Coping with memory loss

[BillieJay]

Hi all,
This is my first thread and I feel a real wimp asking for help when you're all going through so much. But this is what's happening....
About two years ago my Mum started repeating herself, and it gradually got worse. If we went to visit, she'd ask 6 times in the first 10 minutes whether we'd had a good journey and what was the traffic like, that sort of thing. We all tried to answer the question each time as though it was the first, thought it was testing our acting skills by the sixth time of asking!
Over the last 6 months the question/observation repetition has abated, but now she has moved on to quite categorical statements of the "we never/we always/ it's years since" type, which are often wrong. For example "We haven't been in this restaurant for years" when it was actually a couple of months (and a couple of months before that as well).
She's been to the doctor's, she has thyroid and parathyroid problems but they're under control and an MRI scan has shown that the nerve endings in the brain are dead, so the diagnosis is Mild Cognitive Impairment. It doesn't feel very mild, but reading other people's stories I know it is. I needed to get it off my chest - my parents have been staying with us for 10 days and have gone back saying what a lovely holiday they've had (in sunny Lancashire ) but it's made me accept what I hadn't before, that it isn't temporary and my Mum as I've known her all my life won't be coming back. That's how I discovered this site and forum, when I decided to do some research on the web this morning.

I feel I'm being very wet in even posting, but there isn't a site or forum for Mild Cognitive Impairment, and I do have a question. What's the best way to respond to Mum when she makes one of her (wrong) statements? I tended to correct her, but I've realised my motives were pretty selfish. I hoped that if I explained enough she'd suddenly slap her forehead, say 'oh of course, silly me' and everything would be alright again. It ain't gonna happen....But although sometimes you can ignore it, others it's difficult to carry on the conversation if she's made one of her statements. For instance we were discussing soft furnishings (!) but she was adamant that their currrent suite is actually the one about three suites back and a different colour, so to have carried on would have been to humour her and all pretend. Nobody wants to make her feel small, and I know (Dad's told me) that sometimes she cries at night, saying she wouldn't mind what else gave up but please not her brain.

Sorry, I know it's trivial, but I'm crying as I'm typing this - does anyone have any words of wisdom?

BJx

 

[jenniferpa]

I hoped that if I explained enough she'd suddenly slap her forehead, say 'oh of course, silly me' and everything would be alright again.

BJx

Oh BillieJay, I know it's not funny, but that's so exactly how I reacted/still react sometimes, that it made me smile. Mild Cognitive impairment is about as much of a diagnosis as I have got from my Mother's doctors (she had 3 strokes, 2 major). I know exactly what you mean - mild is NOT the word I would use to describe it.

Honestly, my approach varies as much by how I feel and how she seems as any defined system. Sometimes I let it go, sometimes I correct her, and neither way seems to work better. In the latter case, she's already forgotten that I've corrected her within 60 seconds, so it neither changes the behaviour, nor causes much upset. On occasion, taking the former approach, I've got a tart "don't humour me", so you're damned if you do, damned if you don't.

So, no words of wisdom, just a lot of sympathy.

Jennifer

 

[Gromit]

Hi BJ,

Well done you for starting your first thread!!! Thanks for the PM earlier.

This is a great place to let off steam, shed those tears, share a giggle, enjoy a huge belly laugh and receive kindness and wisdom.

I cried a bit when I typed my first post - I think its almost a reflex from the relief to be telling others and also to be acknowledging these things to ourselves. You will feel much better when the replies flood in!!!

My Dad can get a bit argumentative (did I say a bit!!!) if we correct him. For example, place an order for something to be delivered - hasn't turned up yet so he will chase for it. Then half an hour later will want to chase again - because he doesn't believe us that he phoned them already. Then he will want to do it again - so we have to correct him quite sternly at that point. Know what he did........snuck outside with his mobile phone because he didn't believe us and phoned them again!!!! Of course, he doesn't remember it but we were trying to save him any embarassment.

Its a struggle knowing what to do - I think your own internal instincts will be your best guide. I would try do whatever keeps you as calm as possible - that way you are also taking care of yourself and your Mum. But if you do snap occasionally (and we all do) don't beat yourself up - its all forgotten and forgiven before you know it!

