I witnessed a change in my partners memory today

[polly148]

My partner has been diagnosed with early onset Alzheimer's in Oct 15. Like many others his memory is bad he's slower than usual, looses stuff, repeats himself and his stories get muddled. Im coping ok with it all so far and generally just agree with what ever he says. But earlier I was making him a sausage roll and offered jim some coleslaw on the side, his response took me back in fact shocked me to a point where I thought ... my lovely man is getting worse slowly but surely.
I said "do you fancy some coleslaw on the side" his reply was "I don't no what that would taste like I've never had it before" I was all took back but I replied " sure why don't you try it and it and if you don't like it just leave it" but of course he ate the lot as he loves coleslaw. I feel quite saddened by this small event I've also noticed he's making this constant noise with his mouth as if he's eating but he has nothing in his mouth, something similar to a cow doin that thing were the chew but not actually be eating grass ( sorry if that sounds daft ) it's so annoying the constant noises, I give him chewing gum when were in the car to distract him... is it just a habit he's developed he's never done it before....
Feeling deflated

 

[Soobee]

Hello,

it is always sad when you see a downturn like the one you describe with your partner's memory, but I hope that he remains stable for a while now.

I think the mouth noises are quite common, but don't know much about them. You sound like you're very understanding with your partner.

 

[LynneMcV]

Hi Polly, it's always a bit of a shock when these changes become obvious and no matter how much we think we are prepared for it, they still take us by surprise.

I have to say that I think you handled the coleslaw situation excellently by carrying on in such a matter-of-fact way rather than contradicting your husband's belief that he'd never had it before

With the noises, I had something similar going on with my husband earlier this year. He suddenly started making clicking noises with his tongue day and night. It was a bit like when a baby/ small child learns to make a particular noise for the first time - and then carries on doing so for no other reason than 'because they can'.

My approach was to ignore the noises and not give any indication that they were annoying or I wanted them to stop. Within a couple of weeks they stopped. I have read other accounts on Talking Point where a PWD has suddenly started making repetitive noises, and as far as I can remember, they all turned out to be just phases.

That's the thing with this disease, things come and then go as if they'd never been there. Not just the noises, but even something like forgetting what coleslaw is - I wouldn't be at all surprised if next time you have coleslaw your husband will be well aware that its been a favourite of his for years.

 

[Zana]

I understand the thing with food too. My husband has FTD but his tastes in food are quite changable.

For years he has vermently said he hates hummus then while away he had some in a resturant now he says he loves it!

Other things he had loved he now turns his nose up at and then there are the things he swears he has never had which I know he has but I also try the ' well see if you like it dear..' approach because I know if I argue with him that he does know what something is or that he does like it he will just dig his heels in.

I dont know about outh noises my OH is just generally more noisy as I mentioned elsewhere.

 

[polly148]

Thank you so much for your replys ladies, I've learned so much from this site, I don't post a lot but when I do I get the answers im wanting.
This has been the first time I've really noticed something that I definitely knew I couldn't make a mistake about. I've often received comments from family members saying contradicting things I've seen as changes, im often told " but he's always been slow, always lost stuff, always reversed badly" and at times left me thinking maybe I was making a mountain out of a mole hill! But now I know he loved coleslaw but today forgot he genuinely forgot he liked it. I believe other people outside our bubble cant see what i see, dont feel what i feel, and when i say Bill has started this habit of making noises its been bruahed off with some other random excuse from some one. Has any one else experienced this?
I didn't that the mouth noises were actually apart of the disease as in odd things they do, he dose indeed make clicking noises like some one said above, just like he has his tounge stuck to the upper part of his mouth... im gradually learning not to comment on it now I know it could well be related to the illness, im quite patient with him atm and deflect many things throught out the day, i feel if he hasnt my full attention he looks terribly lost, and i find it hard leaving him.

Thanks everyone ... so glad im here

 

[margherita]

I've often received comments from family members saying contradicting things I've seen as changes, im often told " but he's always been slow, always lost stuff, always reversed badly" and at times left me thinking maybe I was making a mountain out of a mole hill! But now I know he loved coleslaw but today forgot he genuinely forgot he liked it. I believe other people outside our bubble cant see what i see, dont feel what i feel, and when i say Bill has started this habit of making noises its been bruahed off with some other random excuse from some one. Has any one else experienced this?

