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
Can you get in touch with mom's lawyer to clarify what needs to be done?
In your shoes, the next time mom "goes off" in the afternoon, I'd call 911 and have her taken to the hospital- say you fear she's had/having a stroke.
Once she is in the hospital, find the social work department and tell them that department can no longer be cared for at home. Leave her home. Do NOT pick her up, sign for discharge or in any way enable her to return home.
Got Mom into the doctor under the disguise of a arthritis knee appointment, the doc asked my mom about their phone conversation two days earlier and she told the doc she never ever spoke to him, he then asked a series of questions.... do you know what day, month, year it is etc... she didn't know, she didn't know what city she was in at that moment.... I followed up with doc and asked if he could write a letter re my POA to be activated..he said the following:
"Hi,
I can write a letter regarding that, but it would help to see a copy of the POA if you can send that. It is not common for their to see a two physician requirement on those, so I may need to see what else it would specify. We can arrange a phone appointment with a colleague of mine after, and that should be enough information with the documentation I have for them also to concur. Please get me a copy of the POA if possible".
...I hope this is the start of me gaining an active poa??
After over a decade and a half of spoiling my husband I inadvertently made him unsocialized by being his everything at all times. He was fearful of dementia day care and acted like Yosemite Sam saying that he was going to shoot up the place. In this day and age I was sure that they were going to reject him. What you may think is hopeless can be managed, BY PROFESSIONALS. It took about two visits and he comes home up lifted and sweet with no memory of where he was except that it was good.
I bring him to the facility. They see him coming through the locked glass doors and welcome him in by name always. Good morning David. It's so nice to see you again.
A kind gentle hand on his arm guides him in, I am positioned behind him. I don't go through the door. I get a quick nod from the staff indicating that I can go, that I should go, and I disappear for 6 glorious hours.
I've overcome my need to control, a big thing for me and more than I was willing to admit. One month into his attendence I've recently progressed in my ability to let go by taking advantage of the option of having a little bus bring him home.
So very much on the edge, why did I wait?
My husband got use to day care because prior to joining he and I attended "memory cafes" there to share pleasant times with other couples on the same journey. One time puppies were brought in to one of the cafes. Another time my David started a painting and then the caregivers and the loved ones swapped rooms and I finished the painting. Memory cafes and many other activities are free. The staff well know that the caregiver needs attention and help too. We're all on the brink. At any rate, by joining these events, the drive to this location, the building, the rooms and the staff became familiar.
Believe me I know how difficult it is to get further immersed in this culture by getting involved with such services but it's actually the only way to get relief.
Btw, not that this will make it any easier, mean behavior comes from fear, loss of control, confusion, it's self-protection in a childish way because of the loss of filters and knowledge of appropriate behavior.
I am very reactive, inside, and it takes gorilla strength to not react to his INCESSANT MOUTH and negativity. I've learned it's okay to walk out in mid harrangue and do the laundry. Put headphones on. Not responding is not sucking it up. It's the sane person taking back control.
If she says you've been gone too long, all day, tell her you've been two days, smile and say you missed her and your happy to see her again. Another time tell her you went to church, or went to meet with your support group.
Stop giving up control. Take a detached bird's eye view of your situation and condition and get cracking. Call a hospital and talk to a social worker and anyone elso you can for guidance.
You must find a support group pronto. You must let someone help you.
She needs to get to a doctor and see what they think.
Yes, dementia has a mean side. Certain types of dementia can exhibit violent outburst and even physical violence.
If you have to go back to work and she is living alone and cannot make good decisions and cannot safely take care of herself, you may need to call Adult Protective Services. They will go to her home and evaluate the situation.
This will not be easy for you. The name calling and the threats will be hurtful. She will be mad, but just know that you are making decisions to keep her safe and cared for.
My mother had early stage dementia but possibly more health and physical issues than you've described and I was able to convince her to go into assisted living (reluctantly and she still asks to go home). It sounds like you would need A LOT of in-home care which is even more outrageously expensive than assisted living (also private pay) or memory care facilities. I'd suggest you start visiting your local memory care facilities and seek their assistance on how to make that transition. I think this stubborn and difficult stage of dementia is very common.
Eventually my mother wrote a suicide note because I refused to leave my own family to care for her 24/7. I used that to get help. Phoned EMS, showed them the note, police came, off to hospital, I cried that I could not keep her safe so either she had to go or I had to give up my kids. She showtimed her way out of the hospital but I raised hell. Got her in private pay care. Big $$$ but my life has value too. Perhaps I video of your mother’s behaviour would get her admitted for testing.
Those who didn’t believe there was anything wrong with her were shocked when she was finally assessed and she didn’t know her town (of about 20 years), age, grandkids or the year. In fact she took off on the hospital staff several times, making my point for me.
