quick progression or side effect from aricept

[DianeB]

Hi,
I am new to this forum, but in desperate need of some advice. I keep trying the helpline number to no avail.
My mum is 82 and suffered from dementia (they wont say if it is alzheimers) now for about 6 years. 18 months ago she was put on 10mg of aricept, and she seemed fine. 3 weeks ago I noticed she started talking with a lisp, I thought this could be the fact her teeth were not glued in. Last week however I noticed she kept twisting her mouth and sticking out her tongue, Dad also mentioned that her leg the day before started jerking. Tuesday she got worse and Dad called the hospital all her limbs are now jerking, and her speech had got worse. She has also become unsteady on her feet ..... all this in just 3 weeks.He called out the emergency dr and they came round yesterday and Dad said he thought it was an adverse reaction to the aricept, and the Dr said it could be and for her to come off them. I demanded Dad get her back to the hospital rather than the local gp and he got an appointment tomorrow, of which I am also going. I saw her last night and cried all the way home after holding in my tears whilst i was there. It is like she has had a stroke, her words are so mumbled slurred and at times not making sence. I mentioned this to Dad but he said the GP checked her out and surely if she had had a stroke he would have mentioned this.
I am out my mind with worry, could this be a side effect of the tablets even though she has been on them for 18 months, or can dementia progress at such a quick level, or could it possibily be a stroke, my nan died of a stroke.

Sorry for the length of the post, I just don't know what to do or think.

 

[Lynne]

Hello Diane

I am so sorry your Mum's situation has taken a turn for the worse. I am in no way qualified to suggest a reason, just another carer, plus what I have read on here (TP) of other people's experiences.

It does sound like some kind of stroke to me, I can't see why the Aricept should suddenly produce an adverse effect after she has been settled on it for some time. Perhaps some of the AS factsheets might be helpful? There's a link to them on the Talking Point homepage, near the top right hand side. (or try this - http://www.alzheimers.org.uk/factsheets) Other kinds of dementia which suggest themselves to me would be Vascular Dementia or T.I.A.s. (transient Ischemic attacks - sorry, spelling prob. wrong there) which could be worth some researching.

I hope your Mum can be stabilised soon, please let us know how things go.

Best wishes

 

[BeckyJan]

Hello:

This is very sad for you and sorry the GP has not explained more - perhaps he just does not know! We are in a similar situation in that my husband is now deteriorating and I also believe he had a mini stroke on Monday am. There is so little we can do about it anyway, I have mentioned it to the GP but do not expect anything to be done. I am afraid it is part of the illness - in David's case it is mixed dementia so he could be having mini strokes without me noticing.

I am not a doctor but it seems unlikely that your Mum's
deterioration is due to Aricept, as surely a reaction would have occurred earlier.

It could be that your mother has mixed dementia ie Alz. and Vasc.Dementia - this could then be a stroke or TIA. It is well worth you researching these (loads of info on the internet as well as the Society's factsheets). Once informed you may feel able to talk to your Mum's GP (he may do that if your Dad goes along with you).

It is very hard for the medics to diagnose which type of dementia.

Best wishes Jan

 

[Grannie G]

Hello Diane

I`m not able to guess what is happening to your mother, there could be a number of causes.

You and your father have done the right thing in getting medical advice immediately. So often there is a crisis , often when you least expect it. I had one last week with my husband.

And I know how it feels to cry on the way home.

Please don`t apologize for the length of your post. That`s what Talking Point [TP] is about. I`m sorry you couldn`t get through to the helpline but you will always get through to TP.

Please post an update after your mother has been seen at the hospital tomorrow.

Love xx

 

[DianeB]

Thank you so much for all your help and advise. I have now printed off 13 pages off the fact sheets for Dad as he can't get to a computer to look himself ...they live 28 miles away from me.
I have also got the council sending out forms for Dad to get a disabled badge for the car, as he is already panicking about going shopping with Mum.
I will report back what happens tomorrow but now Dad said the Drs have confirmed now it is Alzheimers ....something he forgot to tell me ..typical.
Spoke to Mum on the phone, but couldn't understand what she was saying but somehow she seemed to understand what I was saying. My son rang her today as well and Dad said that really perked her up, bless.