Yes,I have.
I think people try to decrease the relevance of what I say I have seen in my husband's behaviour because either they want me not to worry too much or they are themselves unable to cope with the illness or they think they are consoling me.

My husband often forgets he has already tasted and liked some food.
It also happens that he likes a dish he had disliked the previous day.
Another thing I've noticed is that he forgets what some flowers or plants look like.
Not uncommon ones, but those he has been growing in our garden for years

 

[polly148]

Yes,I have.
I think people try to decrease the relevance of what I say I have seen in my husband's behaviour because either they want me not to worry too much or they are themselves unable to cope with the illness or they think they are consoling me.

My husband often forgets he has already tasted and liked some food.
It also happens that he likes a dish he had disliked the previous day.
Another thing I've noticed is that he forgets what some flowers or plants look like.
Not uncommon ones, but those he has been growing in our garden for years

I certainly agree with with you. My Bill would say different names for different plants on occasions, I now don't correct him, another thing he's doing is feeding the birds again, I've told him repeatedly to not feed them as it's encouraged mice over the winter and spring, we also saw a big fat rat in the front garden. Last week I caught him with bread throwing it along the bushes and hedge row, he said he was feeding the robins and their chicks. But instead we had a big rat which we watched from our kitchen window. He was quite amused saying "look at that big fellow, he's a big one" I replied only because he's probably ate all the robins you encourage out of the hedge row ... we live just on the edge of the country with lots of farms about so I do expect rats but not out side my back door. (Sorry I got into a ramble there lol)

My Bills memory is definitely changing I can see it on wee things, will it just decline slowly like this

Thanks everyone

 

[Roseleigh]

I call these moments such as your coleslaw incidents 'bombshell moments', those incidents when suddenly the illness is really staring you in the face and showing you it's there.

 

[Ballykeith]

I know where you're coming from

Through my experience of my mum's dementia I liken it to seeing a mysterious spot of water on the floor. At first you brush it aside as an aberration and almost think of it as amusing. Soon however more spots appear and it becomes a bother to work around them. In time more and more water appears and daily life becomes ever more trying. Before your know it you are up to your knees in water and dementia has taken over normal life altogether.

In saying this I am putting it across as it is and doing the exact opposite of all those people who deliberately avoid the harsh reality - and this included my own mother until the point at which she was almost beyond recognising that she had - finally - been given a dementia diagnosis.

I fear for myself now at 51. I don't know if my own mental confusion is early onset or a consequence of years of stress and poor sleep but that is something I'll just have to deal with myself as there would be no one to care for me and I wouldn't want anyone to give up their life for me anyway.

The point of my post is to advise you to decide now about what you wish to do about your husband's diagnosis. How far will you continue to be his principle carer? Would he want you to become his carer once his condition deteriorates? Would you want to do this?

My mum has now moved into a care home after years of our joint struggle with this disease. It's not perfect, but all in all I know that both she and I are faring better with this arrangement after all the tribulations of escalating care at home which eventually became more trouble than it was worth.

Have a good conversation with your husband while he is still able to, then make a plan about the future. It might be a good idea to write it down for future reference. That's my advice anyway and whatever you do, I wish you both the very best.

 

[Tarloo]

Me too

My partner and I went out for lunch with friends to a restaurant nearby. Presented with the menus he chose roast beef until one friend reminded him he'd regretted last time so he chose fish and chips which he said he loved then when the order was taken he re chose roast beef. He often can't make a decision so plumps for what I've chosen, starter and pud and drink too. He can't find things he's literally just used, nor does he put anything back he's got out, including closing kitchen drawers. He puts dirty stuff in with clean in the dishwasher then tells me the dishwasher is broken. Same with the microwave. Same with the coffeemaker and capsules - he swears it's broken. It's not. He just carries out the Proceedures for whichever, in the wrong order so they won't work. He's very cutting when I correct him. It's so sad. He's really quite unaware of my physical limitations now so I have to ask for help and give very precise instructions as to what he has to do next. I'm getting concerned but try to carry on as normal. His son said when I told him it was becoming a problem," do you want him to come and live with me in the flat?". "No," I said, "I could just do with a little support". His daughter is not speaking to us.
I do wonder what will happen as I deteriorate and he does. Who will take up the slack....

