Going insane. Any advice?

What i did for the evaluation appt was tell my dad the doctor just wants to ask him some questions about a physical condition.
He also doesn't know he has dementia.
For the brain scan, I told him a bone density test.

What made you believe that you had to leave your job and do your mother’s caregiving full time? How will you provide for your own future if you try to keep this up? If you’re here to vent that’s fine, what you’re doing is beyond hard. But if you’re ready to change the situation and not do this anymore, let the group here know that and good advice will come your way. Please know your health and future matter too

Does she have other mental illnesses? How long has she been acting up? 2 yrs? 5 yrs? Longer?
You can't keep going the way you are. You must get her to Doctor to have check up & go from there. Get Dr's office to call you on phone. Put it on speaker so she can here that they need her to come in on "x" day at "x" time.
YOU cannot give up rest of your life for this BS!
You need to work-to run-to live.
What is the financial picture? When did your Dad pass?
Who cares what she wants?! This is about her basic needs being met & NOT at the expense of your physical & emotional-mental decline.
Do not feel guilty. Call Doc tomorrow. Get the ball rolling...
Tell her how it's going to go down.
Do you need to sell her house soon for $ to sustain her?
I would say she has Dementia & more.. but I am not a Doctor...

Figuring out your goal can help. To sort your thinking & then plan how to aim for it.

For Mother to understand her abilities & willingly seek medical opinion?

To obtain a diagnosis for Mother - to know what you are dealing with?

To arrange home help, whether she understands or not? Diagnosed or not?

To return to work?

Even to have a reason NOT to return to work? (Yes, this has been a reason.. a poster's partner was so unhappy at work they thought caregiving 24/7 would be easier!! Also pay more??!)

It can feel overwhelming. So firstly, what do you want?

I’m hearing often that Covid brings on cognitive decline.

Yes, dementia patients can get very mean.

Now you have to be in charge, not her. You need to keep seeking doctors until you get an assessment. Maybe get her to the ER and refuse to let her be released to you, and that might get some action. So sorry.

To activate POA for my mom, I needed her own doctor to determine that she did not have the capacity to make sound medical or financial decisions. I made an appointment with her doctor for a physical. I asked them ahead of time to administer a cognitive assessment as part of the exam. After two such appointments over a year's time, her doctor saw such a decline that he wrote a letter stating that her condition met the criteria in the trust documents to activate the POA. Point being that it may take some time and more than one appointment to satisfy the requirements of putting POA into effect. Not as easy as it seems. I hope you find your way through this soon.

My mom started sundowning and hallucinations in Sept/Oct. (lived with me since July. before that it wasonly .. a literal weird sentence said once evey couple of weeks. When whatever it is that happned, happened, she drifted into "crazy-world" and stayed there for a long time - as in waking up and going to sleep as "other mother". she would even say "im back" sometimes. thank me for caring for her. etc. then drift back off again. it was .. terrifying.)

As we didn't want to mess with haldol. hospice nurse rx'ed seroquel for my mom. A teeny teeny dose.

Basically it is a 25mg pill and I cut it into quarters, and she takes 7.5mg in the am and 7.5 at night. At first the nurse thought it would do literally nothing, but my mom is very med sensitive.

The difference is NIGHT VS DAY. Literally! Within three days of starting the med, her anxiety on my being gone.. vanished. Sundowning / suddenly thinking she's somewhere else (and I am someone else at times) happening 'instantly' around 3:30-4ish -- gone. No more talking in weird metaphors (she shoved me into the water wall = helped her take a shower in a bath chair) or trying to use the TV remote as a phone etc.

the "What's that? What's the noise, whats that light?" gone.

She drifted back into that briefly only one evening so far -- that was cause someone stole her catalytic converter out of her car, and stressing out over the car, she asked the "How many cats do you have? whats this one's name?" which was my cue she was drifting. Thankfully nurse had already warned me that could happen (nurse had also looked under my moms car), and told me if that happens to give her a half of a dose. Which I did, then the weird questions stopped.

