to tell or not to tell

Áine

Registered User
Feb 22, 2006
994
sort of north east ish
Sorry, this isn't news any more, and there's nothing more really anyone can say. But dad's still climbing the walls and I'm feeling worse and worse, whilst still feeling that it was the right thing to do to tell him. It's complicated by the fact that I found out they started him on amitiptyline the day after I told him his brother died. So I don't know how much is about Peter's death and how much could be reaction to the medication. His speech wasn't brililant but I used to be able to mostly make out what he was talking about. It's loads worse now, even when I can hear the words it seems quite random and rambling. Talking about staff killing the residents and settling the place on fire and destroying his clothes. His vision is worse, or he's hallucinating, trying to get hold of things that either aren't there or aren't graspable - like the pattern on the plate etc.

It's no worse than a lot of the rest of you are going through. But it's a heck of a change from how he was last Monday, and I'm still reeling from the shock of it.

Just needing another moan I think :(
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
I am in a similar boat

Dear Aine, feel sure it must be more the reaction to the new medicine than anything you told him.

Cutting my story short; had to give Lionel a new medication to day, and within an hour his speech had gone completely, he too was picking patterns off the tablecloth, I had to feed him his supper, and it has just taken 2 hours to get him settled for the night. My carer could not believe the change in him from this morning.

You will have to monitor dad closely, and hopefully his condition will settle down soon. Thinking of you, love
 

Sandy

Registered User
Mar 23, 2005
6,847
Dear Áine,

Sorry to hear about the changes in your dad's behaviour.

Regarding the medication, you might want to take a look at the Alzheimer's Society fact sheet where it is mentioned (apparently it is an anti-deppressant):

http://www.alzheimers.org.uk/How_is_dementia_diagnosed/Conditions_with_dementia-like_symptoms/info_depression.htm

Down near the bottom of the page, you'll find this text:

Tricyclic antidepressants, such as amitriptyline (Lentizol), imipramine (Tofranil) or dothiepin (Dothiepin, Prothiaden), are ‘older’ antidepressant drugs. Side-effects include drowsiness, a dry mouth, blurred vision, constipation, and urinary retention. A side-effect to which the elderly are particularly prone is increased confusion. This type of drug should not be taken by people with dementia.

It might be worth having the use of this medication reviewed.

I'm sorry if the change in your father's behaviour has made you doubt your decision to tell him about his brother's death. I hope that it's mostly down to the change of medication and that the correct medication can be sorted out. By the way, what did the home say was the reason for the introduction of this medication?

Take care,

Sandy
 

dmc

Registered User
Mar 13, 2006
1,157
hi Aine

the doctor put my mum on amitryptiline before she was diagnosed in december and it had a terrible effect on her and was one of the reasons we had to have her hospitalized.
another doctor told us it was an old drug and that there were much more suitable drugs available
worth looking into
best wishes
 

Áine

Registered User
Feb 22, 2006
994
sort of north east ish
Thanks Connie, Sandy and Donna. I think you're right that it's the medication. The GP has been out today and reduced the dose. Dad didn't any amitriptyline last night and he's quite a bit better today than he was yesterday. He's supposed to be starting his reduced dose tonight but I've asked them to with-hold it and start it tomorrow. Hoping it's out his system and he's able to go to the funeral tomorrow. I'm thinking I won't actually take him to the funeral, just meet people at the crem and go to the bun fight after. Think funeral might be a bit much for him.

Sandy, dad was put on the amitriptyline, with my agreement (though I didn't know when they'd planned to start it) because he has a really bad problem with drooling, and one of the side-effects of it is dry mouth (as you note in your post). It might sound a bit "sledgehammer to crack a nut" but his mouth was running like a tap and his clothes soaked within minutes of putting them on. Even I couldn't keep up with wiping it, so there's no way care staff could have.

It felt quite scary this evening though (is it just me?) when the nurse is saying that he can withhold the medication, but GP prescribed it, so it has to be documented that it's been withheld at my request. Feel in a double bind of guilt if I do nothing and he's too ill to go tomorrow, and guilt if he's ill because of no medication tonight. :confused: It's one thing knowing that there probably isn't a Right Answer, but it's hell for me in that position. :(
 

Amy

Registered User
Jan 4, 2006
3,453
Aine.
Is amitriptylene an anti depressive? Maybe I should go back and read the thread. I think I was on it for post natal depression and it really made me feel odd. Came straight off. Not nice, but what about a plastic backed 'bib', to prevent dampness getting through to dad's clothes. I know that they use them in mum's home at mealtimes. Medication may stop the drooling, but at what cost? Only a thought.
With love
Amy
 

Sandy

Registered User
Mar 23, 2005
6,847
Hi Áine,

Sounds like you're doing the right thing to try and get the medication reduced - possibly even eliminated.

From what (little) I understand, the most significant problem is that it is amitriptyline is anticholinergic - that is it reduces the activity of the neurotransmitter acetylcholine

(http://en.wikipedia.org/wiki/Anticholinergic)

This is effectively the opposite of the action of drugs such as Aricept which inhibit cholinesterase enzymes (the chemicals that break down acetylcholine). Aricept increases the amount of acetylcholine available in the brain because it limits the action of the enzyme that would normally break it down.

(http://en.wikipedia.org/wiki/Cholinesterase_inhibitor)

In a nutshell, it would seem like amitriptyline can act as a sort of anti-Aricept. I'm not medically qualified, but that would seem to be the general principle.

Your idea of skipping the actual funeral sounds very good. Giving him a chance to meet up with friends and family and talk over old times seems the most important bit.

Take care,

Sandy
 

Áine

Registered User
Feb 22, 2006
994
sort of north east ish
We made it!

Hi Guys!

Unbelieveably, we made it to the bun fight after the funeral today. I got to the nh this morning and he was sitting in his chair in pyjamas and jumper refusing to go for a bath and had refused his breakfast. Having a go at any of the carers who came near him.

Things turned around a bit when I suggested that he wouldn't be able to go to see his sister if he didn't let the carers smarten him up a bit ;) Half an hour later he was scrubbed, shaved, shirt and tie, big smile.

He enjoyed seeing family, and they were all very pleased that he'd been able to make it, especially since he'd been so bad over the weekend. He can't really follow conversations but he clearly liked being around people and included as part of the gathering. I'm so pleased I was able to take him. :)
 

Amy

Registered User
Jan 4, 2006
3,453
Well done Aine,
We find with mum that although the dementia is very advanced she often responds well to family gatherings. She likes being with happy, smiley people.
I'm pleased for both you and your dad that it was a positive time.
Love Amy
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Well done Aine, now try to take a little time for you. This illness is very much a two way thing, so just don't exhaust yourself.

I know how trying it can be to present our loved ones, all spruced up and able to quietly enjoy a gathering in their own way, but just don't wear yourself out. You are to be commended though, love
 

Áine

Registered User
Feb 22, 2006
994
sort of north east ish
thanks Connie and Amy. It was lovely to get him there and see him enjoy himself. I'm trying to take on what you've said Connie, I'm sure you're right ..... I need some time for myself, and I am exhausted. Had the first night off from visiting him in weeks. It feels strange to not see him, but good to get home from work a little earlier and have a bit of space to myself.