My mum has not been diagnosed, and is not on any mediaction, I am fighting like mad to get her some help.  I am so glad I have read this today, because today I cried because I felt so alone, and that no one else knows what it is like.  I have been looking after her since she had mini stroke when i was 11, now I am 40 and I think she has vascular dementia, but no one wants to know, because she lies and tells the Docotors she has no problems.  She never knows waht day it is, and phones me in tears, she is afraid of everything and has fell out with all her friends.  Is this the usual way it goes?

Hello, creepingj, and sympathy

   Your mum had a min-stroke when you were 11, so that was 29 years ago?

   With mini-strokes, or TIAs (transient ischaemic attacks) as they're more accurately described, there is an underlying condition i.e. damage to the cardiovascular system particularly in the brain, and these TIAs occur at any time, often go as quickly as they came, but the net effect is that there is a tiny bit of brain damage each time.  Your mum needs to be properly diagnosed and usually that will mean a brain scan as well as full history taken.

   There's a friend of ours at church who had a stroke at New Year, she has now apparently made a full recovery (she's nearly 90, bless her!) but while she was in hospital she had a brain scan which revealed that she had already had several 'mini-strokes' or TIAs which she knew nothing about.  They can happen during sleep and the person knows nothing.  She appears to be fine at the moment.

My late first husband had a stroke and then mini-strokes, he also had coronary heart disease which is all part of the same thing, died aged 58 of yet another 'coronary' of which the first one occurred at age 38.  We had another friend at church who had mini-strokes and he developed vascular dementia over a relatively short period of years.  What I'm really trying to say is: the scenario can be quite different in different individuals even though the underlying problem is the same i.e. damage/disease to the whole cardiovascular system.

   I would suggest that you talk to your Mum's GP and state the problems just as you've stated them here.

   'Listen again' to You and Yours on BBC Radio 4 yesterday.  Very relevant.  http://www.bbc.co.uk/radio4/youandyours/items/01/2007_26_thu.shtml

HTH, Margaret

Thankyou Margaret, I will have a look at the above.  She did have a brain scan two years ago, and all the doctors said was that it showed old damage, but gave no details.  I will contact her Doctor and try to get to the bottom of this.

Dear Creepingj,  I know how you feel.  My mother has Alzheimer's not vascular dementia and was sectioned in December '07.  In the early stages of her disease she would not accept that there was anything wrong.  I'd visit her doctor with her and she would put on an Oscar winning performance of a healthy old lady.  It took me a long time before I managed to persuade her to visit her GP again.  This time instead of focussing on her memory problem we talked about her health in general.  She was suffering from dizziness and bad arthritis.  I asked the GP if she could be referred to the local hospital (King's College Hospital in London) for tests.  He agreed and she was seen in an old age clinic.  They ran all sorts of tests rather - like an MOT and asked lots of general questions about her health!  She had a brain scan, an ECG, blood tests, x-rays all sorts.  They were very thorough.  Finally she admitted to being worried about her memory.  She was then referred to the Memory Clinic and, following the results of tests there, to Old Age Psychiatry.  It must have taken 6 months of going back and forth for appointments before she finally became an outpatient being treated for early dementia.  Strangely enough her brain scan had been completely normal!

Don't give up trying.  You may have to try a bit of subterfuge to get your mother referred to hospital!  Your mother is probably scared to admit her fears.  My mother was afraid that she would not be allowed to continue living independently.  In fact she was still in the community long after it was safe for her to be living alone.  My mother still won't accept her diagnosis.  She is in the advanced stages now.  It is a terrible disease.  All we can do is try to support our family as best we can.  Don't feel guilty either.  A friend of my mother said to me "You won't be fit to look after anyone, if you don't look after yourself".  We're not super human.  Do the best you can and don't be hard on yourself.  I think that I have spent the last few years with an almost constant sense that I should be doing more.  My mother was very difficult and I was her only support.  The strain was enormous and with a husband and three children of my own, at times it felt unbearable.  It has been like a gradual bereavement.  My mother remains fit and healthy physically but mentally there is very little left, of the person that I once knew.

Good luck and keep strong.  You are not alone.  If you are in the UK try the Alzheimer's Society helpline.  They are fantastic.  They helped me through some difficult times with practical advice and kind words.  I'm now fundraising for the Society.  I'm doing a sponsored trek along the Great Wall of China with a friend in September.  We've managed to raise over £5,000 between us.  It has been very cathartic doing something positive, in memory of the person that my mother once was.

