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Byathread Asked January 2018

I think my mom now has Sundowners. Will it last to death, or is it something that comes and goes?

Mom is in a nursing facility due to back/neck injury/surgery and knee replacements and osteoarthritis and being bipolar. I could no longer physically/mentally cope with my mom. More to the point she has moments that she seems more herself (other than urine/fecal incontinence) and lately has been more confused than usual thinking they’ve moved her to another room and that there is a big house they’re moving furniture out of and thinks her room mate is mean and hateful to her. Not true she is a sweetheart. My mom has become so demanding and thinks I should jump when she demands something. She has been to a behavioral unit because she said if she had a gun she would blow her brains out. Adjusted meds, now in the last 10 days she has called me 3 times of the evening usually between 6-7 demanding my husband come get her and her room mate saying she’s in a different place and that there are people walking in the hallway that are going to hurt her and if she had a pistol and come into her room she would shoot them. She does not have a UTI as that was first thing they checked. She calls and cries and begs us to come get her and her room mate. Said she would call police and they would come get her. It’s heartbreaking how fast she’s going downhill. My dad had vascular dementia but acted nothing like my mother. I feel such guilt that I cannot bring her home and take care of her. She lived between my sister (who has to have a hip replacement) and myself for 3 years. It finally got to where I could no longer physically/mentally handle her. Especially since I was the only one taking care of her. Wondering if Sundowners lasts to death or something that comes and goes. She is so fearful and would not let them take her wet clothes off her to change her and when they came in to give her meds she told them she wasn’t going to take anything they gave her as they were trying to poison her. Any suggestions on how to respond to her when she calls and demands/begs us to come get her? I have to harden my heart when she calls so she doesn’t know I’m crying and trying to hold it together...

97yroldmom Jan 2018
I didn’t say abandon your mom.
Yes. You will always feel responsible. I agree with that. Part of that responsibility is learning about the disease your mother has. You are trying to explain to her, you are trying to reason with her. She can’t reason can she? Her brain is broken.
You can distract. You can divert. YOU can learn. She can’t. You can help her be calmer by how you respond to what she says. Trying to convince her she doesn’t see what she knows she is seeing doesn’t work. It is real to her.
Google Teepa Snow. Do this before you visit with her next and see if it helps. It takes practice to respond appropriately.
As your moms advocate you can help her by continuing to educate yourself on her disease. Other family members will learn from you. Share Teepa’s name with them. I know you love your mom. She is lucky to have you.

Byathread Jan 2018
Thank U 97yroldmom...my mom has been in Nirsing Facility since May...she had a hard time at first then seemed she was adjusting...they actually sent her to a behavioral unit (she calls jail) because she told Social Worker if she had a gun she’d blow her brains out..her meds were adjusted and she seemed to b doing better until the last 2 weeks now she’s back to threatening to shoot anyone that comes into her room and she’s ready for a fight...me and hubby went over to check on her last night and when we went in she was putting her shoes on and asked me if I told him...being my husband that she was going home I told her mom you’re not going home so that’s all it took and she was off..told me how awful I was for leaving her there and she pouted/ranted for a while and even cussed which she has never done...I told her she shouldn’t b talking like that..she said I don’t care if I go to hell..you’ll be there for putting me here...said I’m gonna lose my mind or go crazy if I stay here then she tells me look at that man out there washing his hair in the rain and someone’s been moving furniture in and out of that house all day..no house no furniture and she said she and her roommate go to sleep in their room then wake up in the room she’s in now..we explain to her this is same room she says no it’s not because the windows r upside down in here..she saw cars in parking lot with brake lights on and couldn’t distinguish what it was..told me some man had pulled had pulled her out from under the couch and has it in her mind that someone was buying this “house” for $3,000,000 and backed so now Social Worker is stuck paying $1,000,000...u can’t convince her none of this is true so I just talk to her as if things rnlike she perceives them to b to try to pacify her...she’s become so hateful/mean I look for her to start trying to pinch or hit the aides...she’s so demanding...wants her roommate to turn off her light or tv or radio when she’s ready to go to bed...she’s lost any consideration or empathy you would have for another human being...I used to b able to take her out to eat and to the $ tree now don’t know if I’ll b able to do that again...she doesn’t even realize she has chocolate running down her face and I wipe it off of her...she still wants to go to grocery store to get groceries she has a small fridge in her room but she doesn’t eat stuff she puts in there and she’ll tell you she’s wet but refuses to go to bathroom my dad had vascular dementia and acted nothing like this...they were married 54 years when he passed and she used to say she missed him now she says she could care less if she ever sees him again...I know the resthome is responsible for her care but she is my mother and I love her and I am not going to reject her when she’s not responsible for her mind doing what it does...she may b undernthe resthome s care but as long as she and I r alive she is still partly my responsible for her

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97yroldmom Jan 2018
Hi there Byathread
How long has it been for your mom in the NH?
It sounds like she is having a rough time settling in and so are you. This is a tough tough time. Embrace that. This doesnt happen everyday. It takes time.

Have you asked for a geriatric psychiatrist to assess her meds?

I’m glad the UTI has already been checked out.

I do believe the sundowners will pass as her dementia progresses.
Please google Teepa Snow and watch one of her UTube videos. You will want to watch them all.

Also please read Atul Gawande’s book ‘Being Mortal’.

Mark your calendar today. Decide how many calls you will take from mom, when and how long you will stay on the phone. Set a timer. Get a journal. Each time she calls, note it in your journal.

When it’s the day and time you have set aside to talk to her, take notes. It will engage the part of your brain that allows you to think. Perhaps you will have some ideas written down to help you direct or at least manage the conversation.

Is mom safe? Has she eaten? Did she sleep well? Is she dry and clean and comfortable? Perhaps she can’t answer those questions but you can ask them of yourself while she is venting.

Allow her that.

My goodness. Look where she is. She has a right to vent.

Practice showing concern and empathy without making promises to change anything.
Let her know you hear her.

Do deep breathing. Meditate. Take walks. Let her go. Get strong. Turn her care over to the caregivers at her facility.

Decide to be a daughter. Visit and share life events. Hug her. Touch her. Let her feel your strong support. You carried her as far as you could. It’s time to let her go and let her care team take over.

Again, it’s a transition for you both. Come back and let us know how you and sister and mom are doing.

Hugemom Jan 2018
Gladimhere is right. Your mom obviously has mental issues from what you’ve told us. This is compounded by dementia. What she is saying is absolutely a symptom of this. My mother said some of the most incredible things out of her delusions and hallucinations. As time went on, 99% of everything she said was from the Twilight Zone. I did not find peace with this until I stopped trying to rationalize and make sense of everything she said. I believe this is what you need to do. If you can, find an Alzheimer’s support group in your area. They do not only hold monthly meetings, but offer support outside of the meetings as well. Keep your own life separate from Mom’s or you will lose yourself as well. Like GIM says, don’t feel obligated to solve her issues for her. That’s up to the facility to handle. Good luck and keep us updated!

gladimhere Jan 2018
You do not need to answer the phone each time she calls. Establish boundaries and stick by them. She is in a facility the more you pacify her the longer the adjustment will take. She is now staff responsibility. Stop answering the phone, it isn't helping anything, try something different.

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