my mother has stage 5 alzheimer's...learn with me...

[Big Fitz]

Bones, you have my utmost sympathy on this. I've lived through one grandfather die from this horrible disease and another start descending into it before she passed. I've seen what torture it was on my parents and pray that what is to come is swift to save everyone in your family and friends close to her pain, or some miracle found to grant her some return to who she was when you knew her best.

I don't know how to better describe my sympathy for you and yours in going through this horrible disease together.

 

[PatekPhilippe]

mother's day did not go well....for 45 min. my mother begged me to take her home...and told me she hated the hell hole i had put her in..and she didnt belong there...she is threatening to kill herself ..by jumping out the window...i now know why all these types of places are one floor...she had me in tears the whole time...but i never waived...she ask me if i had given her stuff away...etc...she wanted to know where her new car is...i told her in my yard..and we were not driving it...when i mentioned concerns over her memory..she simply glossed over it..with "that doesnt matter"...she doesnt see why she cant return home...and at one point....i was ready to simply take her home...just to stop her from begging me...then when that didnt work she got mad...real fucking mad...she began to hit at me....when i tried to touch her...she wouldnt let me hug her or anything...we did manage to have lunch...i noticed that even when she is mad the people at the alf...(assisted living facitlitie) could manage her...by simply telling her it was time for lunch....she thinks the private nurse is someone working there...she called last night and wanted to know if i was coming to take her home tomorrow...
i told her my son was coming to see her to take her walking...he is trying so hard to fill in the gaps where i cant....

that is part of it...i feel like i am destroying my own family...neither my son or i have been able to work...we still have so much to do with her...we need to close her house....

i am going to be able to return the new car ..either trade it or get my money back....the ownere of the car place...is a childhood friend...all our parents were friends...his mother is suffering from alzheimer's too.

alt is insisting we do things...even if i am totally out of it...she had me and da man to dinner....we didnt eat...we had eaten...i told her that...but she insisted we come...for some reason..she thinks we all need to get tats...

i think the utter helplessness that i see in people's eyes is killing me....da man has that look....that....if i could just kill something and make this better but i cant....he sits with me...pats me...holds me....tells me over and over again that he is here...he is ready to do the 100% while i do 0% to maintain what we have...he tells me over and over that he will be here....i am downright abusive to him...

everyone wants to do what i need.....i know two types of people now.....the ones who have never had anyone with this disease and the ones that have....the ones who have never had...are sympathic and clucking...its hard to do the right thing etc...you are amazing...blah blah fucking blah....the ones who have.....have you done a dnr? look my father died in 30 months...and i was glad...i cried less the day my mother died than the day i put her in here....when she stops swallowing...dont put in a feeding tube...just dont...if you are lucky the renal disease will work fast....now this continue as i am sobbing like a child...these are not cruel people...these are people who loved their folks....i hear statements like....i could have lived with him starving to death had i know what the feeding tube was like

whispered words...harsh and quick....quick exchanges in the grocery...a hug...i heard...whispered in your ear....do the dnr...do it now. make sure if your mother dies...you are free....dont let them bring her back...even the sharp gasps of shock do not stop them...they continue as on a mission.....a mission to make you see...to make you see what they didnt....as if their sins and guilt will be cleared if they can keep you from doing the same thing....that somehow ..they can make the idea of starving your mother to death...appealing.

bones...we are all given trials in life by powers that are beyond our comprehension. It's how we carry ourselves through these tests that determines what kind of person we are. I know that you love your mom very much...to see her like this is devastating to say the least. Sometimes there will be unexpected moments of complete lucidity...during these times is when you should express your love for her and comfort her as best you can...but knowing you, you are already doing this. There will come a time when you will be faced with a decision of monumental proportions related to this. The sum of your experiences and your compassion will aid you in this process. Alzheimers is a terrible thing and no human being should have to suffer like that. Keep the good memories you all shared as fresh as you can in your own mind. I would even go as far as writing them down in a journal so you can read it from time to time.