Best wishes, Philippa

Hi again Mumof3, I know it's been a while since your original post, but I've returned home this evening to South London with my daughter after a day visit to my mum in Hemel Hempstead.

Anyway, what I really wanted to say to you was that I TOTALLY understand the pressure of having your mum making it 'crystal clear' that she wants you to look after her and will not go into a home (and also the self-pressure of feeling that is what you want to do for her); my mum was exactly the same. My mum had nursed her own mother in my parent's house until her death from cancer many years ago and it had been a thankless task; my mum was my grandmother's least favourite daughter, but was the only one who cared, despite the verbal abuse that she still suffered from her mother,almost up until her death. She even used to carry her mother to and from the loo as there weren't carers to help or care aids, such as comodes  available to borrow back then as there are today. My mum told me on many occasions that she would NEVER go into a home and said she thought that I didn't want to bother with her and just wanted to get rid of her, which was ANYTHING but true; had I the space (-I live in a tiny 'two-up, two-down' steep-staired cottage with my daughter) -and a ground floor loo, I'd gladly have had her live with me to make me feel less awful than I do now. I have spoken to many people; one of my very close friends is a clinical psychologist and she said "you cannot look after your mum at the expense of your own health and what about your daughter?" Although I knew she was right, I still couldn't accept that I wouldn't be able to look after my mum myself until she became a danger to herself; falling regularly, wandering at night (as well as the phone calls), hallucinating and being so forgetful that I worried that she'd leave a cooker ring burning or scald herself with the kettle. In the end the social services team sort of took it out of my hands. They said that my mum needed around the clock care, which, unless you can afford to pay for privately is only offered in care homes. I NEVER in a million years thought my mum would settle in, or even accept living in a residential care home (the one she's in has some people with dementia as well as ordinary elderly residents -23 people in total). Both my mum and my father (who also died from vascular dementia in 2004) always said that they never wanted to end up in homes. I still battle daily with the guilt and probably always will, but I know in my heart that I could not have managed to care for her around the clock; I'd have ended up becoming ill and then who would care for my young daughter? My mum was initially told that she could go for a trial period (when she was discharged from hospital) to see if she liked the home (this wasn't a lie; they did a 6 week assessment to see how she coped and to make sure that they could provide her with the care she needed as well) which, amazingly she agreed to.

 Please don't think that I'm in any way trying to tell you what to do, but you HAVE to think of yourself and your family too and I have to say that it doesn't get any easier. I have seen my mum deteriorate a great deal since my dad died, as well as becoming more demanding and 'emotional' -both easily upset or irritable and confused and the hallucinations are almost constant. I hope that somewhere along the difficult journey you're on (like many of us) that you can consider yourself as well; your needs and health are also important. Take care and best wishes xx

Hi, I just found this site and thought I'd join in.  I am married with 3 very young children.  My mum was diagnosied with Vascular Dementia back in November 2005.   I can track things back to around 2002 when she started hallucinating and hearing voices in her garden during the night.  This went on for months and months before I realised something wasn't right.  Mum was always so sharp.  She then moved into sheltered accommodation during 2004 and the problem moved with her.  She started having home carers come in to assist with personal care etc and she is now on a full care package.  Around February/March 2005 when I was heavily pregnant with my youngest, the GP finally prescribed her Sulpirde for a months trial.  After a month, there was no change in her.  The dosage was increased from 200mg to 400mg and it floored her completely.  She walked like a zombie, shuffled,  became incontinent.  Then when the Old Age Psychiatry team came in to see her, they also prescribed her Mirtazapan on top.  This then left my mum sleepy a lot of the time but by this time the hallucinations had well gone.    A brain scan was done and the results showed that at some point she had suffered a stroke but would have known nothing of it.   At my request to the CPN, the medication was gradually withdrawn as I had been complaining bitterly about her changing from being activly social to a virtual recluse except on her odd visit to me and the days she went to day care.   When she was finally off all these drugs, there was a vast improvement in mobility ( she had used a zimmer for a while) and was much more alert and more importantly, the halluncinations were gone and never returned.  However, the one thing that was obvious was her speech which was somewhat slurry and on the odd occasion, she can hardly get words out at all.  The CPN discharged her from Old Age Psychaitry as she was faring pretty well.   However, during the last year she started ringing me up loads of times over trivial matters and became forgetful of conversations.   She fell and broke her wrist in March and spent 3 weeks in hospital for rehab.   After that I had to rerefer her back to the Old Age team and a consultant came out and prescribed Quetiapine, a dose of 25mg each night at bedtime.   I was told it was a sedative, not a sleeping pill but it makes her sleep all night but drowsy during the day.  Since she's been on this, she hardly rings me except for the odd bit of shopping she wants.  I hardly hear from her, all the anxious phone calls have stopped although she never ever rung in the middle of the night.   She fell and broke her hip 5 weeks ago and after surgery and 3 weeks in rehab she was discharged to her own flat.   Sadly this weekend, it looks like she has had an extended TIA and her mobility dropped to zero.  She apparently fell 3 times over the weekend and had to be assisted by a carer and someone else to get her back on her feet.  OT and Physio were sent for and they then rang the GP who came and re-admitted her back to hospital for further rehab.  She is in a stroke/rehab ward which used to be the Geriatric ward before care in the community was born.  I have been told she will be in for a couple of weeks and physio will work on her.  Failing this a case review with everyone will be called to see what can be done.  Its a horrible illness.  Im an only child and my mum is a widow.  I find it hard to cope with at times as my children are so young and need me more than she does.  I'm not sure if I'm a fan of care in the community or not.  I resent the interference of care managers/social workers as I do not see what a terminal illness has to do with them but I have been told not to be bullied by them at whatever cost and I wont.  Thanks for listening.

