Faking Alzheimers

[Lonestray]

Faking

I have been asking these questions for years. The experts in America say it is impossible for a carer to continue looking after a loved one when they have reached stage 7. Well I have been looking after my wife for over three and a half years years on my own with only a visit from a community nursing assistant once a month on a hit and miss basis, for a chat! Once a year I have to chase up her flu jab. By now I accept we don't exist to the outside world. Most things I have read on all web sites to do with Alzheimer's I have seen and been through, sadly the loved ones have passed away as the experts say, ie when they are near the end when speech and movement have gone and gereralized rigidity has set in. My wife has been in that condition all these years. The most anoying aspect of it all, is only one person was interested in the transformation which took place in my wife once I took complete control of her care, photos and videos speak for themselves. That Doctor sadly left the area two years ago. It makes me sad to see so many carers going down the same painful road. You name it, wandering, messing the floors, falls, nursing homes (2) hospitals ( 4 times) and one poor girl sent to cheer me up believed she could cure Alzherimer's. She also belived a disc jockey named "Mojo" on the radio was sending her messages to meet her and asked to use our phone to call him. A nice enough girl but a little disturbed. After all the turblance, I'm in calmer waters life is peacful. I continue to learn and hope please God we have more years togeather. God bless Padraig

 

[jenniferpa]

. A nice enough girl but a little disturbed.

I think that sounds like the understatement of the week.

Jennifer

 

[Margarita]

Lonestray

I must say that reading you posting Yesterday, 01:28 PM
did give me food for thought when you said

After 11 years, caring for her the one thing I have learned is the stop start ability to perform almost every function never ends. Each ability fades slowly,

Why can't anyone tell me where we're at now with this illness? Could it be no one knows?

When I say food for thought , it made me look at myself my future in the future (with out feeling
Guilty)
beside looking at my mother future as we all know what her future is even if we do not no when the ending will come ,its taken long hard 4 years to get to the stage I am in . I could not do what you are doing for your wife for my mother , but I do surly admire you doing it and sharing your life before your wife got to the stage she is in now and how you cope in the now with your wife .

I wonder if that poor girl who told you that, was under a lot of stress as they do say that if your under a lot of stress it can set of any mental illness if there is a genetic predisposition in your family ( am not talking about dementia AZ )



I am no doctor, but I wonder if the person with AZ only heart, blood pursuer, cholesterol etc is healthy they can live a long life in that stage 7 till the brain shrinks to zero point . I say don’t worry about that time untill that time come

 

[Lonestray]

Faking

Thank you so much Margarita, it appears there is a misunderstanding, my fault. The girl I refer to sent to me to cheer me up, was sent from Age Concern. They provide visits for carers for company. I landed up listening to all her problems and tried to help her. She had broken up with her husband in America and was missing her children. To cut a long story short I was pleased she went back to her husband. Needless to say I never bothered with with the service again, the first visitor never turned up. I've had too many strange experiences to recount during the 7 stages of my wife's illness, most of them to do with to people who should know better.
Regards caring for my wife on my own I have so many advantages over others to be able to do it. One, there is no generation gap, I'm in the winter of my years, my wife knows how important she is to me, she's my life. I can never know what it must be like to have a Mom, Dad, or other Family member suffer with illness. My wife was the first person in my life to show me love. She took on an emotionaly barren youngster who had spent the whole of his childhood locked away up to aged 16. I therefore ask is it any wonder I guard and protect her 'til death us do part. I'm very pleased to have TP to share a lot of the things I've learned along the way, after all how many older people are fit enough to have cared 24/7 for over three years at this stage, and 11 years plus in all. God bless. Padraig

 

[Lila13]

My mother got very involved with her carers' family problems, in the short time they were working for her. Some things I thought they really shouldn't be telling her , but at least it gave her something new to think about. Visiting my mother was clearly light relief for the evening carer who would otherwise have been sitting in the one room with her parents and 3 children. My mother invited her and the children to come and live with her! but she didn't want the elderly parents, they'd have been too much competition I expect.

Lila

Thank you so much Margarita, it appears there is a misunderstanding, my fault. The girl I refer to sent to me to cheer me up, was sent from Age Concern. They provide visits for carers for company. I landed up listening to all her problems and tried to help her. She had broken up with her husband in America and was missing her children. To cut a long story short I was pleased she went back to her husband.

Padraig

 

[Margarita]

My mother invited her and the children to come and live with her!

You made me laugh Lila as that is something I would do if I had an extra room and like your mother no children please lol .



Lonestray I get that the carer that come in ends Up telling me all about her life, since the last carer died. I am trying to keep my distant from the new one, even thought the new carer did tell me she looking for a room in my area and if I hear of one to let her know ,she live very far away so has to travel far to get to my area, she does have other jobs in my area.

my new carer said that she did not want any trouble when she first trun up when I ask her what she meant she said the carer who died use to say I was very nice and every one in the office sang my praise as no one wanted to take over her jobs in my area, said she died from being so stress from doing this job, as the people she carer 's for put a lot of stress on them agents carer if they do not trun up on time or do something wrong they phone the office complaining so much that they can lose there jobs .

