Dementia Sucks
 

So my wife is 10 yrs older than I. She had a bad stroke 16 yrs ago and even with no use of the left arm we have had a blissful life. Along with stroke comes a chance of dementia.

Might get it might not. I will probably get it with 2 strokes and my father had it. Shit seems to strike those with a better than average IQ.

My wife wants to check herself into a nursing home. I know something has to happen, because she is driving me fucking nuts.

Does she have a recent evaluation from a physician that makes her eligible for nursing home care?

She is on CAPS she is a shoe in. The Dept of Aging lady said last year that she has noticed the changes in Shirley. I was like what changes?

Sorry cap'n, that sucks. :(

Have you considered both of you moving to an assisted living place that has a dementia/Alzheimer's unit?

I've just been through a year and a half of dealing with my mother's dementia and father's mild Alzheimer's, and have learned SO much about the proper housing/facilities for folks that are in the position you are. If there's anything I can offer as far as advice or suggestions or just relating my own experience to give you some idea of what lies ahead, please PM me.

The reality is, nobody really knows what to do when confronted with dementia. Most of the time, it kind of creeps up on you and suddenly you're in a spot where changes need to happen, and often very quickly. You jump in order to do the best thing for your loved one, and sometimes you jump in the wrong direction, just because you HAVE to jump somewhere, right now.

That's how it happened with my mom. One day, she was 90 years old (with the occasional/very minor moments of dementia, and two very small stokes under her belt) - still driving and shopping and cooking and cleaning and caring for the house and yard and for my frail but mostly coherent father, and the next, she was utterly and completely gone.

I didn't make any really bad mistakes, but there are things I would have done differently. The bottom line is, I SO wish I'd had more information and been better prepared in knowing what to expect, costs, different types of facilities, health insurance, estate/trust/financial preparations, and so on.

For example, did either of you serve in the military? There may be financial assistance available through the VA. I learned a lot. I have information to share!

Again, if there is any way I might be able to help, please let me know.

:hug:

Sorry Cap. This growing old shit ain't cool.

You're a good one Glinda.

Each journey is a different one.

My cousin, for whom I was POA and medical decision making dude, had dementia before he died. It was very hard getting him into the care he needed because he thought he was fine and wanted to stay home alone in his house. He was living in filth and would go days without eating. I had to trick him, and he pretty much hated me for it once he realized that I had no intention of getting him out and back into his house. Fortunately he had been declared incompetent by a neurologist and I could blame that neurologist for him being placed in a dementia ward of an assisted living facility.

Fortunately for him, he had money, and being in a position where he had money, he had purchased long term care insurance, which paid his assisted living bills for the year or two that he was in there. Long term care insurance was great for him, although I don't know how much he paid in premiums all those years and if he got back out what he had paid in. Probably not. That's how they make their money.

I appreciate the wisdom of my fellows here on this forum. I have not posted this sad tale in the other forum that I frequent.

The last 6 yrs of my father's dementia were spent with us. I hired a couple to help for $600 a week, but they came 7 days. Now I am broke and have to do something else.

Sounds like you've already got some experience with this sort of thing under your belt. I commend you for what you've done for your family . . . it is SO hard.

My folks had a long term policy too, but after paying into it for a decade or so, the company went belly up and they were screwed.

When the crisis hit (a UTI that turned in to full-on dementia - mom was quite aggressive, combative, and exit-seeking). I initially tried to bring her home, hoping that the familiar setting would calm her down and maybe I could have home visits/help for my folks. No, she was out of control. Caught her trying to climb the back fence, she left notes in the mailbox for the mailman ("Help! I've been kidnapped!"), she threw bricks at me, filched knives from the kitchen and hid them in her bed, she never slept for more than an hour or two at a time . . . it was a nightmare.

After four days of this, I checked her into a full-on dementia facility. After a month, she settled down and regained some of her sanity, so I was able to put her and dad in an assisted living place with a dementia/Alzheimer's unit. My mother begged me and badgered me to take her back to their house, just so she could see it again . . . but I was too afraid to take her there, lest she flip out and jump out of the car, refuse to leave the house, or run away, hurt herself, whatever.

I'll never forget her saying to me, "You're killing me. I hate you."

:(

Hang in there, man. If you or the captain or anyone else need someone to commiserate with, or you just need to vent a little, I'm here for you.

