Hello. You don 't need much more introduction from me as you have probably read about me in 'About me'!
I do hope that this website is helpful to those who manage to find it. I was saying to a friend that I will know whether it has worked when someone sends a message from a sheep farm in New Zealand and someone in Canada replies with a little bit if help. In the meantime if you would like to share a problem or help resolve a problem then please join us on this website.

Hi, I'm Tricia and my husband has had dementia for at least 4 years but of course we didn't know that to begin with. Then I thought he was getting a bit awkward, or old as he is 9 years older than me, or maybe it was me who was getting awkward or, God forbid, old. Then maybe it was I who was ill, maybe I didn't love him any more, maybe he was under too much stress, then just maybe, it gradually dawned on me, maybe he had Alzheimers. When I finally admitted there was something wrong he was exhibiting compulsive behaviour with regard to computer use, hadn't had a real conversation with me for over a year, except of a pass the salt type, and was nothing like the man I married in 1965.

First I went to the councillor I'd seen when my sister was dying who was most helpful. Our own GP had just retired which didn't help much but I spoke to the new doctor then took my husband (F)along. We saw a consultant, F had MRI and SPECT scans and two one hour sessions with a psychologist but after that we seemed to fall out of the system. Fast forward one year when my sister-in-law came to stay. She insisted I get some support and help and promised she'd phone every week to check I'd done so. Better do as I'm told! I found the local Alzheimer's Society extrememly helpful and they suggested another consultant. After a few hiccups, due to consultant A being in another NHS area, we finally saw consultant B and several sessions with another psychologist. We now await a meeting with all concerned to perhaps finally get a diagnosis. This will be such a relief as the fear of the unknown is worse than the known. In addition if there is any treatment we will be able to start it.

Searching the net has led me to believe that F has vascular dementia like Jack as his symptoms don't seem to fit Altzheimers but then I'm not an expert in diagnosis, and there are many rare dementias, but with many ups and downs I'm slowly learning to deal with the situation.
I hope this is of some help and I will write again with some tips I have found have worked for me.

Hi Tricia.
Thank you for your message. I remember so well that time when I was in limbo awaiting the result of Jack's MRI.Part of me had fully decided that there was nothing really wrong, that there had been some terrible dream. Jack would wake up one morning and be back to his old self - highly amused by some pretentious remark made by a politician being inteviewed on Radio 4, ready to deal with what the day would bring and ready for a cuddle along with that morning cup of tea. The reality check in my mind told me that those days were gone and that I was just going to have to face up to the certain knowledge that the diagnosis would put us both into a different place. All I can say is I hope you get the consultation soon and that should it be the result you are fearing accept whatever help is out there for there are people around who will give you much support. Its a bit like wading through pea soup but there will be help and you will have to work out for yourself the area of support that will benefit you the most. Take care and please write again about anything that is troubling you. Perhaps someone else will read your letter and respond to it.
Thanks
Jill.

Hi,
I just want to say Congratulations,Thanks and Well done Jill, for setting up such a wonderful website. What a brilliant idea!
Sadly my mother died a year ago having suffered with vascular dementia for many years,but I remember only to well how I felt seeing my mother change into a person totally opposite to how I had grown up to know and love her. Luckily for me I knew it wasn't her being nasty to me, threatening me, hitting me, I knew it was an illness and that another person had taken over. But for my dad it was different, he couldn't accept it at all. I'm not totally convinced that he completely understands it today. He used to ask her why she's saying such nasty things to him, asking her what he had done wrong, only to be bellowed at even more!Even in hospital during the latter years, if she shouted (which she did often!) he would ask her why she had to shout like that! Remembering when the time came for my mother to go in for what the social worker called 'respite'and 'assessment', I couldn't handle it mentally. I just couldn't bear the thought of her going into a 'home'.Thinking she has looked after and cared for me throughout my childhood and I should be caring for her now. Even though I knew I was and had done as much as I possibly could and that it would probably be for the best - for her, I couldn't comprehend it at all.Like Tricia's husband, my mother had been slowly changing for a good 5years before I eventually seeked help from the Alzheimers Society, because she had turned violent while on holidays. She used to wake at night and 'go to school', and it would take an age to get her back into bed. I and my then husband(now ex) went to stay with my mother and father so that when mam woke up and disturbed dad, I would send him down stairs to the sofa while I encouraged my mother back into bed in a way as if I was her mother and she was my daughter! In fact she would talk to me telling me her worries then say "don't say anything to Yvonne she has enough to worry about".
I searched for someone to talk to at that point that felt exactly as I did. Although I once got a helpline with a sympathetic ear, I wasn't getting the feeling that she could be smiling nodding and saying "yep, Ive been there, I know exactly where you are coming from". Though I must say that after contacting the Alzheimers society, the support was A1. But I'm recalling before that point, when it does seem that we are alone and the only ones going through such a thing.
I'm sure you know what I mean.
So yes Jill, this is a fantastic idea. I only wish I had thought of it years ago!:-)
I will look on regularly. If I see from any message that any part of my experience can be of help to anyone I will glady contribute.
All the best to you and your hubby, you too Tricia.
Again,well done Jill.
Yvonne

Dear Yvonne.