 

[strollingbones]

this is my journal....

sooooooooo i dreaded yesterday....doctors appointment ...new doctor etc....by 2 oclock i was sick to my stomach...not sure how to do this...my son has visited her that morning and told me....to expect it to be bad...he had a good visit with her...but she was saying things very negative about me....i am glad she is hating on me..and not my son. the alf transports patients to the doctor and he comes in once a week to the alf. so i go in a few minutes early and get seated...wondering how angry she will be when she sees me....a few mins. later her and the aid come in....she sits in the chair next to me...smiles at me...turns back to the aid and begins to talk...she had no clue who i was....

now they tell me...make it easy...dont do anything to agitate or upset her....so i dont. i call the aid into the hall and tell her i will stay out of it...just get the visit done etc....

well an hour and 10 mins later they come out...mom smiles at me....begins talking to aid about how nice the doctor was...i go in and talk to doctor....i told him how guilty i was feeling...he smiled...said..."your mother can live alone, just not for long" he said her memory is worth about 2 mins. i told him i felt like a coward for not letting my mother know who i was...he smiled...said nothing cowardly do it and it doesnt matter how i feel...it matters how i get her thru what needs to be done without upsetting her.

then he told me his story...his mother for some reason knew him..always did...never knew his older brother...he goes on about how its not about how much she loved them...its the cruelness of the disease. then he drops the bomb....dont go see her for a month.....i am like..what...what the hell did you just say...he repeats it...a month...they need to force her into a new routine and you are upsetting her.

now get this..she is telling the aids..that i dont love her...she is going negative fast....and my son is still her golden boy....so i can live with that....

amazingly after the doctor said that she couldnt live alone....the guilt was gone...i am doing what is best for my mom...that is all i can do....she can hate me for it...my shoulders are kinda big....well not that big...da man went with me yesterday....and i only cried a little.

 

[Barb]

well..*beings to shove troubles around on plate* last night my mother in law called....da man's grandmother who is 101...is dying...she has taken a sudden turn for the worst...so he has packed a couple of bags of guilt and headed east....i wanted to go but he feels like i need to rest more than go back across the state...i wanted to go for moral support.....i think he just wanted to be alone...men suck when they do this....he has been so supportive of me...been there and yet when there is need with him....he goes it alone...

it is a cold rainy day here.....

So on top of everything else you feel a little rejected or pushed aside? I have one of the world's really great guys, but I know what you mean. I don't know why they do that sometimes, but they all seem to do it sometime or other. The trick is not to take it too personally I guess. (You must understand that I give great advice that I find very difficult to take myself sometimes. )

But we don't have any control really where other people are concerned. And as for your mom, you'll do what we all do and that's just the best as we can. One day at a time. If you look beyond that, you'll make yourself crazy.

Well, solitary types are solitary. You two could form a support group with my old man. He tells me to stop being such a man...but sometimes its easier to deal with trouble without having to put on a brave face, and if you're the one who fixes, a brave face seems mandatory even if its not. Let them wrestle their demons, then come home to you for rest and peace. It isn't that they don't appreciate you, I appreciate mine, but the storms are sometimes more completely put away with a grief and rage we don't have to regret later.

 

[Barb]

this is my journal....

sooooooooo i dreaded yesterday....doctors appointment ...new doctor etc....by 2 oclock i was sick to my stomach...not sure how to do this...my son has visited her that morning and told me....to expect it to be bad...he had a good visit with her...but she was saying things very negative about me....i am glad she is hating on me..and not my son. the alf transports patients to the doctor and he comes in once a week to the alf. so i go in a few minutes early and get seated...wondering how angry she will be when she sees me....a few mins. later her and the aid come in....she sits in the chair next to me...smiles at me...turns back to the aid and begins to talk...she had no clue who i was....

now they tell me...make it easy...dont do anything to agitate or upset her....so i dont. i call the aid into the hall and tell her i will stay out of it...just get the visit done etc....

well an hour and 10 mins later they come out...mom smiles at me....begins talking to aid about how nice the doctor was...i go in and talk to doctor....i told him how guilty i was feeling...he smiled...said..."your mother can live alone, just not for long" he said her memory is worth about 2 mins. i told him i felt like a coward for not letting my mother know who i was...he smiled...said nothing cowardly do it and it doesnt matter how i feel...it matters how i get her thru what needs to be done without upsetting her.

then he told me his story...his mother for some reason knew him..always did...never knew his older brother...he goes on about how its not about how much she loved them...its the cruelness of the disease. then he drops the bomb....dont go see her for a month.....i am like..what...what the hell did you just say...he repeats it...a month...they need to force her into a new routine and you are upsetting her.

now get this..she is telling the aids..that i dont love her...she is going negative fast....and my son is still her golden boy....so i can live with that....

amazingly after the doctor said that she couldnt live alone....the guilt was gone...i am doing what is best for my mom...that is all i can do....she can hate me for it...my shoulders are kinda big....well not that big...da man went with me yesterday....and i only cried a little.

