"....never-ending tape loop starts again..."

Welcome to dementia-ville. Familiar territory for many of us. If it's new for you, I can understand that "cringe" you're feeling. The person you used to know is gone. You have to make a mental adjustment to accept what's left. She can't do anything about it. That part's yours. If you're hoping for normal adult conversion, from your description I suspect those days are over, likely permanently. I suspect this is who she is now and that's it.

Couple of ideas, though......

Typically the worst of it is in short-term memory...the stuff that just happened. Suspect that's maybe why the "loop" you described keeps coming back to "Where am I?" I suspect that, to her, whatever your response may be isn't much more than sound coming from your mouth. I suspect there's no short term information retention going on. She likely can't remember what you've said long enough to put any of the pieces together. Her brain can't process it anymore. When you're done speaking, it's as if nothing was said or explained and the original confusion remains. I also suspect that she receives comfort from your voice and the attention it implies, so it's not a complete loss. It's hard to tell exactly what is and isn't going on in there moment-to-moment. I'd keep talking anyway. No way to make a mistake. If you say something bad, she won't remember it in a few minutes anyway. The most important thing is that you're there and interacting.

I'd also suggest attempting to break her out of the short-term-memory-cage you described by attempting to spur her long-term memory. Talk about people, places, events from her younger days.....even all the way back to childhood, if you know those stories. You may find many open pathways for conversation back there. If you don't know any personal stories, talk about national or international events that occurred when she was, say, 18 years old or so, and try to elicit memories from those times. However, even if you do, those, too, will soon become repetitive.

If, by "ALF", you mean "Assisted Living Facility", I would be certain that the level of "assistance" being provided is adequate. I feel familiar with kind of conversation you described but have no way to tell how far down the road she is mentally. Does she have an attendant to be with her? Can she handle her own hygiene? Can she be trusted not to do unsafe things?

Wow! You nailed it for sure! I agree that she receives comfort from the sound of my voice. I could be reciting Jabberwocky. My counselor basically said the same thing, including the part about if I said something bad, she wouldn't remember it in 5 minutes. I know that she can't help it, and that there's nothing I can do to change her behavior. But, just keeping it real, it doesn't make it any less crazy-making for me.

I have had some recent success in changing my own behavior and beliefs. Meaning that I'm starting to feel that I don't have to oblige her attempts to pull me underwater. Meaning that I am asserting myself, instead of acquiescing to her requests as I would have done in earlier years. The other day I said, "Auntie, I don't have a lot of time to visit today, so you can ask Anne (her private duty aide) after I leave. Let's talk about xyz...". I could see her trying to get her brain around that idea, and she countered with, "Well, alright. But first, tell me where I am, and then I'll know.". I remained firm. "No, I am not going to talk about that." and then I started talking about something else.

One day, she just wouldn't drop it. She has always been stubborn and controlling. So I said, "Auntie, you seem tired today. I'll come back another day when you're more rested.". On the way out I told the nurse about her agitation, and requested an Attivan for her. Last March she was on hospice for 3 months, but came off it in June. She turned 100 in June.

We have private duty for her Mon - Fri. They have her on monitors at the ALF. All she wants to do is eat and sleep, which is how she has lived her life for the last 15 to 20 years. She doesn't even want classical music on the radio. She says she prefers it quiet. Thank God they all manage her hygiene for her. She lived with me for 15 months, and the hygiene piece was a nightmare. She never wanted to wash her hands (and she insisted on keeping her nails as long as a Super Model's!), and she continually had stool caked under her nails (and all over her underwear, and later on Depends) When I would help her wash her hands, she would always give me a ration. One time I said, "My goodness, Auntie! You don't want to go around with stool under your fingernails!". And she slatted from side to side like a bratty grammar school girl, and yelled in a sarcastic sing-song voice, "Yes I WANT to have stoo -OOO-oool under my fin - ger - NAY -
ells!". It is what it is. We can't get my mother (her sister in law) to bathe either, but that's another story from dementia-land.

Thank you so much for your response, it was very helpful.