Look forward to hearing from you again soon. Welcome to the gang!!!
X

 

[Amy]

Hiya Billie Jay and welcome to TP. You don't sound wimpish at all. 10 days of being around mum has made you realised that you have lost part of her, and you are ggrieving for her. That is OK. You need to accept the new situation, and then get on with living with it.
I think often there is no point in correcting mum when she makes a mistake - it may just make her more aware of what is happening, and upset her. It must be so scarey for her (and you), knowing that there is something going on in her brain, but not knowing what the future holds. Goodness, I remember crying with my mum the night before I got her to go to the GP, and her reassuring me that it would be OK. The thing is at that point, we both knew that we would face it together.
So BJ. It is not trivial. The tears are OK - and whether the cognitive impairment is mild or serious, TP is the place for you. You are not on your own, and people reading your post know something of your grief and your pain and your fears.
Love Helen

 

[Grannie G]

Hi BillieJay

I hope you get as much reassurance from TP as I do.

Although my Husband has AD, his cognitive impairment, whether it be mild or severe, causes similar syptoms to your Mother.

He asks questions repeatedly, the same question over and over again. I try to answer them as if it were the first time he asked. If ever I become impatient or a bit snappy, I can see that he honestly doesn`t understand why I reacted in that way and I know I hurt him.

He makes the most ridiculous statements, giving me the benefit of all his worldly wisdom, and I agree with him, because you can bet your bottom dollar he`ll have forgotten what he said within 5 minutes.

He has just started doing some `Keep fit` exercises with me. I am trying this to relieve his boredom. We have been doing them together for a week and every day, he acts as if it were the first. He is so surprised when I say it`s exercise time, he doesn`t know what I`m talking about. When we`ve completed the exercises, it`s as if he`s discovered a new pastime.

If anyone has any suggestions to relieve boredom, I`d love to hear them. This is such a difficult stage. He is unable to generate anything to occupy himself and relies on me constantly to provide stimulation. He gets bored with TV, `reads` the Paper but only really turns the pages. He listens to the Radio as backgroud, but I don`t think he really hears it unless some beautiful music is played. He doesn`t like to Garden [he never has] and has never had hobbies or been keen on DIY.

The only household task he can still do is vaccing, but even then, he just vacs round the furniture. He used to do all the shopping and all the cooking but those skills have gone.

The saddest part is when we go out for a walk and he tells me how lucky we both are to be in such good health. He has plans for the next 10 years and tells me about them, all day and every day.

Sorry Billiejay to have gone on a bit, but you can see, for all of us, there certainly is cause for tears. We cannot fail to be affected by so much suffering.

Take Care, and let your Mother have her bit of Glory. Grannie G

 

[Lynne]

Hi BillieJay

to have carried on would have been to humour her and all pretend

I've just recently been through the stage you seem to be at now, and it's awful, so don't feel badly about having a moan and letting off steam. Somehow it seems so wrong to agree with Mum when she says something totally false, but it also goes against all the upbringing & years of respect to contradict her.

As with most things, the best we can do is a compromise, somewhere in the middle. If it matters, query her statement gently & tactfully (especially if in front of other people), maybe offering an alternative suggestion in a way which allows her to change her story easily. If it doesn't matter, just let it go. She will probably forget what she said within minutes anyway, so why invite dissent over something trivial? Especially as it seems she does realise inside what is happening to her, even if she doesn't want to admit it or discuss it openly.

And yes, it's heartbreaking to realise that the Mum who could once tackle anything has now disappeared, leaving a sad little ghost of her former self, trying so hard to maintain the facade of who she was against all the odds. I've cried buckets over the last couple of years, and probably more water-butts to come yet.

 

[DickG]

Hi Billiejay

Not much wisdom I am afraid but you can be assured that we all understand much of what you feel. I have learnt to accept the situation as I cannot change it and that acceptance gives me a small measure of comfort. It still hurts none-the-less. What ever name is given to the condition the effect on the carer is the same, so perhaps we should rename all these conditions careritis.

Keep posting, cry, laugh, swear or joke do what ever makes you feel better - we are all listening.

Hugs

Dick

 

[Norman]

Hi Billiejay
Another welcome to TP.
I think this fact sheet may help you also
Best Wishes
Norman

http://www.alzheimers.org.uk/Caring...ning_quality_of_life/advice_communication.htm

 

[Tender Face]

Hi BillieJay

Just wanted to say welcome and please don't dismiss anything you feel as trivial. I'm learning that often it's the 'little things' which hit home the hardest.....