 

[Amy]

Hiya Diane,
So sorry mum has deteriorated so quickly...hopefully tomorrow will help sort out what is happening.
It does seem strange if it is a reaction to the aricept after this length of time. I know that people have commented on deterioration once aricept is stopped, so it may be worth asking for it to be restarted if there are no contraindications.
Just a thought.
Best wishes, Helen

 

[citybythesea]

Dianne,

I'm not a dr. and can only speak from experience, mom had an episode a few months back where her arm was violently shaking then stopped. I took her to a dr. who chose to have an mri done of her brain. The mri showed where she had had 3 strokes. While mom is also AD the course of action is treated very differently, but still if she is not considered to be in late stages proper diagnoses have to be done so you can give her proper care. I hope her dr.s visit gives you some relief...in the meantime I suggest you keep a journal of life with her, this makes it much easier for you and dr.s to pinpoint triggers. The strokes that she had seemed to take her down very quickly. But at the same time I started to become more aware of little things about her that helped me to care for her easier.

HUG

Nancy

 

[DianeB]

well we have hospital at 2 today. I am ready for them saying its a stroke, as I can't see it being anything else to be honest. I was on the phone to dad alot yesterday, it is so fustrating living 28 miles away, in fact 6 years ago I asked them to move up here where, it is so peaceful where we live and they both say the area is lovely, but nahhhh would they move I mean a 58 mile round trip to take some milk to them, this is going to be a nightmare the worse Mum gets. There is nobody else who can help out either. If they lived near here Dad would get regular breaks as we could all help out and be there in an instant if he needs us. I am so fustrated. They are so much into their own routine, they don't do anything or go anywhere and this is not good for Mum she needs some type of stimulation, I could scream!!!! Dad has now said he can't drive with Mum as he wouldn't be able to concentrate, and he has just had a brand new car from the showroom.

 

[Grannie G]

Hello Diane

There are a lot of points in your post which might be better for addressing.
Please. please don`t think I`m being critical. I can feel your frustration.

When you asked your parents to move nearer to you, it was approximately the same time as your mother was diagnosed with dementia. At the time the thought of relocation and all it`s implications would perhaps have been too daunting a task for both of them even to consider.

I understand your father being unwilling to drive, with your mother the sole passenger. If her behaviour is as you say, and he is distracted, it could be dangerous.

It is almost impossible to offer stimulation to people with dementia. Their attention span is very short, they are easily confused and their motivation is limited. Your father as main carer will be so tired, stimulation will possible be the last thing on his mind.

Depending on the outcome of the hospital appointment today, perhaps you could have another try to persuade your parents to move nearer to you. Maybe if you promise your father you will take responsibility for the total move, that is if you are willing and able, he might be more in favour of the idea.

I really do feel for you. But what is so difficult is trying to see through the eyes of your parents.

Please post an update after the appointment. And accept my apologies if I`ve got hold of the wrong end of the stick.

Take care xx

 

[DianeB]

Hi, Thank you for your reply, I have tried to answer you the best I can.

[

When you asked your parents to move nearer to you, it was approximately the same time as your mother was diagnosed with dementia. At the time the thought of relocation and all it`s implications would perhaps have been too daunting a task for both of them even to consider.]

Mum was not diagnosed until just over 2 years ago, I knew something was wrong but Dad was having none of it. I certainly can remember 4 yrs ago when my brother died Mum was not all there but when i mentioned this to Dad the other day he is still in denial ( of which I can understand, sometimes in life it is our only defence from what is actually really happening) . Even Mum herself says she is not the same since my brother died.

I think what it is, is the fact they have lived there for over 40 years, but the estate has changed so much in the last 6 years, it is now not really a nice place to live. Dad is constantly moaning because they live near a collage and the students take up the whole road with their parking. The crime rate has gone through the roof and now Dad has made the house like fort knox. Thing is neither of their hearing is good and I can often stand knocking on the door for ages, it is quicker to knock on the window of where they are sitting but then Dad says it makes him jump so I can't win. I have my own key but it is useless as he has fitted about 5 bolts on the door. He even takes the phone off the hook and forgets to put it back in so if I try and ring I can't get an answer and then I go into major panic alert. I worry if ever there was a fire they just wouldn't get out in time.
The problem we have now is with the price houses, if they had done it 6 years ago they would have been able to move from theirs to a bungalow near us with no added cost, but now here has become a prime area and they just could not afford to move here now, so thats why I feel fustrated. We have always said to them they wouldn't have to lift a finger as we would do it ALL for them.

