I have Panic Attacks and hit/kick, talk in my sleep. My mom has woken me up for the last 3 weeks everyday at least 3 times. She asks non-stop questions that aren't important or tells me about her hallucinations, (she hears me talking in my sleep and thinks I'm talking to her, someone stole something, someone was talking to her through the tv or even leaving our apartment to chase after people, (who aren't there), she says knocked on our door or walls).
I'm panicking more and kinda fear sleeping because she sometimes stands over me or sits in a chair in my doorway. She does understand sometimes that this is making me unwell, but then goes back to doing it. This morning she sat in a chair at the end of the hallway, waiting until I woke up. I even switched my sleeping pattern to daytime instead of night and even though it's called "sundowning", she did the same things!
I told her I would lock my door but she knocks like the police. This is causing me to start having a relapse of attacks not to mention I'm tired. I don't really want to lock my door on her in case there is an emergency.
Are there any suggestions or techniques I can use to help us? We both have Medicare and limited income, but I've thought about a night aide, (she said no).
Talk to her doctor about any meds that may reduce the behaviors, or a sleeping aid to help her settle down and rest at night This is not a for sure solution, as I have read on other posts.
Your mom has said she doesn't want a night aid? I don't think she gets to make this decision since she's not the one suffering. Get the night aid. Or get some Tylenol PM and see if that helps HER to sleep (but clear it with her doc first if she's on other meds). Another option would be to have her go to adult day care and then you sleep during the day while she's gone. It is essential you are fully rested every day so I hope you can find a solution that works for you!
No one can totally prepare for caregiving because each situation is varied according to the individual. It’s all hard.
I commend you for reaching out to others because it isn’t always easy to do. Some of us like to handle things on our own until we are approaching burnout stage.
Others feel badly about complaining or simply prefer to keep their feelings private for various reasons. It can be awkward to share personal experiences.
This forum is a good place for information and to vent. Take what is useful to utilize in your situation and put aside the rest.
I second posters who have said that it is beneficial to speak specifically to a doctor about what is going on and ask for feedback in order to improve this situation.
You absolutely need your sleep on a regular basis to stay healthy, physically and emotionally. You can’t hang by a thread and be productive at the same time. Most of us can function losing a little bit of sleep here and there but it’s disastrous to lose sleep night after night.
Sometimes when we are faced with difficult challenges we feel there are no viable options to try.
Sometimes there are other things to try. It’s so easy when we are exhausted to fall into despair and give up. I am glad that you are searching for answers.
The sensation of feeling trapped is awful. I sincerely hope that you find a helpful solution soon. Best wishes to you and your mom.
I thought maybe people who have been dealing with it would be able to tell me what they've done or gone through. I'm sorry that some people here seem to be pretty bitter about their experience, but my mom can still talk to me about things when her speech is decent. Sometimes, she veers off the road. Somedays aren't so great and then she surprises me with comments about politics or medicine. While my relationship growing up wasn't great and even abusive, I love her. I won't treat her like she's nothing and toss her away nor will I act like she is a vegetable with no awareness of what's going on. I know what's coming, but until then who knows. I'm also not being an idiot and thinking she can completely make sensible decisions as if her brain isn't damaged. I think this is what has already frustrated me with some people here, but like my mom told me, GIGO. Thanks for your reply.
I am sorry if this sounds argumentative and I mean no disrespect, BUT (there's always a but after a lead in like that, right??) I wonder if your mom is doing as well as you are saying when stating she has the right to make her own decisions re meds/care. From your description of her behavior, I have my doubts about this. I could be wrong, but thinking that maybe she is not totally competent.
Sometimes "therapeutic lies" are the only way to deal with dementia patients. As long as it is done with good intentions and not to harm them in any way, it can be a useful tool.
You NEED your sleep! You can not properly care for mom if she is scaring you and increasing your anxiety, etc. Your health WILL suffer. So, the options include things like meds for her, an aide for her to keep her away from your room while you're sleeping, or maybe having to put her in a facility. There is only so long you will be able to handle this behavior alone at home.
GOod luck.
True lies are told to hurt others, cover up something one has done, etc. When we have to use "lies", it is only to help the person with dementia, not to hurt. You can't argue with, correct or convince anyone with dementia that what they think or say is wrong. Most times it is just easy to "go along" with their reality, perhaps guiding them to a better place when they are scared, etc. However, when they ask for someone who has passed away, many of us skirt the issue as best we can. Telling someone with dementia the "truth" would require hurting them over and over, every time they are about that person.
You have to get creative and give answers that are vague, but satisfy them at the moment. Don't think of it as lying. We do it to keep them happy and calm, not to hurt them!
