Do I agree or don't agree with a dementia patient?

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My 88 yr old mom has been in a nursing home for almost two years. Frequent falls, broken bones, severe loss of vision, etc... She constantly nags me to bring her home, she can no longer stand alone, walk at all or transfer alone. She refuses to walk, but when you ask her, she says they don't have time to walk her. I wheel her up to the nurses' station and ask, then she says "well my knees hurt, I didn't want so and so to walk me, don't trust them" and the list goes on. She insists she would be able to do everything for herself at home, "that place" is making her like she is.

She was diagnosed with dementia in November. She has hallucinations, which are almost daily now, actually ongoing. They always suspect a UTI, which was the case when she had her previous doctor, because he never did cultures, etc... I changed her doctor to a wonderful internist who comes to the home and so does his NP. They have done pharmacology consults, have done tests and have her medicine totally inline, finally.

The hallucinations are becoming a huge issue. I have had to tell the supervisor that the staff shouldn't be dialing the phone for her at 11:30 pm, 5 am, etc... She wants to talk to me because she is upset about something she thinks happened.

I don't know whether to agree or not with her. I do tell her I can't see the things she sees, she will tell me to go get a pair of sandals on the wall in size 9. I try to tell her that her brain is confused and sending images to her eyes. She has very little sight left. She doesn't seem as bad when I see her in person, but yesterday's call was asking if my son, the little boys and the birds were home. She said they had been to see her and she was concerned the birds were flying around the house. I told her my son hadn't been there that day and of course, she gets angry.I try to calm her down and then she cries and tells me she isn't right, that place is making her crazy.

She is on Remeron for depression and anxiety, she has always been a nervous high strung person. I know she is in the best place, safe and well cared for. She is so dependent on me, because we had lived together since my dad passed away. I have cut back on my visits, thinking she would depend on the staff more.

How do you react when they have such vivid hallucinations. Mom's used to the be same, she still has the same ones, but now she has even more. I assure her my son and I are safe and fine at home. This is progressing so fast. We are going to talk to the doctor about any kind of medicine we can give her to make this easier on her. I don't want her medicated just so she is easier to deal with, I want something to make it easier on her.

This is a horrible thing for her to go through and for us sitting watching her go through it.

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I'd suggest that they check out the Remeron. It may be the right drug for some people but not for others. Side effects include: mood or mental changes, including abnormal thinking. I wouldn't think that the doctor would object to weaning her from that drug and trying a different one. Sometimes that can make a huge difference.

As to whether or not you argue - try not to argue, but you already know that. You are doing a fantastic job just holding it together. This isn't a time when you can totally agree with her either. If agreeing with her is not an option, try distracting her.
If that won't work simply say that everyone is safe (if she's worried about birds flying around your home), or whatever you can say that's calming.

Sometimes we have to accept that all we can do is, well, accept. This is an awful thing to watch. I think the facility should be told not to call your for you mom at night. They can be firm and say that you are sleeping but will check in the morning. That's their job. Obviously, they'd call in an emergency.

I'm hoping that a med change may help some. The wrong meds can do the same things as a UTI. Either can make symptoms much worse.

Take care of yourself and please keep us posted.
Carol
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My sister who was a psychiatric nurse told me not to disagree with or try to reason with someone who's saying things that don't make sense. That might apply to hallucinations as well. It's a brain function, or rather malfunction, and you're never going to be able to make them see clearly (especially with compromised vision) that they're imagining things.

The next time she asks for size 9 sandals, go to her closet and bring out some shoes. If she still wants sandals, tell her you think they might be at home and you'll bring them next time. Then try to redirect her attention to some other topic.

If she thinks birds are flying around the house, tell her you saw them too and asked your sons to get nets to catch and release them.

In other words, respond with an acknowledgment that her concerns are treated with validity and respect, the issue is being addressed, then REDIRECT
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Accidentally hit the Submit button before I was through...

Meant to say redirect her attention, to something that isn't upsetting.

I would spend more time, not less, with her until she becomes acclimated to the facility. She may feel a sense of abandonment by having been placed there and your lessened preeence may enhance that.

If you can, visit when there are activities so you can take her, especially to music activities. Bring a CD player (forget about an I-Pod - it's too complicated for someone with memory and vision issues to fuss with), CDs of her favorite musicians from earlier times, put one on when you leave so you can leave her with a calming activity. If she can see enough, print out large instructions on how to change the CDs. Or maybe talk to the activities staff to see if they could spare a few moments to help her - music is therapeutic and calming.