I am wondering if she just says this to me about the stress of the job and carer dieing from stress just to shut me up & carer just killed herself . (the agency did tell me she just died in her sleep ) am nice but not that nice if you know what I mean.

No wonder Lonestray you want to do it alone



You always hear about care agents worker miss treating older people on the TV. I know myself how hard it is to care for someone with AZ I feel that carers from Agency’s should be trained like Nursery nurses have to be now so they can get better pay , we know how undertanding they are with dealing with someone with AZ .It make me wonder if they have references what experience they have with dealing with people that have AZ. so by law anyone can be a carer for someone with AD even if they have had no Experience??????

 

[Lila13]

I'm sure the carer knew it would only be OK for a few hours, very different from living in.

She asked what will my parents do on their own? and my mother said, ask Social Services, they will send them carers.

And of course once someone has moved in it is practically impossible to get them out again, as my family found when they got a "housekeeper" with a baby for my great-aunt after her stroke. The housekeeper used to go out late every evening leaving baby at home with the old lady who could hardly move.

Another carer brought her baby to my mother's once because of a quarrel with her boyfriend (my mother saw and heard some of the quarrel just outside her gate). It was fun for my mother to see the baby for a short time, but then she blamed the baby when she got a chest infection. It is much more likely my mother got that infection from going out and sitting on the ground after dark on a cold wet evening. ("Oh no, I didn't fall, I was just sitting at the bottom of the garden.")

Lila

You made me laugh Lila as that is something I would do if I had an extra room and like your mother no children please lol .

 

[JT13]

Conclusion

Months ago, I started this thread trying to figure out what's real and what was being faked.

We had assisted care for her and this kind lady left.

Previously, she couldn't do anything. Now, without having people do everything for her, she can suddenly... clean up after her meals, no longer demands to eat every hour, boil water, take her own showers....the list goes on.

Yes, Dementia CAN be faked in severity of symptoms even by someone who has very mild Dementia.

 

[Lila13]

My mother had a colleague who took early retirement over 20 years ago to look after his wife with dementia. She goes into a respite place every 8th week, (that was when he wrote to my mother, he'll be missing her letters). When he had to go into hospital he tried to get her respite week changed but they couldn't change it, and he was amazed at how much she managed to do for herself alone while he was in hospital and recovering from his operation.

Lila

 

[Tender Face]

Hi JT 13

Amazing this thread 'resurfaced' today when I had recalled it over the last 24 hours because of my own current personal circumstances .... whilst I'm pretty sure my mum is not 'faking dementia' - I am starting to believe that at this stage she still has the mental capacity to 'milk it' .... and before anyone and everyone decries me for being so horrid..... conversely, I have to say mum's 'variability' in terms of coping has been an issue in itself to deal with ... for her as well as me....

Months of swearing the TV is broken.... can't use the microwave..... then suddenly can manage a bus to town (OK her purchases prove a point.....) next day, can't remember my name or what a bus is..... ????

If you were able to expand more on your 'conclusion' I would be really interested, but appreciate that choice is yours....

Much love, Karen, x

 

[Margarita]

I know my mother has AZ , still on a good day she could get out of bed without anyone helping her , the next say even hours she need my help , my friend who sits with mum fines it amazing , when she sees it happening and belive she fakeing it in what help she needs .

Its like they get a boost of energy, and then it has gone the next. I wonder if it’s the inner core of them fighting this diseases , the disappearing of they ability to do sometime and then it reaper like magic , was something I could not get my head around in the early middle stages , now I find pleasures in when she does something like she use to do , she can still have me wondering mind you lol

JT13 , so your mother has mild Dementia .
Is it because of heart problems Stroke or heart attack or diabetic high cholesterol, high blood pursuer? is it control with medication for any of the thing I have mention , just wondering .

 

[Helena]

Karen

Your Mother like mine has Vascular Dementia
This quite literally means they swing from one wild extreme to the other within minutes or hours or days

Clearing out all my Mothers papers etc is proof positive of this
Her diaries tell the story

Lucidity to the crazies are well documented in her notes

Since she had stored every diary from 1968 and every single day has something written on it they are very revealing as to her health state in later years

 

[JT13]

With Dementia, the standard changes occur short-term... such as remembering one day, forgetting the next. Or, for a few weeks at a time.

But to see one actively knowing that assisted care is no longer available and a total change, it's not Dementia. It's as one of you have mentioned, "milking it when one can".

I'm not bitter about it or feel negative about that behaviour, maybe because I've already been informed and prepared by her family members that THAT's just what she's like before Dementia set in.

