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My mother is 78 years old and lives in assisted living now. She was living with me for about 5 months but needed more care than I could give. My mother, I remember as a child, was very strong, very independent and worked 3 jobs to take care of me and my sister as my father left when I was 7 years old. I am now 55. My sister has nothing to do with the situation so it's all on me. I am POA and I take care of absolutely everything. Lately she has been calling me in the wee hours of the morning saying that she's lost, she doesn't know where she is, that I need to come and take her home, and she's in a basement and can't get out. I believe she has early onset dementia or Sundowner's Syndrome. I just need to hear others that have dealt with this situation and their experiences to give me some direction. I'm so lost and saddened by what I am witnessing. It's hard. I cry after I get done speaking with her as I don't want her to hear me upset. I love her so much.

at 78 I would not call it "early onset" but that does not matter what you call it.
When you go to bed at night mute your phone.
If the call comes in at about the same time if you can ask the staff to check in on her around then and reassure her if she is agitated.
If she is afraid at that dawn time of day if you can fix a timer on a light or two so the light will go on so if she wakes she will not be in the dark and may be more aware of her surroundings.
If you can not mute your phone if you can let the call go to voicemail and maybe just hearing your voice telling her that she is ok and that she should leave you a message.
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Reply to Grandma1954
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I am sorry to hear of your situation, I am in a very similar position with my parent as well. Memory Care was too disruptive for my Dad as he was not wandering and was very upset by other patients disruptive behaviors that could not be dealt with so not to disturb the remaining patients. When I asked if he was in the right place, we moved him to AL and he much more content. Any time after dinner, Sundowning can begin. I have told the people who work with him at night if he asks for me, to tell him they just spoke to me and I am visiting him tomorrow ad am looking forward to see him. That has cut down dramatically on the phone calls. I have had to work hard to adjust my thinking to the fact that my Fathers life journey is very different than what we all wanted. I visit often and try to keep conversation light and make him laugh a couple of times during our visits. If I have accomplished that, I know he feels better which trickles over to me as well. It’s not the situation anyone wants, the best you can do is keep trying to find approaches that work for you and your Mom. This website is a great place for ideas, wishing you and your Mom the best on your journey.
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Reply to Butlerna71
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My mother is 94, lives in Memory Care Assisted Living now, and was diagnosed with progressive dementia in 2016. I know she was experiencing dementia symptoms before then, however, so I'll say it's been 6 years at least she's been going down this road. It's not Alzheimer's, her scans were clean, so it's likely vascular dementia she's dealing with. She's been wanting to "go home" the past several months now, or insisting her apartment doesn't belong to her, and that she's "out of place and doesn't belong" in the residence she's lived in since June 2019. It's worse in the evening, Sundowning, and she gets angry when told she lives there. She doesnt know WHERE she is quite often, just that shes in the wrong place. It's important to note she was put on a new medication recently and medication ALWAYS WORSENS HER DEMENTIA symptoms and state of mind in general. She's at the moderately advanced stage of dementia now, exacerbated by the new medication.

Has your mom been given new meds lately? Does she get sufficient care in AL or is she better suited to Memory Care? Can you speak to her PCP about this new behavior for his input? Get the AL nurse to do a urine culture to rule out UTI, which is always the first course of action?

If your mom has a bad time of day say the wee hours of the morning, ask the doctor if a mild sedative can be prescribed to keep her asleep during that time.

It's always upsetting to hear your mother in such a state of confusion, I feel your pain. I've cried myself when telling my mother her papa is dead and she can't ride the bus to visit him. Or that her sisters and brothers are all deceased so she can't call them to chat, as she wants to do. I explain to her that they're all together and safe, happy, playing cards and will be ready to reunite with her when God says its her time. I don't know what's right or wrong, just that I have to tell her the truth because she's fixated on visiting and calling the dead family members, so there's no other choice.

It's a very hard road you're on here with your mom and dementia. Get some direction from her doctor and get her to a neurologist who has more experience and expertise in the field of dementia and Alzheimer's. Read up at alz.org and the recommendations sjplegacy gave you. That's the best thing you can do.