I didnt want to sedate my mom into a sitting/staring at TV all day and she didn't want that either, which is why nurse is trying seroquel.

my god.. the beauty of my uninterrupted sleep... I can leave the kitchen for more than 10 minutes without panicked screming.. every day is still getting slowly better. <3

They Rx it for sundowning very specifically apparently, so it might be helpful. idk if other doctors would deliver dosages the same was my moms nurse is doing it but, worth a shot.
See if you can get dr or someone to treat it. You also need to be in top shape to care for her. So the medication benefit vs risk is balanced enough to make it a good option to try to stop the sundowning which is making it impossible for you to stay healthy.

Seriously, within 3 doses (36 hours) the weird stopped with my mom, and she
even started to store memories again.

Do you live with Mom?

If so, is that a long standing arrangement? Or you moved in (or she with you) temporarily?

If Mom's home, Mom does what she wants including refusing to see the Doctor. Mom's home = Mom's rules, right?

But she does not control YOUR actions. See the difference? You can make an appointment with the Doctor for YOU.

Take Mom with you if she is afraid to stay home alone. Let her choose: Stay home. Come inside to the appointment. Sit in the car.

You can voice your concerns to the Doctor. That you feel your Mother will be unsafe when you return to work. Ask for suggestions. Treat this as a starting point.

You mentioned she was on pain meds. Perhaps with the doctor’s agreement, she could “run out” of pain meds and “need” an appointment before they’ll refill. Part of ensuring she is ok for the refill could be the cognitive testing.

Also I’m hoping if it was a relatively abrupt change that they tested for UTI. UTIs for my mom rarely present with fever, but my goodness does she get markedly weirder. She only complains about pain when she’s actually urinating so you might not know unless you do bathroom care.

Please find, hire, kidnap (ok, probably not) someone to cover for you so you can go running at least a few times a week. It’ll do you a world of good to hear the rustle of leaves in your wake, smell real air and have the blissful sound of anything other than hysteria (yours or hers). I’m deep in a hellhole of misery and what you are describing isn’t likely to end soon. Please carve out your run time.

Elvis.

I hear you. I am so sorry that you are in this situation. Caregiving is the toughest job ever! As their needs grow, the more the caregiver becomes enslaved.

You are correct in saying that there is no time left for yourself.

Many parents will not admit that they are in need of more help than their adult children can handle.

Don’t focus on what she is saying to you. Yes, it’s annoying and frustrating but try to focus on what you need to do to move forward so you can resume your life.

You have become her security blanket. She is comforted by you but she may not realize that she is sucking all the life out of you.

You know that you are at the end of your rope. It sounds like you are approaching burnout stage.

Tell us what you have done so far.

Have you contacted Council on Aging in your community? They can send someone out to do a needs assessment on your mother.

Why can’t you get a diagnosis from her doctor? Has your mom seen a neurologist or just a primary care doctor?

What are your goals regarding your mom? Are you considering placing her into a facility so she can receive around the clock care and you can reclaim your life?

Wishing you peace as you continue in your caregiving journey.

There is a HUGE nasty side to dementia and sundowning time can trigger it big time. My Mom had dementia and that was about the time of day the anger would kick in and it was horrid. It is terrible to live through and every single bit of advice people give you is always the same....ignore it, go along with it, take it. You're supposed to find some superhuman strength that almost no one has to just be a punching bag with a smile on your face so you never, ever, ever upset the person with dementia. Meanwhile, your life becomes a living hell but that's okay.

The other alternative is ALWAYS put them in a home. Has anyone seen the quality of care these days even in a 5 star assisted living center? 1 staff person overnight for 20 people? Nobody can find qualified, capable staff.

I feel for you. I lived through what you are going through right now and it's hell. Sheer and utter hell.

