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Mother diagnosed today

Candlelight 67

Registered User
Nov 4, 2013
167
0
West Sussex
Hi, I have recently joined the forum.

Today My Mother was diagnosed with Mild Alzheimers and has been prescribed Donepezil. I am not surprised a bit but even so am rather upset. We have been given loads of information which I have read through and am still digesting. So much too soon.

I have just rung my Mother who has just got back from a hair appointment made by me and I took her there. She comes back under her own steam. I was trying to talk to her about her diagnosis. She has said she is not interested and wants to forget all about it. I will have another go but she seems to have gone into denial. I have lost count of the times she says her memory is bad etc. The phone calls losing things. For example she left the oven on today with her lunch inside and only found it when she came back from her hair. Luckily she is in a warden assisted flat.

I am fully aware that it is my Mothers choice if she wants to take the tablets and in what she becomes envolved with but I am just so worried that she will dig her heels in and the situation will get worse and worse. I also know I am probably going about this in totally the wrong way.

I was wondering if anyone on here has ever had any experience of dealing with the denial?. Apologies for the rather long post and I hope I have put this in the right place.

Candlelight 67
 

sistermillicent

Registered User
Jan 30, 2009
2,949
0
I'm not surprised you are upset and I suspect that somewhere in her so is your mum. My mum never accepted that she had AD even though she was told and it seemed cruel to try to force her confront it, and pointless as she would have forgotten after 10 minutes, so we just dealt with things day to day.
You don't know what path things will take so going with the flow may be a good choice.
Taking the tablets may give a little help in slowing down the progression of the illness so it may be worth pursuing getting help in to ensure they are taken, unless someone actually witnesses them being taken it is impossible to say they have been.
 

Candlelight 67

Registered User
Nov 4, 2013
167
0
West Sussex
Hello Sistermillicent, thanks for your reply. I think you are right that my mother does know about her diagnosis somewhere.

I was very interested to hear that your mother never accepted it and can fully understand why you did not push it. That must have been extremely difficult for you.

Thank you for the point about actually witnessing the pills being taken. I was just going to remind and check the packet. We have been told about the dosages boxes. I will have a look at what would be available. We would definetly be self funding.

Thanks again.
Candlelight 67

I'm not surprised you are upset and I suspect that somewhere in her so is your mum. My mum never accepted that she had AD even though she was told and it seemed cruel to try to force her confront it, and pointless as she would have forgotten after 10 minutes, so we just dealt with things day to day.
You don't know what path things will take so going with the flow may be a good choice.
Taking the tablets may give a little help in slowing down the progression of the illness so it may be worth pursuing getting help in to ensure they are taken, unless someone actually witnesses them being taken it is impossible to say they have been.
 

jaymor

Volunteer Moderator
Jul 14, 2006
15,113
0
South Staffordshire
Hi Candlelight,

Take the knowledge in slowly, nothing is going to happen overnight. Don't overload yourself or you will go into meltdown. It would be good if someone could make sure she has had her medication. Medication if it suits the patient can be very beneficial. It worked very well for my husband for at least 4 years.

Not sure how you would feel about letting people know about the diagnosis especially as your Mother is in denial at the moment. If those around her, warden, close neighbours etc were in the know then they would understand when she may well behave a little out of character and be far more understanding than not knowing and wondering why she was not herself.

Take each day as it comes and enjoy the good days and tolerate the bad ones. Hopefully it will be some time before the bad ones come especially if your Mum is able to go about her usual business with just a little help from those around her. My husband managed to continue to run his own business for 4 years with a bit of help and using note books in place of his damaged brain.

Take care,


Jay


Sent from my iPad using Talking Point mobile app
 

creativesarah

Registered User
Apr 22, 2010
9,635
0
East Hunsbury Northamptonshire
Take each day as it comes and enjoy the good days and tolerate the bad ones. Hopefully it will be some time before the bad ones come especially if your Mum is able to go about her usual business with just a little help from those around her. My husband managed to continue to run his own business for 4 years with a bit of help and using note books in place of his damaged brain.

Wow Jaymor thanks for that it's soooo encouraging and very wise words

Welcome candlelight

Sarah
 

Candlelight 67

Registered User
Nov 4, 2013
167
0
West Sussex
Thank you Jaymor and Creative Sarah.

