Hello!
Only child caregiver for 87 year old mother....undiagnosed dementia...all the classic examples are there- repeating the same things over and over and over and over again, paranoid accusations, forgetting who I am, hallucinations etc.... I have tried to get her in with the doctor to get an opinion on her cognitive decline issues but she refuses and claims that it is me that has the memory problems...In the living trust it lists me as durable POA...what good is durable POA if you cannot on record get a diagnosis from a doctor??? I am her primary caregiver 24/7...on LOA from job taking care of her...don't know if I'll ever be able to return to job...tried to tell her that some outside help would be good....she doesn't want outside help....only me to be with her....this is slowly driving me insane! Simple things that I used to do like running...I can no longer do...if I'm gone away for a half hour,,,she screams that I've been gone all day...hell, I can't even take a bathroom break to take a piss without her screaming that I've been away to long! Is there a mean/nasty side to dementia? I dread the afternoons, because the personality switch kicks in and it s draiiiiiinnnnniiiing to be around and to be the subject of some of the things she says..."yeah, just don't talk back when she starts going crazy and is mean...just suck it up and take it"....easier said than done. Peace! Eric
He also doesn't know he has dementia.
For the brain scan, I told him a bone density test.
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...
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?
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.
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.
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.
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.
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.
Yep. There was a poster who's MIL kept calling up, wanting her son to get on her roof & clean the gutters out. The son had just turned 80!
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.
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.
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.
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.
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.
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.
I will probably get ripped a new one here for saying this, but I've never personally known a 'Gail' who wasn't an total a$$hole and I know a few. That's the God's honest truth too.
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 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.
This forum is not a place to promote your business. Please stop trying solicit potential new clients.
I do not solicit new business for my homecare agency here and neither should you. Knock it off.
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!