Alzheimers / Dementia / Anybody dealing with this with a family member?

6BangBronk

6BangBronk

Well-Known Member
Joined
Jul 15, 2005
Location
Durham
We moved my wife's mom in like 4 months ago. Everything was fine. All settled in good to go. Then last week she starts hallucinating. Starts talking to people that ain't there, seeing stuff grow out of the walls and bugs. We thought it was from new meds for she just got out of the hospital for pneumonia a few days prior and they switched her up some. So we took her right back the next day after the hallucinations. They tested her for everything they could and did scans with everything is normal so they came up with the conclusion she has Lewy Body Dementia (LBD). They said there's no cure but they gave her sleep meds to help out.
So now we have to make some serious decisions. We want to keep her and take care of her but she still can't sleep and gets up in the night and does crazy stuff. We're stuck in a rut. The wife is all to hell. And we can't go on like this for I got to work. And I can't do that if I can't sleep. It's very depressing.

Anybody else dealing with this kind of dementia. Or dementia in another form? Got any pointers in dealing with it???
 
My wife's grandmother had Alzheimer's for a long time, like almost 20 years. They say that sometimes a big life event can cause it to worsen, death of a spouse, moving, etc. Her Nana's was losing her house/moving. She wasn't all there before, she would forget things, etc. She still lived on her own and was managing, but when Hurricane Floyd flooded her house and she had to move into assisted living, it exponentially made it worse. She got mean, started dreaming up random stuff, started accusing family members of stealing, etc. It was really hard on the family, eventually she got worse and was in a wheelchair and couldn't really talk much, etc.

It is going to be hard for a while, really wish I could tell you something different bud, just prepare yourself.
 
Dementia and Alzheimers is awful. My exwife's grandmother had it and lived in a home and lived for years with it. It was really hard on her dad to see her mom like that. It got to the point that she didn't know who any of them were. Wish you guys the best.
 
My grandma has dementia and they caught it late. She thinks I'm her son and 16 most of the time. There are some really rough days. I pick and carry on with her, makes her smile, we mostly tip toe around her, she tends to get angry quick, but we all know she can't help it. Good luck
 
Yep, it is awful dealing with these things. My grandmother who passes away at 88 years old only two years ago, had it towards the end. We did everything we could to keep her at home where she was comfortable (same house her and Grandpa bought new in '55 after his return from Korea). The early stages were not finding the way to the kitchen to hearing the mailman at 9:00 at night. Then led to deep discussions with people whom have passed away in the 70s and 80's.

Towards the later stages it was one minute she was fine, other minute she was screaming in tears to the Lord, "Thank you for letting me see my Grandson one more time!" :(
 
My grandmother, previously one of the nicest & polite people I know, was diagnosed with some form of dementia while at an assisted living facility (her call to be there). Over a couple year period, she became one of the rudest & meanest persons I've ever witnessed (short of Pirate & the Marines ;) ) before passing.

My former MIL, second only to my grandmother because of blood, was diagnosed with Alzheimer's after numerous accounts of wandering away from home and not remembering how to get home (tiny Ia. town where everyone knew her). She remained pleasant (read: not mean as hell), but would get pissed that she couldn't remember anything and was in an assisted living home for a little over a year before passing.

The big thing is deciding what/where to do... I can tell you from others I know that chose the "I'll/We'll become _THE_ caregivers" route, they ran themselves absolutely ragged (physically/mentally/psychologically/financially) until their loved ones had passed. Several still haven't recovered...
 
Wish you guys the best. Its a battle that the person with the disability as well as the family will fight until the end.

My grandmother on my dad's side had it for a long time.To this day I am fairly sure that she passed away not knowing that her son had passed away before her. When my father was in hospice and the clock was finally ticking down, the family brought her up and for the first few hours it was like she didn't understand the situation. Sitting in hospice, all of a sudden it hit her what was going on and she had what we think was a panic attack which ended up resulting in a mild stroke. She ended up being ok but she was just in a daze the whole time from then on out. A few months after his passing, I went down to FL to get some of her things out of storage that the family wanted me to have since they had moved her into a home long before and my aunt was tired of paying storage. I walked in to her assisted living home and she thought I was her doctor. I said I was Ron's son, and she just asked me how he was doing! I held back my shit for a few minutes as I nearly threw up at that question. Looking around, my shit ass of an aunt had lined the assisted living room with pictures of everyone except my mom, my dad and me. (I later found all of those pictures that my grandmother originally had, stuffed in a drawer in storage) It was all her side of the family which my grandmother still knew and recognized very well in comparison. I hugged her, walked out of the assisted living place, broke down, got my shit and came back to NC. Other than my grandmother's funeral a few years later, I haven't talked to my aunt again. (More to that story and my reasoning for another day)

What I took from that, and this is just my experience. Surround them with images of the good times they have had or at least images of what should be familiar to them. It also makes the new living accomodations more familiar to them as it is not their home as they know it. The episodes are going to happen, it just sucks but they will. But the reminders of family, friends, familiarity and the good times will hopefully help span the gap between episodes. I am in no way a doctor but a few other people I know who have witnessed the effects of dementia and alzheimers in there families share a lot of the same suggestions.
 