I see that AC added “any advice?” To your post as they often do, I’d first asked if you were only venting or wanted things to change. If ready for change, and I really hope you are, start now to make decisions based on what’s best for you BOTH. Mom needs care, you need to work. You both need your needs met in an atmosphere free of the tension and resentment. This is in no way your fault, you’ve done your best, but the situation is too much for any one person to sustain. Ignore with all your might your mother’s comments as you make changes and decisions. Make that doctor’s appointment happen, by lying if needed, by cutting off her meds, by refusing to provide any help until she goes, whatever will make it happen. Send a list of your concerns to the doctor ahead of the visit. Call your local Council on Aging, explain the situation, tell them clearly that she’s a vulnerable senior and needs more help than you can provide, ask for a needs assessment. Don’t try to bargain or reason with mom, it’s only upsetting you both. You’re making the best decisions now for her, she’s lost the ability to make good decisions, this is exactly what POA is for. You’ll likely hit roadblocks along the way, so be prepared to find a way around. I wish you the best in changing this unhealthy dynamic and finding a better path forward for both you and mom

Reorganize your thinking about the moral issue. Is it more moral to let her go on as she is, ruining your life and suffering from dementia, being paranoid and all the rest of it….. or is it more moral to get the diagnosis and find her a dementia care facility where she gets the help that she really really needs and you do too? She is suffering big time. I know what I’d choose.

Elvis, you have been busy & making great strides forward. Awesome!

Re Long Covid: In my opinion, like other infections in the elderly, Covid can cause some confusion or have negative effects on cognition. Many probably recover as the infection does. However, if mild memory impairments already, sometimes the new lower level of functioning seems to become the 'new normal'. 'Never been the same since Covid'.. I have heard this a few times now.

Re following you around the house, keeping you in sight.

This is called *shadowing*. It is anxiety driven behaviour, very common in dementia. It is #2 reason for NH placement (as says a NH flyer) because it is VERY burdensome for the caregiver. Incontinence being #1.

Re guilt at thoughts of AL.
Each family that is faced with this must weight things up for themself of course. But somehow this helped me.. two Doctors I have spoke to, plus a friend, all had a parent dx with dementia. Said Mom (or Dad) couldn't look after themselves anymore - was not safe at home - so had to move them. Two went direct into 'Care'.
Zero guilt. Just the facts. I'm sure they went through the Mom doesn't want, I don't want.. too. But in the end, common sense. Can't look after yourself - move into care.

The other parent was moved into the Son's home. After 2 years of continual stress on the entire household, constant shadowing, wandering, refusal to bathe etc, a visiting younger relative (a Doctor) asked just why they were all killing themselves? That looking after someone needed to work for ALL of them. Grandma was then moved into a care home nearby, visited daily & the household was able to function again, the wife return to work, & all get quality sleep again. Grandma no longer 'shadowed' as she was always with people.

My Mother is a shadower too. I will never live-in. The day my Father cannot care for her is the day she will move.

The whole ‘long covid’ thing is confusing. For some people it seems to mean ‘can’t get out of bed, can’t do the washing up’ etc. For others, it’s just like ‘don’t feel right any more’. My experience is that Covid makes everything worse – whatever the problem, it’s worse. Let’s hope for it to get better!

Elvis,

I would try to get her to a Neurologist. I never told my Mom I would be taking her to a doctor. Just got her ready, in the car and got her their. Time for little white lies. My Mom loved her Neurologist. So after the first visit, she was ready for the next. You need to find out what type of Dementia she has so she is given the correct meds if needed. I would take notes with you. Mine were one sheet of paper, one sided and 14 Font. Then 1, 2, 3.

Such as: 1. Sundowns 2. Aggressive 3. Denial 4. Shadows 5. Good at "showtiming" 6. COVID

Make any explanations short. This gives the doctor some idea of the questions he needs to ask her.