I think the doctor's advice about the month will do three things. You need a break from the guilt, she needs to adjust to the routine, and by then she may forget she's mad at you and you might not be assaulted with the guilt anymore. I worked in a nursing home, and on the dementia unit. I also did home care for a few years, and worked in a hospital. The most striking thing I witnessed was the toll any illness, but especially ones involving dementia took on the family caregivers. You need to be kind to yourself. If you don't, you'll die before she does.

 

[saveliberty]

Thank you for sharing a part of your life with us strollingbones.

 

[trams]

Bones, My mom went throught the same thing. When my sister put her in the home, they told her the same thing. It was hard but mom was getting violent at times. Good thoughts and wishes to you.

 

[Angelhair]

I pray and pray and pray that someone somewhere will come up with a cure for this horrific disease!!! Dear God I pray - make it soon!!

 

[JenyEliza]

*hugs* to ya bones. Wish I could fix this for you, but seems the advice the new Doc gave you is sound. I'm sure it seems weird not to see your Mom for a month, but it makes sense. We did that too with my grandmother and she completely forgot she was mad about "being put away like the laundry" (she said that with a REALLY MEAN tone....closest thing to TRUE HATE I've ever seen).

Totally and completely forgot WHO to be mad at and by the time my Uncles went to see G-Mom, she was so excited to see them (had no clue who they were, just knew they were important people to her, she even called them "the important men") and she wanted them to "meet all my friends".....she settled in good in about a months time. Your mom will too. Eventually.

Sending good thoughts your way.

 

[JenyEliza]

I pray and pray and pray that someone somewhere will come up with a cure for this horrific disease!!! Dear God I pray - make it soon!!

AMEN!

Right along with Cancer and other diseases that can destroy whole families.

 

[Big Fitz]

this is my journal....

sooooooooo i dreaded yesterday....doctors appointment ...new doctor etc....by 2 oclock i was sick to my stomach...not sure how to do this...my son has visited her that morning and told me....to expect it to be bad...he had a good visit with her...but she was saying things very negative about me....i am glad she is hating on me..and not my son. the alf transports patients to the doctor and he comes in once a week to the alf. so i go in a few minutes early and get seated...wondering how angry she will be when she sees me....a few mins. later her and the aid come in....she sits in the chair next to me...smiles at me...turns back to the aid and begins to talk...she had no clue who i was....

now they tell me...make it easy...dont do anything to agitate or upset her....so i dont. i call the aid into the hall and tell her i will stay out of it...just get the visit done etc....

well an hour and 10 mins later they come out...mom smiles at me....begins talking to aid about how nice the doctor was...i go in and talk to doctor....i told him how guilty i was feeling...he smiled...said..."your mother can live alone, just not for long" he said her memory is worth about 2 mins. i told him i felt like a coward for not letting my mother know who i was...he smiled...said nothing cowardly do it and it doesnt matter how i feel...it matters how i get her thru what needs to be done without upsetting her.

then he told me his story...his mother for some reason knew him..always did...never knew his older brother...he goes on about how its not about how much she loved them...its the cruelness of the disease. then he drops the bomb....dont go see her for a month.....i am like..what...what the hell did you just say...he repeats it...a month...they need to force her into a new routine and you are upsetting her.

now get this..she is telling the aids..that i dont love her...she is going negative fast....and my son is still her golden boy....so i can live with that....

amazingly after the doctor said that she couldnt live alone....the guilt was gone...i am doing what is best for my mom...that is all i can do....she can hate me for it...my shoulders are kinda big....well not that big...da man went with me yesterday....and i only cried a little.