And disconnecting the battery of his car while someone took him to a doctor's appointment. Probably saved a few lives with that trick.

Heh. Clever!

I bought my fathers van and gave it to someone who needed it, because he couldn't remember he didn't have a licence anymore.:(

UTIs are notorious for causing erratic behavior.

Yeah, that one was a big shock for me. Had no idea how common it is and how quickly it can turn someone's brains to jello. Mom checked in to the hospital with a bowel blockage that led to the UTI. Two days later, she was gone. Slugged a couple of nurses. They had to literally tie her to the bed because she kept trying to escape.

Two days, people. Two days.

Life is so fragile. I often wonder how I made it this long without some sort of massive medical blowout. With my luck, I'll live another 30 freakin' years.

*shudder*

They can't restrain you anymore. No hand gloves tied to the railing. No seatbelt to keep them from falling out of a wheelchair. Drugging them into a stupor is okay.

My daughter works at a nursing home. She says the government has stopped paying for painkillers and a few others. There won't be anything to keep them calm. They will be breaking out and running amok with the general populace. I don't see how they will recruit employees to work in the dementia ward.

I had heard of this phenomenon, but thought it was largely if not entirely reversible with antibiotic treatment. Her dementia stayed even though they successfully treated the UTI?

It's not always that simple. I had a Director of Nursing tell me one of his nursing home's elderly patients had begun hallucinating and they were sending councilors in to work with her. I asked the patient's charge nurse if the patient had started any new medications; or, changed dosage of an existing med. She said the patient had recently started on an antibiotic for a UTI. I convinced the DON to check with the pharmacist and the patient's doctor for an alternate antibiotic to conduct a drug challenge. The pharmacist said that while the incidence of side affects for the antibiotic in middle aged patients was negligible, he was getting reports of hallucinations in about 7% of the geriatric patients he served. The patient's doctor discontinued the first antibiotic and started the patient on an alternate one. Within 48 hours the hallucinations were gone.

Spoil sport, robbing an elderly of the most fun they had in years. :p:

It's already hard enough, I imagine. Without necessary calming/pain meds, the staff won't be the only ones suffering. It's a sad and distressing situation all the way around.

After my adventures in dealing with elderly dementia, my heart goes out to the caregivers and the patients. God bless them all.

I suppose in many cases it is; in my mom's case, it just wasn't. I don't know why.

I should note that mom had been exhibiting some relatively innocuous dementia behaviors for about a year before all of this - possibly as a result of two small strokes she'd had in 2014.

For example, she'd convinced herself that my frail, 90-year old dad was having an affair and bringing his mistress to the house, and that this mistress was moving things/rearanging her kitchen cabinets and drawers just to mess with her (after all, she knew SHE didn't throw out all her coffee cups, and dad certainly wouldn't concern himself with where she kept her pastry cutter, so it had to be another woman). That belief wasn't enough to affect her day-to-day ability to function and care for herself and her home, so whenever she'd call with another story, I'd listen and counsel her as best I could, and things would be fine for another three or four months. Lather, rinse, repeat.

The UTI apparently just pushed her past the "return-from-dementia" zone.

Mom was in the hospital for eight days. She checked in on a Tuesday evening with a bowel blockage. By Wednesday evening, the docs had cleared the blockage, but she had become disoriented and combative with hospital staff. I arrived Thursday morning about when the UTI was discovered, and a course of antibiotics was ordered, but apparently by that time the dementia had locked itself in. (?)

She was released once the infection had been knocked down. By that time, she was less combative, but increasingly distressed and exit-seeking, and had developed a pretty strong case of Sundowner Syndrome.

She spent a month in a very good (and very expensive) Alzheimer's/dementia facility, and with their care and attention, she became much more "there," far less distressed and agitated. The dementia was still there - her particular obsession was that everyone around her was involved in a secret sex ring, which she called the Red Ribbon Club, and that people were always stealing her money (which she didn't have any of, so . . . ), but the need for constant watching and tending dropped significantly.

