Twixt rock and a hard place


Registered User
Jan 31, 2004
near London
It is quite inexorable, isn't it?

Never lets up.

Up until a couple of weeks ago, Jan had seemed to get a bit brighter. She could almost talk to me....well, we could sort of communicate. Some hope came back for an improvement in her condition. Nah, not getting better, but a little easier on her perhaps, and with that, a bit of pressure off me.

But around that time she also had another grand mal siezure. And also around the same time, her annual review.

At the review the doctor said they were concerned that Jan would have a seizure that they could not stop. At present they use Diazepam, rectally, to stop a seizure in its tracks, and it works.

Not nice, but fast, and Jan doesn't appear to be that concerned.

If a seizure happens that they can't stop, for one it will prolong the awfulness for Jan, and secondly, they will have to call an ambulance to take her to Casualty, and we al know that hospitals are not good places for people with dementia to be - they just can't seem to understand the condition.

So, the doctor proposed that Jan be put on yet another form of medication, sodium valporate, to try and prevent a seizure happening in the first place. I agreed to this, but said we would need to watch for side effects that might be worse than the seizure itself.

I'm aware that you have to give time for new medications to be accepted by the body and for things to find some new sort of normality, so, when Jan started to be much less 'with it' in my visits, I thought to myself "let's give her a bit longer to adjust!"

So, on her birthday in the middle of last week, I arrived to find her fast asleep. Nina came with me to visit Jan on Saturday, and she commented on how 'not with it' she was.

Today Jan was immobile and flat on her back, with her neck arched back so far she seemed to be having difficulties breathing. I managed to get her, during the course of my time there, into a sitting position, and she had some tea and birthday chocolates.

On leaving I asked the nurse in charge to tell the doctor of the change in Jan's condition. [am I really the only one who can see???]

But, going back to the title of this little homily..... we're between rock and a hard place. If we discontinue the medication, we risk seizures. While if we continue, Jan is semi-asleep when I see her.

Bloody illness! I'm tired.


Registered User
Jun 3, 2005
Don't know what to say ...

but just wanted to send you (& Nina) a hug, and my heartfelt sympathy with the god-awful rotten stinking puking unjust undeserved unfair hand of cards which has been dealt out to you.
Sincerely (if unhelpfully)


Registered User
Jan 31, 2004
near London
Hello Lynne

well, your message WAS helpful, so thanks!

We're all in the same boat here on TP of course we just all have our personalised private hells. I think one of the worst bits is when you just can't do anything to help without making something else worse!

Anyway, it helps to splurge it all out, and for the great TP community to understand.

All hugs gratefully received. :)

For most of us, we have little choice in this dementia-related road we are travelling and in that context I think Nina deserves not only a hug [which I WILL pass on!] but so much more as well, as she chose to leap in the shark infested sea to pull me out!


Registered User
Sep 13, 2005
Pgh. Pa. USA

Dear Bruce - I understand what you are going through since I went through a similiar experience with my wife. My wife had her first and most profound seizure six years ago. (Dislocated both sides of her jaw) She was hospitalized and put on 12 MG of Dilatin a day. She was home when she had her second seizure approximately four months later and thentwo more at ten and eight month intervals. Each time she had a seizure, the doctor increased her med. She was then switched to Lorazapam and then back to Dilantin and finally on to her present med -Tegretol. Each time she was switched, they took blood and determined what levels of the med were in her body. She started out taking 200 MG of Tegretol and is now up to 900 Mg a day. (Morning and night by suppository and mid day crushed in pudding). When I see the signs of trouble coming on, I put usually .5 MG drop of Lorazepam under her tongue and she usually quiets down in about 20-30 minutes. I didn't want to bore you with all the details, but as you say, between a rock and a hard place, is putting it mildly. I think they will have to monitor your dear wife very closely, blood tests, to see how much of the med she is retaining. As far as the med making her sleepy, what choice do we have. You and your wife are in my thoughts and prayers. McK


Registered User
May 20, 2004
Definitely time for one of those big group hug sessions.

Why, why, why? Why is it never ending, why are there no answers, why Jan, why no end, why, why, why. No bloody answers.

Back to the treadmill, one day at a time, what else can you do? Tomorrow is another day. I truly hope that it's a better one for you and all you guys who are at such a terrible low just now.



Registered User
Oct 9, 2003
Birmingham Hades
My Mate Bruce.
so sorry to hear the latest news.
What have we done to deserve this awful nightmare.
I think lately I have had enough,I am so tired of caring and fighting battles with SS.
Thinking of you


Registered User
Mar 12, 2005
West Sussex

So sorry to hear of your Jan's state now.

I can't do anything but I will be thinking of you and Jan, you have been kind to me when I needed help, so I am just returning the favour.

Norman neither our loved ones have done anything to deserve this hell on earth.

My Dad used to look at Mum struggling through at home and say the same thing, it broke his heart to see her try so hard and yet always fail. It broke my heart to see so much sorrow when he looked at her, the woman he loved for 54 years slipping away before his eyes.

As a child of a sufferer it is dreadful, but when it is your spouse it must be so much worse for you.

None of us are alone on here at least, so onward and upward.



