Help please

[Unhappy15]

My husband has just a his diagnosis from the Memory Clinic and has been prescribed Donepezil for vascular dementia.

I gave him the first tablet on Sunday evening and on Monday afternoon he was raving about his gloves being evil & he had to cover them up to save us. When I phone the GP and asked him to come out all he said was he didn't know what he could do and just left me with it.

Since then I have given him one more tablet and the same thing happened the next day, the Memory Clinic just said to not give him any more & they would come back to me.

Since then these 'episodes' are becoming a daily feature and include trying to disconnect the DVD player, crying and shaking and the only reply I get when I ask for help is ' call 999'.

I am at my wits end, do the tablets have this effect? I just feel that this is the start of an awful journey.

Please help

 

[CollegeGirl]

Hello Unhappy15 and welcome to the forum, although I'm so very sorry to hear of your situation.

If your GP is not helpful, the memory team have not yet got back to you, and you don't feel that it warrants a 999 call, I wonder if you could contact social services?

I just googled social services and the name of my town, and was directed to our local authority site which gave details of what to do in an emergency. They have a team during office hours and a team for out of hours situations.

You don't have to cope on your own, but unfortunately it seems that following diagnosis it's usually the carers or patients who have to go looking for the support, rather than the other way round.

I'm sure other people will be along shortly to offer help, advice and support. Hang on in there xx

 

[lin1]

Hello. Welcome to TP, I am sorry you have had to find us under such difficult circumstances.
Unfortunately some people do not tolerate Donepezil or other Alzheimer's meds very well.
The trouble is no one can say if it will cause unpleasant side effects or not. So they usually start on a low dose then if tolerated well it is then increased.

I assume you have stopped the meds .
I hope they will get back to you soon as their are other meds that may help to slow Alzheimer's down that you may be willing to try.

Have you noticed if your husband is worse at certain times of the day ?. if so it could be Sundowning , it is a period of greater agitation and confusion that often happens around sunset hence the name , in reality it can happen at anytime of the day or night and often starts at a regular time.
As far as I am aware only a few causes are known, tiredness, pain and illness are the ones I know of.
Personally I found that explaining things or correcting my when she was like this , not only didnt help it could make things worse.

Do get back to the clinic , Dr who prescribed the meds Monday and tell them exactly what has happened .

Another thing it could be is an infection, Urinary tract infection (uti) or a chest infection are the usual ones.
Often people with Dementia or the elderly do not show the usual signs we normally expect with infections such as a temperature or feeling unwell but can cause a sudden worsening of Dementia symptoms .
so it would be a good idea to try n get a sample of urine tested at the GP
surgery .

I too feel that the that Dr is not being very helpful and just as already been said a lot of us were left to flounder after diagnosis.
Talk about the hard school of knocks.

Most areas do have an out of hours social service dept . So do look their number up just in case.

 

[esmeralda]

Sorry you are having such a frightening and distressing time Unhappy, Do hope you get some help soon, and your situation gets easier. You must feel you have been plunged into a nightmare but things may well go back to being a lot more 'normal'.
Best wishes
Es

 

[Jennyc]

When my husband was started on Aricept 3 1/2 years ago, the doctor at the memory clinic said that one of the potential side effects was bad dreams and nightmares. She suggested that though the directions said take the tablet at night, it would probably be better to take it in the morning. I have always given them to him in the morning and so far, no particular side effects, and mostly no bad dreams. It might be worth a try. Good luck. We have lots of other problems, but so far nightmares are not among them.

My husband has just a his diagnosis from the Memory Clinic and has been prescribed Donepezil for vascular dementia.

I gave him the first tablet on Sunday evening and on Monday afternoon he was raving about his gloves being evil & he had to cover them up to save us. When I phone the GP and asked him to come out all he said was he didn't know what he could do and just left me with it.

Since then I have given him one more tablet and the same thing happened the next day, the Memory Clinic just said to not give him any more & they would come back to me.

Since then these 'episodes' are becoming a daily feature and include trying to disconnect the DVD player, crying and shaking and the only reply I get when I ask for help is ' call 999'.