Once I found a place with a room large enough for both my folks (surprisingly hard to find, as most of these places have very small bedrooms suitable for only one), I moved them in. Evidently the Red Ribbon Club followed her there. She confided in me that everyone there was having sex on the roof for a dollar, and that my dad was a regular participant. :rolleyes:

Mom always knew who I was, but she sometimes thought my dad was her father, other times she thought he was some random roommate. I'd say she was coherent and all there about 50% of the time, although that declined steadily over the following 10 months (at which point I had to move her to a nursing home, due to a fall that resulted in a fractured back).

I have a feeling that mild Alzheimer's/dementia is far more pervasive than we think. I hope and pray that medical research and drug trials lead to better treatments and outcomes. It's a shitty way to go.

Right? Mom's ongoing, super secret, personal "undercover investigation" resulted in "true proof" that dad was all up in that Red Ribbon Club! :D





Yes, I laugh. It IS funny!

And I will be going to Hell. I accept that.

Undercover? She snuck up the disguised as a slut? :haha:

You know, I wasn't there day to day; I don't know exactly how the investigation was conducted. All I'm going to say is, this a pic of my mother at the 99-cent store (mom's dear friend and [former] neighbor took her for a shopping outing), checking out the 99-cent lingerie.

https://i.imgur.com/SA1hl6t.jpg


Who knew there was 99-cent lingerie? My mom was ALL ABOUT finding the ultimate bargain deal. Oh yeah.

This is so cute!

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So much learning today!

My father is in hospice care at home. Before hospice care, a UTI would lead to confusion and then be followed by a combative state. We quickly learned that if he was staying confused, he had the onset of a UTI. Since hospice, he has been on IV antibiotics constantly. Unfortunately the gangrene is moving past the foot into the leg. Antibiotics aren't doing much to slow it and he is slipping as the infection increases. He has 24 hour care at home, but I think we will have to move him into the hospice unit at the hospital within a couple of weeks.

Sepsis killed my mother. Sepsis/gangrene will take my dad.

So sorry to read this Sarge. X

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Sorry man.

wow Sarge, that's horrible.

On the other hand the person who has dementia dosen't know they have it. My father shaved and showered every morning. One day he stopped. He kept his nails trimmed, didn't do that anymore. I told him I had to put double keyed deadbolts on the doors to keep him from wandering outside. He said well don't let me go.

I thought he had forgotten who I was, but when they came to get me when I had a stroke, he cried. I came home and saw him I collapsed at his feet and cried.

My wife has sundowners, can't remember eating 2hrs ago or most anything from 2hrs ago. She can be aggravating and tries to draw me into what ever crazy shit she is talking about.

Her family doesn't want her to go to a nursing facility, but no one is willing to take her to their house.

Sadly that is not true for everyone. My mum was frequently aware of her predicament in a hazy way.

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captainhook455 - prayers sent for you and your wife.

Jeez, Sarge. My heart breaks for you and your family. :heartpump

Sounds like it's time to get the CAP people on the job. So sorry you're going through this, it's so painful to see your loved ones decline right before your eyes.

:(

Wow .. .. .. just reading this thread brings so much sadness. I'm so sorry Sarge & Capt.
:(

Yeah. My nan was intermittently aware of her situation. very sad. Frightening for her.

Sarge: *hugs* sorry man. You too Capn.

Dementia, alzeimers, multi empharct - they're a vicious family of diseases. They take people away piecemeal.


I wrote a poem about memory loss some years ago - posted it on here somewhere. Ironically I can't recall how long ago or what name I settled on (they all start as 'Untitled poem' or 'poetic experiment')

My wife is still at home. I will see how it goes. Thanks Sarge for the prayers.

Come on here and vent any time you need to capn. We may not be immediately present, but we care.

stay strong for her, bro.

thinking of you

Apparently the poem title I settled on was 'Memory'

http://cellar.org/showthread.php?t=1...ghlight=memory

Uh-oh!

?

oh spelling. Yah. I am not quite right at the moment. Full of the flu, peering at the screen with no glasses and knackered from insomnia

What I have experienced, is there's way not enough support out there for families who are suffering the loss of there loved one with dementia. My grandma was recently diagnosed and we had completely idea what dementia could do to a human being other than she might forget a couple of names and how to prepare a coffee... we couldn't even imagine would stop being herself and take on a new personality. The biggest problem is that you have to always remember that's not your dad talking, it’s the dementia talking.

Best regards... And hold strong...
Danny

Signature link is a nono.