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Dementia that is only seen by me

(68 Posts)
Betty65 Mon 15-Jun-20 09:03:31

My mother is 87, I know she has dementia. From hiding incontinence pads in drawers, believing that she takes rubbish out to the bin, believing that she cooks herself a meal to telling me that someone came to take her car away last week, when it actually went last September. There are lots more examples but the end shot is she had dementia.
It does not present itself when her carers come each day, when ever she speaks to anyone on the phone, when the doctor comes etc. Indeed she is a jolly nice lady to all these outside people.
To me she is argumentative, always trying to start an argument, accuses me of hating her and how she should jump off of a bridge because she is such a burden to me. I know it’s because I’m the closest to her, in fact I am the only one, but it’s getting to me big time.
I arrange carers, then she doesn’t like some of them. She had a heart attack in January and we have had a variety of carers who all think she is lovely. She got rid of carers a couple of months ago, then I had to put them back in place cause she was poorly, she has carers every day and last week I put one more carer in place for 2 days so that I can have some me time and free head space. She paid her off and sent her on her way yesterday. She flatly refuses to go into care so it’s all down to me. Help

Lucca Mon 15-Jun-20 09:08:26

Really hard for you. Would there be any mileage in talking to someone from a dementia support/advice group of some kind?

aggie Mon 15-Jun-20 09:09:15

Oh Betty that is such a hard situation , I can’t help but just hoping others on here have some ideas for you xxx

Oopsadaisy3 Mon 15-Jun-20 09:21:18

I think you are right, she is nasty to you because she is frustrated and you are closest to her. She might well be on the downward slide towards Dementia, maybe Vascular Dementia though?
Vascular Dementia patients might have one episode which leaves them forgetful, we said it made my MIL a bit doo lally, but until they have another ‘event’ they stay pretty much on a level, she still wanted to go out and about, but was very unpleasant to her daughter and hated the Carers, but was sweet as pie to absolute strangers, in fact she was mortifyingly friendly to just about anyone who glanced in her direction.
She was also throwing away family heirlooms and even her own jewellery in the rubbish along with uneaten meals. It took another event to get the Doctor to believe us and organise scans etc.
Sorry I know this isn’t helpful, hang in there though or insist that she see a Doctor, maybe keep a diary, when MIL actually got a diagnosis she was given pills which calmed her down and seemed to help for a while.

kittylester Mon 15-Jun-20 09:31:17

It is well known that people with dementia of any type can put on a brilliant 'social facade'. I suggest you ask the gp to see her about something else and then to assess her by doing a 'mini mental test'.

Or contact the Alzheimer's Society for advice.

Izabella Mon 15-Jun-20 09:51:17

Lots of support here

Izabella Mon 15-Jun-20 09:54:25

Ps if you search for’ hostess mode’ on the site things will fall into place for you. Pm me if you need help. I have early alzheimers but still have insight and am aware of the help and support out there

Oldbat1 Mon 15-Jun-20 09:55:57

Mil did exactly the same. We managed to make gps appointment on another matter and they did a memory test and organised scans. Perhaps not so easy currently but worth contacting your surgery. The Alzheimer’s Society have excellent resources and have a forum similar to this whereby you can read others experiences. Good luck. Mil is now in a home but only as a result of my husband developing cancer - I just couldn’t cope with mil and chemo treatments for him.

BlueBelle Mon 15-Jun-20 10:04:31

I must tell you a little story about my mum who had Alzheimer’s for the last seven years of her life and could be extremely difficult but also adorable depending on which way the wind blew, one day we had to go to hospital for a checkup she was laid on the bed waiting for the doctor to come and she and she was getting increasingly difficult as she was bored she kept trying to ease away to the bottom of the bed to put her legs over and climb out and escape I kept cheerily bringing her back up and trying to talk to take mind off things she was getting more and more annoyed with me and started to tell me off in no uncertain terms telling me to mind my own business, to leave her alone blah blah getting quite nasty a fair bit of swearing ......and then the doctor walked in, well she looked at him, she fluttered her eyelashes put on a beaming smile and said ‘hello Doctor how lovely to see you‘ I’ve never forgot the complete and utter contrast

