Memory issues : My memory seems to be... - British Liver Trust

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Memory issues

GrandmaDylan profile image
55 Replies

My memory seems to be getting worse. I struggle to find words which I find really frustrating. Yesterday my son had a family barbecue and I put some baby salad potatoes on to boil and completely forgot about them. My daughter went into the kitchen and said she could smell burning and the potatoes were completely black as was the pan. I've done this several times in the last few months and I'm really concerned about it. I'm seeing my new hepatologist next Tuesday so I'll tell her about it.

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GrandmaDylan profile image
GrandmaDylan
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55 Replies

Hi Debs

Wouldn’t get too worried yet....

My wife has left the hob on twice in the last two months with nothing on it... (i nearly didn’t add the “it” there 😁, oh my, the mind would have boggled 😁)

I forgot tonight what I had for lunch today. And as for knowing what day of the week it is ....hmmm

So I reckon we are all guilty of memory lapses from time to time 😁. But of course it will be interesting to hear what your hepatologist says. Make sure you write it down before leaving...

Miles - I think hmm

in reply to

Is this a liver thing? Or we are all just getting old and forgetful. 😎

in reply to

Hi nidia. A bit of both I reckon!

Miles

in reply to

Mention it to the doctor for sure Grandma D but Miles might be right here. Lets not forget you do have ALOT on your mind and have had even more on your plate these last few months.

The other day I came home to pick up something and run back to the store. Instead of picking it up I walked in the house and sat on the couch and forgot all about why I came in. When I remembered, I got up to leave and couldnt find my keys. Of course because i left them in the ignition of the car with it running as I was initally supposed to just run in and out of the house. 🙄

It definately worried me but, at the same time I did figure out in my head while it was all happening exactly what the square footage of my new shower stall will be and how many tiles Id need to tile it including the cut offs.

Point of the story is sometimes we get our mind right onto something else (even if its subconcious) and we can completely forget what we are doing right in front of us. Perhaps your mind is jusr juggling to many rhings at one time. ❤

in reply to

Hahaha Phoenix spot on. I think a lot of us may have been there and done that. It is, as you say, when you are trying to do more than one thing in your head (I definitely cannot) at a time.

Miles

GrandmaDylan profile image
GrandmaDylan in reply to

Flipping heck phoenix you've made me feel a lot better now. I like everyone else is scared of losing my memory. I had put it down to being preoccupied with all my health issues but HE terrifies me. No one wants to be out of control.

in reply toGrandmaDylan

Popel profile image
Popel

Had very similar HE so much so I was banned from anything electrical or from cooking by the wife incase I burned the house down.lol I suppose its not really funnyThough.also when I got assessed at QE Birmingham hospital I was told not to drive and I didn’t want to tell them I’d just bought a brand new car.at work I’d pull into a housing estate at work.do my job as a gas man then when it was time to leave I’d forget where I was and how I got there.thats when I realised I had to go on the sick as I didn’t want to be putting lives at risk by installing gas.all the best.paul

in reply toPopel

Yes Paul. I was told the same! I handed in my licence like I was “told” ( or read?) and it then took me 5 months and 5 forms to get my licence back AFTER being given the all clear to drive again!

I was told I could drive again after I had sent the first 2 forms - under Section 88 of the Road Traffic Act. But I wasn’t allowed to start my volunteer Hospital job until I got my actual licence back. An infuriating 4 month wait after being told I had got the “job” . Aaagh 😁

Miles

Popel profile image
Popel in reply to

Hi there.i never drove after being advised not to.so I’m glad I never handed in my license then after reading what you went through.im Black YouTube driving now after two months post TP but was told I should wait longer by a liver nurse because of my medication but when I asked the surgeon at clinic he said I don’t know what you’re talking about.its been hell letting my sister in law drive my brand new golf .lol taking me to clinic.paul

Popel profile image
Popel in reply toPopel

Just read that.don’t know how black YouTube got there.it was meant to read back to driving.lol

in reply toPopel

Hehe that sort of thing often happens to me as well. Must be something to do with auto predict or auto correct?

Poor you and your new Golf ☹️. I felt similar because we also bought a new car one month after my TP. But I can’t really complain because if my wife hadn’t driven me everywhere I would have been stuck more or less - bus once every two hours. Timetable - well there might be one for leaving the depot but not by the time it arrived around our way lol.

