She gives my husband and I a hard time. Starts in the early afternoon with sundown and will argue with you and try to get out of the house. So we deal with that on a daily basis, burnt out. At night she will keep getting out of bed and walking around with her walker, stubborn, and will not listen to you all while carrying her small purse like she is leaving. A continuation day and night. Need some advice!
I suggest you read this 33 page booklet online about managing dementia and what to expect with an elder who's been diagnosed with it. Lots of Do's and Don't tips for dealing with dementia sufferers are suggested in the booklet.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
Teepa Snow also has videos on YouTube you can watch for tips on how to deal with demented elders.
Best of luck to you.
And most importantly you can get back to just being her daughter and advocate and not her caregiver.
I wish you the very best in finding the right facility for her.
You're experiencing caregiver burnout, and the only cure is getting mom out of the house. Yes, you might take advice about setting alarms on the doors or someone to watch over her at night and so on. But you're still not sleeping when alarms are going off at all hours, and someone to watch over her while you're sleeping is not a likely solution. Mom can argue with her aide and keep you up all night with that.
My SIL who has dementia was even put in a separate bed-and-bath building on their property with her aide, and it didn't work. Too much anger at her aide, and very agitated about being there. She's been in memory care for about 8 months, and she's happy and smiling, socializing, and eating dinner with family that comes to visit her in the facility. So much better!
I hope you find a good place for your mom so you can all have some peace.
What helped with the adjustment was changing his medications. I worked with his doctor (you have to let them know what is going on) and tried different medications and dosages until we got it worked out (or now because we all know what works today may not work next week……). What works for us at this point is seroquel and melatonin about 45 minutes before bedtime. As far as the sundowning, low dose Xanax has worked wonders, but you have to be prepared to administer it at the first minor clue that it is about to occur. I’m with my father about 120 hours a week so I learned to identify the signs, even if they are slight. For example, one of the clues that he is about to go into sundowning is him straightening his pants legs at his shoes so the crease is exactly aligned over his shoe. I have, so far, avoided putting him on a regular Xanax schedule and only administer it as needed. I have faced some criticism over the Xanax, but he is given the lowest dosage available which only calms him and does not make him “loopy.” I think that is someone had a headache, I would not withhold aspirin/Tylenol…. If someone had heartburn, I would not withhold an antacid…… if someone had constipation, I would not withhold Exlax …… so why would I not give him something to ease his agitation.
I hope that it works out. I know memory care facilities are wonderful for some people but for others caring for their loved one in their home is best. That is what is best for me and my father, for now.
My step-mother is in memory care, she carries her purse everywhere, nothing in it except used napkins & tissues and junk she picks up from the floor. She is where she needs to be, in a nice home with 24/7 care.
If you want to sleep peacefully, you will need to change something about the dynamic in your household.
Your mother is not being “stubborn”. She is demonstrating behaviors that result from the deterioration of her ability to think rationally, and remember and reason. These behaviors will not improve.
For YOUR peace of mind, have you taken a look yet at local sources of residential care? You may find that if you decide to make a trial of residential care, she is able to develop better sleep habits.
Sleep meds are a consideration, but ALL of them come with their own sets of compromises. My own mother had brutal anxiety attacks after she became unable to speak, and when given the smallest dose of Xanax, she’d sleep for overly long periods of time, once, 36 hours. There was no dose available smaller (20 years ago).
When you have tried everything, remind yourself that some situations in geriatric care have NO SOLUTIONS that are “good” for everyone, and make your choices based on what is safest for ALL concerned.
Does it not occur to you that these people who post here want what's best for their loved ones and that moving them to a facility IS a difficult decision?
Shame on you.
https://youtu.be/XQ-dr9JDR_0
I also recommend a medication review with her neurologist.
Every time I visit her in MC, I'm convinced more and more that MC is the best solution for her. In a good facility, they have people who understand and care for dementia sufferers and have such a talent for persuading them to do what they need to do. And by placing your mother in MC, you can enjoy your time with her instead of being run down, burned out, and frustrated with and because of her.
Some will tell you to explore every other option first. But why? When I think of a person wandering around all night, a lost soul, I believe that she should be where she can get the best professional help for her condition. If medication is recommended by her doctor, fine. But be aware that meds have their own serious effects on dementia patients, not all of them good.
I agree and for me safety is the top priority.
When she gets argumentative, completely ignore her. Do not engage. Lock the doors so she cannot get out. Her doctor can prescribe an anti-anxiety medication that can help with the sundowning. If she gets to be too much for you and your husband to handle, it may be time for memory care.
Is your Mom a fall risk? If not, what is the harm in her being up all hours of the night? Are you worried that she might walk out the door without your knowledge? Are you worried that she might attempt to cook in the kitchen and leave the cooktop on? What is your worry?
When my Mom was going to senior day care, there was a lady who tried to escape the facility many times. She would grab her purse and run for the open door. Someone figured out that if she couldn't find her purse, then she would not leave. Hence from that point forward, when she checked into the center, her purse was handed to a caregiver, then returned to her when he was ready to leave for the day. Worked like a charm!
Well, seems she followed a worker out the door, no one knew her and she had her purse, so she just followed him out.
Never happened again, she didn't get outside just in the AL section of the home.
My brother & I were like "Oh boy, we must have made a wrong decision". Turns out that we did not.
If the person is given the right combination and dosage of drugs they won't be getting up at night to wander around.
Believe me when I tell you, a memory care is not as supervised as you may think it is. Especially on the night shift.
Wanderers wander into other resident's rooms. They get into bed with strangers because they're out of it and think they're in with their spouse or significant other. People get assaulted.
In Connecticut at an Autumn Lake franchise nursing home, a resident was choked to death by her "boyfriend" with dementia. According to the local news he believed she was "cheating" on him.
Given a choice, if I ever get dementia I would rather be sedated and drugged at home so I don't get up at night rather than be in a memory care. Really, the only "security" measures in a memory care is a locked door so residents can't get off the floor they're on. Other than a locked door there's not a whole lot of monitoring going on.
I lost 10 pounds in that time and was a jabbering wreck by the time my dad died.
I did it for two months, but he'd been doing it for several years and I'm convinced it led to his death. It isn't uncommon for the healthy spouse or caregiver to suffer severe health consequences, and in many cases, die before the person they're caring for.
That's why nursing homes have staffs of caregivers, not just one person. No single person can be on duty 24/7.
As to the poster who ignorantly compares caring for an adult with dementia to caring for a child -- a child actually sleeps for a good portion of the night. An infant is confined to a crib, so if it wakes up it won't wander. A child isn't as strong, or as heavy as an adult, and a child has a functioning brain.
I had three kids in four years (the first with severe colic) and was also exhausted, but my kids also slept through the night after a few months. This won't happen with OP's mother. Medications don't metabolize normally in an aging brain, so sleep meds are not necessarily the answer either.
It's time for memory care, so you can be freed up to be her daughter again.