I found out from my mom's doctor, he noticed signs of dementia years ago and referred her to a specialist but she never said anything to anyone and never went to see the specialist. I was working 50 miles from here so my mom's neighbor took her to the doctor and he would just drop her off at the door and pick her up later, he never went in the clinic with her. He did make sure she got inside okay, but he had no idea what the doctor said.
Her house was built in 1900 and I think it still has the original front door. The door locks with a skeleton key on both sides. My parents always locked the door from the inside and left the key in the door so it couldn't be unlocked from the outside. My mom took the key out of the door, but she doesn't remember taking the key out of the door and doesn't know what she did with it, so now I can't unlock the door until I can get another key.
She was complaining today that her refrigerator was too big and she wants her smaller refrigerator back. She said she didn't know where that refrigerator came from, she just came home one day and it was there. She got the refrigerator back in 2008, she picked it out, it was the one she wanted at the time.
She keeps thinking people are coming in her house messing in her things, taking things and other stuff is suddenly appearing and she doesn't know where it came from. I was filling out some papers for her, she picked them up and put them away someplace and now nobody can find them. She gets confused by what day it is, what appointments she has and who's coming on what day. She wakes me up at 2am because she thinks she's late for an appointment. She knows when her birthday is, what year she was born, my grandma's maiden name but there are days she can't remember my name.
I find myself having to make decisions that shouldn't be mine to make, my cousin said she needs a new front door but she said she doesn't want a new front door, she wants it left just how it is. It's her house, so I don't think that should be up to me. I had to step in and get her a new furnace because we were expecting 20 below weather and her furnace was out. She said no, but she got a new furnace anyhow.
I would agree, she needs to be in a nursing home, but she wants no part of that idea. Somebody mentioned the words "Nursing Home" and my mom went ballistic. She demands she be allowed to remain in her home until she dies and I've been told to shut up more than once. I can imagine she will be extremely verbally and physically abusive if she was placed in a facility. We tried to talk to her about going to Assisted Living temporarily for a couple of weeks while I was gone but she said she won't eat and will keep trying to walk away until I take her back home.
I was wondering if the neurologist might be able to help or if it was just too late. Her doctor has never talked to me about this before, but I think my mom has been getting worse. The other day she asked her caregiver why she didn't just stay home and do her job from home.. What? Oh, but now she needs somebody to come and give her a bath tomorrow so she can get her hair done Wednesday and there is only one person she will let give her a bath. Five minutes later she is asking if today is Thursday.
I think the slow time-to-plan train already left the station.
You may have already boarded the express train - to dementia town. Hold on - it may be a wild ride!
1. If the confusion is brand new - see Doc to rule out infection esp UTI
2. Get that door sorted! Need a safer key & better lock.
3. The good news 😁
Mom has already told you her wishes & values:
to die at home & no nursing home. So if you want & can, aim for that.
Keep the hired aides up for supervision & care for as long as is possible. This is option A. Age in place.
(Note I said *as long as is possible* not until death, as it may happen that option B. Nursing home becomes necessary afterall...)
4. Sit back & enjoy the ride. Look for the fun, enjoy what you can, celebrate what Mom can still do, rather than what she is losing. A crises will happen sooner or later... Then hospital, then either C. into care or D. for demise.
Life is a journey as they say.
PS a Doctor may take your $ for scans/testing... up to you. I heard a Doctor tell a relative once "Your Mother is 92. The scan shows your Mother has a 92yr old brain - no surprises there". I am not kidding 😩
Do you have access to her medical records? HIPPA laws will not discuss anything with others unless you do.
She absolutely needs to see a neurologist.
Obviously, you care about her well being or you wouldn’t be on this forum.
Whether she understands that you have her best interests at heart is another story though.
She needs to be in a facility for round the clock care. By the way, what exactly do her caregivers say about her behavior to you?
In order to know exactly what is going on with dementia she will have to do specific testing. It’s much more than the general questions during a regular routine examination.
Brain scans may be taken as well. The neurologist can explain it to you.
I truly hope that you are able to place your mom in a suitable facility.
It sounds like she isn’t safe in her home any longer.
This is another reason to get her to the doctor.
Let the doctor tell her. She may take him/her more seriously or she may deny it but it is definitely worth a shot.
Best of luck getting mom placed.
You and your mom need to understand what "remain in her home until she dies " actually means. If she does have dementia (and not a UTI) it will mean a parade of in-home caregivers (and eventually overnight as well). Does she have the money to support this? FYI even if she paid for privately hired people at a lower hourly rate, that may make her an employer (per the IRS) and thus she must comply with her state's employment laws, practice withholding taxes on paychecks, have written agreements, etc. One may be temped to pay cash, but this is not advisable for several reasons. You can read about private-hires-paid-in-cash disasters on this forum (or worse, the "live-in" caregiving arrangement). It also means her PoA will be doing A LOT of management and problem solving (when aids call in sick that morning or your mom won't let them into the house, etc). She may also be more socially isolated, which will probably cause her dementia to manifest even faster. She will need a fall alert, if she will even keep it on. She may wander out of her house at night and then who would even know if she's done this? She will not be "independent" but have a constellation of people (including yourself) orbiting around her. FYI if you are her designated PoA, you are under no obligation to agree to a caregiving arrangement that is detrimental and onerous to YOUR life. You should do what is in her best interests to protect her, even from her own choices. PoA must come first in the to-do list. If you can't get this to happen the county will eventually move in to assume guardianship and then only they will be making decisions for her and family will be shut out of management of and information about her assets and what facility she goes to.
Once the PoA is hopefully in place...I don't think you should jump to taking her to a neurologist first (if you can even get here there AND be made her Medical Representative so that the doctor can legally discuss your mom's medical info with you privately). A family physician will do, since you there is no treatment or cure for dementia. She simply needs a diagnosis and general check-up. If she is resistant to seeing any doctor, you can tell her a "therapeutic fib" such as: Social Security now requires an annual physical in order for you to continue to receive your benefits" -- or whatever will incentivize her to go. Then you must accompany her and go with a pre-written note outlining who you are and what your concerns are about your mom's behaviors. In the note request a test for a UTI and a cognitive exam and discretely hand it to the check-in person, nurse or doc before her exam. They will be happy to do this, this is how I got my MIL diagnosed and into AL when she wasn't remembering to eat and had no money for in-home care.
Many people romanticize "aging in place" but they had no idea how much time, effort and money it requires to do this. If you are her PoA you can certainly make the decision to help her stay in her home, just be realistic about the fact that her mind will continue to break and it can be dangerous and lonely for her and exhausting for her manager. I wish you all the best as you work to protect her.
There may come a point where your mom won't have a choice but to be placed in a facility, whether she wants to or not, but if you don't have her medical or durable POA, then you won't have any say in the matter.
Your best bet will probably be the next time she ends up in the hospital for any reason, you tell the social worker that she is a danger to herself in her home and cannot return there. At that point they will have to find the appropriate facility to place her in.
You've got your hands full for sure. I wish you the best.