I was going to say or “advise” not to hand in driving licence but ....

What got me was that the 5th and last form was all about how much I drink, when was the last time I had a drink, what was it 😁 etc etc. I had fun answering NIL, June 2014 and I haven’t got a clue 😁. I couldn’t believe it - this is from a “medical” team at the DVLA - they obviously don’t know much about the requirements for a liver transplant 👎🏻👎🏻. All forms - with slight variations - also were sent to my doctors to fill in. Aaagh!

Miles

AndyEssex profile image
AndyEssex in reply to

Getting insured under section 88 of the Road Traffic Act is pretty difficult as it seems like most doctors and insurance companies haven't heard of it. My insurance company first said they can't insure me without a driving licence so I spoke to DVLA and they said that section 88 over rules a surrendered licence. I then phoned the insurers back and told them I wouldn't renew my policy unless they insured me, and that section 88 wouldn't exist if you were unable to insure me on it.

With regards to the main post of memory loss, I think my transplant and also immune suppressant medication have made my short term memory very bad. Looking back it probably wasn't that great anyway but now it's awful. My long term memory is still fine. I can still remember everything about the 80s, but if I'm popping up the road and somebody asks me to get them a paper I'll come back without it for sure.

in reply toAndyEssex

Hi andy

I had no problems with insurance...

Guess it depends on company. But if DVLA and your Consultant and your doctor all say you can drive there’s nothing that the insurance company can complain about surely! But I’m not a lawyer but I would get one to contest any issue if I had had to - but I didn’t 😁

Miles

AndyEssex profile image
AndyEssex in reply to

I did end up speaking to somebody higher up and they insured me a week later. A week after that I received my driving licence back, so it's all OK now.

in reply toAndyEssex

Coolio Andy 👍

Caspiana profile image
Caspiana

Hello GrandmaDylan . 😊

Of course it is a worry when we forget things. The real worry is leaving things like a pot on the fire and maybe as a consequence hurting ourselves. I cared for a relative who had Frontotemporal dementia. Eventually, she had an electric cooking stove installed instead of gas, it was just so much safer.

It took weeks of tests to reach a firm diagnosis and although you are right to bring it up with your doctor, please don't think the worst yet. There can be many factors that cause memory loss and normal age-related memory loss doesn't prevent you from living a full, productive life, just a few adjustments maybe.

Please do take care of yourself, especially with the cooking stove.

Thinking of you,

Cas xx 🌞🌻

GrandmaDylan profile image
GrandmaDylan in reply toCaspiana

Hi Cas, my father in law had vascular dementia and the five years we looked after him were horrendous. We had to take his cooker out completely as he was constantly turning it on and forgetting. I think I'm just worried about going bonkers 😵

Caspiana profile image
Caspiana in reply toGrandmaDylan

A legitimate worry to be sure. But nowadays there is help and support out there. And anyway it may not be what you think. *HUG* xx 🍀

Hi

I know what you mean but it could just so easily have been one of those things. I get it too but I'm not seeing my consultant until February, the way I've been feeling of late I think I will be getting in touch with his secretary!! Love and hugs Lynne xxxx

in reply to

Hi Lynne.

Poor you ☹️.

Whatever you do though don’t take his secretary’s advice though 😁😁

Miles

Hmm my memory seemed to get worse after the transplant, the morphine seemed to make it worse.

I forget words all the time and find things I have just put down instead of putting them were I had planned.

But I recently started a new volunteer position and I seem to be remember all the new stuff no problem, perhaps being ill and retired (in my case) your mind just gets a bit lazy, as I take life lot slower.

Either way you are not alone!

David

davianne profile image
davianne

Hi Grandma D, before I was diagnosed with cirrhosis,I just put my forgetfulness down to "senior moments", but now I think it might be mild HE. It does get embarrassing when talking to people, and you just can't find the word you are looking for. Mind you, my lovely wife is not much better than me, and she's not got cirrhosis 🤣

David

carefull1 profile image
carefull1

Hi, it happens to me aswell. I sometimes call someone and while holding for answer I forget who I was supposed to be calling. It's quite embarrassing.

Grank profile image
Grank

My wife went from research scientist to forgetting her own address after her cancer diagnosis and subsequent chemotherapy. It hasn’t got much better one year on, but isn’t getting worse.

She blames a combination of shock and chemicals and finds ways to live with it.