You are quite right take one day at a time. I spoke with my Mother this morning and she is keen on starting the pills today so I will go and get the prescription filled later today. This is good news. And it is great to hear that the medication works. My Mother will be taking Donepezil. Its the list of side effects that are so off putting.

I rather stupidly read all the information from the clinic yesterday and am completely overwhelmed. I will highlight some things for my mother but must go extremely gently.

Thanks again for all your kind words

Candlelight 67 :)
 

Linbrusco

Registered User
Mar 4, 2013
1,698
0
Auckland...... New Zealand
My Mum 72 has recently been diagnosed with mid stage Alzheimers.
Greatly impaired short term memory, not able to cook, bake, knit, read books, do her jigsaw puzzles. All the things that require concentration, judgement, reasoning, problem solving etc. She is a bit wobbly on her feet also.
Other than this she is still fine with showering, dressing, light housework and although often saying things like " I must be away with the fairies" I must be going off my head" and " Why don't I remember" if you mention anything about her failing memory, to her its just old age, and she forgets things but remembers them later.

She has recently had an ECG and j have a prescription here for Donepezil also.
The side effects do concern me. Mum has bowel issues due to surgery back in January for early stage bowel cancer. Its taken months to get her eating right, her bowels working right, and for her to gain weight.
The main side effect of nausea, tummy upsets etc I hope will not eventuate :(
The other problem also is, that Mum will ask what the new medication is for.
If I say its for her memory, she will get anxious that she has some other new illness or condition ( she also has a form of Leukemia) she also gets anxious about taking tablets.
At the moment she only take a total of 3 a day but to her its a lot.
I have decided I will have to lie about it, and monitor any side effects.

It really is a case of one day at a time.
Mum has good days and bad days.
 

Candlelight 67

Registered User
Nov 4, 2013
167
0
West Sussex
Hello Linbrusco

Sorry to hear about your mother. My mother is also wobbly on her feet and does no cooking. The list of side effects for donepezil does look horrible i hope it will be helpful for your mother. As it is prescribed its worth a try I would hope they have taken all the other factors in to consideration.

I have just left my mother and am hoping she will start on the medicine tonight. We have just come from the Gp who says her sodium levels are quite low. The visit was for breathelessness. Its never just one problem is it?

Candlelight 67
.
My Mum 72 has recently been diagnosed with mid stage Alzheimers.
Greatly impaired short term memory, not able to cook, bake, knit, read books, do her jigsaw puzzles. All the things that require concentration, judgement, reasoning, problem solving etc. She is a bit wobbly on her feet also.
Other than this she is still fine with showering, dressing, light housework and although often saying things like " I must be away with the fairies" I must be going off my head" and " Why don't I remember" if you mention anything about her failing memory, to her its just old age, and she forgets things but remembers them later.

She has recently had an ECG and j have a prescription here for Donepezil also.
The side effects do concern me. Mum has bowel issues due to surgery back in January for early stage bowel cancer. Its taken months to get her eating right, her bowels working right, and for her to gain weight.
The main side effect of nausea, tummy upsets etc I hope will not eventuate :(
The other problem also is, that Mum will ask what the new medication is for.
If I say its for her memory, she will get anxious that she has some other new illness or condition ( she also has a form of Leukemia) she also gets anxious about taking tablets.
At the moment she only take a total of 3 a day but to her its a lot.
I have decided I will have to lie about it, and monitor any side effects.

It really is a case of one day at a time.
Mum has good days and bad days.
 

FifiMo

Registered User
Feb 10, 2010
4,705
0
Wiltshire
There is no need for your mum to know or remember her diagnosis and there is a danger as things progress that she will turn on you with all sorts of accusations. There is a lot of fear around the D word and your purpose going forward is to eliminate fear and stress as much as you can. As new challenges arise you help her by finding solutions. Ways of working that she can manage within her limitations. The diagnosis serves 2 purposes really (1) it is a gateway for access to medication and (2) it is a gateway to support services as things progress and her needs increase. Beyond that there is no need for her to remember anything. If you are having memory problems in particular every time you remind her or point something out, it can be like hearing it for the first time over and over again. My mother just never mentioned it so neither did we. We just toddled along behind her finding solutions to her challenges until the day that she was no longer safe at which time we had to consider care homes. In fact, on rare occasions if she mentioned her memory was bad, we said 'nah, it is just old age' and she was content with that. It really is about keeping things as calm and stress free and light hearted as possible.