Wow! You nailed it for sure! I agree that she receives comfort from the sound of my voice. I could be reciting Jabberwocky. My counselor basically said the same thing, including the part about if I said something bad, she wouldn't remember it in 5 minutes. I know that she can't help it, and that there's nothing I can do to change her behavior. But, just keeping it real, it doesn't make it any less crazy-making for me.

I have had some recent success in changing my own behavior and beliefs. Meaning that I'm starting to feel that I don't have to oblige her attempts to pull me underwater. Meaning that I am asserting myself, instead of acquiescing to her requests as I would have done in earlier years. The other day I said, "Auntie, I don't have a lot of time to visit today, so you can ask Anne (her private duty aide) after I leave. Let's talk about xyz...". I could see her trying to get her brain around that idea, and she countered with, "Well, alright. But first, tell me where I am, and then I'll know.". I remained firm. "No, I am not going to talk about that." and then I started talking about something else.

One day, she just wouldn't drop it. She has always been stubborn and controlling. So I said, "Auntie, you seem tired today. I'll come back another day when you're more rested.". On the way out I told the nurse about her agitation, and requested an Attivan for her. Last March she was on hospice for 3 months, but came off it in June. She turned 100 in June.

We have private duty for her Mon - Fri. They have her on monitors at the ALF. All she wants to do is eat and sleep, which is how she has lived her life for the last 15 to 20 years. She doesn't even want classical music on the radio. She says she prefers it quiet. Thank God they all manage her hygiene for her. She lived with me for 15 months, and the hygiene piece was a nightmare. She never wanted to wash her hands (and she insisted on keeping her nails as long as a Super Model's!), and she continually had stool caked under her nails (and all over her underwear, and later on Depends) When I would help her wash her hands, she would always give me a ration. One time I said, "My goodness, Auntie! You don't want to go around with stool under your fingernails!". And she slatted from side to side like a bratty grammar school girl, and yelled in a sarcastic sing-song voice, "Yes I WANT to have stoo -OOO-oool under my fin - ger - NAY -
ells!". It is what it is. We can't get my mother (her sister in law) to bathe either, but that's another story from dementia-land.

Thank you so much for your response, it was very helpful.

One time I said, "My goodness, Auntie! You don't want to go around with stool under your fingernails!". And she slatted from side to side like a bratty grammar school girl, and yelled in a sarcastic sing-song voice, "Yes I WANT to have stoo -OOO-oool under my fin - ger - NAY -
ells!". It is what it is. We can't get my mother (her sister in law) to bathe either, but that's another story from dementia-land."

Holy Mackerel! I don't know how people do it. That fact that she has lived to be 100 is a testament to your patience and good care. I'm glad you have the means to afford help. She is fortunate to have such a caring niece.

You said she doesn't care for the radio. Is it possible that she might listen to tunes from her youth? That might help her remember where she is now, so she won't keep asking where she is as often.

Music and the Mind: A Different Kind of Dementia Therapy

"Researchers have found a strong connection between the human brain's auditory cortex and its limbic system, where emotions are processed. This biological link makes it possible for sound to be processed almost immediately by the areas of the brain that are associated with long-term memory and the emotions."

A link that might be useful:

alzheimers.aplaceformom.com/articles/dementia-therapy-and-music/

I can relate to not wanting to visit. Although I don't have to get into the circular one-note conversations like those you have with your aunt; my mother carries on a conversation, I just have no idea what it is about and her responses will have nothing to do with anything I've said! Plus she usually doesn't quite know who I am either; most often might say that I am her sister, sometimes her mother, often not sure at all. I don't know if she gets anything out of my visits, or remembers them in any way. she's been like this for over a year now and I find it harder and harder to go to the nursing home to see her. It is like a chore to cross off my to-do list, like anything else I have to get done on my days off.

I wonder if we had had a more loving relationship would I be more or less eager to visit? As it is, I am the only one of 5 children who sees her regularly since I am the only one in town. One brother never visits or even inquires about her; the others have come about twice each in the past year. She had a personality disorder and was not the best mother (to put it mildly).

Other than keeping an eye on her care and filling societal expectations, my visits don't seem to have much purpose for either of us.