Similarly I have terrible forgetful episodes and I’m blaming liver cancer.

Our GP said ‘old age’ but we feel they blame that on everything.

Apparently you can go to a memory clinic if you get really worried.

Radnor profile image
Radnor

As others have said, it could be brain overload. When I was working I had it I was fit and healthy back then. I had too much milk so decided to take a bottle in to work. I got in the car and set off. I had to do a right turn first.Drove a further 200yards. I went on suddenly heard a smashing noise. I stopped and got out and I said 'bastard' someone has thrown a bottle at my car! I then set off laughing I saw it was a bottle of milk!!! I realised putting it on the car roof wasnt the best way to transport it! You like me need a secretary now to sort the immense no medical of appointments. You have had the added battle of PIP too. Hot weather makes most people less 'with it' too. Wory is the interest we pay on something that hasn't happened or been diagnosed. Fatigue also causes brain fogs. Hazel x

in reply toRadnor

Lol Hazel!

In the nicest possible way of course 😁.

Miles

GrandmaDylan profile image
GrandmaDylan in reply toRadnor

Oh Hazel I can just see you jumping out of the car thinking someone had thrown a bottle at your car. 😂 I must admit the reconsideration from PIP is never far from my mind, it's just sat at at the back wondering what they're going to say. It's been three weeks since I asked for a reconsideration and they said it should be about six weeks. I almost rang them today but managed to stop myself. I now have my meds in a dosset box and it's made it much easier for me as I can see when I've forgotten to take them.

How are you feeling now? Are you managing to eat? Debx

Radnor profile image
Radnor in reply toGrandmaDylan

I am eating well too well as I have gained weight again but I am geting muscle tone back so not as weak as kitten now. I will be going back on my strict diet again I don't feel fatter my clothes are still too big. My ARFL scan was cancelled yesterday only 2 radiologists are qualified and one has gone off sick Told them it has to be done for 22nd May. At least I should get a pm appointment Would have been so busy this am. I think you will feel calmer when you get PIP sorted. Give em hell! Hazelx

in reply toRadnor

Hi Hazel

For some unknown reason - actually someone liked one of my posts and I couldn’t resist seeing what I had written! No rude comments please! 😁. Anyway, I saw this post again and I couldn’t help but grin all over again! The image it brings to mind really makes me laugh. It was nice of you to share it 😁👍.

Miles

Wass71 profile image
Wass71

Hi, I think we all tend to assume any changes are to do with our liver problems. Sometimes they are, but occasionally it's just coincidence. I think phoenix is right, if you've got lots of stress in your life this can be a cause for memory problems.

When I was pregnant I once went to buy some socks in m and s, when I got to the till I realised I didn't have my purse. I frustratedly went to put the socks back where I found them, to discover my purse dangling from the sock hook!!

So that was not age, or liver, but most likely stress and tiredness.

Always worth mentioning to Dr, they can check your ammonia levels. However let's hope it's just a temporary blip.

Take care,

X

in reply toWass71

Love that story wass, it can’t help but make you smile. 😁. Seems like all of us have our moments, I nearly said senior moments, but I don’t like that expression - despite my age! 😁.

Miles

moonbeam4 profile image
moonbeam4

Just an aside if anyone is interested, there has been quite alot of research being done between the benefits of probiotics and good gut health on memory function . The results seem very promising from dimentia and altzimers sufferers to people with H.E. In the clinical trials with H.E patients who were given the probiotic VSL , a 45% reduction in symptoms has been reported. After reading about the trials online I began using VSL but found it too expensive to keep up so switched to another probiotic, i,ve since discovered that any good probiotic works just as well. I have certainly felt a big difference in my digestion which has been playing me up for years after my cirhosis diagnosis. As for my memory , I haven,t noticed any signs of decline yet and i hope the probiotics will keep any confusion problems ( allowing for the normal aging decline of course ) at bay for the considerable future!. My consultant was intrigued by the studies ( i would have thought they would be upto to date with all research lol. 😲 ) and is going to research themselves. Anyway guys, just thought I,d mention it if anyones interested. I don,t think probiotics can hurt, I now make my own keifer after researching online about good, natural, cost effective probiotics , it,s also a great source of vitamins particularly liver loving B. As always, check with your Doctors before adding things to your diet even if they are natural. goodluck GrandmaDylan, as the others have said no need to worry yet over something that happens to us all and is probably quite normal..I once reported my car stolen from outside Tescos, the Police arrived, took my statement, took me home. And...there sat my car in my driveway!. I was on a keep fit gig at the time and totally forgot that i had decided to get extra exercise in by walking to the shop😂😃😀 Oops!.

in reply tomoonbeam4

Cracking story moon 👍. You can’t help but smile at that 😁.