Harris27 Mon 15-Jun-20 10:07:40

Can I just say do you know her doctor? You could try and make an appointment with her doctor and express your concerns. You will,have a battle with the authorities after we tried to speak to them about our mam disappearing in the middle of the night not eating buying lots of cheese scones and nothing else. It wasn’t till she collapsed in m&s and we got her into hospital that we got a diagnosis but the pain before and after that was horrendous.

kittylester Mon 15-Jun-20 10:11:34

A brilliant example of the social facade Blebelle. The social facade is also why my mum was called the Duchess in her care home. grin

lulusmf Mon 15-Jun-20 10:23:54

Yes, it was so hard for me to convince my MIL's GP that there was something very wrong with her. It was only after a 7.00am phone call from her neighbour telling us that MIL was hanging out of a window stark naked brandishing a knife and yelling that she'd been raped that her GP finally listened to me. MIL went into emergency respite that night and remained in care for the next 4 years until she passed away. I had endured many months of difficulty with her prior to this and strongly believe her descent into full blown dementia could have been a slower kinder experience for her if I had been listened to and action taken earlier.

sarahellenwhitney Mon 15-Jun-20 10:27:51

My heart goes out to you and others in your situation. I too have been there bought the teeshirt, tried dealing with it myself.You need to present this situation to your mothers GP. I gave in after believing I could cope convincing myself M would get better ?

Gwenisgreat1 Mon 15-Jun-20 10:40:13

Don't suppose you could arrange to take her for afternoon tea pre-arranged to a care home? It would probably have to be 'staged' for her benefit? All in the hope she would decide she'd like that every day??

win Mon 15-Jun-20 10:56:05

Insists on a referral to the Memory Clinic for tests. The doctors try often do not have a clue. The Alzheimers Society is brilliant as is their chat room Talking point. You can ask the A.S for the nearest Admiral Nurse, once you find her everything will fit in to place, they a just brilliant. Do not get brushed off by the doctor it is your mother right to be seen properly. Threaten to walk out on hr and they will soon do something to avoid a disaster. I have been there twice so know. Good luck and stay strong.

4allweknow Mon 15-Jun-20 10:57:09

Always those closest who get the tongue lashings. Contacting a dementia support group may help with advice. Do the carers not wonder why they are dismissed? What care are they ctually meant to be providing? Surely if it's personal care then they could attest to your DM not being aware she does need the service. They should give written reports of their visit, all of which can perhaps aid you obtaining some kind of formal diagnosis. Worrying and draining for you as it no doubt is you do have to take care of yourself and look to involve formal agencies in your DMs care.

NemosMum Mon 15-Jun-20 10:58:35

Betty65 it IS tough, and many people looking after LOs with dementia will identify with you. I got help from the local Carers' Association, who kept in telephone contact. They understand how this works! Have you got Power of Attorney? That would help with decisions e.g. about carers etc. I looked after my husband for 15 years with a rare form of dementia, and his family were only aware of it for the last 7. Even after they were told, they would visit about 3 times a year, swoop in and say, "Oh Dad's really doing well, isn't he." And he did do pretty well while they were around, but actually, the demands on the person from a visit are far fewer, because the visit sets the agenda, and it's only for a short time. Said family would b****r off back to their busy metropolitan lives, leaving me with a man who had serious delusions and hallucinations, followed me around like a lost dog and had a REM sleep behaviour disorder. It was massively frustrating! The other thing which helped me immensely was jotting down a few sentences every day about how the day had been. Include what happened, and how you felt about it. Make sure it's dated. It helps to externalise feelings, and there's research indicating that it can help you deal with your feelings. The other advantage is that when you are asked by clinicians, social workers etc., you can go back to your notes and tell them when certain behaviours began, how often they occur etc. Good luck. flowers

Saxifrage Mon 15-Jun-20 11:07:22

My husband has had dementia for over 3 years now so I am very aware of many of the problems. You don't say where you live but in many areas there are now quite a lot of Carers support groups and services. I have found that belonging to a couple of good support groups has been brilliant. I have learned so much from them about what to expect, how to cope and how to access support. You could start with your local authority website and ring the Alzheimer society. It would help a lot to get a diagnosis so I would definitely press for this with her GP and any other medical services she comes in contact with. Although you can't go to support meeting at present there is still telephone support so very best of luck with finding some help. Most of all you need to look after your own health and sanity! I do hope you can get some relief.