Thank you so much for finding this website and introducing yourself. I'm so glad you think it is a good idea. That event on the train really did happen and I truly am just someone like you who has made that awful journey. I will answer your message in the 'Problems Shared' section as I don't think I should cog up the Introduction page. See you there.
Jill.

Hi
This site looks good and hope many more people visit it so we can all start to share our experiences - well done Jill.
We both work full-time, D is primary carer for her nan who is 90 - it's a full time job in itself, but the highlight of the day are all those phone calls we take during the day at work "what day is it?", "are they coming with my breakfast?" "are you taking me out today?", "have they been with my lunch?", "nobody as been to see me today", "have I had my lunch?" and thats all in the first hour whilst D is warming her computer up. For me I have started to work from home to help keep some normality at home and because my 85 year old father and my mum live in the same street as us - like nan how many times do I have to hear the same thing?

But the funny thing is I can be so patient with D's nan but when it comes to my dad - I very quickly lose my patience. Does anyone else have this problem? Any advice?

Hi Gary and Debbie.
It is very good to hear from you and it is great to realise where I am coing from when I decided to create this webb site. I shall try to put my understanding of your situation in the problems shared section so please have a look there. If anyone else has anything to offer it would be very good to hear from you.

Hi Jill and all, I live in Florida, USA and am so happy to have found this site. I have looked everywhere for a forum or message board like this, and to think I found one all the way across the ocean. Hope I am welcome here.

Along with all my husband's other medical problems, he has just been diagnosed with Vascular Dementia. I knew for a while that something wasn't quite right, but attributed most of it to his medications. But the morning he had another mini-stroke and was talking to "the little girl down the hall", I knew something else was up. By the time he got to the ER (emergency room) he didn't even know me and thought he was still living on his parents farm in Ohio, at times he was in the Navy and at other times he just rambled on about nothing. After numerous tests the doctor finally told me what was wrong and that he would "come out of this particular situation", but his dememtia would only get worse. With all of his other medical problems this is something I did not need or want to hear. At this time the doctor informed me that my husband also had pneumonia and the infection was making the delusions and hallucinations worse. After double doses of antibiotics he was better the next day, at least he "knew" me.

He is home now and doing some better. He will ask the same questions over and over, sometimes even back to back. He says all the food I prepare taste different, asking if I changed the recipe and adding salt to everything. He quit using salt years ago. Hurricane Fay just went through here while he was in the hospital and now he swears he ordered a generator and is expecting a call from the dealer. Everytime the phone rings he wants to know if it's about the generator and why haven't they installed it. He sleeps so little and in spells. The sleeping aid the doctor gave him only works for about 1-2 hours at time, so of course I don't sleep much either. Not good. I could go on and on but what's the point.

Sometimes, as his primary caregiver, I am so over whelmed I just want to cry, but am afraid if I do I will never stop. We have been married for 36 years and I promised to love and care for him till death us do part, and I will. Just knowing I'm not out here alone is such a comfort. Thank you, Jill, for this safe place to come to. Cheryl

Hi Cheryl,

I'm Jan and I work for an organisation called 'Solace' that supports carers of older people with mental health needs, such as dementia.

I've just read your post, many of the problems you're experiencing aren't unique to you, and by sharing with others whether it's on this forum or in a support group can be so beneficial.

If you need to know any facts about vascular dementia or caring for someone then you can always click on the alzheimer's society website, or email me.

It sounds like you need to buddy up with someone, and maybe find a local group so that you don't feel so isolated and you'll meet with people who understand.You need support, and be able to express yourself fully and not worry.

