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

[strollingbones]

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)

 

[Meister]

Sorry to hear about this, Bones. You have given people a good lesson from your experience in getting the situation into a managemable position. Thank you for your input.

 

[editec]

Stroll you have my sincerest sympathy.

It must be like watching a loved one drifting away on an ice flow.

I hope to GOD if this starts happening to me I have the fortitude to end my life before my son has to go through what you're going through.

 

[saveliberty]

My grandmother went into a nursing home at age 98. She wasn't very happy at first and the kids all knew it. Thing is, she got a lot more social contact with the staff and other residents than at home. She really enjoyed the social part of the home after a few weeks. Sometimes when we visited, she would cut us short, because they were having a card game or a meal and she wanted to get there on time.

It wasn't until the last year that mental clarity became an issue. Now my other grandmother had your mom's troubles. I think she thought my uncle was coming the next day to get her out until the last. It was real torture for my mom to see the person she knew stolen away by a degenerating memory. Finding something they really like and bringing it on visits seemed to help some. A specific candy bar would help about half the time.

My wife made a photo album that the whole family helped with. It had many pictures with a descriptive paragraph and it was helpful for everyone. If I was there, I'd give you a hug.

 

[strollingbones]

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....

 

[Angelhair]

So sorry to hear about this happening to your mom and family. It is a devastating disease - for all concerned. My heart goes out to you and your family. I have been there done that and it is hardest on the ones still aware. The pain will ease; the good memories will live on. May you find strength in your faith.

 

[JenyEliza]

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....

As a surviving grandaughter of a woman with alzheimer's, you've got a LONG way to go before you need to consider a DNR. That is, unless your mother has other health problems (cancer, heart disease, history of stroke or heart attack).

Alzheimers takes decades to finally kill its victim. Fasten your seatbelt, hunny, this is a LONG ride from hell and you'll need to be securely fastened.

Stage 5 isn't even all that bad (looking back in hindsight). Thank the good Lord my Grandmother was taken home and relieved of this disease by our Heavenly Father.

So sorry for the bad news....but....don't....DONT give in to her. She will emotionally blackmail you and do everything, including standing on her head naked, to get you to take her home. THIS is where the support group will be most helpful. They will help you stand firm in the decisions you know you have to make, but don't want to make.

God bless, bones. Let me know if I can help!

*hug*

Jen

 

[tommywho70x]

you have my sincerest best wishes and prayers for strength in dealing with the frustration and pain of watching your mother's spirit get sucked out of an otherwise healthy body.

my maternal grandmother and my father's oldest buddy both left by the route your mother has been detoured onto. it was horrible times for many people, not just the immediate family members and suffering that lasted years before the end came.

good luck

 

[Foxfyre]

Tough duty Bones, and yes, we cry a lot during the long goodbye. But they have also come so far in knowing how to treat and at least slow the progression of this cruel disease, and they keep learning more and more. That of course is small comfort to those who deal with it in the here and now.

I've lost a father-in-law and two dear friends to Alzheimers. Probably my mother-in-law too who was suffering severe dementia the last decade of her life, but was never formally diagnosed with Alzheimers. So know that there are those who know what you're dealing with.

Most of us are in no position to help other than just stand by and care.

And you are obviously taking the constructive route in seeing that there is much to learn.

 

[boedicca]

Sorry about your mom, SB.

My grandfather went through a similar transition, including losing his driver's license and needing to go into assisted living. It was awful. He thought he was being held captive in a concentration camp and that the nurses were guards. He'd beg the ones he thought were sympathetic to let him go. It was a relief to see his suffering end when he passed away from prostate cancer (a recurrence which the family decided not to have treated given his advanced age and mental state).

I hope the universe starts dabbing some mercy on you soon.

 

[strollingbones]

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.....

 

[strollingbones]

Sorry about your mom, SB.

My grandfather went through a similar transition, including losing his driver's license and needing to go into assisted living. It was awful. He thought he was being held captive in a concentration camp and that the nurses were guards. He'd beg the ones he thought were sympathetic to let him go. It was a relief to see his suffering end when he passed away from prostate cancer (a recurrence which the family decided not to have treated given his advanced age and mental state).

I hope the universe starts dabbing some mercy on you soon.

i ran into a friend...her father died about a year ago...she was glad...she told me...it took 2.5 years...she was giving me hope...in her own way....i think

there is an old saying...if everyone in town....put their plate of troubles on the table....you would surely pick up your own plate and go home...

 

[Foxfyre]

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.

 

[saveliberty]

I feel like I'm suppose to fix problems and be the stable one. Kind of hard to do that when things get out of your control. I get quiet and go off by myself. By the way, we know the wife cares.

 

[Foxfyre]

I feel like I'm suppose to fix problems and be the stable one. Kind of hard to do that when things get out of your control. I get quiet and go off by myself. By the way, we know the wife cares.

Thanks Save. I appreciate that.

 

[strollingbones]

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.

 

[saveliberty]

People are trying to make something good out of a bad thing that happened to them. You will feel compelled to do the same some day.

 

[Foxfyre]

Bones, of all the stress, frustrations, fears, and uncertainty of the best thing to do, mixed in with the grief and anger that this is happening at all. . . .

. . . .one of the toughest aspects is the guilt trip our loved ones heap on us because they are incapable of understanding or appreciating what we do. It hurts beyond belief to have your dearest love one accuse you of cruelty, insensitivity, and worse. It hurts to have them look at you with hate and recrmination and loathing, almost as much as it hurts to hear them plead and beg for relief from their own suffering and have to tell them no.

And of course there is the real guilt trip and self doubts. Am I really doing the right thing? Am I being selfish by not being willing to set aside my life and care for him/her on his/her terms?

The only way we get through that part is by looking at what we expect of our own children, and that as much as we care and want to make it better, we serve no one well by suspending our lives in these cases. And it is small comfort, but even if you did, they would still be incapable of understanding or appreciating what we do.

 

[Luissa]

I took care of people with dementia and alzheimers, and have taken a few classes on it. I will try to find info on this one lady who does speeches on how to deal with family members with the disease.

My biggest advice is don't take it personal when they get angry with you.
And this might seem heartless, but I hated watching people think their parent would get better. Once they stage, they will never return to what they were before.
It is hard to watch the disease progress, but just always be there for them. And don't let them put your mom on a whole bunch of prescriptions.

 

[Luissa]

Reading some stuff by this lady might help. Her name is Teepa Snow, and when I went through my training, her videos and seeing her speak helped a lot.

'Why do they do that?': Alzheimer's expert Teepa Snow educates caregivers about interacting with dementia patients | Salisbury, NC - Salisbury Post