Lots of opinions & advice being offered here but you must choose what is best for your health & your Mom's safety at this time. I am also alone & 64 years old still working full-time & taking care of my 90 year old Mom. I work in a Neurology office for a group of Neurologists & Neurosurgeons. I agree with others who have posted that schlepping your Mom around to doctors & tests is futile when there really is no pill or cure for dementia or alzheimers. I see it with elderly & their family members every day in my job. Spouses & children searching for some pill, cure, or fix for what is unfortunately just a sad & difficult aspect of old age. If you go to a doctor & present them with your Mom's issues they are obligated to treat the patient. That means they will do cognitive testing, send her for EEG, CAT SCANS, MRI'S, etc. It's all very difficult & hard on the patient & the family to no real value in the end except to find out what you already know that your Mom has Dementia. I hope you find the best solution for you & your Mom🤗

Good Morning,

Some Nurse Practitioners will come to your home and do an evaluation. Even though you seem to have your answer--dementia diagnosis, don't rule out medications.

During the Pandemic when my mother was rushed into the hospital the person she was then is not the person she is now. She has Lewy Body, however, with the right medications and an "adjustment" period some of her faculties have returned and "some" of the symptoms are controlled.

I am NOT a medical personnel but to do nothing things will only spiral out of control and then probably mother will be taken out in the rescue usually at 2AM on a rainy night when you have no make-up on.

I agree with others on the thread--the CAT scans, etc. the noise scares the elderly. I had to stop the technician for the 6 month follow up as I thought my mother was going to have a heart attack on the table. I accompanied her inside of the room. The technician was wonderful. I also documented this in the Geriatric Neuro Pysch records on the portal so they won't think a test was overlooked.

A Geriatric Neuro Psych Doc "may" do a Skype evaluation. I'm not sure--during the Pandemic technology came in handy. I'm not sure what they're doing now.

Are you up at night...there are things that can be done to give you both quality of life. Every situation is different and an only child can be difficult because you don't have other's input.

I hope all of us here on the thread can be of assistance to you. Read everything over and see what sounds right for your mother. The doctors are booked months in advance. Ask the scheduler is you can be wait-listed. Put Mom in the car and take her to the doctor's and out for lunch after.

Go prepared--a list of symptoms, how long, list of medications. You need a good primary care doctor that will write referrals. A plan of action is needed even at the age of 87.

Check out Teepa Snow on YouTube. An Occupational Therapist, fabulous lady!

Study mother's health insurance--what is your coverage for Durable Medical Equipment--hospital bed, shower chair, nozzle, CNA, VNA, etc. A one morning a week respite program so you can go out and run.

I know you have no siblings but if you were my sister this is what I would recommend.

Don't get discouraged. You are on the right track participating in this forum. I will pray for you and Merry Christmas...start making plans for the New Year. Get a notebook from the Dollar Store and brainstorm.

May be time for memory care. I only am saying that because there are trained people out there that know how to handle the sundowners in the afternoon. And also you deserve to have a life too. There is plenty of people trained to help. Reach out to a home health care company and ask as many questions as you can think of. Just make sure that you take care of you. You can only help her if you are rested and eating well.

I have dpoa and medical poa both shared with brother. In my case poa is only there to carry out mother's wishes. Elder lawyer cautioned how difficult it would be ruling mom incompetent. We got her to a geriatrician who diagnosed dementia and stated she needs the benefits of ALF that she isn't getting at home (alone). Also so mom could sign contract herself since waiting til she was worse would create necessity for incompetence ruling. Somehow my brother got her to agree to view 2places after we had viewed 4. Used a local senior advisor to navigate (think similar to a place for mom). Need to counsel everyone on her refusal to move. The first place salesperson did such a great job, mom agreed to come try it for 2weeks. 2nd place didn't do as well but everything changed when she got to talk to a group of residents outside. Unfortunately this tactic resulted in her thinking she was going home after she moved in. But it became clear that she was much worse than we thought.
It's been 1.5 yrs and she can't sign anything now. 1.5 yrs roller coaster but at least we didn't live with it .
You need better perspective by getting to geriatrician and senior advisor. You might be able to get her into a place on a respite basis with her agreeing. Maybe lie, say you need surgery. Then go from there. She will get evals on respite.