I was lucky in that her mental and physical status deteriorated so quickly from a series of strokes that caregiving at home was never an option that I had to seriously consider. She went from living independently to rehab to extended care to nursing home in short order. The worst time was in that first nine months when I had to repeatedly contact the nursing supervisors to address the fact that they weren't noticing as her care needs increased.

Well after all that, I guess I don't have any suggestions, but at least you know that you are not alone in your feelings either.

It is a funny thing about those fingernails. My mom has lately become combative about being bathed, and has slapped and pinched me when I try to trim her nails. Even just *gently* using a washcloth on her hands produces cries of "you're hurting me". Strange that seems to be a common phenomenon--others have mentioned it too.

Excuse me if I get a little cruel here, but the fact is that this person is NOT the aunt that you remember.

Does she know who you are? Does she understand the term "niece?"

Perhaps, instead of trying to explain where she really is, try something like......"You're just visiting here today, so it doesn't matter." My mother thought she was staying at her favorite bank. That was ok by me. There was no point in trying to set her straight.

Ask some of the staff if she remember your visits. If not, put more time in between them. They are not doing either of you any good. In fact, sometimes a visitor will upset the patient so that there is more confusion. Ask about that too. You want her life to be as settled as possible.

It's obvious from your descriptions that your aunt has slipped into the nether world of dementia. Her ability to understand what you or anyone else is saying is pretty much gone, so there's absolutely not point in trying to set her straight -- whether it's about where she is, her dirty nails, or anything. The "circular one-note conversations" are the best you will get. Just accept them and try to keep them pleasant.

What's wrong with telling her she's in her room? You don't need to explain which room and in which home. And you certainly don't need to explain her blindness or other physical and medical problems. In fact, constantly trying to set the record straight on those subjects may add to her anxiety. Just because she doesn't remember what you've said, doesn't necessarily mean that it hasn't registered somewhere in the depths of her being -- registered just enough to create confusion. Keep assuring her that everything is all right and she's where she's supposed to be. At this point in her life, a soothing voice may do more good than anything else. She doesn't need to know you're her niece -- all she needs to know is that a nice woman is spending a few minutes with her.

Bringing up things from the past is a crap shoot. Sometimes it works to redirect the loved one, but other times they can fixate on the past and it creates havoc. For a while, my mom was convinced her parents lived in the house next to her assisted living facility. So a couple of times, she tried to escape to "visit" them. For me, it was better to talk about the weather and food than long, gone family members. Were the conversations with my mom stimulating and interesting? Not at all. It was the same inane observations about the weather over and over again. But it didn't bother me because I knew it was important to her to have me there, sitting next to her, talking to her like she was still a valuable person.

@agnespuffin.....

"Ask some of the staff if she remember your visits. If not, put more time in between them. They are not doing either of you any good."

"...sometimes a visitor will upset the patient so that there is more confusion."

Excellent stuff, agnes.....and I've not seen it here before.

If you listen closely, you'll hear applause from care-staff all over the country.

You've also given permission to countless family members to acknowledge the reality of some of these situations and thereby escape the guilt they may otherwise feel.

Your few sentences carry a ton of wisdom. Thanks.

I had both my mother and her sister (the aunt that raised me) in the same room for a few years at the NH. Both were far gone.

One day, the Aunt asked me who I was. I told her my name. "oh no you are't! She's a little girl with short straight hair." She then described me as I was when I was about 10 years old.

Would it have done any good to try and convince her the truth? Nope, I didn't exist as an adult or a relative. So I merely said something about having the same name and let it go. She was happy and didn't get upset.

Neither my mother or my aunt knew each other as sisters. They were just "that woman in the other bed."

It's sad. But the more you can accept that you are just passing time with a stranger, the easier it is to accept.
Talk about the weather. Make visits short. Smile a lot and, if you can't think of anything to say, just pat an arm and say something about watching the other people.

Your visits will be easier if you can arrange them to be in a lounge where she can see other familiar faces. You can talk about the others and mention things about clothes, hair, etc. No need to talk about yourselves if you can help it. The one-on-one visit can bring out the worse. The patient is confused about who you are and why you are there.