Hello Lassie
   Can I just comment on one tiny part of your Mum's story above.  She fell and broke her hip 5 weeks ago and has had surgery for it - which surgery? Was it hip replacement?
   It's just that I have some experience of this kind of injury.  I have hip replacements and on 12th June this year I fell over and fractured my pelvis (just going for a coffee at a BP petrol station, tripped on the edge of a granite pavement!!) If I hadn't already had a hip replacement I would have fractured my hip, but the impact then moves along to the next weakest spot - the pubic rami.  Anyway.....that was 9 weeks ago and I'm STILL getting over it, only just got from 2 crutches to 1 and then to walking with aid of a stick some of the time, walking without support some of the time.  I'm still not walking very much, just about up and down the garden path and in and out of the car.  When I had hip revision surgery 18 months ago I would NOT have been able to take care of myself alone at home.  My husband has been absolutely fantastic.  Following the fracture of pelvis it was about 6-7 weeks before I even so much as made a cup of tea.  I just cannot conceive of having to cope all alone. 
   I am gobsmacked that you write 'after surgery and 3 weeks in rehab she was discharged to her own flat'.  This is a lady who's 'drowsy' from the medication she's taking - how is she supposed to cope alone in a flat? Words fail me.
   Best wishes, Margaret 

Hello Margaret and thanks for your reply.

My mum had a pin and plate put into her right hip.   It was not a hip replacement.  Approx 10 years ago, she had a full hip replacement on her left hip.  5 years ago she had a full knee replacement on her right knee.   After all this she wasn't quite so able to get around but was still driving her car until approx 4 years ago. 

She has been getting around the last 2 years with the help of a zimmer frame.

She is on a full home care package with carers coming in 4 times a day to assist with washing, dressing etc etc.  My mum doesn't do much else all day, sits and watches TV or listens to radio.  She does not want to move into a home and as she is still fairly mentally alert, I as POA would not go over her head to do the nasty to her.   Incidentally, her memory was tested upon admission this week and she scored 29 out of 30 for the mini tests.   Remarkable and she passed the other tests with repeating back 3 words at various points. 

Quetiapine doesn't seem to have any wanted side effects for her or none that I've noticed.  A 25mg dose is small I've been told.

 

 

Hi lassie
    Thanks for reassuring me that your Mum has a full home care package, carers coming in 4 times a day.  What happens about meals?
   I had to smile a little bit, when I was in A&E having been diagnosed a fractured pelvis.  One doctor wanted to admit me for 'assessment', another one came along and said no need for that, go home after seeing the physios.  Physio duly came along with a pair of crutches, ascertained that I could walk on them and said OK.  She had a colleague with her, an OT, who asked if I wanted him to organise some help for me at home.  I asked 'What kind of help?' He had in mind the kind of thing your mum has, someone to come in and help me to get up, washed and dressed etc.  I said 'I don't think so, thank you very much!'
   For a few days my husband helped me in and out of our step-in shower and then I could do it alone, with him listening in case I needed him.  I couldn't imagine having to stay in bed until someone came along to 'get me up'. 
    Thank God for the computer, we use it for banking, shopping, all kinds of things, and being less mobile it really comes into its own.  I am just downloading 'talking books' to listen to - I have difficulty reading until I get the cataracts done, and when one is done and not the other I know I'll have difficulty.  I've just sent for an iPod for myself so that I can sit in the garden and listen.
   Best wishes