Well God has given a small favor it seems towards your son. My last experience with my grandfather alive, he was terrified of me. Didn't know who I was and thought I was going to harm him. I was 17 or so. I lasted about 5 minutes before I excused myself went to the car and waited. When my parents came out I told them this was the last time I was going to visit. The man I loved was no longer there and I can't go through that again.

I understand your worry and dread bones. I watched my mother go for years from good days to bad taking my grandmother with her to visit him and saw the toll it took. Be strong and know there will be good days too. Take those gems and hold them close to your heart.

May I also make a quick recommendation as well? It was my experience that the longer it goes, the better their very long term memories seem to be, and you can learn some very interesting, things about their lives when they were young. Be ready to either record or write down what they have to say from posterity. Of course, if you have ways to confirm these things, that'd be wise too. But, it's another way to at least gain something worth remembering once it is over for you and your children.

stay strong and know that Her love that she has shown is not gone, only hidden behind the clouds and mountains of this horrific disease. Enjoy when it peaks through.

 

[AquaAthena]

Strollingbones, I am deeply sorry for the sadness and pain you and your Mom, are struggling with as you each try to cope with this debilitating condition.

Aqua*

 

[Foxfyre]

It is possible, once we are able to put things into some perspective, to have a sense of humor and that does help get you through it.

Hubby's dad would never wear his upper false teeth much and wouldn't wear the lower plate at all. The residents were permitted to visit each other's rooms and wander about the halls and we were amazed that Dad did that a lot even though he had moved about as little as possible before he went to the nursing home.

Then one morning his daugher arrived for a visit. It was one of the mornings he recognized her and he greeted her with a big grin and a whole mouthful of teeth. Not his of course. He had spotted some in another resident's room and appropriated them.

He has been gone for a long time now, but we still chuckle over things like that. You usually do remember the good times more than the bad.

 

[strollingbones]

today went well...i was only going to go in for a few minutes...she doesnt like the aid with her...so she wanted to go for a walk....without thinking i just took her to the car and took her to a popular pathway....i didnt sign her out....but it went well...da man was sitting in the car waiting and he just kinda trailed up on the path...all was well till we went back..she started to buck a wee bit...but she went back...she is now demanding her car and her car keys...cause she is going to a high school reunion in sylva...3 hours away...i am in the process of selling the car back to the dealer..at a lose but i need that money in her account not sitting in my yard....my car flipped to 2 hundred thousand today...she complained about how nasty my car was...and told me to clean it up if i expected her to ride in it....(that is vintage mom) she is too blind to figure out the bumperstickers...then demanded her car back...her white car....*its silver* now next step the stack of papers that i need signed....

but she was happy and seemed very well...she looked good....i keep telling her she has lost weight...and i think she has...aids are complaining that she walks fast...i bet she wears their asses out....i ask her how she liked her new chair..she replied she never got to sit in it..that the aid does....(bingo that is what the problem is) another chair is being delivered tomorrow. i have gotten in with a small family owned furniture place..she gives me the living and breathing discount...delivers the next day....the first time it was a 35 buck fee for delivery...today it was a 25 buck fee...they remove all the price tags and her son takes the chair and for some reason my mom just loves him and hugs him...they are kind and understanding....

so i take her back to her room...she isnt happy but not crying nor threatening to jump out the window...here is the sense of humor...we all look at the window and smile at each other...we just dont think the 4 ft drop will hurt her...she is not hitting me..she aint hugging on me...either but i am telling her i love her...she is slamming the door in my face...telling me to get her car, now. i am tell her i still love her...i hear a rather mad...okay...but i was so damned happy to get the okay...it beat the hell out of the "not enough" reply i heard all mothers day.

i am begining to have a little more confidence in this facility...seems these experts do know what they are talking about. i just cant stay away for a month....