Registered User
Mar 7, 2004
Bruce, my heart goes out to you (and Nina) for this bloody awful situation. Yes it is no win, but thank you for sharing this with us. We cannot help, but we can send our very best wishes and a big hug, to help ease you along.

Norman, you are always so there for eveyone else, I am sorry that there is no one to help you along this difficult path. Another big hug, just take care of yourself and try to get some rest.

God bless shipmates, Connie


Registered User
Jul 15, 2005

I think we just have to ask ourselves, what would we want if it was us laying there instead of them. Try to find that fine line of what is the most quality of life they have and try to maintain it. If that is just gone then perhaps what is left is just keeping them as comfortable and peaceful as is possible.

Hugs to us all, this is just tough, but persevere, we will all get through it.



Registered User
Jun 2, 2005
Los Angeles, USA
Bruce, I'm sorry to hear about the latest with Jan.

I feel a bit the same way about my mom at the moment. A couple of months ago she was acutely ill, in hospital a couple of times. It was a very slow uphill climb from there; she was not eating enough to maintain herself and it was dubious if she would start eating enough to pull through. One of the things that *seemed* to help was reducing pain medications -- the theory was the drugs were keeping her too lethargic to have any appetite, etc. Fortunately she seemed to be comfortable enough without so much medication, and after several weeks really perked up. Of course we can't know what combination of things helped.

Today the hospice nurse called and told me that, after a few really good weeks (my husband and I as well as the nurses have been pleasantly surprised at how far Mom recovered), Mom was looking "haggard." Turns out she was refusing to take her pills (not the first time this has happened, of course). She has been on a steady, fairly low dose of oral morphine, which the hospice nurse thinks has really helped her feel better therefore be more active, upward spiral. So now they've put her back on a pain patch to try to get things back on track.

My big concern is this change/increase in pain medication will again slow her down to where she won't eat.

So many unknowns ... what helped her get better a few weeks ago? how much has the morphine been contributing to her doing well? what caused the recent decline? how important are all her other pills?

This approach, with careful monitoring, is probably as good as any other -- you rolls the dice and takes your chances. No good solutions.



Registered User
Sep 16, 2005
There is a tree....


There is a tree between that rock and the hard place, where you can rest, cuddle and enjoy your loved one again...I know I've been there, am there at the moment....

Dad, like Jan suffered from seizures and was started on the drug Epilem...which from research appears to be the same sort of thing that Jan is on, same basic ingredient.

Now we are not sure if it was this drug, other drugs or just another dementia progression but around the same time Dad quite sadly began to dribble, he seemed out of it, was unrresponsive, basically a zombie....sound familiar?

Now again I don't know what has caused the change whether Dad adapted after 2 months or so, or whether I did, or perhaps it was the fact that the doctors worked to see how they could change his dosages. But he dribbles only on rare occasions now, which I can fix by giving him bubble gum which he loves to chew and is only occasionally a 'zombie' which I tend to put down to him just having a bad day now. I have video of him in his bad zombie stage and it is clear to me that he has improved.

In recent weeks the doctor has decided that it is safe to reduce Dad's epilem even further, with just careful monitoring as a back up, for some reason he says that Dad appears to be no longer in major danger of a damaging seizure. I don't understand it, but I trust this doctor he really cares.

Anyway just wanted to give you some hope, all is not lost.

As for
am I really the only one who can see???
unfortunately I think you and I know the answer to this.

Good luck in your journey to that tree, its a nice little oasis with a comfy sofa, and pina coladas...okay maybe I am exaggerating, but Dad and I are communicating, he's smiling whenever he sees me and he is responding to my attentions.


Registered User
Jan 31, 2004
near London
Hi everyone

many thanks for your posts, they really do help!

Nat, it is Epilem they have put Jan on. Do you have any notion of the dosage your Dad takes? And when he takes it [time of day, frequency]?


Registered User
Nov 28, 2004
I am thinking of you Bruce ..and Norman. That's all I can offer, being so new to this disease. Wish I could help.


Registered User
Mar 23, 2005
Dear Norman and Bruce,

Thinking of you both. It is amazing how you two can continue carrying the weight of caring whilst still offering support to so many others.

Bruce - The trade-offs on the medication question must be difficult to balance up. Doing my typical Google routine, I did find something interesting. It seems that sodium valproate has been used by some doctors to treat aggitation in people with dementia:

It sounds like the success re:aggitaion is mixed, and the side effects of sedation are mentioned, but at least it should mean that doctors have built up a clearer picture of how this drug can affect people with AD.

At some point, you have to rely on the advice of the medical professionals - but at least they sound fairly open about laying out the pros and cons. It sounds like you have made the best decision that you can for the moment - the rest is down to careful monitoring and adjustments.

Two other articles that I came accross that mention epilepsy (and to some small degree dementia) might be useful background information:

Take care,



Registered User
Oct 23, 2003
West Sussex
Dearest Brucie, you always give such strength and wisdom to us all, wish I could find something to offer or say to you now that would be right, but how can you make a disease with only one way tickets for all any easier to bear. It is so sad to hear of Jans condition and I know I would be feeling just the same in your shoes. Oh how I hate this darn disease. Love and loads of hugs, She. XX :(


Registered User
Oct 9, 2003
Birmingham Hades
you and Sandy and the rest of our family being there is all the help we need.
I say we because I include my mate Bruce.

Warm Wishes

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