You want to avoid confusion as much as possible. It can make the patient very difficult for the staff to handle.

Agnespuffin, you also make a good point about holding visits in the open area -- lounge, great room, etc. -- rather than in the resident's private room. Black Beauty's aunt may be blind and not be able to see, but she still might be able to hear the hustle and bustle of activity. Something to comment on and chit-chat about. As you said, the loved one is in familiar surroundings and the visitor is just another nice person. No need to try and explain exactly who you are and how you're related to them. Confusion and anxiety should be avoided at all costs. It's distressing for the loved one, distressing to the visitor, and just as distressing to the staff.

Thanks shambo! Dementia is a very real possibility in our family, so we have read a lot about it.

It had slipped my mind that the aunt was also blind. That does make it more difficult. However, this is also another reason for trying for a visit in an open area. She could mention that it looks as if they just painted the walls (a lie, but it's something to talk about) mention colors, trees, flowers that you saw outside. Talk about anything except her and something that she should remember. When, she says something about how long, say you don't remember either...

When she starts on "the same loop," interrupt and say something like, "let me tell you about a movie we saw." And then keep talking about a movie. Or about the neighbor's dog. Anything, except the "why" of what's going on in her life.

There are two BIG rules about talking with people with dementia. One is, Tell lies if you have to in order to prevent more confusion, and the second is to never try to get them to remember the truth.

The real world doesn't exist...only that world that they can imagine, is reality.

Agnespuffin, those two rules are SO important to remember. Do all things out of love and concern for the dementia sufferer. No need to force them to remember the truth -- It only creates anxiety & confusion. The Bible talks about "...speaking the truth in love." Changing the topic to the weather, spring flowers, lasagna, or whatever is a good thing. Redirecting their thoughts away from themselves and their current situation is not deception. It is the very epitome of kindness and love.

Your description of your mother and sister is a good example. How hurtful it would have been to have spent precious minutes explaining to your mother that the woman sharing her room was her sister. Or maybe trying to explain that a beloved husband has been dead for 15 years. A waste of time and a recipe for anxiety. My mom often asked about her brother and her mother & father. I always just said they were fine. And, it wasn't a lie. They were fine because they were all dead. My mom was a woman of faith, and in her better years, she believed they had gone to be with the Lord. So, yes, they were fine!

When you're dealing with someone suffering from dementia, there isn't time to waste on making a point, teaching them better behavior, straightening them out, taking a stand, etc. The only thing you can and should do is give them peace and security by letting them know someone is talking to them pleasantly and giving them hugs or holding their hand (or as you mentioned earlier, a pat on the shoulder).

My husband is still living at home. He's 65, with multiple sclerosis and Alzhymer's.. He's gone steadily downhill since diagnosis in 1998-14 long awful years. he gets into those loops. At night he'll get out of bed, make his way downstairs and get food to eat. I once found a bowl of cold cereal with milk in the microwave. Found a cut up carrot in the sink. Oh, God, he had a knife. I searhed him for cuts. I neverr found the knife. He insisted on getting a cell phone even tho he's basically bed-ridden and has a phone on the nightstand. He say's the cell phone is broken, he needs a new one. I've gone over and over how to use it. Push the red button to turn it on, dial the number, then push the green button. He can't get it right. I try to treat him with love and kindness. I make him nutritious meals. I see that he takes his meds. He doesn't like to shower rehularly and sits in food-stained underwear, plus he's incontinent (both ways). A real handful.He had a physical therapist coming to our home, but the guy got disgusted with my husband's appearance, lack of grooming and refusal to practice the exercises he was shown, so the therapist quit after just 3 visits.

jammie, caring for aging parents is tough - I can only guess how much more so it is for you as a spouse. Can you get home health to come take care of the showers & shave? The ones we had for my mom, post-surgery, could get her to do things my siblings & I couldn't. As for the PT....ask the dr for another PT. Someone better trained to work with an Alzheimers patient. Your husband cannot remember to do the exercises on his own. The PT who quit just wasn't the right "fit". My heart goes out to you. Please contact your husband's doctor for additional advise & help.