let me explain something....you would think it would be a relief..she doesnt know me..fuck it...i will just mail the check and be done with it....i have talked to my mother everyday for maybe the last 20 years...never a day goes by that i dont call her..if she was pissed she might not answer...and to be honest i didnt worry when she didnt answer....i would just have the police go by and that would piss her off again ....she did get upset and refuse to talk to anyone on the phone for a week...that was a bizarro thing...i have not talked to my mother but three times since may 1. once on the phone..i didnt talk to her..she cursed the answering machine...2nd time..mothers day...45 min of ..i am gonna kill myself take me home....if you love me enough you would ...guilt hammer going....and then today...
as much as my mother needs me..right now...i still need her..she still laughs...when we are crossing the parking lot to go back in and she has began to whine..she begins to pass gass..loudly...i am telling her we best hurry and get back in....before her farts overcome everyone....she laughed and hit me...not hard...joking, i think.

so today is a good day...my son is 28 this year..he is a man. he has stepped up and taken a man's role. i cannot fault him at all. he has shown a compassion i didnt know about....i am very proud of him.
he may be a climbing guide bum but he is a compassionate and thoughtful man.

he also has my credit card, i am not sure how that happened. i remember him giving it back...i am not sure how it went back to him...

 

[strollingbones]

o and the nurses..werent happy with me...i didnt sign her out...they dont say much...i did go tell them i was sorry....i forgot....they just shake their heads...and go....be sure and sign yourself out...i realize that they have to track the patients and a missing patients is just what they dont want and they sure dont want a missing patient who isnt missing but someone just forgot to sign them out....amazing what she said with just a shake of the head. but in all fairness they do have monitors etc. still got that look of disapproval

 

[MaggieMae]

Stage 5:
Moderately severe cognitive decline
(Moderate or mid-stage Alzheimer's disease)

Major gaps in memory and deficits in cognitive function emerge. Some assistance with day-to-day activities becomes essential. At this stage, individuals may:

•Be unable during a medical interview to recall such important details as their current address, their telephone number or the name of the college or high school from which they graduated

•Become confused about where they are or about the date, day of the week or season

•Have trouble with less challenging mental arithmetic; for example, counting backward from 40 by 4s or from 20 by 2s

•Need help choosing proper clothing for the season or the occasion

•Usually retain substantial knowledge about themselves and know their own name and the names of their spouse or children

•Usually require no assistance with eating or using the toilet


Stages of Alzheimer's

i placed my mother in an assisted living facilitiy....monday...this monday...it seems like an eternity...i cant remember the last day i didnt cry...but i digress...

my mother could no longer live alone...yet she insisted on driving...she totalled her car on april 22....i went down and stayed, i left 24 hours..she purchased a new car. i went down and moved her here. she was going to kill someone..she is half blind and has a lead foot...we think she may have had a stroke and then wrecked...we have doctors appointments beginning next week...she called me tuesday to tell me how much she enjoyed being kidnapped from her home and place in a the assisted living...that woman has a mean ass mouth...she can get over it...and she will...most days she is unaware of who i am..she think i am her sister.....which cause a bit of a confusion when her sister showed up...but she is falling under the "veil of alzheimer's" as they call it...i went to my first support group...and i plan on going to seminars on this disease...it is truly a disease from hell....you watch a loved one slip away....you realize that when she calls you someone else's name that it is best just to go along with it...she no longer knows me..it was like a switch...day to night...she knows my son, sometimes...and she blames me totally for putting her in the assisted living...which one lady at the support group told me that may never change...

i fully recommend looking into long term care insurance for your parents or yourself. it is expensive but it has helped me put her into a posh warehouse...

the questions, the paperwork...you need the following....last will....living will...health care form....and durable power of attorney...i am not giving legal advice here..just saying...you need a lot of info..try to gather that before the crisis hits...you need soc sec #, medicare, insurance etc. maybe you should photo copy all this to a file...that would have been nice...you need all the phone numbers etc...sure i have a file now..but its never where i am.

i have her in a top notch place...however she needs the "special" ward which is full....she is the only female on the waiting list...so she is in a stage 3 unit....and she is trying to take off..."wandering" is what it is called. we will discuss that later. so i have a private nurse there 12 hours a day...8 am to 8 pm..hopefully that wont be for much longer.

so here is my advice to all of yall with aging parents....read the site...watch them...and make plans for it...that is all you can do.

remember: yes, i knew this was coming....but it came on like an explosion ...there was no...you have time to think this over...i had to make a move and do it fast...that is where my ability as the 'nuts and bolts' person came into play...this is also where i realized how much more should have been done sooner...when she was of sound mind...but that is 20/20 hindsight.....learn from my mistakes....

next chapter: bonez gets her face cussed off by mother...(i hate doing that third person mal)

Bones -- you have my sincere sympathy when dealing with a mother you love and who can no longer return that love. There's a book called "Elder Rage" which will help you immensely to understand that it's just a "normal" part of the terrible disease.