That put me in charge as substitute decision maker. She is now in care, and got a permanent placement last spring. She’s declined such that she doesn’t know me, which, frankly, is a relief, as I’m no longer the target of her rage. I’m just some nice lady who visits.
The moment an opportunity presents itself to call for help, take it! Behavioural, physical... whether you call for an ambulance, police, or take her to the ER for a behavioural change that could be due to a UTI, you must jump on the opportunity to get her condition recognized and outside help. Record events by video or in a diary. Even if she rages. Know this: your feelings are just as valid as hers. There is no reason we caregivers have to spend the rest of our lives in misery trying to appease someone who is impossible to please. All you can do is insure she is safe.
The only time my mother is not yelling my name and making demands is when she is asleep. And she's loud. She's sitting in the kitchen yelling as I type this. It's 3:20 pm and she's been at it since she got up at 12:30. Her bedtime is 5:30 pm.
Every day I try to keep my head above water.
My mom has been deceased for awhile now and I still remember her constantly calling my name for assistance.
Wishing you peace as you continue on in your caregiving journey.
When the ranting, raving, paranoia, and accusations start up call an ambulance.
Don't tell her you're calling one, just go ahead and do it. Show the paramedics your POA documentation and tell them that you want her to get checked out at the hospital. This is your chance to get some things done.
Please call 911 next time.
a POA can be either health care or financial. Which do you have ?
The less you tell her the better as far as why she is seeing a dr. Tell her it is an annual check up. But call the de office ahead of time for an appt and disucuss she needs assessed for dementia. Also they will probably give you checklists of what you see she is doing .
she is a lot like my Luther. Expects you there 24/7. Unrealistic. She is slowly draining your sanity. No one can live as a slave like that.
call area aging Dept or senior care and start discussing what you see in her and her needs and find resources to get her into a care unit and nursing care.
This is something you need to take control of and arrange.
Do not leave it up to her to make these decisions because she (mostly likely) doesn't have the cognitive ability / brain cells to do so.
If situation left as is, she'll drive you to the brink ... No sucking it up - you need to take control."
Yes, it is difficult or challenging getting her to an MD.
* See if you can find one who will make housecalls. I know . . . insurance doesn't pay, expensive ...
* Often / sometimes, a fall or something else gets a person into the hospital for medical attention and then dementia is diagnosed.
* Sadly, you may need to 'wait' for this something else to happen before she'll get the MD diagnosis she needs.
As someone said below, if you are able to call 911 and get her to an emergency room, do it yesterday. (I didn't realize this was an option). It is AN EXCELLENT IDEA.
* IN THE INTERIM, get sitters or caregivers
--- as you need to take time off and get regular respites.
* If it will work, tell her you are taking her out for a nice meal / dinner or something she'd want to do - willing to get out with you, get in the car.
- Yes, she'll kick and scream when she realizes where she is going. So what? Expect this and do what you need to do. And, then tell her you PLANN[ED] to take her out for a nice dinner, TOO. (Keep your promise or say something to appease her - do not argue.)
* At ALL costs, you want to maintain your own mental health. If you go off the deep end, she has no one else. Take care of yourself.
- Do not 'listen' to her when she says "I don't want anyone else..." - you do what you need to do for her well being, and yours. Call in the troops.
YOU NEVER EVER want to argue with a person inflicted with dementia. It is more than a NO WIN strategy. It is emotionally and psychologically draining for all concerned. Do REFLECTIVE LISTENING, i.e.,
- acknowledge her words (I hear you saying xxx)
- Stop
= no argument
+ she feels heard (most likely or possibly she'll feel you are listening) so she is acknowledged.
= You then do what is necessary. Period. Take care. Get people in there.
Gena / Touch Matters
No one wants to find themselves fighting a battle like you are dealing with. It’s normal to be frustrated and even angry in this situation.
You feel alone being an ‘only’ child. I get that, but I have news for you, there are many caregivers who have multiple siblings and none of the siblings help. So, they are ‘alone’ too.
The real issue is that this is too big of a job for a caregiver at home to deal with on their own. You are in over your head.
She isn’t going to change. You know that. You need professional support. You need physical and emotional rest or you will go insane.
You say that she is threatening to call 911. Let her do it. She needs to be evaluated and receive proper care. You need direction from professional providers on what to do next. Speak with the social worker at the hospital and ask about placement for her. Specifically tell them that you are no longer able to care for your mom at home.
She isn’t ever going to see to reason. So, stop trying to reason with her. Start deciding what is best for her and most certainly what is best for you. It’s clear as day to me that you need a break and possibly don’t want to be her caregiver at all anymore.
You do not have to assume the responsibility of being her caregiver forever. You’re entitled to resume
your life. Oversee her care done by a professional staff and then you can be her son and advocate.
Wishing you all the best.