[I understand your father being unwilling to drive, with your mother the sole passenger. If her behaviour is as you say, and he is distracted, it could be dangerous.]

I totally agree and would not want my dad to drive if he feels this way, its scarey.

[It is almost impossible to offer stimulation to people with dementia. Their attention span is very short, they are easily confused and their motivation is limited. Your father as main carer will be so tired, stimulation will possible be the last thing on his mind.]

I have noticed when we go to visit this really perks Mum up no end, even Dad has said that she is cheery for the rest of the day. This is one of the things that I mean also going out for a drive and getting some fresh air and scenery. I have offered to take Mum out for the day therefore giving dad a rest, this would be good for Mum and Dad but he rings up and backs out at the last minute using anything as an excuse. I don't think it is a trust thing either, he knows I am strong enough to hold Mum up and more than capable to look after her.


[I really do feel for you. But what is so difficult is trying to see through the eyes of your parents.]

I wish I could for both of their sakes let alone ours.

Sorry I am rambing but all these worries and fears I have held inside me for ages and not told anybody. I love my parents soooooo much and this is wrenching my heart as I don't know what else I can do for them. I bet I'm not even making much sence myself.

 

[Skye]

Hi Diane

What an awful situation! I can tell how worried you are about your parents, and feel powerless to help much because your father wants to be independent. That's a story we've heard so often on TP, and it's heartbreaking.

To a certain extent, I can understand your dad, I was the same for a long time.

But things have deteriorated suddenly, and depending on the outcome of today's appointment, I think you should have another go at getting them to move. Just be very gentle. If you're too forceful, he'll dig his heels in. It has to be his decision.

Try asking your dad what he would like to happen? Does he think mum should go into a care home? After all, he's cared for her for a long time, and must be very tired.

If he doesn't want that, what does he think are the alternatives? Just work your way round the decision, tell him he doesn't need to decide today, but to think about all the possibilities.

I hope all goes well today, please let us know.

 

[jane@hotmail]

Hi Diane

I can really feel the frustration in you. I have been there so many times in the last 5 or 6 years........ But let me tell you in hindsight, to try and relax and tell yourself that it's their life and they make their own decisions and it's obvious your going to have little influence over it. Firstly you need to have a frank conversation expressing your frustrations, make it very clear how much you love them and will always be there for them, but because of the logistics they have to understand that it's difficult for you. I found once I explained to dad that there was going to have to be a little give and take, he was much more open to ideas and help from me. If you're like me, you want to take control and do what is so obvious to you and make their lifes easier, look after them. You have to understand it isn't so obvious to them, and your dad may even feel by letting go, by letting you have some control in their lifes is like giving in to their situation. I know that my dad had a sense of pride, that I admired, but it drove me to desperation! Once I accepted that I was foolish to run myself ragged, life became much easier. Dad realised it wasn't easy for any of us and he was more excepting of my suggestions, he didn't always act on them, but I learnt to think hay ho it's your life. In return if they have to wait for that milk you were going to rush round to them, then so be it. It may seem harsh, but I'm not asking you to give up on them, just realize they have choices as you do too. I found by adopting this attitude I was far less stressed and frustrated and my dad was much more open. I hope my experience can help you in your situation. Remember, things inevitability work out in the end, however unlikely that may seem at the time. I'll be thinking of you today, this is such a difficult time for you, I wish you strenghth... Good luck. x

 

[Grannie G]

Perhaps Long Life Milk?

Could long life milk be the answer to one of your worries, Diane? It`s not quite as nice as fresh milk, but unless they drink it as milk, the difference is unnoticeable in tea, coffee and cooking.

Diane
Sorry I am rambing but all these worries and fears I have held inside me for ages and not told anybody. I love my parents soooooo much and this is wrenching my heart as I don't know what else I can do for them

Please don`t apologize for `rambling`. You are not........and if you were, it`s all right. It`s not good to keep all these worries bottled up and who knows? Someone from our membership may have a brainwave.