 

[MaggieMae]

this is my journal....

sooooooooo i dreaded yesterday....doctors appointment ...new doctor etc....by 2 oclock i was sick to my stomach...not sure how to do this...my son has visited her that morning and told me....to expect it to be bad...he had a good visit with her...but she was saying things very negative about me....i am glad she is hating on me..and not my son. the alf transports patients to the doctor and he comes in once a week to the alf. so i go in a few minutes early and get seated...wondering how angry she will be when she sees me....a few mins. later her and the aid come in....she sits in the chair next to me...smiles at me...turns back to the aid and begins to talk...she had no clue who i was....

now they tell me...make it easy...dont do anything to agitate or upset her....so i dont. i call the aid into the hall and tell her i will stay out of it...just get the visit done etc....

well an hour and 10 mins later they come out...mom smiles at me....begins talking to aid about how nice the doctor was...i go in and talk to doctor....i told him how guilty i was feeling...he smiled...said..."your mother can live alone, just not for long" he said her memory is worth about 2 mins. i told him i felt like a coward for not letting my mother know who i was...he smiled...said nothing cowardly do it and it doesnt matter how i feel...it matters how i get her thru what needs to be done without upsetting her.

then he told me his story...his mother for some reason knew him..always did...never knew his older brother...he goes on about how its not about how much she loved them...its the cruelness of the disease. then he drops the bomb....dont go see her for a month.....i am like..what...what the hell did you just say...he repeats it...a month...they need to force her into a new routine and you are upsetting her.

now get this..she is telling the aids..that i dont love her...she is going negative fast....and my son is still her golden boy....so i can live with that....

amazingly after the doctor said that she couldnt live alone....the guilt was gone...i am doing what is best for my mom...that is all i can do....she can hate me for it...my shoulders are kinda big....well not that big...da man went with me yesterday....and i only cried a little.

Keep up the journal! It's the best medicine for YOU!

 

[strollingbones]

i ordered ...the 36 hour day...i read everything i can find on it and become more confused....now plaque isnt the enemy or cause but perhaps a protector....back to square one on that...eh?

my son goes to see her today..he tells me she was out and about...i was overjoyed...with that news....he goes..."she was at the nurse's station wanting stamps"...puzzled.. i ask...."stamps, why?"
he laughs..." she is writing jams to come get her and telling the bank to remove your name from her accounts"...he begins to laugh....she told him not to tell me...the suits have made it clear...its a joint account....she cant remove your name without your permission....ahhhhhhhhhhhhhhhhhhhh o and the mail began to arrive today...tons of it....man the insurance people are getting fucking pissy....i told them to chill...it would get done..but not today....fuck i am buger kid or fed ex...you aint getting it your way and you sure the hell aint getting it overnight....i told one prick since they didnt begin paying for 180 days...look to me like i had a 179 days to get my mal together....you know they really like to close these claims out fast on cars...she totaled in on 4/22/10 and the claim is still open....and they want a report on the wreck....this is gonna be good...all she knows is the car pulled out in front of her and she hit it..and that policemen would not believe her and gave her a ticket. i am already dealing with the salvage side..they just want the title....i overnight the title to their address...and they overnight a check back...so i cant figure out what these claims adjusters want....o paper work for their paper trails....

 

[AllieBaba]

the phone call went okay..she sounded feeble but she wants to go home..told me to think long and hard about taking her home....i have thought long and hard...i would love to go...fuck em mom i will do a drive by at 11...have your mal you want and we will go.....but the deed is done..and she is safe...that is all i can do...i cant make her be happy but i can keep her safe

they want that dnr...they dont say it ...but you can see it when its mentioned....

Don't be pressured into signing a dnr.
I'd think that would be something your mother should have a say in.

 

[strollingbones]

mom has a health care thing....no feeding tube...etc...no life support....i really cant discuss a dnr with her...i just cant

its way too early for that.