Miles

in reply tomoonbeam4

Hi moonbeam4,

I was wondering what probiotic you are now taking?

My hubby has cirrhosis, but I recently had issues and a doctor recommended vsl #3, which I also find very expensive. He recommended it to help issues after radiation.

Wishing you the best,

Mary

in reply to

Hi Mary

I was rereading this thread (don’t ask!😁) when I saw this post of yours and am intrigued by “radiation”. Why radiation? Not related to the cirrhosis is it?

Miles

in reply to

Hi Miles,

We are visiting friends in AZ so on a road trip so sorry I am late in replying.

Hubby is the one with cirrhosis - I recently had to have a hysterectomy which was followed by radiation. Getting those important things working again is not as easy as I thought it should be LOL.

It appears I have missed some goings on on here too.

All the best,

Mary

in reply to

Hi Mary

Thanks for the reply. Torrid time for you 😕 but hopefully you are enjoying yourselves in NZ 👍. It is where I have always wanted to go but now will only go of if we can afford someday to go by boat . You never know, maybe 🤞😀.

You are very lucky to have missed the forum recently. There are, and continue to be, one or two really not pleasant people on here spoiling this wonderful forum. I think Admin are on it though thank goodness 👍.

Hope you have a really lovely time 😀👍 and both feel a bit better.

Miles

jazzjam profile image
jazzjam

I think reading your posts you have had so much going on that it is bound to give you some brain overload. Take it easy on yourself.

It is scary though thinking is this it? Will it get better? This last month I have been the same. The day of my last post, I had been worrying as I noticed changes over some weeks and that day I had driven into town, parked up with no clue what I had gone there for, I tried hard not to cry, I got out walked about to see if anything would spring to mind, no, I came straight home and saw it on my list ‘pick parcel from post office’. I was chatting with my husband, just general, I kept forgetting words and what I had started to tell him. Now I am well known for going round the houses when I talk about something (Mum was the same, I got it from her 😁) so I can sometimes forget but this was different somehow.

So I took my list, all advice from here and husband and went to my appointment, I didn’t mention my memory because I forgot !! but my consultant picked it up, i thought it was odd that he was asking me what medication I was on and I was struggling to get the words out, they were on the tip of my tongue as we say. So he has taken my normal bloods and some different ones and upped my medication until the results come back. Today is not too bad so it’s a positive for today.

I hope the best for you and it was just having so much on your mind that it was your brain telling you to slow down and look after yourself.

GrandmaDylan profile image
GrandmaDylan in reply tojazzjam

I think (hope) that you're right and I'm just overloaded with worry. My own health plus my mother is quite demanding. She was widowed at age 48 and although their marriage was okay my father is now held up as being the love of her life. The marriage she has with her 3rd husband (we're not allowed to mention husband number two) was definitely a marriage of convenience and she certainly doesn't love him. She is angry that he has been diagnosed with Dementia and keeps saying it's not fair that she has this to cope with at her age. I'm always made to feel that I should see her more. For instance I did Easter Sunday and had all the family round except my son and his girlfriend as they were away for the weekend. She had to go and lie down because she was having palpitations and said it was because she had two glasses of wine and did I have the same? I told her no as I can't drink. My son rang me on Easter Monday and asked us, his siblings and partners and children to go round for a barbecue. Stupidly I told her where we'd been when she rang me (as she dies several times a day) and she was furious that she hadn't been invited. I have to lie about where I've been or she'll be angry that we didn't take her with us. She has never learnt to drive, her husband can't drive any more and my sister doesn't have a car so I'm the one who has to pick my sister up then pick mum up and drive to wherever we're going and do the same when I take them home. I'm then shattered and in pain for two days.

I'm so, so sorry for the long rambling rant. 😩

I hope your bloods come back OK. Deb

jazzjam profile image
jazzjam in reply toGrandmaDylan

Oh gosh, my Mum used to have this with my Grandma, yet she was never actually seriously ill and not really any form of even a general accepted old age problem, certainly no dementia, she died at 96. To her dying day she was looking for an illness but apparently she had been like that all her life. She physically but mainly mentally drained my Mum. Mum always said she wished she had told little lies etc.. as you mentioned just to give herself a break.