Love xx

 

[DianeB]

Thank you for all replying. I have brought them some long life milk the other day in case of emergencies. I said to dad ok it's not brill but better than nothing and the date was 8th November, I said unless you try it Dad you wont know and it would always be there as a back up.
Jane so much of what you put, I could write too. I know its pride with Dad and I admire it, but I worry about the effect on his health too. He is getting more stubbon and cantankerous (spelled wrong I know) but I think depending on today, he may change some of his attitude.
I am going to suggest about geting some rails fitted, so it may help give dad some peace of mind knowing Mum has support if she needs it.
Dad would never put Mum in a home, and I certainly never would either and I mean never, if that means she lives with us and I am a full time carer, even if I had to pay for somebody to help me then that is what i would do. My husband and I have already discussed the possibility in the future of adapting our home, which could be done, even for them both to have their own anexe. I can't explain how strongly I feel about this because I am myself adopted, my Mum and Dad got me out of a childrens home ( I was abused as a baby) and I will never ever see my Mum and Dad go into one themselves.

 

[Grannie G]

OH Diane, I do hope you can persuade your parents to let you help them, I really do.
Love xx

 

[Lynne]

Hiya Diane,
It does seem strange if it is a reaction to the aricept after this length of time.
I know that people have commented on deterioration once aricept is stopped, so it may be worth asking for it to be restarted if there are no contraindications.
Just a thought.
Best wishes, Helen

Think this point is worth repeating!

 

[DianeB]

Update.

Taken Mum to hospital and the Dr has said it is either a stroke or she is now suspecting Huntington's disease on top of the Alzheimers, she said Mum is showing every classic symptom of this as well as the Alzheimers. We are not sure about Mum family history either which does not help. Upon the news Dad is now a broken man. The hospital now are getting an emergency appointment with a neurologist and a CT scan. The outlook looks very bleak. Mum couldn't hold a pen, couldn't spell her name, and when shown a key couldn't even say what it was for ages then after a minute or so she said I got it a key.
Dad has been in denial for a long while and I think it has now hit him. We have said that we will be there every step of the way and if that means they move in with us, so be it.

So my prayers are for My Mum and Dad xxxxxxxxxx

 

[DianeB]

Lyanne the aricept was stopped after my Mums deterioration and not before. She has only been off the aricept since Wednesday.

 

[citybythesea]

Dianne maybe now is the time to think of adding on to your house. If your father is on the side that he doesn't want to impose then I would go around the back door and act as if you are thinking of adding on for the future. Your husband may be able to drop a few little hints to him as to how worried you get about both of them and maybe just maybe he might suggest that too would be the time of moving. I wonder if you might have kids? Perhaps granddad might like to see his grandkids more or maybe it could just be brought up that it might make life ewasier and more tolerable from the area they are in now.

Our elders are quite a brew sometimes. I feel the same way you do about a nursing home. Please talk gently somehow with your father and show him that you care and want to keep them out. It is not easy caring long distance and even in your own home it is hard, I would hope that he might welcome the extra help as for moving your mom. Depending on her type of personality now it may be that she would move very easily, not all dimentia/AD sufferers have a hard time moving. Hope all goes well.


HUGS

Nancy


PS....maybe you should introduce him to TP and let him see how people work together to make life easier and that he is not alone and what he may someday have to face with your mom.

 

[DianeB]

Hi,
I think dad knows now it is going to be inevertable that they are going to have to either move near us or with us. I don't work which will be a blessing. Our children are 21 nad 24, my 21 yr old daughter lives at home but is a good girl and no problem. I am going to ring the local council and see if there is any way we can get them a bungalow near us, as there are some in the village for the elderly ...this would be the most ideal option if it is at all possible. If my house needs to be converted i don't think it will take much. The study certainly could be made into a downstairs bedroom, and we would have to sort out a shower room somewhere.
Dad knows I have joined the forum, but he does not have a computer and he can't leave mum for any length of time .....he wouldn't even know where to start. I have read the messages to him down the phone and he even mentioned I had joined the forum to the Dr today, so i write with his blessings.