Legally and on some level morally yes, she has the right to make decisions, but what good would that be if this takes you out of the picture? Sleep deprivation can be deadly.
She needs to be evaluated and perhaps given medication to tone this down. Check for UTI. The only time my mother had real symptoms of sun-downing was when she had her first UTI in MC. The lowest dose of an anti-anxiety was just enough to take the edge off, keep her calm, NOT doped up and then she would go to bed at her normal time.
Our mother was still very much "aware" when we made the decision to move her to MC. Not suggesting you move her, just making comparison. She didn't want to move, refused to consider it, and EC atty said we couldn't force her, need guardianship. Facility we chose wouldn't accept committals. So we had to wing it and come up with a way to "convince" her to move. Just before the move was planned, she injured her leg and developed cellulitis. If we weren't moving her then, she might have died from that (she lived alone.)
Even now, in MC, staff can't force any residents to do/take what they don't want. Mom just had a mini-stroke and REFUSED to go with EMS. They contacted me - my thoughts were, initially, even if I were to say take her, you'd still be forcing her to go! At this stage in her life, I said take her if YOU can talk her into it and get testing done, but no hospitalization. YB agreed (we are both POAs.) She wouldn't go. She has dementia, almost no hearing, was being treated for Mac Deg, is overweight, takes BP meds, refuses to stand/walk on her own. She's been there over 3.5 years and just hit 97. She and my dad both said they didn't want extraordinary measures, and although they *might* have medications to ward off add'l strokes, to what purpose, given her current quality of life (all symptoms of the mini-stroke went away, except right side weakness and some slurring of words - she's right handed, so having trouble eating, etc too.)
The point I'm trying to make is YOU have to make some decisions. As it progresses, you will have to make more decisions. You can't leave everything up to her as she isn't really aware that she is doing what she does. She may or may not do ok at day care - what if she doesn't? What is plan B? If your health is compromised, then what? If you are out of commission, she'll end up somewhere and THEY will decide what meds she takes.
There is no cure for any kind of true dementia (there are conditions that can cause dementia-like symptoms, I'm presuming she has been tested and Dxed), but they do have medications that can treat some of the symptoms and make life more bearable for her AND whoever is caring for her. You need to get her to doctor(s) and have her checked. Hopefully they can suggest something she can take that will tone this down and allow you some peace!
Although in the earlier stages they seem somewhat aware, decisions DO have to be made for them that they might not think they like. Some issues you can let slide, but this one is bad for YOUR health and well-being, and being agitated, hallucinating, running out are not good for HER. BTW, you don't want to lock her door. In an emergency, they might consider this neglect/abuse. Medication would be better and safer (it may take trying different meds, but Lorazepam worked for mom, 1st time, every time, within about 15m and there is no weaning off period, so if it doesn't work, no harm, move on to something else.)
FWIW: While I myself do whatever I can to avoid medications (if there are natural alternatives, sign me up!), there are times when it is better to take something than it is to avoid them. This is likely one of those times.
I guess I just don't want to do the wrong thing.
Somehow your requirement to get rest has to be treated with the same regard as your mom’s right to roam about and wake you.
If that takes medication or a caregiver or sending mom off to respite or anything else you can think of, this issue needs to be elevated to where your well being is at least as important as moms rights to say no. You need something to help break the cycle. A bed routine and as was mentioned exercise during the day are helpful. No caffeine or sugary foods. Ideally you sleep at the same time. At night.
At this point you may need some intervention to get back on track. Call your Area Agency on Aging and see what services might be available for you and mom. They can assess your needs and make recommendations.
I hope you get rest soon.
Since you feel the need to be right yet are clearly uninformed, I will educated you...if you are a disabled person, you CAN get Medicaid/Medicare if you didn't reach 21 by the time you were considered disabled. Social Security is actually called Social Security and Survivors Benefits.
Direct quote from SSA ---- "Social Security survivors benefits are paid to widows, widowers, and dependents of eligible workers..."
So, NO! I'm not delusional! Educate yourself before you make assumptions and post more of your criticisms about someone's authenticity. And try a little respect/compassion when someone is sharing their information on a "supportive" website rather try to cast aspersions and doubt.
As far as my requirements, I think we all require sleep and have the right to it. Both her and I, as well as anyone who is a caregiver dealing with a complicated situation. If your method of "advice" or "support" is to passive-aggressively attack someone under the guise of feigned innocence, then you are a pretty toxic entity. And I say, "NO THANK YOU", pass it to the next person who doesn't see through your "niceties".
Put a Lock on your door and set up cameras in the house.