Try and squeeze some time for you 🌻

in reply toGrandmaDylan

Oh my Debs as if you haven’t got enough of your own to worry about. I really feel for you....

Miles

in reply tojazzjam

Hi jazz Good bit of observation by your Consultant. 👍👍

Miles

jazzjam profile image
jazzjam in reply to

Yes I am lucky with this consultant, I’ve seen him a fair bit over the last year and a bit and you don’t feel like a number with him.

Allystar profile image
Allystar

Im exactly the same. My daughter tells me something and 5 mins i dont remember. Ive missed appointments i go to the shop for something and forget what it is. So im constantly writing notes. Im driving my 2 daughter's mad by repeating something ive already been told. I haven't said to my gp because im afraid what he will tell me. Ive always blamed my fibromyalgia but i know in my heart its worse than it should be. It isnt related to my liver disease is it?

jazzjam profile image
jazzjam in reply toAllystar

I know you don’t want to bring it up but it will only prey on your mind and you will feel worse. I’d check with your doctor as there are so many things that could be causing it, he could do tests and just say, you are run ragged.

Oh, I have a notepad or paper and pen in every room in the house, in every bag, car, pocket, drawer. I think most people are similar in general as lives are so busy.

Allystar profile image
Allystar in reply tojazzjam

Thank you. I know i need to tell my gp. But im nearly afraid it will be something sinister. Silly i know 🤗

in reply tojazzjam

Hi jazz

I have to put all my notes (things I need to remember for appointments etc in my calendar on my iPad! Even then I sometimes forget to look at what I should have remembered! Oh my. Old age and HE (ex HE effects now) definitely rule me!

Miles

GrandmaDylan profile image
GrandmaDylan in reply toAllystar

Hi allystar. I have had fibromyalgia for about 15 years and put everything down to it but my agonising shoulder pain I've endured for years thinking it's fibromyalgia is actually down to impingement. Doctors also blame fibro for everything too.

Allystar profile image
Allystar in reply toGrandmaDylan

Oh thats awful for you. What is that?Impingement. I have frozen shoulders. Yes everything is put down to fibromyalgia though my gp isnt too bad. I lost my eldest son to suicide 13 half years ago and i wonder if that made my depression worse. I had ect 30 years ago following a nervous breakdown. I was in a terrible marriage and suffered mental and physical violence. I wonder is this part of it?

Hi GrandmaDylan,

Would it help if I told you that I have burned many a teakettle dry - one so badly it stuck to the burner - and that was at least 30 years ago when I was in my 30's? Oh, and it was a whistling teakettle, too.

I worry about my husband's memory and am always on the look out for HE symptoms. His cirrhosis is alcohol related and he is now 70, so things I worry about my not be HE, but our age or related to previous issues. He does take lactulose 3x a day, but getting him to eat enough to keep things working can be a bear.

Wishing you the best,

Mary

in reply to

Hi Mary

Lactulose stopped working completely for me after many months of just keeping upping the dose. In the end the only way I could get things to work (as you so nicely put it) was to use the prescribed self administered enemas I was given. Hmm not the desired route...I would check with the doctors though to see if you can up his dose, it is surprising how much you can take - obviously only up to the amount prescribed!

Good luck to you both. As I have said before I often think the metal effects on the carer outweigh those of the ill person..

Miles

GrandmaDylan profile image
GrandmaDylan

Thank you all for your encouraging replies... You're all my friends and mean a lot to me 💓

I often froegt how to sepll - no only joking , but seriously i do have memory lose at times and it seems to be the odd occasion i have have a little drink or eat rubbish food , then the next day i forget what film i have watched or where i have put something or what i need to get done.

i am 43 years young and fear i will be a burden on my family when i get older.

Healthy life style from now on me thinks.............

in reply tocantfind1username

Hi cantfind 😁

Welcome to the forum (don’t think I have seen you before?)

Definitely go for a healthy lifestyle nothing to lose and everything to gain! How I wish I had followed that route when I was just a lad like you are 👍.

It will hopefully save you a lot of hassle in later life. Alcohol and me got on too well. Naughty alcohol 😁.

Miles

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