Care and is told from his perspective. It is a lovely book. Oliver Sacks spent his entire life studying the mind. His opinion was that they have a REAL world, it just isn't like ours. I think when you say "I am your daughter" it beings your world into collision because she understands she has lost a very important memory, and it briefly hurts her. Hurts you as well. I so agree with some here who have suggested you tell her that you are (give your name), and that you love her and so enjoy visits with her. There is very hard for you, I know. It is such a loss to have to lose them while still they sit before us speaking. I hope you find comfort.

againx100 Oct 2020
How hard, though fairly common.

The things that upset her can easily be changed. As stated, just give your name. If she needs more than that, add something like "and I'm here to help take care of you today". Or I'm a nurse, if she needs a label to feel like it's really OK for you to be there with her.

I think this is too much for your dad. He should do the same as you - don't try to explain that he's her husband, etc. She doesn't appear capable of understanding that.

I think she could benefit from some anti-anxiety meds. Sounds like she's very anxious, etc which has got to be hard for her. Who wants to feel scared and confused all the time? Maybe there is something she can take that will help her feel calmer and happier.

Grandma1954 Oct 2020
Tell her your name.
Tell her that you love her
Tell her that you will care for her.
Tell her that she is safe.
When this happens to your dad he should do the same.
Tell her ..My name is "George"
I love you very much
I will take care of you
You are safe.
Hold her hand, give her a hug.
the other thing he can do if she insists that he is not her husband he can tell her "George" went to the store and he will be back in a little while. She will calm down and eventually she will realize he is her husband..until it happens again. When it happens again you go back to step #1 and repeat the process again and again. He can leave the room if she insists and if it is safe for him to do so. Maybe leaving the room and entering again might help. (if possible leave through one door and come back through another.)
disgustedtoo Oct 2020
We haven't reached this point yet - I haven't been able to visit my mother since lock down started mid March, except one brief visit outside around her birthday. Being in the heat, masked, 6' apart with not one but two aides, I am not sure she even knew I was there. I have been concerned with the "out of sight out of mind" issue - she hasn't seen my brothers in long time and at some point stopped asking about them. I was worried the lack of seeing me and progression of dementia would fade me away like Marty in Back to the Future... However, in a good discussion just the other day with a staff member mom really likes (and the feeling is mutual), she does still remember me.
Oh, her and those CATS! :-D

This staff member took a picture while I was there (holding up my kitty themed mask of course!) and the nurse sent email reply to my query - yup, she knew who I was, but wanted to know why I didn't want to come in to visit. :-( She laughed when they showed her the mask.

Anyway, I think just stating your names and that you are there to care for, protect and love her should be sufficient. It's hard when they don't remember you anymore, but YOU still have the memories of the good times past. Names, reassurances and love only. She doesn't remember the relationships and since they seem to agitate her, or at least being unaware of them does, then just leave that part out.

I was also thinking perhaps dad (might work for you as well) could get those stick on name-tags to wear, so she can see the name and make him a little more "official" as a care-giver. Being a man, yes, she could be more frightened, since she's forgetting who he is, but he (and you for backup) can repeat often that he is here to care for and protect her - like a security guard, or a guardian angel.

If the stick on name tags don't work (sometimes they just don't stick and they aren't really reusable), maybe see if you can get some more "official looking" badges made up, to convince her you are both employees of some kind, there to help. (Example:
https://www.amazon.com/Avery-Self-Laminating-Name-Badges-2-1/dp/B00007LVDE
They have these at staples, but more expensive.)

Have them boldly show your names and in smaller print some kind of made up ID # and a phony care company name? Worth a try, esp if you can find a less expensive one (such as this one, about $14 for 25:
https://www.officedepot.com/a/products/535632/Office-Depot-Brand-Laminating-Pouches-ID/
More searching might find something that works and is less money,)
Isthisrealyreal Oct 2020
I am so sorry that you are dealing with this dreadful disease.

One thing that I did with my grandma and granny, when they asked who I was, I would introduce myself and say that I am someone that loves you very much and came to spend some fun time with you.

That worked every single time. They could feel that they were loved and I did my best to have a good time with them.

Making them happy in the moment is the best we can hope for at a certain point.

I have to tell you that it does get easier dealing with the fact that you, as a daughter, have disappeared, but making them laugh or smile in the moment is one of the greatest feelings ever.

I played catch with a stuffed animal with my granny and she would be smiling from ear to ear, we would all be laughing at the fake throws and bad throws or good catches. She was completely unable to do anything for herself, stuck in a wheelchair, but she could toss that stuffed animal.

Find something that brings both of you joy and love her in the moment, it will give you many happy memories. Treats that she likes are always good.

Great big warm hug! Such a rotten disease.

Taarna Oct 2020
It is time to tell comfortable truths. Tell your mother that you are a friend or that you are from the church (if you belong to a church) and are making visits - since most adult children end up becoming friends to their parents. Tell your mother that "the man" is your father and he is coming along with you for a visit. Maybe she can relax knowing that you are both safe people and can enjoy a "visit" even if she can't remember the past relationships.

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