NanaDH Mon 15-Jun-20 11:07:36

All comments very familiar, eventually after all the above and more. Doctor, Police, mental health, a broken hip; after falling on the ice in the middle of the night. 3 months in assessment hospital, where she broke most of the equipment in her room and threw her food cutlery and underwear out of the window A lovely small care home agreed to have her she spent the next five years being cared for by the most wonderful team who put up with her behaviours laughted with her and made her feel safe and loved. I hope your mum finds a safe space too

icanhandthemback Mon 15-Jun-20 11:46:05

I have the same problem with my mother although it isn't me who gets the unpleasantness most of the time. She also is in complete denial about what she does regarding food and drink preparation, handling her medications, etc. She does absolutely nothing but if you listened to her telling the assessors what she does, she'd have them believe that she is the Domestic Goddess. She can pass their mini tests for Dementia because she is intelligent enough to find clues in her surroundings and there is nothing wrong with her eyesight so when they ask the date, she is perfectly able to see it on their computer. The only thing she struggled with was what she couldn't get clues about but they said that was ok. They don't see the hiding of hygiene protection, having to take her insulin away because she forgets she's had it, the abuse because she "knows" you haven't told her things and there is no way she has been incapacitated for the last 10 years, its only been a couple of months. I feel your pain.

Granjax33 Mon 15-Jun-20 12:06:57

Contact a local carers centre, Carers Trust who will offer support and signpost you to anything else relevant.

grandtanteJE65 Mon 15-Jun-20 12:19:20

You need to discuss this with your mother's GP and with her carers.

Even although she keeps up a facade with them, they are used to detecting signs of dementia, so once you have alerted them to your concerns, they should be able to judge the situation.

Could there be other reasons for her confusion? Dehydration, urinary infections, medicine?

Get in touch with the Alzheimer's association too. You need support in dealing with this.

Mealybug Mon 15-Jun-20 12:21:28

Long post but I'm going to be brutally honest, I don't want to be a carer anymore. The rubbish I've put up with over the years would try the patience of a saint. Hubby started with an anxiety state soon after we got married 46 years ago so never worked. Had a brain tumour in 1993 and another one in 2008, shortly after developing Lewy Body Dementia. He used to have hallucinations, paranoia, tried to throw his frame through the window and glass door because he thought the house was being set on fire by next door. He said horrible things to me and told the Mental Health team I was taking multiple men upstairs and I didn't do anything for him, yet when carers came or nurses he was sweetness and light. He's now bedridden after numerous visits to A & E with Sepsis or Aspiration Pneumonia and I've had enough. My day revolves around feeding him by hand, organising carers, Doctors calls, District Nurses etc with no time for me. I think I've done my share but the only alternative is to put him into a nursing home but the feeling of guilt stops me. Everyone thinks I'm ok and happy with my caring role, but I'm not. My dtr isn't much support and will ask how he is as long as I don't ask her to do anything, so it's just me. I feel like I'm in prison whilst he gets waited on hand and foot, I know it's not his fault but when you lose your identity and your ability to have a life it's really hard.

diygran Mon 15-Jun-20 12:44:19

You know you are at breaking point.
My mother tried to look after my dad at home. It turned into a 24hr job with carers coming in. I stayed over to help but he would be on the go all night.
Our excellent dr. told mum she would be collapsing if this carried on. She had heart problems and dad had heart and stroke problems and dementia. We found a very good nursing home for him after looking round several. He lived happily there as he felt secure then died 4yrs later.

lemsip Mon 15-Jun-20 12:44:27

mealybug, you deserve a life. Put him in a home! The brain tumour and other illness's mean he is tormented by the situation he finds himself in but you don't have to waste your opinion. thankfully I live alone.