Mum's memory is getting worse.  She has now been seen by a specialist who believes she could be suffering from vascular dementia.  She becomes very frightened and agitated particularly in the evenings when she is alone and rings me constantly.  She asks the same questions and I give the same answers, but as soon as she puts the phone down, she has forgotten the conversation all over again.  It is distressing for both of us.  The specialist has prescribed a drug called QUETIAPINE to make her feel calmer, but I have seen bad reports about this drug on the internet and I have read that it should not be used for elderly patients with dementia (it is often used, apparently, for schizophrenia).  Does anyone know about this drug and whether it is commonly used for dementia?

I am finding all this quite a struggle and often don't know which way to turn.  My heart feels heavy with grief at times, knowing that I am losing my mother, and it's so hard to concentrate at work.  How does everyone else manage?

I would appreciate any words of advice or support.

Hi Mumof3

    I fear I have no advice to give you, although my heart goes out to you (and your Mum).

    I used to work in nursing homes but that was 10 years ago and I'm not familiar with the medication used now.  The medication you describe is to 'make her feel calmer'.  So it's a sedative, a tranquilliser of some kind?

    Would it be possible for you to ask the 'specialist' who has prescribed this medication what his/her reasons were for prescribing it? 'Vascular dementia' implies a lack of blood supply to the brain - is there any medication which could improve that blood-supply?  In the field of alternative therapies there is Ginkgo Biloba which is said to improve blood supply.

   Like you, I 'googled' for Quetiapine and found a long list of possible side-effects - 'if this/that/the other occurs then contact your doctor immediately' - but for someone like your Mum, would she know and would she be able to do that?

   There is no answer to her being alone in the evenings, if she lives alone, is there?

   Sorry not much help - but sympathy.

   Margaret

 

Hi Margaret

Thank you for your reply - and for being so kind and supportive.

I am going to talk to the specialist again to ask those questions.  He seems to think that the vascular dementia could be caused by mini strokes that Mum has not even been aware of.  They are doing all they can to improve the blood supply as Mum has been taking Warfarin for the past year, following an operation to remove a blood clot from her arm.  I guess we will just have to take one day at a time. 

Thanks again.

Hi mumof3

   It would be a good idea for you to ask the specialist if your Mum could have a brain scan.  A friend of ours recently had a stroke - she's home now, but while in hospital she had a brain scan and it was discovered then that she'd been having mini-strokes (called TIAs - transient ischaemic attacks) before the main stroke.

   It's not a good prognosis long-term, I'm afraid, and harrowing for you. 

   Very best wishes

   Margaret

Hi Margaret

Yes, the specialist has in fact arranged for a brain scan so that he can see if Mum has been having these mini-strokes.  I hope we won't have to wait too long.

With thanks and best wishes

Hello, I really feel for you - my mum died of vascular dementia and a chest infection on the 6th February.  She had had a stroke about 16 years ago but managed brilliantly, she moved to be nearer to me in Bristol and lived on her own in sheltered accommodation.  They are rebuilding her sheltered accommodation so my mum moved into a Residential Home of her choosing as she used to go there once weekly.  From then on it started - she was getting up in the night packing her clothes etc., and generally just been agitated at night, she kept falling over and hurting herself and has spent most of the last two years in hospital.  After these falls she would seem to be back to normal and we would think she is getting better, but no, it would start up again and it would be twice as bad as before.  It was quite a while after that we had the diagnsis of vascular dementia - she had been having tiny strokes that neither us or my mum had noticed.  I don't remember which drug my mother had to quieten her down but I do remember she was started on Temazepam which I thought was making her unstable and falling over - she was very restless not wanting to stay in bed and asking for the toilet every 5 minutes - they would take her but she was still incontinent.  In the end I could no longer take my mother to the toilet as it was too dangerous - it needed to carers to do it.

I spoke to a doctor and asked what the prognosis was and he said that she would not get better but would die of a chest infection, kidneys packing up or something like that, as it was she kept getting chest infections and had three in one month the last one ending her life

I know exactly what you are going through and if I can be of any help whatsoever please contact me.

All I can say is that my mother is not suffering any more as I believe she was greatly tormented by her condition. 

Many thanks for your reply.

Mum has now had the scan and there is no evidence of any stroke, so they assume it is Alzheimers.  She has good days and bad days (mine are mostly bad) and tonight, for the first time, she didn't know who I was.  (I felt sick.)

I hate to see her suffer (yes, she is tormented) and I'm fed up with being so miserable - and making everyone else miserable too.  How can you possibly be cheerful when your heart is breaking?

I'm so sorry for your loss, but as you say, your mother is not suffering any more.  It's all so cruel.

Thank you for your kindness and understanding.