Love, Karen, x

 

[alfjess]

Hi
What's the best way to respond to Mum when she makes one of her (wrong) statements?
I have found through caring for my Mum, who makes wrong statements 10 times a day, that if, it is not harming anyone, go with it. It is so much easier than trying to correct her, which is a waste of time anyway. 2mins later we will be back on the same merry go round, because she has forgotten the previous conversation and I have found to my cost that I get stressed and so does she, trying to explain things correctly and in the end it doesn't matter anyway.
Then again your Mum has Mild cognitive impairment, where as mine has AD/Dementia. Maybe there is a difference, I don't know.
Welcome to TP. I hope you find the help and support here, that I have
Alfjess

 

[alfjess]

Hi
Sorry I forgot to say in my last post that your are not wet nor a wimp or indeed trivial. I would say you are in the best place to learn from others. Well done you for being concerned enough to find TP.
Aljess

 

[Sandy]

Hi BillieJay,

First of all, welcome to TP and nothing about your post was in any way trivial.

Alzheimer's has been described as "The long goodbye" and your reactions (and also your mother's) reflect some of the grief that accompanies that process of change.

If you are able to listen to the radio over the internet, you might find this Radio 4 programme on a couple coping with the husband's MCI worth listening to: http://www.bbc.co.uk/radio4/memory/programmes/me_and_my_memory5.shtml

What was really moving about this radio programme was the openess between the husband and wife when it came to discussing his MCI. I think it could feel terribly isolating to have MCI with all the awareness of the changes in one's own abilities.

Since the visit to the memory clinic, have you been able to discuss things with your mother and father?

Take care,

Sandy

 

[BillieJay]

Thank you

Thank you all for your support. I read the messages last night, but as each post came in it hit a different bit of the nail so exactly on the head that I was in no fit state to reply. As you'll have gathered, yesterday was the day it hit me like an oncoming train.

As Amy says, I have to make sure this is a positive experience in the long run, that I now move forward instead of looking back. And jenniferpa, I don't mind in the least that it made you smile. One thing I'd already learned from reading the board is that it's best to laugh rather than cry if you possibly can.

Sandy we've 'discussed' it in as much as it isn't being swept under the carpet. However my parents are both Yorkshire stubborn (as I said to Gromit in a pm, what DO they put in the water there??) and open communication and shows of affection have never been our strong point. You're just expected to know that everybody thinks the world of everybody else. Our family's idea of a gooey Christmas card (to each other, let alone the neighbours) is one pre-printed with the words 'Happy Christmas'. A very gooey card is printed 'A Very Merry Christmas and a Happy New Year'. As well as reading the leaflets posters have highlighted, I also read the one on memory loss, with their emphasis on non verbal communication and touch. I feel a very steep learning curve looming....

Thank you all again so much. I hope I get myself together soon to help somebody else at least a bit as much as you've helped me.

BJx

 

[Canadian Joanne]

BillieJay,
It will come to you in time. You will be able to help people, don't you worry.

The beginning was the hardest for me, getting over the shock of it all, learning to adjust. I have my bad days still but I've learned to live with what I cannot change. My mother is in late stage AD, diagnosed at the age of (just turned) 64. I think I cried for 3 months straight. I'm amazed I didn't dehydrate with all my tears.

But time is a great healer - time and acceptance. You'll get there. In the meantime, do all those little things with your mum that you've always meant to but haven't got around to. You will be glad you did later on.

Joanne

 

[Tender Face]

I hope I get myself together soon to help somebody else at least a bit as much as you've helped me.

BJx

BJ, you did it already for me!!! Loved the stuff about the gooey cards!!!! I've personally given up 'getting myself together' ... in fact think I have already metamorphosed into a zillion piece jigsaw .... maybe someone could take a patent out?????

Well done!!! Thank you! Look forward to hearing more from you.....

Love, Karen, x

 

[Gromit]

Yorkshire

Hi BJ,
Hope all the replies have lifted your spirits. I just had to comment on the "Yorkshire" theme we seem to have........ it is sooooo true!!! Do you get the awkward bit when you say goodbye after a visit - should you hug or kiss on the cheek or slap on the back?........ its always really awkward and to outsiders we must look like we've only just met - shows of emotion are very clumsy and for some reason just not done in Yorkshire - weird huh! I do make a point of hugging my Mum and Dad when I am leaving now though - making the most of it. Still has a strange feel to it though - almost as though we are embarassed! Your Christmas Card comment is bang on! For birthday cards we always go for humour cards nothing goooey!

