who are you

[Carobby]

My mum has been diagnosed with dementia for just over a year now. She has had a rapid decline, but in the past few months she has forgotten who my son is. She seems to believe that he is her nephew. no amount of explanation to who he is to her seems to be taken on board and she is amendment his not her grandson.
Last night we had friends around for my husbands birth day and all night she was trying to whisper something to may husband. When every one left she said to my husband and daughter that we need to tell jack (my son) that his mum and dad are dead. This has become quite upsetting for him although he does not say that I can see he is upset. I just don't know what to do how to convince her he is my son and her grandson.

 

[marionq]

Don't bother. He is who he is and she may well over time believe he and indeed the rest of you are anybody and everybody. It is a shock at first but you know as long as nobody makes a fuss and just says "Oh dear", "Is that right?" or any other platitude then no harm done. My husband often asks me strange questions and I used to get very uptight about it but now I just nod, agree, gloss over - whatever it takes to keep everyone happy.

 

[Carobby]

Thank you I do that every day really as half the time she does not know who i am. in the mornings she keeps looking for the others I used to explain every day that my husband was at work and only me and her are in the house, Now she says where are the others all at work I just say yes as I do not know who the others are.
Last night me and my daughter were doing the cooking when we both sat down to eat, my mium ask where the other one was I said who and she replied the one that was cooking? both me and my daughter were at the table. She ask again later And i said she has done the washing up and left is it wrong to say something that was not true? it did however stop her asking.
Also dose any one know if my mother has lewy body from these symptoms she see's people in her bedroom in the morning also outside in the garden she walks with a stoop and seems to have forgotten to pick her feet up and her slipper squeck on the floor all day

 

[Helly68]

I think it would be hard to make any diagnoses from what you say, dementia progression or even type is often difficult even for professionals. I believe that some people with dementia do hallucinate - you mentioned "seeing people" who presumably aren't there and changes in spatial perception, brought on by dementia can change walking patterns and increase the risk of falls.
I find trying to reason - or some days have a convo with Mummy (mid stage dementia in a care home) is somewhat of a lost cause but sometimes distraction - with photos or pictures or finger food she can eat herself will stop her from going over the same thing.

 

[marionq]

These are all progressions of dementia and if they are not upsetting her too much I would just relax about it. You might mention it to her CPN if she has one, or her GP, but to be honest you have to learn to live with these oddities.

I know Lewy Body dementia can become very disturbing as my husband's cousin had it but it took some time to develop. What age is your Mum? Does she go to day centre! She might enjoy the company and you might enjoy the break. Today my husband's centre were all going to see Mamma Mia and then go out for lunch. He had to miss because he has a hospital appointment but they do have a very nice time. Give it some thought.

 

[Canadian Joanne]

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Last night me and my daughter were doing the cooking when we both sat down to eat, my mium ask where the other one was I said who and she replied the one that was cooking? both me and my daughter were at the table. She ask again later And i said she has done the washing up and left is it wrong to say something that was not true? it did however stop her asking.

So your mum was happy with the answer? That would be the most important part to me. No, you were not wrong with your answer. We call them love lies, when telling the truth will only upset, distress and agitate the PWD.

My mother was diagnosed with AD and she saw people during the earlier course of her disease. I wouldn't worry about it much if she doesn't appear to be worried.

 

[Carobby]

my mum seems almost normal at times. In the mornings she wants to get up at anywhere from 5 on wards. I have a blind on the landing window and every night i tell her if the blind is up im up if its still down its not time to get up. This morning she wanted to get up so she checks my room then she goes downstairs to check who is up,.she can doe this three or four times. Then she starts talking loud are you getting up this is boaring. when i eventually get up she tells me that she has been asking sheila if its time to get up but she will not answer her Sheila is her sister who is very elderly and lives in london. today I ask her why she got up and she said she was looking fo some one to talk too. Again I explained that it was only me and her in the house she just looks at me blankly. I have also noticed she never blinks is that all the progression of dementia I know thing are getting worse she is 86 how much worse does it get

 

[SpanishAnnie]

Oh I feel your pain, so hard to see loved ones confused and not knowing who other family members are. As mentioned above trying to explain just doesn’t seem to work, the information won’t ‘stick’ in their minds. Sometimes it can also add to confusion. I read somewhere about getting into their world, into their minds...what must it be like if you didn’t know someone or thought it was Uncle Fred, sister June etc...my FIL lives with us and there are only three of us, him, me and my husband. Some days he thinks I’m a care worker and that there are two of my husband ...both with the same name, we just gently go along with things. In the mornings is when he thinks I’m the care worker, when I give him his breakfast he says something like ‘oh what time did you start work this morning?’ So I just say ‘about an hour ago’ and that’s enough. If he asks for the other man, I say he’s gone home for the day. We then usually move to distraction tactics, offer tea, a cake or talk about the weather. Anything to show respect and keep your sanity. Each day brings something new to deal with, what worked yesterday might not work today...I just keep thinking what it must be like to be in his world...the empathy comes ! Good luck !!

 

[Spamar]

There was only my OH and myself, but I often became a friend who was ‘looking after you cos your wife has had to go out’.