It's weird. She's JUST been diagnosed so I'm sure it will be weird for a while. But so far she knows what day, month and year it is. She can recite all the family members by full name (and there's a lot of them). And she can tell you what she ate the day before. But in her mind she's gone back to the trailer she lived in 4 months ago. Everybody she imagines and talks to was her old neighbors and everything she acts out was what she went through there. All except for the bugs and wall fungus) From what I hear she'll keep going back and may even start only talking German for that's where she's from originally. She denies it though. She'll say that "ya'll think I'm crazy but I'm not".

My grandmother and great aunt have dementia and even say "they don't know what county they shit in last" jokingly and they know they have it. Will even tell you they do. But it's a whole different breed from this. For 95 and 91 though what can you expect. But as soon as one got it the other did so I truly believe it is definitely contagious.
 
We battled it with my Great grandmother and then with my wife's grandpa.
Hr grandpa was the worst as he was a very active man and worked in construction into his mid 70s. He quit at 76 when they diagnosed him with Alzheimers and took his license away the same day. Over night he went from working 12 hours a day to having nothing to do. Within 6 months he was "batshit crazy" (his words.). But he was still intelligent and functional. He wanted to go shooting. He "forgot" the combination to his gun safe. Actually wife's family had changed it to keep him from harming himself or others. He broke out a grinder, drill and cutting torches and opened the safe. Also caught the basement on fire in the process (safe wasnt in the basement...) But he got in.

Then decided he was too hungry to go shooting. So he walked his pet pig (he hadnt had a pet pig since he was 13) and was busy walking him (imaginary leash for an imaginary pig) in the front yard when the fire trucks pulled up.
 
We dealt with what was basically the human form of Mad Cow Disease with my grandpa.
As the only local son of the oldest living child, I was around quite a bit.

It started out with odd things, like waking up in the middle of the night, getting dressed, getting his keys, getting in his truck and moving it 5-10 feet, then back in the house and back to bed.
He talked to a lot of people who weren't there.
The creepiest was him carrying on a conversation with a son who had been dead for 40 years.
Looking at the tv , seeing a sunny outdoor scene and commenting how nice it was outside. Even at night .... in the winter.
Some of the stuff he talked about seeing in real time that wasn't there was absolutely terrifying.
In the end, his body basically forgot how to function.

On the good side, if there really is one. Sometimes dealing with him and the things he said or did was absolutely hilarious.
Those are the things we talk about, the good fun memories .....
I remember staying with him in the hospital, watching him sit on the edge of the bed thinking he was at home, in his chair, with his feet propped up on the stool. He had his legs stuck straight out and crossed, suspended in mid air! Sat like that for an hour!

I was banned form the hospital after staying one night when he was particularly "active". After dealing with him for an hour wanting his snuff, I finally gave it to him and got him a spit cup. He calmed right down and eventually went to sleep.
Later that day they had to replace everything on the bed, including the mattress because he had gotten snuff everywhere after I left.

The short of it is, the worst part for them is the confusion (depending on the diagnosis). They really don't realize too much whats going on.
Love them. Make good memories and good times to look back on.

Matt
 
I just went thru 7 years of hell with my uncle -- I was his only family left, and he moved down here and I (and my wife) became his sole caregiver.

I am going to try and put random thoughts into some semblance of order as I think of them:

He, unfortunately, became one of the mean ones. It got to where my wife and mom dropped contact with him. He was in an apartment in assisted living, and of course, thought he was perfectly normal. People with dementia have the ability to "pull themselves together" and act/appear normal (almost) for a short period. Like when he'd go to the doctor. I'd talk to the doc about him beforehand, then he would go for an appointment, and be as nice as he could be. Be very careful, they can go to a lawyer too, and turn on the "normal"....my uncle tried that many times to change his will...but one good thing about lawyers is that they will talk to an older person, and try and hit some triggers, to see if they are in their rightful mind and capable of executing a will or POA etc. I had several lawyers I know get word to me that he was doing this.

He should have been in a lockdown ward much sooner than he was, but he'd fight any attempt....he knew where it was (on the main hall of the nursing facility on the same site as the apartments) and we knew he'd put up a big fight -- emotional and physical -- if we tried to move him in there. About a year before that move finally did happen, the head of the facility told me exactly how it would happen, and what to do to make sure it did. He had to go into the hospital for a few days after a fall. When he came out....we told him it was standard procedure for the ambulance that took him to the hospital also take him back home. The ambulance delivered him straight to a room in the lockdown unit. We were out of the picture, until he had a couple of days to settle down and get into a new routine.

