Hi,
Every afternoon with 88 year old mom is pure hell. The sundowner's part of this disease is the worst to deal with. My blood pressure skyrockets the highest at this time every single day. Currently, she is on olanzapine 2.5 for hallucinations/paranoia/agitation etc. while I do welcome the more "calmer side" of her from this medication. Nonetheless, the hallucinations/delusions still rage on. Doctor is now slowly moving up the dosage to 7.5 a day. Every single day she is always thinking there is a woman and a man in the house. The reality is there is no one except me running the show. No matter what lies I tell her about this it doesn't seem to work. Ex: "Where did that girl go that was here in the morning?" Me: "That girl was from the adult protective services checking in to make sure you are ok.” And on it goes from there. When lying doesn't work what else is one to do? Looking into right now at hiring a caregiver for a few hours a week to start with in the near future to help and guess what shift I would like the caregiver to work? The afternoon/early evening shift!
Don't wait, do it now before it gets worse and it will.
Do you know that over 50% of long term caregivers, those who do it in their home, die before the patient does?
You are already on burnout, don't do this to yourself!
Its time to get that formal diagnoses and place Mom. Its no longer what she wants, its what she needs. She is no longer competent to make decisions for herself. Thats where your POA comes into effect. I so hope its a Neurologist that is handling her Meds. A PCP, IMO, does not know enough to administer these type of Meds.
I hate to say this, but would there come to a time you would recognize that your Mom requires placement and you cannot go on. You mention your blood pressure and your own anxiety could make you have a stoke that would debilitate you or worse. Where would your Mom be then?
My brother had Lewy's and his hallucinations were so detailed and SO REAL. He died before his "probable early Lewy's Dementia" could progress appreciably, and so he somehow knew they were real, but he knew they weren't DREAMS, either. He would see a whole garden party out the window and could describe those attending, a guy with an elvis haircut slicked back, white shorts and a white towel around his neck, for instance.
I think, if medications don't work, that you may need to consider placement in nursing home or memory care for your own health, and so your Mom at least has you as a visitor ongoing, not as her dead child. I sure do wish you the very best and will hold out hope that you'll update us that something has helped this situation.
A good tactic it to try to preempt sundowning.
- Make sure you use daylight spectrum lightbulbs in the rooms where she will be in; make sure to turn them on before they are needed (even in hallways and bathrooms)
- plan for an activity: go outside for a walk, play a game (her choice, her rules), do a create or purposeful project (coloring, sorting). We had my Aunt fold a large stack of kitchen towels, then read aloud to us from her favorite book.
- take her for a car ride
- Redirect the conversation, ie do not respond or try to explain away her hallucinations, instead change the subject to abruptly to something positive. Point your finger to something and ask a question about it; use your digital device and watch funny animal videos together or watch a lighthearted Disney or Pixar movie.
- etc.
Don't make assumptions about whatever aid you hire: make sure they either have experience dealing with someone with dementia/sundowning or else make sure to train them.
You have meet them at their level. Talking calmly, and keeping your distance of one leg length will prevent you from being injured. Keep in mind that their brain is broken and trying to process information that it no longer has the capacity to do so. It is a frightening experience. Learn to say; mom, I am going to escort the man and woman to the door and let them out. Ask if she needs to use the bathroom, want a snack or juice. Make sure that you keep the place where she is with good lighting. For the rages, make sure she is safe. Go to another room to calm down or if she doesn't get around, go outside.
Check with the Department of Aging to see if you can get respite care. It sounds like it is time to start thinking of the next level of care and having mom go to a facility. Memory Care can be a start. Have her checked for a UTI. Only you can determine how much more you can take.