My only intention was to understand and hence be able to know what to do, say and prepare for her well-being when necessary. Now, I'm glad to know what lies ahead.

 

[Brucie]

I wonder if it’s the inner core of them fighting this diseases , the disappearing of they ability to do sometime

That is so perceptive! I agree, from my observations.

 

[Lila13]

I don't think you can ever know what lies ahead.

E.g. no-one who saw my mother 2-3 weeks before she died thought there was anything seriously wrong with her.

No doubt I'll get scolded again for saying that again.

Lila

 

[Brucie]

No doubt I'll get scolded again for saying that again

Lila, if that is what you saw, then nobody has the right to take issue with it.

Nobody on TP is an expert, other than in their own circumstances and what they observe and experience.

The great thing about TP is that everyone can pitch in their ideas and in that way others can relate to their own circumstances.

TP is a soup where we all put in ingredients [thoughts and feelings] and where members can ladle out the portion they want, containing the ingredients they want.

 

[Margarita]

Thank-you Bruce , its just so hard getting that message across , because like you lily I also find that how people look at my mother , 76 her hair still lovely, her skin really good all over her body for her age , a few carer who have wash mum have commented on that. She bounces up from sleep and talk like they is nothing wrong with her, but then your realize if you listen closely that she can’t follow a conversation. Walk with the Zimmer frame ,like elderly woman you see in the street, life her head up high and stand proud, even doctor in the hospital , don’t realize it if I don’t tell them or don’t believe me, they even had to do a memory test , which I found amusing, because the doctor done it like , who wants to be a millionaire , now Isabel for £30,00 do you know the name of our queen? Now why couldn’t they have done it like that at the beginning in the early stages, she would of not got so angry, now that doctor (Student doctor) bed side manner was good.

With dementia /AZ I feel we do no what lies ahead , but can't prepare when , how and in what order its going to happen is what make it so confusing , so emotional draining for the carer . but its good to learn and understand as understanding give you knowledge and knowledge give you empowerment , to give you the courage to see this to the end , even if we like it al not .

 

[Tender Face]

Just for the record, Mum’s diagnosis is ‘Alz with Lewy Bodies’ - not the vascular we suspected…..

Wasn’t sure whether to post on this thread or my original ‘Night times’ thread because this post probably applies to both … (and several others!). Interesting today that I couldn’t get to see mum through the day because of workmen at my home … to whom I eventually had to explain who I was shouting at down the phone and why ……This morning she was ‘doing her Christmas cards’ - ‘WWWhhhhaaaat?’ - ‘All done, mum, I’ve posted them for you ….’ Half an hour later, ‘But I haven’t sent them to XYZ….’, ‘Yes we have, I’ve gone through your entire address book’…. Another hour….‘I’m just letting you know I’m going to the Post Office……’…. ‘No need’ ….. ‘But I haven’t sent one to (St Sis)’ - no, you’ve written it, I’ve got it here for safe-keeping’ ……etc etc etc

Stuck with not being able to leave my house (and son) with strangers in and run down to her to speak to her personally…. I had to tell her the ‘surprise sleigh run’ planned for later this week … taking her to see 'St Sis' …. (am trying very hard NOT to digress to the subject of St Sis and why I am running mum to see her!) …

At which point, mum bursts in to (happy) tears…. And I can’t resist the ‘Only if you’re well enough’….. and get ‘Oh, I’m fine, I’ll be fine ….. there’s nothing wrong with me’…..

Frustrated, yup, but most of all desperately, desperately sad….. I’m not enough, can’t do enough for the lonely lady - dementia or no dementia - who is my mum…..

Soz, folks, just needed to share that……

Karen, x

 

[Margarita]

Oh Wendy you do make me smile , I was thinking let your mum post them , write them out again so what why worry .

Frustrated, yup, but most of all desperately, desperately sad….. I’m not enough, can’t do enough for the lonely lady - dementia or no dementia - who is my mum…..

No your not enough and you know why because your only human , now if we had superpowers

I so know what you mean desperately, desperately sad , I end up crying from the tension of it all , but feel better after .

 

[Skye]

Frustrated, yup, but most of all desperately, desperately sad….. I’m not enough, can’t do enough for the lonely lady - dementia or no dementia - who is my mum…..


Karen, x

Karen, sweetie, don't be sad. Stupid thing to say, of course you're sad. But don't ever think you're failing.

You must know, you've lived with it, that the essence of manipulation is that nothing is ever enough!

You're juggling a marriage, a family, a job, and a mum with dementia (and you're right, the dementia doesn't make a lot of difference in this situation). You're a HERO. Don't you dare believe anyone who says anything different.

Time you had some fun, young lady. Couldn't you leave mum with St. Sis while you have a break? (Try some manipulation yourself - tell her you thought that was what was agreed!)

Love,