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.
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.
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?
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.
Learning ways how to handle this aging disease will help. Such as meditation,prayer. And try to keep up some social enjoyment for yourself. Your Mom may need you; but you need you. We must keep striving to keep a positive perspective on this journey.
Thinking about first maybe excepting “the things you can’t change; but with love and support you will find ways to deal with this. This website is support. I pray that I have given you some words of wisdom.
Have a peaceful day. Email and stay to this website we are helping each other.
Please stay on the forum and keep us updated. Peace and blessings to you on this journey
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.
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.
It may be that your mother can not be at home alone in the evenings. Sundowner's syndrome may be part of the problem. Tiredness and changing light can make everything look different. A consistent routine and more light in the evening usually helps. She may need somebody to help her with evening routine of dinner, night time personal care tasks, and helping her get to bed. If she needs help with evening routine, please consider that she may need help during the day as well.
Much as I'd rather my mother didn't get on the dementia train, at least she had a good long run. She was over 90 before it was apparent dementia had arrived. She and my dad had a GREAT retirement, traveling, entertaining with family and friends, snow-birding to FL in the winter to a condo they owned, etc. MANY good years! Dad was 83 when he passed. She continued on, becoming the last of that generation on both sides! She was able to stay in her own condo for a little while longer, before moving to MC. She lived there 4 years and passed at the ripe old age of 97! She was still somewhat aware - most likely vascular dementia. She drifted back in time to about 40 years ago, asking for her mother and other comments allowed me to peg the time period she was living in. That more or less persisted to the end.
How sad for you AND for her children. Big virtual hugs to all of you!
My father had mixed dementia of Alzheimers and vascular. He died before he got where he didn't know where he was. He didn't necessarily sundown - his delusions could happen at any time. They didn't pop up often. He believed mom had boyfriends and spent their money; he believed he owed phantom people money. I was horrified to think dad thought mom would cheat on him - but at the same time it was kina funny.
It can be hard to do but try and find something humorous each day to make this journey more bearable. Good luck and may God be with your mother, you and your family.
Later, however, thinking about how I took care of EVERYTHING related to the house and kids, even mowing the yard, worked a full time job - 3rd shift, spent up to 2 hours working on his financial "books", transporting the kids to/from daycare so I could get a little sleep (not nearly enough!) I thought to myself, gee, I can do all this AND have an affair? I must be something else!!!!
Despite the fall concerns (one doc refused to give a renewal that was to be used only when needed for that reason), she NEVER fell when taking it. The only tumbles she had in the four years she lived in MC were when she wasn't taking the medication!
If this might help your mother, she'd likely take it before bed, so less likely there'd even be any fall concerns.