Margaret, mum somehow manages to get her own breakfast.  I've seen evidence of marmalade on the worktops and sprinkles of cornflakes on the floor.  Lunch times, well the sheltered accommodation she lives in has a meal service whereby residents go down to the communal lounce and have their lunch.  Mum was doing this until recently.  A carer would assist her down to the lounge and a staff member from the meal service would escort her back to her flat.  Recently though, her home carer has been collecting her lunch and bring it directly to her flat and she sits with her until she's finished.  At teatime, a home carer home in to prepare tea.   Mum no longer makes tea or coffee and has cold drinks instead. 

Hi Mumofone

Thanks for writing again.  Sorry, it's taken me so long to reply, but as you well know, we have less and less time for ourselves while caring for someone with this disease. 

I know what you are saying, and I am trying to be easy on myself as well - along with all the guilt. 

My main problem is not when Mum is angry, but when she cries - I can't bear that and it tears me apart.  As the nights are suddenly getting darker much earlier, Mum has started crying because she is 'afraid of the dark' and doesn't know where she is.  She often doesn't recognise her own house and thinks she is all alone in a strange place.  There doesn't seem to be any answer.  I know there are care packages during the day, but what are we supposed to do at night?  (It has been suggested that I go to a support group for carers, but that won't help me to settle her at night when there is no-one else around!)  Everyone means well, but we are going through it alone nonetheless.

I hope that one day Mum will be able to go into a care home, but then how do you know which one to choose?  We have a care home for dementia patients locally, but I was horrified to see how severe the dementia was when I looked around - Mum wouldn't want to be with them because she thinks she is fairly 'normal'.  Other homes tell you there is a long waiting list and, of course, most won't even take elderly people with dementia.  Yet another problem to face.  I wonder if you had trouble finding the right care home, as you have to travel from south London to Hemel Hempstead?

There's just not enough help out there!!!

Thanks again for your support, Mumofone, and everyone else.  Take care of yourself too. xx

 

Hi, my mum was diagnosed with vascular dementia last year.  I feel that I am alone because my brother "can't handle it" but has stated that he won't go to court if needed. I now feel very lonely, even though my husband is extremely supportive.  She too forgets very quickly.  Her house looks like a bag lady lives there.  All we can do is go when she's not there and clean and clear away her rubbish, food, (she buys so much which goes rotten, and believe me she can buy quickly! .  She won't move, which is fine, but won't take help either.  "Leave me alone, I'm happy, stop interrfering."  or "I'm happy" seem to be commom reply.  Unfortunately she now has rats not just mice, and I'm going in when I know she's not there, to clean.  My brother couldn't be bothered to come and see her on her birthday in November or Mothers Day today.  I have never had a good relationship with my mum, my brother has been the blue eyed boy, but it's your mum, you can't ignore that. I just want her to have a good quality of life, like my dad planned.  I just don't know how to help her any more.  If you talked to her, you wouldn't know that there was a problem, but I won't let my mum live in squaller,  I am getting devious, popping in when she's at the harir dressers, which is funny, because the rest of her is filthy, or at social services   My Dad provided her with a great way of life, and she should be living it.  My brother, I feel , thinks the quicker she goes the better, I just don't know how to help any more.  I go in and clear rotten food, pick up anything she may trip over,  any ideas will be read and qppreciated.  Any ideas that can help her have a comfortable life would be appreciated.  Thanks Su

Maybe it would better for everyone to try to get her into a drug rehab treatment center and there she would be taken care of.

Hi, I was researching the drug Quetiapine as it's been recommended for me and I came across your posts.  I understand that you are finding it very difficult to cope with all that is going on for you.  I want to recommend a place to you where you can confide in members with your own worries and stresses and receive support and well wishes to help you through.  It's an MSN group called "Sanctuary and support" and it's a great place.  It's very well managed and monitored in order to make sure that members can feel safe to express their true feelings.  The members are all very supportive of each other despite a varying set of circumstances which led them to the group.  The manager is also extremely knowledgeable about many mental health issues and medication.  I would recommend that you have a look with a view to joining, there's no pressure to post regularly, so you don't have to feel that it is taking up a lot of your precious time.  If you apply just say "Itty" recommended the group to you.  Good luck

I will have to look into that..