After Cameras are installed, lock her in her room at night.
Pup a Deadbolt on the doors so she can't go outside at night.
The few results in look up talk about locking house doors so they can't wander, but ONLY if you are locked in with them. Locking them into their room is not acceptable and could be illegal.
OP can lock her own door, but:
"I told her I would lock my door but she knocks like the police."
I suspect even if you take the chance and lock her into her room, she is going to raise a ruckus and OP STILL won't be able to sleep!
Something else that will promote relaxation is magnesium. We take a chelated magnesium supplement and give to mom at least once a day and often twice. It's a smooth muscle relaxer. You can also buy magnesium oil in a spray bottle (Ancient Minerals is the brand I use) and use that a couple times a day - you can spray it on anywhere and rub it in. Hope this is helpful
What is the reason she is standing over you? sitting in the chair?
To me, she is trying to protect and watch over you. like the Moma bear.
Is it a hallucination when she hears you banging on the walls and talking. Her anxiety, fear, and paranoia make up the stories of others stealing and then chasing them. The voices and bangs are real.
Labelling it sundowning may not be correct. She needs to be assessed by the doctor for her mental state...is this dementia or another mental health disorder that is being masked under the guise of dementia. Paranoia can be an underlying factor which does go along with many diagnosis.
Medications and locks on doors are a form of restraining your mom. Least restraint is best as this can escalate the behavior not eliminate it.
Try to find the reason for her actions. Repetitive behavior can be modified.
Catch it before it happens or as it is happening and divert her attention to something else. Play music she likes at this time so she hears this and not your panic attack. This takes time and more sleep deprivation but in the end it will curb the unwanted and you will both have better sleep
I'm not sure if it is sundowing, the nurse and doctor said it was. As far as the possibility of mental health problems, she's had an MRI, 2 CAT scans, 2 hours of neuro-psychological assessment, and seen 2 different teams of neurologists as well as having different infectious disease tests and a few genetic tests too. But they still say it is possible to have two conditions going on, but with the results from the MRI they said her delusions/paranoia/hallucinations are in line with frontotemporal lobe damage. It's weird the way the brain works, isn't it?
Lockett2166
She should have a thorough check up, to rule out any other potential cause for her behavior. Presumably she already has had cognitive testing and Dx, but there can be other reasons for these behaviors and with any cognitive impairment, she likely won't be able to tell you about it or describe it.
Depending on the specific type of dementia, and results of an exam, there are a variety of medications that can be tried. Keep them as simple as possible and dosage as low as possible. We had to use anti-anxiety during mom's UTI/sun-downing episode. That was the only time she had that kind of sun-downing.
They had also used it when she first moved in (don't know how much they actually used, it was one Rx, short term, and I stayed away for about 2 weeks after the move.) I manage her Rxes, so I'd know if she was prescribed more!
The nice thing about this (and some other meds) is there is no need to wait 2 weeks to see if it works (15+ min, first time, every time) and no weaning off if it doesn't. It does have a fall risk, but it NEVER caused a problem. The only tumbles she had at MC occurred when she WASN'T taking it! It was just enough to take the edge off, send her to bed at a normal time, sleep all night and NO sun-downing!
Again, I am all for staying away from drugs whenever possible, but this one was worth it!
Check with pharmacy to ensure no conflicts with any existing medications she takes. Obviously make observations while she is taking any meds, esp new ones, and discontinue if there are negative results.
You will also have to speak to your doctor about medication.
I get the feeling it is ONE. You already know that Alz & other types of Dementia are progressive. So if you are trying to do this alone, please ask yourself with honestly, why.
Do you mistrust other family members who have offered help? Maybe none have? Do you feel anxious about using day care? Or worried about funds for home aides? Maybe Mom trusts only you? All completely understandable.
Being a sole caregiver can be called 'a lone ranger'. Many people have the best intentions but fall into this trap over time. And it is a trap. It alienates you both from the wider world, Mom becomes more & more dependent on only you, you lose every other part of your life (social life, friends, holidays, career, hobbies). Now you are losing sleep - a critical essential life need. What started out as a care role is not providing the best care for either of you. Not your fault! But time to act.
Please reach out immediately to your Doctor. Get more people in your team. This may be immediate night aides to get through the sleep crises. Then maybe add daycare. Keep reassessing the plan & the team as you go along.
Far too many caregivers, especially 'lone rangers' have suffered their own health crises, leaving themselves ill & then others put their LO straight into care. I personally know 3: heart attack, cancer,
stroke - LOs all placed into care. But enough doom & gloom.
I admire you for taking on this hard road but both your health & your Mom's will benefit from a bigger team. Please consider it.