sad day

[Nutty Nan]

About 5 years ago, every time I went to our local village hall, I found myself staring at a poster on the wall, which showed an elderly couple, and said something like "they have been married for 40 years, but he doesn't remember her name". It was from the Alzheimer's Society, and although I looked at it frequently, and copied their telephone number (which I later used), I tried hard not to think ahead and picture what this might mean for us.

Much has happened since then, and most of it we have taken in our stride. But tonight I feel so sad I can't even cry. My lovely husband has spent over two hours talking to me - ABOUT me .... we have spent the entire weekend together, yet he was telling me what 'she' would do when she'd come home from work, etc. etc. He looked so lost and distant. I don't know how to handle this. Suddenly, I am scared stiff, and that picture of the Alz poster is there, in my mind, all the time.

And how unbelievably dreadful must this be for my husband, how bewildering to be looking at a person, sensing that they are very, very familiar, yet not being able to place him/her .....

 

[Katy44]

I am really sorry to read that, it must be very upsetting for both of you. Hopefully there are periods when he knows who you are? Is the situation any better today?

 

[Jude]

Dear Carmen,

I feel for you very much.

This is the one aspect of AD that is probably just about the hardest to bear. We have the personal pain to deal with, as well as feeling the pain for our loved ones too. It's hard not to take it all on board and suffer for them as well.

My parents have been married for 63 years this November and quite often they don't have a clue who they are, let alone who I am. It breaks my heart every time and usually comes quite out of the blue, so that I am usually quite unprepared to supply an answer.

Fortunately, this comes and goes depending upon their level of tiredness - mainly it occurs towards the end of the day. I am referred to variously, as 'the staff', 'the Warden' or 'the boy that lives here'.

The best times are when my parents say 'Are you Judith?' and I can say 'YES'. After that, we share some big hugs and kisses and my parents are just so delighted that they have remembered!

All I can offer as solace Carmen, is to say that you are not alone in your grief over this situation, although this is probably of little comfort.

Kindest regards,

Jude

 

[Sheila]

Dear Carmen, so very sorry to hear this. It is indeed unfortunately one of the sad facts of AD/dementia. All you can do is share the memories with him as he tells you and get pleasure from that. You will have good times still and things that you can share even if your husband forgets soon after, it will still be there for you. Jude is right in what she says, hugs all round and lots of them are good for everyone especially when you feel vulnerable as both you and he do. I remember that poster well, I saw it when my mum was ill but undiagnosed and it still hits home now, it was a very good one in illustrating what carers go through with this illness I thought. Love, She. XX

 

[Izzy]

Oh, Carmen - I'm so sorry to read your post. Our situations are so similar it really struck a chord. My thoughts are with you.

Izzy

 

[Nutty Nan]

layman versus professional

Dear Katy, Jude and Sheila,
Thanks for your kind messages.

Unfortunately, things are not much better today, though not quite so personal. Lots of ranting about 'soundsos who take all my things away', and insisting that 'this could not possibly be our home', since he's never been here before.

I am trying to stay practical, and will contact the consultant asap, as this seems like a sudden wave of confusion. After more than 4 years on Aricept, I am wondering whether my husband might benefit from a switch to Ebixa.

Here's my question: what risk to I run by making such a suggestion, bearing in mind that I am a complete layman? I am so worried about the possible result of stopping Aricept (to quote the specialist: "a sudden, irreversible downward spiral"). Would it be realistic to expect a better result from Ebixa (always assuming it is available), or is it too big a gamble?
I am just worried about doing/saying something I may later regret.
(Just to explain, Tony has only ever been offered a memory test, and our (approx. quarterly) appointments consist of a brief chat, a pat on the back, and a new appointment in 3 months ....).

 

[Sheila]

Dear Carmen, do it tongue in cheek. Be humble, ask the specialist, - is there anything he thinks may help your husband, any new drugs he could recommend or ways of coping etc. Apeal to the ego, I found it never failed! Also, in the long run, unfortunately this is a battle we all of us know we can't win, so don't beat yourself up too much about getting the right medications to help memory, they all will fail in the end. Please don't think I am being harsh or cruel here, it's just the reality of this awful illness that must be faced, sorry.Good luck, Love, She. XX

 

[Katy44]

Carmen, let us know how the appointment goes, and look after yorself in the meantime.

 

[Jude]

Dear Carmen,

I spoke to our Consultant Psych a couple of weeks back about swapping Dad's medication from Aricpet to Ebixa. He wasn't very keen, but did suggest a short course of diazepam instead to calm him down. It seems to have worked.