One thing that helped us more than anything thru this process was our local "enrichment center" -- the local senior center. They had quite a few classes and seminars directed at caregivers for alzhiemers/dementia patients, and what I learned there helped us to understand how and why things were happening, which made him easier to handle, and the situation easier to accept.

One person that really helped and saved us was Teepa Snow. She does seminars on dementia, and we went to see her several times when she was in the area. Learned something new every time. Her website has some online training, her DVDs are great, and I'd highly recommend going to one or more of her Dementia seminars in person. Website is teepasnow.com WELL WORTH THE TIME AND EFFORT!

Our church also had a couple of good study classes -- one was a caregiver class done by the head of the local senior center. That was worthwhile. We had seen much of the information (part of the class was a Teepa Snow DVD), but it was valuable because we identified with the others in the class (that we knew/sort of knew via church) that were going thru the same process, and had a sort of support group.

The other class we did was a grief class. No, he wasnt dead yet, but he was slowly dying over the 7 years, and there was grief to deal with for all of us. Learned some tips and strategies to deal with the changes and the process.

As mentioned by someone else, you will find that things tend to progress (downward) in stages or plateaus. Often triggered by a life event. For my uncle, he seemed to drop noticeably about every six months. Usually triggered something happening (had a problem in is old apartment, had to move to another...drop in mental status). They got the apartment redone (major plumbing repairs) and a year later, he wanted to move back to that apartment, which, even though it was something he wanted, it triggered another drop).

One last thing I will impart....you absolutely cannot do this alone. Especially since she has moved in with you. Dementia is not worth your marriage or family life. Yes, she is your mother, but you have your own life to live. Go with it as long as it works, but have an exit plan, and use that plan so she does not become a burden, and definitely do it before love turns into hate. Find ways to take a break. Our local senior center has caregiver timeout/elderly daycare so you can get away for a few hours. Friends, church, a support group...find someway to express your frustration (a very common word heard at the seminars we attended, btw), and don't let it get to you.

Good luck...
 
Have her O2 levels checked and see if the docs will send a O2 tester home with you for her to wear at night for a night or 2. Low O2 levels play hell on people with these early stage issues. My FIL benefited a lot for finding this issue and using O2 as he slept. They called his dementia problem sun downers syndrome and got worse later in the day as his O2 levels dropped. This is a hard thing to deal with for anyone and good for you for steeping up and taking care of her.
 
The best advice given so far ...... "You can't do this alone".
Dealing with my grandfather eventually encompassed 5 people on a regular basis ... 3 kids 2 grandkids ... with an occasional break provided by some of the other grandkids and relatives.


Matt
 
look for signs of a UTI. I know its different for everyone my mother struggled i could tell her dementia got worse and she became agitated and hard to deal with. it was all of uti's. I was able to get help from hospice and the black mountain center for care. make sure u take a break. every few months or so take a break and do a small get away. helps reduce the strain on relationships. Took care of my father for 5 years and my mother for 6 it tough. but its what we do for our loved ones
 
Since she is living with you now, ANYTHING that is of value, put away, make and hide ( and remember where ) multiple sets of keys for vehicles and doors, if SHE has valuables, document what and where they are in your dwelling.

Dementia and Alzheimer's is a wicked odd demon
I lived with my grandmother for several months after my grandfather passed, multiple episodes of her hiding the car keys ( didn't want me to steal her car ) took keys to my motorcycle ( was afraid I'd leave her alone )
She called the police once told them I stole the car and hid it ( in the garage, door closed )
MULTIPLE trips to the vet for the dog ( 3 times a week ) they never billed her, but did ask that I try not to let her come as often...
trips to the bank, I never went inside, she withdrew several thousand dollars and hid it throughout the house ( I suspected this and notified my dad and aunts of this, unsure if they ever really found it all )
using language I had NEVER heard from her previously.... that was pretty scary weird

You're in for a ride, know now that it will be frustrating and hard to handle and watch. also know that they honestly do not know what they are doing or saying, and don't take it personal, thats the really hard part, actions you would normally kick someones ass for, you have to hold back.
 
Today, The Charlotte Observer, ran an article titled, "Music stirs memories for people with dementia". It's a Health" article, but started on the front page, by writer Karen Garloch, of the Observer. It covers an experiment by a Local Nursing Home, using "Music Therapy". It can calm patients, & helps their memory,by bring back Music they listened to as younger folks. Such as Sinatra, Nat King Cole, & others. Many nursing homes have implemented such programs, since it's inception, in 2008. This is the first I've heard of it, so maybe it will help others. Any Brain disease, like dementia, Parkinson's, & chemical imbalance, may benefit from this!
 
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