You need a lawyer. The cost might be chargeable to the estate.
Me, I had a stroke and am now being punished for it. My ex got the house and both cars. I got the dog.
Everything changed especially her feelings.
When we met she had no credit, was driving an old Chevette, no bank account or credit. I got her a credit card, a new car, and she moved into my house. I suggested she apply for a job with the federal government. She retired from there with full benefits. For her birthday I took vacations with her, to Bermuda then Hawaii, then the Outer Banks, London one year.
She got pregnant but aborted it without discussion, refused to discuss topic of children.
If you encounter her, run for you life. Her name is Gail.

Call 911, go to hospital. You/They can then request an evaluation from a nursing home . (Even if you must tell your mother it is short term and this is what the doctor wants to help you). They can send her to the nursing home from the hospital. Do not return home. It can be out of your hands. They can evaluate her at nursing home and do 100 days more or less for rehab and reevaluate.

Unfortunately, you might have to "trick" her to get her to get a neurologist evaluation.

Use Therapeutic Lying: "Ok, we're going for a ride, so that I can see the doctor. I'd love it if you could go with me . . . "

Our loved ones can become very mean and combative, so she will need medication ASAP, to help.

And, consider joining the Alzheimer's Dementia Caregiver's FB Support Group. You will get great support and advice, and you can vent without judgment.
https://www.facebook.com/groups/dementiacaregiversupportgroup/?ref=share&mibextid=NSMWBT

I was a homecare caregiver for almost 25 years. I now operate my own homecare business.
I will tell you what I have told every family member in a situations like yours.

The demented "loved one" can no longer be left in charge. Stop obeying their orders.

Bring in outside hired homecare. Your mother will fight you on it. Do it anyway. It's not about she wants anymore. Now it's about what she needs. Wanting and needing are often two very different things.

You say she starts screaming if you've gone to the bathroom if she's left alone for a second.
You're allowing a 'shadowing' habit to form. Don't do that. Ignore her when she starts acting up about you being gone, completely ignore her. DO NOT allow a shadowing habit to form. Let her scream and cry about you being in the other room. Just don't go running in when she orders you to. When the homecare aides you WILL hire start coming, you leave the house during their shifts. Ignore all of her complaints. When she starts up, you tell her plainly that the things she's saying are not true and that you will not listen to her nonsense. Then walk away.
As for the constant repeating. That's called a dementia loop. This is how you deal with and break a dementia loop. You answer a question a couple of times. You respond to a statement or give an explanation a couple of times. Then you totally ignore the topic of the dementia loop. Not your mother.
It's maddening, but this is the only way that really works. Maybe distraction to something else might work. Try it but don't be surprised when it doesn't.
I remember a client I had years ago. I did a five-hour shift weekdays. Every second of the day when she wasn't actually eating something, it was 'I'm hungry' over and over. I'd tell her twice that she ate five minutes ago. Then I simply ignored it. I didn't feed her more. I didn't tell her ten thousand times that she'd already eaten. Usually after an hour or two of repeating it would stop.
For you, it's time to look at memory care facilities for your mother. Homecare aides are temporary respite for you.
Or when her delusions and paranoia start up, call an ambulance and have her taken to the ER. Follow with your POA documentation. Ask for a 'Social Admit' because you unable and unwilling to be her caregiver. That you have to go back to work and she will be alone. Beware of social workers making all kinds of promises about there being endless resources and homecare available. There isn't unless your mother is rich. Don't back down on your refusal to take her home. They will then assess her for dementia and will not pass that test. The hospital will keep her admitted until they find a memory care to place her in. This way will speed things up and get her in the system a lot faster than you could on your own.
It's no reflection on you or how much you love and care about your mother. You're living in an impossible situation and your mother should be placed.
As for a mean nasty side of dementia. It's ALL mean and nasty. It's a mean and nasty disease.

You have to take control make her appointment with her doctor and have them come to her home and as far as you needing help find someone to come out anyway she might get mad but she will get use to that person eventually .I know you don't want to go against her will but you have to do what you think is best Believe me she will get use to the help.My company will love to help you with the Care for your mom .