Back to the STM thing though you may be able to relate to this - I've just had a long conversation with Dad on the phone (don't get many long conversations on the phone usually fobs me off onto Mum) but Mum is having a nap so he had to speak to me. Once he got going we had a good old chat - however he was very repeatative, kept telling me about a lunchbox they have bought their grandaughter - I responded each time as though it was the first time and it went extremely well. I also answered the same questions about what I am doing this weekend - that worked well too - I kept the same enthusiasm in my voice and it was great as it meant I spoke to my Dad for a long time and we were able to laugh and joke together at length - granted it was punctuated with repeatative questions but they were worth it as we also managed to talk about other things too.

He told me all about the doctor visiting - can you believe he even said there was no need for her to call at the house even though it was very nice of her - he would have happily gone to the doctors (what??? We've only been trying to pursuade him to go for months - must have forgotten eh? Ahem). Anyway he's really upbeat about the whole thing - knows he's going for tests - but doesn't really know why - but happy to be going and getting the attention!!! Can't believe this turn around!

Only problem is - it all now seems very real to me and Mum - and have to admit I had a blubbing session this morning - probably just starting to sink in.

So BJ - by posting on here you are hleping me already - I really enjoyed hearing about the gooey cards and its good to share our experiences - both about Yorkshire and STM!!!!

Sorry I seem to have gone on a bit and written a novel - but I'm having one of those days where I feel like I need to talk about it if you know what I mean (blubbing prevention technique perhaps???)

All the best.
G
XXXXXXXX

 

[BillieJay]

..should you hug or kiss on the cheek or slap on the back../QUOTE]

No......no.....and, erm,....no. You say hello, wave goodbye, and if you want to show that you love somebody, plumb in a washing machine for them or put up a cupboard or something We sound sooo cold hearted, but we're not, honest. There's buckets of love in the family, but that's where it stays - in the bucket. I hope I do get to show her by a hug or a kiss just how much I love her while she still knows who I am, but with luck that's some way off.

Gromit, we're living in a parallel universe. Can I relate to your phone conversation story? You bet!! Mum never answers the phone unless she has no choice, and passes it to Dad as though it was a grenade with the pin out. I have to say to Dad "I'll have a word with Mum", having pre-prepared a list of things I can initiate conversations about. Well worth it, to talk to her and also because she's isolating herself. Her choice, because she knows she repeats and forgets and doesn't want to 'show herself up', but it's only me.

And can I relate to your Dad and his reaction to the doctor??? While they were here, she bought a throw to put across the back of the sofa.
Mum "I think I've boobed with the throw, it was £18 and it's dry clean only, and that's quite a lot of money"
Me "Well, you'll get at least six months out of it, and £18 isn't peanuts but it's not a fortune either"
Mum "Oh I'm not worried about the money"


I hope you get some answers about your Dad soon, not knowing is worse, but there's definitely something cathartic about this forum. I've managed an essay as well.

Karen, thank you for your reply too. I hope the zillions of pieces have come together a bit, and you can have a good weekend. In fact I hope everyone has a good weekend.

Love
BJx

 

[Lila13]

My mother and I weren't on huggy-kissy terms, but when she was ill I used to rub her hair, face, hands, back and feet with a variety of lotions and potions, and she liked that, and when she was going into a strop I stroked her hair and patted her hands. I patted her hands when she said "bye bye Mummy" the last time in the hospital.

 

[Lonestray]

Traveling back in time

Hi BillyJay, after 11 years of caring for my wife I learned that Alzheimer's was like a box of tissues: first in last out. In other words my wife could only relate to the past, like her being late for school. Can it therefore be surprising if they reach the stage of "Are we there yet, are we there yet?" Like the antics of a child there's little point in losing your cool. It's less stressful, very rewarding and can be fun being patience. I also found each small changes are signposts to future steps down the Alzheimer's road. Presently she can't speak and can only move one hand. That hand sometimes is limp, other times a firm hold. There are times I can't get her attention, but I treasure the time while I can. I'm very lucky to be able to care for my wife on my own in so many ways like no generation gap. It must be tough for younger carers. She and I hope to have our birthdays of 72 & 75 on the 7 & 8 Oct and our 51st wedding ann. the 24th Sep. I wish you well in your endevours. Padraig

 

[DickG]

I lived in Yorkshire for three years and my bosses genuinely affectionate greeting was "Ay oop yer daft sod" any other greeting and you were out of favour.

Dick