Fiona
 

Candlelight 67

Registered User
Nov 4, 2013
167
0
West Sussex
Side Effects of Donepezil Hydrochloride

I don't know whether I should start a new thread or not. My Mother has been taking her 5mg Donepezil Hydrochloride tablet since Thursday evening. For the last two days she has had a sort of stomach cramp which has gone off after she had a lay down. Today she has woken feeling very confused with a stomach ache and not wanting any breakfast. She also complained of a headache. The stomach ache wore off.

I was just wondering whether this is normal for someone starting on the drug or should I be concerned and ring the Memory Clinic or GP? She is talking fine and able to walk around. She even got up and made her own lunch but was going back to bed. My Mother is the sort of person never to ring the Doctor. I am putting all this down to starting on the tablets. Should I be worried?

Candlelight 67
 

loveahug

Registered User
Nov 28, 2012
1,071
0
Moved to Leicester
it doesn't suit everyone, mum had to come off it as she experienced all sorts of side effects. We persevered for a couple of weeks and then had a telephone conversation with the consultant who agreed we should drop it.

The important thing is to keep a diary so you can discuss it properly with the doc.

Best of luck x
 

Candlelight 67

Registered User
Nov 4, 2013
167
0
West Sussex
it doesn't suit everyone, mum had to come off it as she experienced all sorts of side effects. We persevered for a couple of weeks and then had a telephone conversation with the consultant who agreed we should drop it.

The important thing is to keep a diary so you can discuss it properly with the doc.

Best of luck x

Loveahug thanks for your reply. That was so reassuring to hear. I will keep a note of all the odd side effects and contact the Memory Clinic. Tomorrow if she is the same.

Was your mum prescribed anything else? These drugs seem very powerful.


All the best

Candlelight 67
 

loveahug

Registered User
Nov 28, 2012
1,071
0
Moved to Leicester
Hi again

We went back to see the consultant who then put her on Ebixa (memantine) which seems to have reined in the worst of her confusion and distress, although it is combined with a pretty strong dose of Prozac too. She has been depressed since Dad died in 2008, they had been married 64 years, but the AD seemed to make it much worse, she was crying all the time. At the moment she is the happiest I think she can be, considering she wants to be dead. A contradiction I know.

Your mum stands a chance of improvements as she has you on her side, the rest is trial and error.

Best wishes x
 

marsaday

Registered User
Mar 2, 2012
541
0
Mum was very sick on donezipil so stopped it after a few weeks. She was at home at the time with me trying to supervise medication as they were refusing carers in house. Half the time she was hiding it or taking god knows what else instead. Then when the dose was upped she was violently sick. This happened several days in a row an hour or 2 after taking the tablet so it was clear what had caused it and she couldn't go to her day centre-so I got it stopped pronto as the day centre was an absolute god-send and she loved it.

I have read though that if she had been introduced to it properly and gradually she may have tolerated it. But for us it wasn't worth trying again-especially when you read that for a lot of people it has little effect. She started memantine several months later and tolerated it well though that was after we had put carers in place to supervise meds. Don't really know if it's had an effect though but over a year later she's still on it in the nursing home.
 

marsaday

Registered User
Mar 2, 2012
541
0
Forgot to say that on the very first night of taking her donezipil my mum told me she was up all night with horses galloping about the room and she wasn't taking it any more as she knew it must be the tablet. She had never had that experience before so I tended to agree with her.
 

Candlelight 67

Registered User
Nov 4, 2013
167
0
West Sussex
Hi again

We went back to see the consultant who then put her on Ebixa (memantine) which seems to have reined in the worst of her confusion and distress, although it is combined with a pretty strong dose of Prozac too. She has been depressed since Dad died in 2008, they had been married 64 years, but the AD seemed to make it much worse, she was crying all the time. At the moment she is the happiest I think she can be, considering she wants to be dead. A contradiction I know.