 

[PalSal]

Yes,I have.
I think people try to decrease the relevance of what I say I have seen in my husband's behaviour because either they want me not to worry too much or they are themselves unable to cope with the illness or they think they are consoling me.

My husband often forgets he has already tasted and liked some food.
It also happens that he likes a dish he had disliked the previous day.
Another thing I've noticed is that he forgets what some flowers or plants look like.
Not uncommon ones, but those he has been growing in our garden for years

My suggestion is that people spend a week caring for my husband then they really get the picture of what it is like to live day in and day out with the disease. Ours has been a long slow journey, and my OH is still very active and leading a good life with my help. But sometimes it is grating and irritating to practice the patience required to get on with things. Relatives need to experience the carers life....otherwise they just dont get it.

 

[dancer12]

My partner and I went out for lunch with friends to a restaurant nearby. Presented with the menus he chose roast beef until one friend reminded him he'd regretted last time so he chose fish and chips which he said he loved then when the order was taken he re chose roast beef. He often can't make a decision so plumps for what I've chosen, starter and pud and drink too. He can't find things he's literally just used, nor does he put anything back he's got out, including closing kitchen drawers. He puts dirty stuff in with clean in the dishwasher then tells me the dishwasher is broken. Same with the microwave. Same with the coffeemaker and capsules - he swears it's broken. It's not. He just carries out the Proceedures for whichever, in the wrong order so they won't work. He's very cutting when I correct him. It's so sad. He's really quite unaware of my physical limitations now so I have to ask for help and give very precise instructions as to what he has to do next. I'm getting concerned but try to carry on as normal. His son said when I told him it was becoming a problem," do you want him to come and live with me in the flat?". "No," I said, "I could just do with a little support". His daughter is not speaking to us.
I do wonder what will happen as I deteriorate and he does. Who will take up the slack....

Hi Tarloo:

I can totally understand where you are coming from. It's difficult to begin with and if you are not feeling well yourself it is doubly as difficult. My husband was diagnosed with FTD 5 years ago and what I hear all day is I didn't do it, I don't know, what did I do now, it's not my fault, etc. etc. etc. He does no wrong, it's always me. Nobody was here to turn on tv what am I going to eat, where are my clothes and on & on it goes -round & round.

As per your wondering what will happen, give yourself some peace of mind. It's never to early to plan. Minds & plans can always be changed, they are not set in stone but at least they are there. After my dad died my mother took it upon herself to plan her own funeral. Morbid maybe but both my sister and myself were grateful that at such a sad time most of the plans were already made. I don't mean funeral plans either I just mean
caregiving plans, etc.

Just a note your husband should have gone over to his sons flat, after he sees how difficult it is to care for him, his son would have been at the front of the line defending you and found out how to get you the help you desperately need.

All the best.

 

[Tarloo]

Thanks so much for Your reply

Hi Tarloo:

I can totally understand where you are coming from. It's difficult to begin with and if you are not feeling well yourself it is doubly as difficult. My husband was diagnosed with FTD 5 years ago and what I hear all day is I didn't do it, I don't know, what did I do now, it's not my fault, etc. etc. etc. He does no wrong, it's always me. Nobody was here to turn on tv what am I going to eat, where are my clothes and on & on it goes -round & round.

As per your wondering what will happen, give yourself some peace of mind. It's never to early to plan. Minds & plans can always be changed, they are not set in stone but at least they are there. After my dad died my mother took it upon herself to plan her own funeral. Morbid maybe but both my sister and myself were grateful that at such a sad time most of the plans were already made. I don't mean funeral plans either I just mean
caregiving plans, etc.

Just a note your husband should have gone over to his sons flat, after he sees how difficult it is to care for him, his son would have been at the front of the line defending you and found out how to get you the help you desperately need.

All the best.

Tonight earlier, I commented about some little dishes that were on the floor. He says he has no idea how they got there - it must have been me ( I'm in a wheelchair and find it almost impossible to bend and put even one dish on the floor let alone several. So I'm accused of being critical. Anyway, his son is coming for a couple of nights on Thursday so he will be able to see things for himself. It's the anger I can't cope with....I feel so vulnerable in the wh/ch.....though I know he only wants to help me in his way. I'm not familiar how this forum works so please bear with me. It's so good to hear an understanding voice. Thank you so much. Xx ps I've arranged carers 2 hours on 3 days a week to help prep & cook lunch which is great and takes the pressure off. XxTarloo