Jude

 

[storm]

Dear Carmen,I do agree with shelia about playing up to drs egos, it may stick in the throte to do it but you seem to get more information that way. I find that the more informed you are the less forhcoming they are!My thoughts are with you and all i can say is grab every moment of recognition and store them close to your heart to comfort you on the bad days. storm

 

[Norman]

Sheila
you are so right.
Be humble uri.
Never TELL a professional always ask "do you think these new tablets help"?
Always "can you suggest""What would you advise"?
My working life was spent amongst the professionals,this is a man who knows!
Norman

 

[Nutty Nan]

Thanks for all your good advice, which I have taken on board. Have phoned for an appointment, but don't have a date yet.
Heard a song from 'Annie' on the radio this morning: "The sun will come out tomorrow", which made me feel a bit better and helped me get a new grip. Will try hard to focus on the good moments, and will keep you posted.
Thanks for the Therapy Session!

 

[Margarhett]

Hello Carmen,

Do you have a CPN or someone else that visits you at home? if so can you discuss the medication with them. Your pharmistist can also give you information about the drugs so you can find out more before you see the consultant.

I was sad to read your comments, AD robs not only the person but their loved ones to.
My husband has frontal lobe dementia and it hurts me to see how this once intelligent man is loosing his personality, quick wit and turning into someone I don't know.

 

[Nutty Nan]

Dear Margarhett,
The CPN has just visited this afternoon, but Tony was with us the whole time, and it was a bit difficult to discuss this particular problem. However, I have managed to get an appointment with the consultant next week, and will update him in writing before we see him, so that he can respond without upsetting/ undermining Tony. This has worked in the past, and I am keeping my fingers crossed that we keep finding new ways of helping him.

 

[Jude]

Dear Carmen,

AD suffers seem to easily talk about us in the third person, or in front of us, don't they? Of course, we cannot do the same, because it really seems such a loss of dignity and disrespectful to do the same with them.

Discussing issues prior to appointments is a great way of circumventing this.

Best wishes,

Jude

 

[Nutty Nan]

reporting back

Just a brief update on our appointment:

Tony, of course, was on his best behaviour: broad grin, upright posture, booming voice on greeting the medic: “Oh, I recognise you, how are you?”. The performer in front of his audience – best medication I’ve ever known, and so reminiscent of the poorly toddler who is bouncing off the walls by the time you get an appointment with the GP ….

Doctor was charming as ever, asked about our well-being, suggested Tony should “carry on singing”, did not think a change of medication was appropriate, patted us both on the back (actually, he shook our hand!) and offered us a further appointment in about 3 months.
Not all, but most of his comments/conversation were directed at myself, with reference to the letter I had written, and the suggestion that I would have to consider more daytime care for Tony within the next 12 months or so (I am at work from 8am – 4pm, monitoring Tony with ‘phone calls, regular visits from daughter and very occasionally others throughout the day). I was glad that Tony was unable to follow the conversation, which he illustrated in his own words: “I can’t work out what you two are talking about. Where do you know each other from? Do you work together?”
It wasn’t a particularly uplifting event, but predictable, and at least an outing for Tony, who, in fact, has been a little less stressed this week.

As Norman says: one day at the time!

 

[Jude]

Dear Carmen,

Did the Doctor believe you, or was he taken in by the gala performance?

My parents are really skilled at bunging on an act in front of visitors, MD's and CPN's. It's almost as if I'm lying about their AD sometimes, because they appear so 'normal'.

Unfortunately, the effort of doing so usually ensures a big collapse later on and then I get left with the mopping up to do and the tailspin from bad tempers, etc.

Additional carers sound like a very good idea too. At least it will give you more chance to relax.

Jude

 

[Sheila]

Dear all, know that feeling well. Writing in advance is the only way I found to get a look in. If Mum had had her way, she would have been running the show, but by forwarning the professionals, you can do your best to help them get a little bit of the big picture that is the real 24/7 scenario, hopefully, this will help them to help you continue the battle. Love, She. XX

 

[snuffyuk]

Why oh why should we be humble before the professionals who think they are a gift from God. It is our right to ask the questions and their duty to answer them. If you don't ask you won't get the answer.
Re the third person! There was a good drama on Radio 4 a few years ago called "does he take sugar" All about a disabled person that everyone "talked over

snuffyuk

 

[Nutty Nan]

correspondence

Sending a 'report' ahead of a consultation seems to me sensible, as it saves time during the appointment and makes it easier to cover all aspects, and above all, it eliminates hushed comments about the AD sufferer.
However, when I witness the 'gala performance', as Jude so appropriately calls it, I cringe with guilt about the miserable picture I have painted, and I have no idea what the consultant makes of this patient, whose wife seems so intolerant .....
I suspect that the AD sufferers and their immediate carers are the only ones who realise how enormous the gap is between the good moments and the horrid ones.