If the facility has pet therapy, talk to the activity staff to ensure that your mother gets a chance to pet the dogs or cats.

And try to put yourself in her placce - she's old, losing vision, can't see well and probably becoming more frightened from that issue alone. Add to that she's not at home and can't see that well, her daughter isn't visiting her as much, she's confused... If it's too hard to imagine, tie a blindfold over your eyes and try to navigate around your own home. (I'm not being fsarcastic or acetious - I didn't realize how really difficult it was for my father to navigate until I injured my knee and I could hardly walk. I couldn't even get medical help because I couldn't drive, and had no one who could pick me up to take me. It was scary.)

Sometimes you have to step into their shoes to get an idea what they're really feeling. And for them it's probably terrifying.
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Carol, thanks for the compliments and support. I learned the birds comment application from my sister.

We were sitting with my mother in the nursing home lobby one morning. Mom had fallen asleep, abruptly woke up, and asked with sense of urgency: "when do we feed our chickens?" Well, we never raised chicken and before I could say that, my sister said "Mom, we feed them at 11. It's only 10 now so they won't need to be fed for another hour" ... or something like that. I don't remember her exact words.

Mom nodded and went back to sleep and never asked about chickens again.

I'll always remember feeding chickens as a way to, as you accurately and eloquently put it, acknowledge and validate.
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Sorry, as I posted your full post disappeared so I didn't have access to reread it and missed the statement that your mother had been in the facility for 2 years. With the falls and fractures, it sounds as if it's been a difficult time for her.
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Arguing with someone with dementia serves no purpose and can agitate them and confuse them even more. I can't understand why family members argue with their loved one with dementia. It seems like a form of bullying and it definitely says something about the family member doing the arguing.

I think the staff call you, on your mom's behalf, at inappropriate times because they don't want to deal with her themselves. They're passing the buck to you. What kind of healthcare professional thinks it's OK to call family at 5am??

But regarding the issue at hand treat your mom with respect when she tells you fantastical tales, be non-committal, and then redirect her attention to something else. Point out something in the newspaper (which you can bring with you), comment on how beautiful the flowers are outside, tell her you're going to get her some ice water (leaving the room just for a few seconds can break a train of obsession in someone with dementia), ask her what she'd like to wear tomorrow, etc.

Redirecting is a lot of work, lots of mental energy, but it's worth it to keep our elderly loved ones at peace.
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Thank you so much, I found out just now, she is getting her roommate to dial the phone when it's late at night or early in the morning. Her roommate has dementia, but doesn't even use a walker around the room. She gets up and down, uses the bathroom, etc.. without help. She is up and down all night, so mom asks her to dial. When I questioned the supervisor, she said we never have staff call after 8 pm or before 8 am. Then they talked to the roommate and she said "I call for her all the time, they never dial the phone for her." Now, they have to stop that.

I never argue with her, always try to reassure and redirect. She is a very thick headed person, so she continues to argue with me, I hate it.

Her doctor is going to look into changing meds, she had been on Effexor for years and it wasn't working, so he switched her to Remeron in November.

I know I can't fix this and there is only so much I can do, but when she calls and is talking about things that aren't there, then starts crying saying she is losing her mind, it is horrible. They are stepping up social services for her effective today. As part of the nursing home care coordination unit at her clinic, they have a social worker, who just started seeing her. I will do everything I can to make this easy on her. The staff is really good there and they do great reassuring her. They do have new aides from time to time who give in to her. Mom will say "another new one today, I have to train her."

Thanks so much, glad to know I am not alone in this journey.

Her progression has been so much faster since my sister died unexpectedly the day after Christmas. I wasn't sure how mom was going to make it through that, but she did. She has also been declining rapidly since then.

Her doc wants more info in her care plan to reflect all of this, so they can give her all the help they can. It's so hard to distinguish the truth from her mind wandering, she tells me somethings that I know aren't true, but I will focus on redirecting. None of us argue with her, but some of the time we can change the subject to something funny and she goes along with it.
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Inform the staff that you're turning off your phone from 9:00 p.m. until the next morning, and will check for messages at that time. Remember, you're not 911.
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This is such a difficult journey. It is so difficult to watch a person suffer this way. I am praying they find something that will make this easier for your mom. You are doing everything you can and your love is the best medicine you can give to her. Do something for yourself today. We have to take care of ourselves. This takes so much out of us. Take a walk, listen to your favorite music, close the blinds and dance like a 4 year old, out for a special lunch or treat. Whatever it is, for that time at least, try not to think about this struggle. You will feel better. Know that there are others walking this same path that care about you and your journey!
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