Your mum stands a chance of improvements as she has you on her side, the rest is trial and error.
Best wishes x

Hi Loveahug

I am only just checked again and saw your reply. I am so glad your mum is the happiest she has been. It gives me hope.

I agree with the trial and error. We have been back to the clinic yesterday and advised to take in the morning. Again this has confused her. I have now had to take the packet away because she forgets she has already taken one. We are due back at the clinic just before Christmas. She has been particulary bad today.

Thank you so much

Best Wishesx

Candlelight 67
 

Candlelight 67

Registered User
Nov 4, 2013
167
0
West Sussex
Forgot to say that on the very first night of taking her donezipil my mum told me she was up all night with horses galloping about the room and she wasn't taking it any more as she knew it must be the tablet. She had never had that experience before so I tended to agree with her.

Hi Marsaday

Thank for sharing your experiences. And am glad you managed to get your mother off it and onto something else.

My mother's dose has been changed to the morning now because of the restless night. I only learnt today that she has had bad dreams. Who knows maybe she had galloping horses too. She keeps a very repetive diary which she says helps her remember. To me it is very confused.

Thanks again

Best wishes

Candlelight 67
 

Linbrusco

Registered User
Mar 4, 2013
1,698
0
Auckland...... New Zealand
Tonight I have started Mum on 2.5 mg, which Mum is to take every night for 3 weeks and then increasing to 5mg.
In the end I had to tell it was aspirin. She used to be on a daily dose of aspirin a few years ago, and as Dad is on it, it was the only reason i could give her that she accepted.
I am off work for a week, so will at least be on hand to monitor how she is.

Thanks everyone for the info.
 

Candlelight 67

Registered User
Nov 4, 2013
167
0
West Sussex
Giving Donepezil pills

Hi Linbrusco

I hope it is going alright for your Mum on the 2.5 mg.

My Mother is on 5mg.She took one this morning then had a sleep and woke more confused. Taking it in the morning was on the advice on the consultant. Today I bought a rather snappy looking pill box with the days of the week on the lid and a rather nice button to press to open. Each box is a different colour. I am going to see if my mother manages to take her pill. She loves the box. She also does not like taking the pill. We are back with the nurse on the 19th I do hope they don't increase it. I have a feeling they will.

Good luck

Candlelight 67


Tonight I have started Mum on 2.5 mg, which Mum is to take every night for 3 weeks and then increasing to 5mg.
In the end I had to tell it was aspirin. She used to be on a daily dose of aspirin a few years ago, and as Dad is on it, it was the only reason i could give her that she accepted.
I am off work for a week, so will at least be on hand to monitor how she is.

Thanks everyone for the info.
 

Concerned_Son

Registered User
Dec 11, 2013
15
0
West Sussex
Hi Candlelight 67, sorry to hear your news, I hope you don't mind me joining your thread, but my 79-year-old mother was diagnosed with Mild Alzheimers yesterday afternoon and also prescribed Donepezil, so it looks like we are both on the same journey, having started it at a similar point in time, and in the same county!

Bit scary, isn't it?

I would also say hi to those that have responded so far, and those that may offer further advice as the thread develops, and a big *hug* to everyone that is dealing with this.

I picked-up the Donepezil on the way home from the memory service and she took the first 5mg last night, so I am not sure if she will have problems with side-effects yet.

I do, however, have one question at this stage concerning Donepezil, one I am sure there's no definite answer to, as it must vary from one person to another.

But, I am puzzled by the fact that the doctor said it should halt the Alzheimers getting any worse for 5 years or more, and that he has some patients on it for 10 to 15 years with good results.

Yet, on the Alzheimers Society website (as a new member I can't post the link, but it's on the 'What is Alzheimer's disease?' page), it says "These drugs are not a cure, but they may stabilise some of the symptoms of Alzheimer's disease for a limited period, typically 6-12 months or longer."

Now, there's one hell of a different between 10 to 15 years, which was very reassuring, and 6-12 months, which scares the hell out of me.

Is there anyone here with experience of long-term use of Donepezil and how successful it is over a longer period of time?

EDIT:

I don't now how the hell I missed this:
It worked very well for my husband for at least 4 years.
..even on just skim reading the thread the first time, I guess my own head is a bit all over the place at the moment, this is certainly helpful to know, thanks jaymor.
 
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