Dear Mumof3,     I really felt sad reading your thread.  I am also a mum of 3 with a mother suffering with Alzheimer's.  My Mum was first assessed as likely having Alzheimer's about 5 years ago.  She had memory problems but was managing to cope at home.  She was put on DONEPEZIL, known comercially as ARICEPT.  It is one of the recent memory enhancing drugs.  It can't recover lost memory function but it enables the existing memory to function as well as possible - as far as I understand, but I'm no pharmacologist!  I believe it did slow down my Mum's decline.  Last year things got much worse.  My Mum has been in hospital now since December.  She's now on QUETIAPINE & DONEPEZIL & an anti-depressant.  Q is an anti-psychotic (not an anti-depressant) to treat delusions and hallucinations.  My Mum was having both.  My mother was very agitated, seeing lots of people who weren't there and having paranoid ideas.  The drug has helped.  Do your Mum's symptoms sound similar?   Help no more space here.............!

Hello again,  Just thought that I should pass this piece of advice on.  Alzheimer's is a very cruel disease.  It robs you of the person you love slowly.  You can't do enough and you feel guilty that you are unable to.  My Mum's friends said to me "You still have your life and you must live it for the sake of your children, your husband and yourself.  You can't look after anyone if you don't look after yourself."  I needed to hear this.  I felt guilty that I could not be with my Mum 24-7 and I felt miserable when she rang all the time.  It did help me to come to terms with the disease.  You feel helpless and frustrated.  I decided to take more of an interest in the past and have unearthed lost family through my mother's memories!  Science can't halt the illness yet, only manage the symptoms so time is precious.  Make the most of your Mum now, but look after yourself too!  You never know you may find something positive, as I have.  Take good care of yourself and your children.  They need you too.  Good luck.

Hi Philippa

Thanks for taking the time to write to me.  Yes, it does all sound familiar.  I too feel guilty for not being there 24-7.  Is it normal for someone with this disease to be worse in the evenings and at night?  In the mornings, Mum is just 'normal Mum with short-term memory loss', but some evenings and nights she is so bad that she thinks I am her sister instead of her daughter and that I live miles away instead of in the next street!  (Told me she hadn't seen her daughter in months!)  I really don't know how to handle it, especially when she once asked me how old I was to try to work out if I was her sister or indeed her daughter!  The next morning, she is always back to normal again and, as far as I know, remembers nothing of the night before.  Mum also hides things and I have to find them or she gets even more agitated.  I have not told Mum that she has Alzheimers (even though she asks me if she is ill) as she wouldn't be able to handle it and would go to pieces - I wonder how other people deal with this dilemma. Mum wants me to give up my part-time job to look after her, but we need my salary - and my family needs me (although I think I need them more at this time).  I've been told that social services could come in to help out, but the time that I really need help is the evenings when I am so tired and can't cope with her questions and demands (and phone calls).  The doctor has now prescribed the sort of drug you mention, but we don't have it yet so I don't know which one it is.  I've been told that it might make her feel nauseous and the Quetiapine already makes her feel so sleepy.

Anyway, thanks again for your support and advice.  It's good to know that I'm not alone.

Hi Mumof3,

The system wouldn't recognise me, so I've reregistered, but I am Philippa!

My Mum behaved in a similar way to your Mum.  She was far worse at night and used to call incessantly asking if her mother was alive.  She would get confused about ages too.  She had a delusion that she was getting married to someone from her past.  She would tell me that his granny had sent him over from Canada to propose to her.  She wouldn't accept that his granny must be dead by now.  She wouldn't accept the diagnosis of Alzheimer's either.  It is quite common that patients don't acknowledge the illness by name apparently.  It is horrible and really distressing for everyone.  You will find that as the disease takes its natural course your Mum will probably become less distressed.  Many of the things which muddle her now will become fact for her.  You may not be able to persuade her that something or someone belongs in the past.  I have found that reaching this stage is easier to deal with.  My mother believes that her mother is alive and visits her in hospital.  This gives her comfort, so I don't argue with her.  I don't play along with the fantasy either.  I usually try to change the subject, but I don't feel the same sadness that I once felt, because the delusion makes her happy.  Before the uncertainty made her anxious and agitated.  You will notice when things begin to change.  My Mum stopped telephoning me so regularly.  It was a relief at first, until I realised that she had started wandering.  Initially she would go on longs walks believing that she was going to meet someone.  She would find her way back okay.  The problem became a real concern when she started getting lost and would go wandering in the middle of the night.  She got picked up by the police on a couple of occasions and an ambulance on another.  Her neighbour often used to bring her home when he spotted her out and about in a dazed state.