 

[Witzend]

It's hardly ever any use trying to convince a PWD of anything once they've made their mind up. All you can really do is explain to your son that your mum can't help it, her brain and memory are no,longer working properly, so he mustn't take it to heart - and that her former self would be mortified to know she'd upset him.

My grown up daughter went to visit my mother with dementia on her birthday, bearing flowers and chocolates. She went up to her with a big smile - 'Happy birthday, Granny!'

The only reply was an exceedingly grumpy, 'I'm not your granny!'
Luckily my d was sufficiently clued up about dementia not to take it personally. These things can of course be very upsetting at first, though.

 

[Herewego]

Thank you I do that every day really as half the time she does not know who i am. in the mornings she keeps looking for the others I used to explain every day that my husband was at work and only me and her are in the house, Now she says where are the others all at work I just say yes as I do not know who the others are.
Last night me and my daughter were doing the cooking when we both sat down to eat, my mium ask where the other one was I said who and she replied the one that was cooking? both me and my daughter were at the table. She ask again later And i said she has done the washing up and left is it wrong to say something that was not true? it did however stop her asking.
Also dose any one know if my mother has lewy body from these symptoms she see's people in her bedroom in the morning also outside in the garden she walks with a stoop and seems to have forgotten to pick her feet up and her slipper squeck on the floor all day

While I certainly can't say if your mom has Lewy Body dementia, it does sound very familiar. My OH was diagnosed last year with AD but I think he has Lewy Body Dementia. He has been seeing people/animals and had hyper sensitive hearing for a couple of years now. It is an everyday occurrence now and much like your mom asks where the other people are, where the person he was just talking to has gone and like you has seen me doing things and then asked where the lady went that was (in the kitchen/garden); has also gone right past me and when I asked where he was going said he was looking for me.

In addition while different research seems to show different findings it appears that with Lewy it does not appear to take quite the same trajectory! My OH too has declined quite rapidly since last year. When diagnosed he could still do a lot of things for himself although had lost the concept of time/day of the week, was already seeing things (and had been off and on for some years), had been driving although only locally, had lost all sense of direction and was obsessive about things (wallet, socks - don't ask, hat, glasses etc) however you could still have a conversation with him and he could more or less follow it.

Now everything he talks about is not real, has forgotten his mom has died (20 years ago), can still talk but doesn't really know what a lot of the words we say mean, real conversation is a thing of the past. He can not find his way around the house, although we have lived here for 35 years, and basically needs everything done for him. He can sort of dress himself, but never in the right order, buttons, zips etal can't do - is still continent although will pee in the bath or shower (at least it is still on porcelain)!

Having read up on Lewy Body dementia I am convinced that is what my husband has while all dementia's end up being similar, the route to the end point varies depending on the type. I This said, you may say, why does it matter, well two reasons in the case of Lewy:

• Research has found that medication given for AD can have an extremely adverse effect on individuals with LBD, so it is important if any medication is being considered if LBD is suspected any medication is selected with great care
• Some research has also identified that the individuals with LBD appear to have a faster progression post diagnosis and life expectancy is shorter than those with AD

I am very glad that my OH (who is 8 yrs older than I am) and I retired early and did quite a bit of travelling etc. as I have seen this coming for the past 8 years.

I know that a definitive diagnosis cannot be made, the best they can do is to say it is probable that someone has it. My OH is due another scan at the beginning of Sept and sees his Memory Clinic Dr towards the end of September, so will see what he says then - I have asked the question regarding Lewy Body, so we wait and see.

I would recommend reading A care giver's guide to Lewy Body Dementia written by Helen and James Whitworth - while some of it makes me feel very inadequate, it is a very useful and informative book.

 

[Carobby]

thank you all for your replies its comforting to know im not alone. although I some times wish it was all over so i can remember my mum as she was not what she may turn into

 

[karaokePete]

Hello @Carobby, you are certainly not alone as my wife has often asked me who I am. Indeed, just a few weeks ago she woke me in the middle of the night to ask me who I was (I don’t know what sort of night she thought she was having when she woke up beside a stranger!). I actually had to introduce myself with name and relationship before she would settle.

There’s a great thread with some good tips on communication that you can locate by following this link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/ it’s a bit of a list for a perfectionist so don’t beat yourself up if you can’t follow all the tips, however, I hope it helps.

 

[Bod]

Setting the scene.
Father and I are talking about the family. He wants to know who I am.
Me "I am your son"
Father "Who's your mother?"
M "Norah" (they were married 30years)
F "no... don't know her"
F "Well who's your father then?"

This conversation did happen, although I was not surprised, his memory was stuck in the years before I was born.
It was all said in good faith, he was trying to place me in the wider family, but before I was born, I think he thought he was my brother, or cousin.

It's tough when that happens, but it changes nothing.
I didn't half get a funny look, when I stopped laughing, it was the way he said it, a genuine puzzled query.
His memory had regressed in chunks, the first we noticed, he never mentioned the 1960s or later. Then it was the 1940s, mostly when he was a boy, he came out with some new stories, that us kids had never heard before, making his father out to be a bit of a saint, which he wasn't!
But he always stuck to the memory of being held by his grandmother as a small toddler, to watch the Flying Scotsman train go passed. research has shown this was possible.

Funny thing, memory.

Bod