According to the feed, ten hours ago you wrote: "today mom went to the next foor neighbors house and banged on the door and told them that myself and 5 other people where in her room....she claims that I have a brother and that she doesn't have a son..."

This reminded me so much of my mom when she had an undiagnosed UTI. For three weeks she did strange things, dad would have her taken to the ER, and the next day bring her back home, only to have the behavior get worse. After the third event, I gave him advice that I received here -- tell them he was not capable of caring for her and could not bring her home. It was total truth, he was no longer able to take care of her and was spending most of his time hiding from her! This has the terrible name of "ER dump" but in all honesty, it was the best that could be done for both mom and dad. Mom passed a few weeks later in a nursing home, but her last days at home should not have been the way they were. Had she been diagnosed with the UTI sooner, she may have gotten to pass at home instead of in a NH.

As for the UTI -- have a culture done, results take several days. Symptoms of a UTI in an elderly person are not what you would expect. No odor or pain with urination. No fever. It manifests in the brain behaviorly. Just a few things mom did: chopped up her favorite plant, a beautiful Christmas cactus that had thrived for thirty years; sprayed bug spray in my father's face and the person who was there from hospice; spread feces all over the house -- walls, curtains, rugs; locked herself in the bathroom and stopped up the toilet with towels (dad had to have a neighbor help him get the door off to get her out and stop the overflow); shoved dry ramen noodles down the sink and then poured boiling water down the drain with the intent to clog the drain; ran around outside naked from the waist up; and the crowning event was when dad woke up to see mom standing over him with a butcher knife, she said, "Everyone has to die, tonight it is your turn." He wrestled the knife (found out later she actually had two knives, one in each hand), from her and called the police. He ran outside and sat in his locked car in his underwear until the police got there. That was the last straw and when he finally refused to bring her home from the ER.

Please don't let things go this far!

You sound like you are at the end of your rope. Lots of good advice in this thread. I highly recommend you get her evaluated, asap. Take her to the ER, or call her doctor and tell them it's an emergency. Been through this with my sis, and her doctor was a huge help in getting her seen by a neurologist.

Here’s how I got my father to the doctor when he refused to go. I told him that his health insurance required he has an annual physical and some common tests or they would cancel his insurance. I lied further to say all insurance companies do this, even mine, so we will just pop in and see the doctor and he will give you a once over and that will be that and then we will go have lunch. That got him to go. That doctor told him he had Alzheimer’s which really pissed him off. He kept saying the doctor was “young and stupid” and he was fine. So I used that to my advantage and got him to go for the second opinion I needed to get the second diagnosis letter from a different doctor to activate my DPOA by telling him that he could be right and we should find another doctor “who knew what he was doing”. Obviously the second doctor made the same diagnosis. You have to be crafty and creative to get around their moods.

You might want to enlist the help of her doctor. I had a few conversations with my dads doc about his worsening condition (he still lived alone, he had to fall down the stairs and lay there for 3 days before he was hospitalized and diagnosed) during that process I learned there wasn’t much I could do unless I went to court to have him deemed incompetent. This would be easier if you had a diagnosis. Also, you MUST get respite care so you can have a break. Let her howl. They are trained to deal with it. You must step into the role of parent now and make the decisions whether she likes it or not. The disease does make them say and do things they normally would not and they can be paranoid that you are against them and doing things aren’t really doing. Take action before you loose your mind too!

Try to get yourself a social worker and get her to the Primary Care doctor and Have him refer her to a Nuerologist . It took My Dad falling and Having a stroke before I Got any real Help and people coming in for Physical therapy and Bathing . Also a Memory test and a Nureologist . Your Probably worn down - see if Care.com Has any People That Can come in and give you a break . I would go to community acupuncture and meditate and then get something to eat and write down what I you need to get done. Take care of yourself first because you will Lose your Sanity and get sick . Remember this is Like taking Care of a small child and you are The Parent .