Social services can do a great deal if your Mum is willing to accept their help.  My Mum refused all help.  The ringing at night was a serious problem for us.  You could try screening your calls if you have Caller Display on your phone.  We eventually disconnected our phone at night because my Mum was ringing at 3 and 4am.  She would ask the same questions over and over.  The Alzheimer's Society told me that if she was not remembering the conversation despite repeated calls then ringing wasn't going to help her or us.  If you are concerned that she may go wandering there are alarm systems that Social Services can install.  Your Mum has to wear a sensor (a pendant, I think) and if she leaves the house an alarm in your home would be triggered.  We didn't try it.  You have to be certain that the patient will cooperate and keep the pendant on.

I'm still puzzled that your Mum is on Quetiapine.  It has left my mother heavily sedated but she was very aggressive before it was prescribed.  I'm not happy about the drug at all, but I understand that she has been difficult to manage in hospital.  She was sectioned before Christmas, so things had got out of hand.  She wasn't safe at home.  I think that I was close to collapse myself with the stress and the worry of her illness.  It was good to know that she couldn't go wandering around London in the middle of the night anymore.

I'm rambling on a bit.  Please tell me how I can help you.  It is a very lonely position to be in.  I felt very isolated so I understand what you are going through.  The toughest part is accepting the disease itself.  Once you can do that you will realise that things will get much worse before they become easier for you.  The disease isn't static so do make the most of your Mum's lucid days even though you may feel drained by the days when she can't remember a thing.

Good luck and keep in touch.  Philippa

 

 I am sorry that I can't offer any words of advice but but having read the thread and felt your grief and just wanted to sympathise with your position and hope that the other replies helped. 

I am an only daughter and my parents' health is failing, though they look after themselves at the moment just about - I wonder what the future holds and how much time I will be able to give them.  My mum is particular is a very private person and would hate nurses etc coming into her home and she also has a fear of care homes having visited people in them herself and knowing that not all of them are the most wonderful places to be.  This makes it worse as I know I will have to try and find a solution when the time comes and I don't know if my partner (we have no children) would be very pleased if either of them had to live with us.  My situation obviously isn't as difficult as yours (at the moment, anyway) but I just wanted you to know that my thoughts are with you.

Hi
My mum is about to start taking Quetiapine tomorrow.  She has been on rispadone (sorry about the spelling) but the doctor felt that it was risky for her as it isn't advised for people who have had strokes.  Mum has been diagnosed with vascular dementia.
She had a fall in January and was taken to hospital.  Her condition deteriorated very quickly and she will never return home.  It is so sad for everyone.  She cannot accept being where she is - she wants to go home.  Since mum was diagnosed I had no idea how many people suffered this condition.  It affects all the family.  The guilt is terrible!
Thanks to all who tell their story.   It helps to read how others cope.
Deb

Dear Mumof3, you really are not alone. My mum has been diagnosed with dementia since January and has just started on Quetiapine as she suffers from really frightening hallucinations. The problem with all types of dementia is that it varies so much from person to person depending on which part of the brain is affected. The symptoms of your mum being worse in the evenings and at night is common with Alzhemers; It is called 'sundowning'  My mum was far worse in the evenings to begin with, but now she is hallucinating almost all the time, hence the need for the quetiapine. My mum also started phoning all her family at unearthly hours of the night/morning; she was living in a sheltered flat, but had a fall and broke her wrist, and ended up in hospital. She then went into respite care until a good care home was found (I liaised with the social services department  to do this). There is a really helpful website : http://www.csci.org.uk/  (the Commission for Social Care Inspection) on which you can look at reports about all registered care homes in the country and it helps to narrow down the search for a suitable one. I am a single parent of an 8 year old and I live in London, so I've been travelling up to Hertfordshire to see my mum almost every week-end and during the holidays since January . It has been exhausting, but I finally feel that she is in a really good home and is well looked after. I still worry all the time, but I think that is only natural. I now have to try to make a bit more time for my daughter who has had no choice but to be taken from hospital to home visiting her gran. I don't think there is any easy answer when it comes to finding care, we just do the best we can. Good luck and take care.

Thanks so much to all of you who have taken the trouble to reply.  I haven't checked this site for a while as Mum takes more and more of my time.  She has made it very clear to me that she won't go into a nursing home as she only wants me to look after her.  She has starting ringing late at night and it's becoming very difficult to reason with her - changing her mind about things every few minutes!  I don't know what the answer is and can only take one day at a time.

We have tried rivastigmine (Exelon), but it didn't agree with Mum and she was sick and fainting, so now she is only on the Quetiapine - which doesn't help that much because she is getting hallucinations and still being argumentative.

It's so nice to read all the replies and realise that there are genuine caring people out there, who are all struggling in the same way.

Thanks again for caring and taking the time to reply.