I am at my wits end, do the tablets have this effect? I just feel that this is the start of an awful journey.

Please help

 

[Unhappy15]

Thank you

Thank you all for being so kind and replying to me .

I will continue to contact the Memory Clinic next week, but it is just the frustration of not getting any advice let alone help from the G.P. It just makes you feel so isolated.

I am sure that my husband, who is 81, has had dementia for some time but it has been very difficult to get him to agree to seek help. Reading about the symptoms I feel sure that he is in the middle stage, rather than the early stage. He seems to have deteriorated quite rapidly in the last six months and he is quite aware of the loss of his memory and the ability to do even mundane things. I really think he is also suffering from depression but a twenty minute appointment at the Memory Clinic is hardly a clinical assessment of the situation.

I just feel that to get the help we need is going to be an uphill struggle and although the health professionals pay lip service about looking after the carer, it seems they do not think just how frightened, angry, sad and desperate you are in this situation.

Sorry to rant and thank you all again for your help.

 

[CollegeGirl]

Oh please don't think you're ranting, and thereis no need to apolgise, not in the slightest! Dementia is so cruel, and can be so difficult to live with, both for the sufferer and the carer.

I really don't understand why this happens with dementia. If you have a broken leg, or cancer, you don't get sent away to deal with it on your own, to try to find the treatment or support you need yourself. Why is it like this with dementia?

It's no wonder that so many of us feel isolated, especially just after diagnosis. Talking Point has been a lifeline to me in my quest to help dad in his care for my mam. I have found out more from the members here than anywhere else.

Do keep posting, there is almost always someone here, even in the middle of the night.

 

[lin1]

Please dont apologise their is absolutely no need.
Unfortunately most of us on here know what it is like to be left floundering after the diagnosis.
Is their another Gp you could see at the practice who may be more understanding ? if not then you may have to change practices .

Their is an old thread on here about compassionate communication. I will put a link in a mo.
I must say it is not easy nor does it always work .
http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

Their are also Admiral Nurses, run by a charity . They are specialise in Dementia . The provide info and emotional support .
Sadly they are not all over the Uk yet but they do have a National helpline and email support.

I will try and find their site .
http://www.dementiauk.org/information-support/admiral-nursing-direct/

 

[Scarlett123]

I'm so sorry that you are having such a difficult and frightening time. As others have said, it's disgraceful that you are virtually told to lump it and get on with things, but you must persevere and get Social Services involved.

What strength of medication does it say on the packet? It could be that taking the tablet in the morning would be better, or even trying half a tablet. Unfortunately, the hard cruel fact is that very few carers are able to get the sort of results they'd like when they speak to their GP or Memory Clinic.

It's usually a long battle, when you have to keep on and on until you get the help and advice you need. I found it very effective to type a "statement" explaining exactly what was happening, and give that to the GP to read, at the beginning of John's appointment.

I wish you luck and never ever worry about unloading here on TP. That's what we're all here for.

 

[truth24]

Sorry to read your posts, unhappy 15. The most support I got as a carer was from Crossroads. After I contacted them to arrange for sitting services, they sent someone along to do a carer's assessment for me. It's probably not for everyone but they arranged for me to have counselling which I didn't want but went along with and found, to my surprise, that it was a great comfort. Came away from each session totally drained and emotional but eventually came out of the really horrible place I was in. They also have a scheme where they will fund you to do something just for you. Was also very lucky in that my GP's father was also going through the same thing so she too gave me great support. Hope you can find some comfort too.

Sent from my GT-N5110

 

[WirelessPaul]

It seems to me that as well as carers we have to become pharmacists. When tablets prescribed for Susan do not suit her I immediately think about reducing the dose, or as Jennyc said changing the time. No one else really cares and no one else is really interested so it is up to us to do the trials and changes. I do tell the Dr. what I have done but it is not open to them to disagree. Trial and error seems the only way we have to change the effects.

Your post has made me think about Susan who has become very agitated recently more and more often. I will look at reducing the Aracept/Donepezil to 1/2 a tablet to see if that improves anything.
Paul