Wishing you the best of luck.
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RedVanAnnie Apr 30, 2021
When your mother talks about wanting to go visit her papa, you could respond with things like "Wouldn't it be wonderful to see him?" You don't need to try to convince her he is dead. Similarly with wanting to go home: "It would be wonderful to be home again;" or "What wold you like to be doing at home today?". Let her talk about her own reality; she won't understand yours.
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I'm so sorry to hear about you and your mother. This is probably the worst stage of dementia, when your loved one doesn't understand what's happening, and wishes she was back in a time when she was independent and happier. That's what they mean when they say "home." Visit her as much as you can. If she's still able, take her on short excursions to places she enjoys. Sit with her in a park, or outside on a nice day...Talk to the case manager and staff about her condition. They have a lot of experience and can explain some things to you. When you visit, try not to show your sadness. Be as loving and positive as you can be. Learn to accept her for what she is, day by day. With my mother, I keep having to lower my expectations as her situation declines. Sometimes after a visit I have to go to the bathroom at the facility and cry. Prepare yourself for many emotional ups and downs, and if you need it, seek grief counseling.
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I am so sorry. This isn't really early stage. Your Mom may be nearing time for needing memory care. I saw my brother get diagnosed with probably early Lewy's Dementia. He went into assisted living. He made me trustee of his trust and his POA. He was very afraid of loss of control and what awaited, as was I. About a year and one half from his diagnosis he died from sepsis. In all honesty I was relieved he got what he wanted, and didn't have to face dow the long slow slide and didn't have to witness it.
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You might discuss this with the staff and work on some solutions to the sun downing. My mother was in Memory Care and they had a policy off keeping the residents awake and engaged throughout the day so they would be tired and sleep at night. There were 7 different activities everyday, no TVs in rooms, residents were encouraged to stay in the public areas and not sit and sleep in their rooms.
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This is sad and it is even more sad that this all falls on you. When people have this condition, they get worse and worse. It is impacting you emotionally and physically and you cannot allow yourself to have this happen any further. I think the time has come where she must be placed where she is safe and cared for. If you continue to be there as you are, it will destroy YOU and you do NOT deserve that.
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She should be checked for a UTI which is extremely common in elderly women and often have no other symptoms than increased confusion and changes in personality and behavior. Antibiotics can clear it up. An unchecked UTI can turn into sepsis, a potentially life-threatening condition. Discounting a UTI is easy and may explain her behavior. If your mom is taking any thyroid medication, overdosing can also produce confusion. My cousin just went through this when she lost a lot of weight and didn't have her meds adjusted accordingly. I wish you all the best as you advocate for your mom.
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disgustedtoo May 2, 2021
Yes, check for UTI (preferably a culture, not just the dip stick test.) Sudden onset changes are sometimes caused by this. While doing that, get blood work done too. Sometimes it can reveal another infection or imbalance in the blood levels. An infection in someone with dementia can result in sudden odd changes.

My mother never really had classic sun-downing, but her first UTI in MC resulted in severe afternoon/evening sun-downing. In the morning, she'd be fine, like it never happened! Antibiotics and some Lorazepam while treating the UTI took care of the infection and kept her from having the anxiety attacks. Subsequent UTIs showed up as night-time bed wetting (aka soaking everything, briefs, pad inserted, night clothes, bedding.) Once treated, that also went away.

If no sign of infection, a sigh of relief there. Next step is perhaps something to help her sleep/stay asleep. Most sun-downing occurs later afternoon/early evening, but it can occur any time of day.

The idea of having a light for her might help. If she wakes up in the dead of night and is in the dark, it will likely feed into whatever fear she has. Perhaps a night light with a sensor, so if she gets up it will turn on automatically? Assumption is she would have to get up, at least partially, to use the phone. Maybe a bed alarm, to alert the AL staff, so they can try to reassure her and get her back to sleep?
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Good morning,
I feel your pain and you are definitely not alone. Being POA puts you in a very tough spot because others feel like they have no control and because of that think that they do not need to help. If you can have a conversation with your sister to help her understand that you need help, it will be easier on you.
My mom asks to go home everyday and also does not recognize her own house. She whispers " who's house is this"? "How did I get here"? and is full of anxiety. She also does not know who I am anymore. She recognizes me and accepts me but thinks I have my own parents and says she is not my mom.
One thing that helped us really see and understand the decline and care necessary is the RING camera. We installed 2 - one in the kitchen and one in the front porch because my mom will pack her things and leave her home to go to her mother! My mom is 90; her mom passed away a long time ago. Anyway the camera's gave us really good insight of what she is doing and how she was acting. This also helped other family members recognize the seriousness of the situation and that we all need to help.
I cried too at first but I needed to accept it and just keep swimming.. Do your best, keep talking to people and asking questions and getting support. It is one of the hardest things that I have had to deal with. It never gets easier but just try and keep you mom happy as much as possible and you need your sister to understand and help.
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disgustedtoo May 2, 2021
"Being POA puts you in a very tough spot because others feel like they have no control and because of that think that they do not need to help. If you can have a conversation with your sister to help her understand that you need help, it will be easier on you."

It certainly can't hurt to give it a try, but my impression from the original post is that she wants nothing to do with the situation.

I have 2 brothers (biological that is.) TWO of us were appointed POA, but trying to work together was not working. OB isn't local and during his last "visit", he refused to go back. He didn't see his mother for over 2.5 years and she passed in December, so he doesn't get another chance. YB stopped visiting or even making contact. It's all been me, juggling everything and making sure mom was well cared for and visited, before the lock down. I tried several visits when they were allowed outside and in a room set up for each visit (30m) but between distancing, masks, bad eyesight, little or no hearing and dementia, it isn't clear she ever knew who we were. I know from a staff member who took a pic and showed her that she still knew who I was, so it was all the "protocols" that impeded those visits. I was able to be with her after her second stroke, which was the beginning of the end. I DID take my mask off, so she'd know it was me!

Too many siblings really don't want to help. Better to have that attitude than the siblings who meddle and make trouble.
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I relate to you. My mother has signs of Sundownder's Syndrome. Because of COVID it is hard to get an appointment. Two more weeks and then I will know for sure the diagnosis. It isn't easy to take care of on your own. I have been doing it 24/7 for almost a month and already am burning out. I am looking for support as well. I have been watching the decline for years with my siblings not helping and having a million excuses not to. I am POA and they are so angry about it. They are more than welcome to cook, clean, shop, pay the bills and wipe the bum. I cry all the time myself so I feel for you and I hope you get the answers you need!
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