Take Care and good luck for the future,

Jan

Last night, before going to bed I had a quick look at the web-site and there was your message. In my imagination my arms stretched across the rest of Britain, across the ocean arrived in Florida and enfolded you in a great big hug. Why? Because apart from individual details I could have written such a message myself - especially your final paragraph.
That unforgetable afternoon, after we had been informed of Jack's diagnosis, we made our way to the car, sat inside and cried. Jack more for the fact that the spacialist had just told him he was never to drive the car again and me for the reality of what we had just been told. He hadn't missed the doctor's words though for Jack turned to me and said, "What am I going to do?"
Its wierd to look back on, Cheryl, but my reply set the pattern of our lives for the following years and I can remember it almost word for word. It was,
"Don't worry, love. We are just like two sides of the same coin. What you can't do, I shall do. It will be just like you doing it anyway. We'll be alright"
There are going to lots of spelling mistakes I fear as my eyes are full of tears at the memory of it all!
One of the ways I found myself able to deal with things like your generator, though in my case it was Jack's plan to buy a scooter, a Vespa or Lambretta and take himself 'home' where no-one would know he was ill and he could live the old life, (his mother had died years previously and 'home' no longer existed,) was to lie. I pretended the scooter salesman had phoned to say they were out of stock and we had to wait for a new lot to arrive from Italy. Then I told him the scooter shop had closed down and we would have to wait for another one to open. By the time all this had been stretched out he had forgotten about the scooter and that particular moment had passed. Maybe you can think of something about the generator.
I remember realising that Jack had suddenly become fearful of the patterns on our coffee mugs. What was that all about? What could I do? Oh yes! At the first opportunity I bought some plain white ones and hid the others. It worked1 I felt as though I had won the lottery!
There's so much more I could write about, Cheryl, but I think that both your time and emotion should make me put a sensible head on! But please get back, whether its to vent your frustations or to ask "How in heaven's name did you cope with ...."
Its a long journey, Cheryl, but its amazing how love holds you together. Please reply to this as I am sure there will be times when, despite the distance in miles, the closeness of help and understanding is right here. Lots of love. Jill.

My wife has frontal lobe vascular dementia. I so wish I could write something encouraging or upliftng. I can't. Quite frankly I find coping with her a bloody miserable and daunting task. I shall stick at it because a long time ago I made a solemn promise that we would care for each other, "In sickness and in health till death us do part."

Hello Ian.
You are absolutely right. It is a miserable and daunting task. I imagine it must be even more difficult for men because we women are at least well versed in the workings of the kitchen, the cleaning, the cooking etc.etc. If the man isn't and finds himself having to do it along with all the other stuff he finds himself having to do when discovering he is turning into a 'carer' it must be hell.
Its easy for me to say but there really is help out there. I found that once I learned to swallow my pride and once I found that group of people I described in the 'About Me' section of this website I was pointed in the direction of support both official and informal. It made a heck of a difference. It didn't change anything. It was still Jack and me but there were people I could call for help to and that's another thing I learned - never refuse an offer of help - even if it is merely an invitation for you and your wife to go for a cup of tea at a friend's house. One good friend is worth a hundred well- wishers!!! Don't really know what more I can say to you Ian except to ressure you that this place is here and if you want to let off steam then here is somewhere you can. You would probably be voicing the thoughts of 'carers' from all over the planet!!!
Jill.

Two weeks after I wrote here my husband passed away. Bewteen the mini-strokes and numerous heart attacks it was just too much. He went into a "sleep" like state for days. A couple of times he would know I was there and would squeeze my hand and would kiss me when I asked for one. But, he never woke up. I had come home to shower and change clothes and at 7:15 A.M. I felt such a hard thump on my heart, I knew he was gone. They called me about a half hour later and I told them..."he's gone."
I almost feel numb. He had been in and out of the hospital so much this year that it's like he is still in the hospital and I am waiting for him to come home. It almost seems natural for him not to be here. My sister, friends and other family members tell me it hasn't hit me yet. Oh, I cry when I talk about him or when someone tells me how sorry they are but for the most part I just sit and stare. Nothing seems real and nothing seems important. I am to pick up his ashes on Friday, maybe that will be when it hits me.
I hate feeling this way.....heart pounding out of my chest, not a clear thought in my head and I just want to be left alone. Sometimes I feel as though I am dying or maybe it's just wishful thinking. I know I have to go on, he would want me to, but right now I just don't have the energy or the want, to go on.

My dear Cheryl.
There is very little I would dream of saying to you in the manner of words of comfort. I am sure you have had many from friends and family but in my heart of hearts I know from experience they make very little difference. You are locked in to that place you describe so painfully in your letter. My own dear husband died in February this year. The only consolation I can give myself is knowing without a doubt that there was nothing more I could have done for him. My three sons and I even took his ashes and scattered them high on a hill that overlooked his village and the sea - a place he had years earlier said he wanted to go. What more could I do?
I doubt you will be reading this for a while as you will have more pressing matters to deal with. But in the days after my husband's funeral when suddenly I realised that actually, the one person left for me to think about was myself, a poem started to formulate in my mind. Eventually I wrote it down and I will pass it on to you. It is rather bleak, I'm afraid but it sort of pointed me in the direction I found I was having to go. I don't know if it will print out as lines of poetry when it is sent as an email but I will just have to take that chance. Here it is.


Tomorrow.

She railed at the cruel relentless
Dying
Of the man she loved.
Her smiling reassurances
Decorating his departure.
Yesterday was grief.

The day after tomorrow
She will fret
For her sons, her grandsons.
Her hopes for them.
Her fears for them
Downloads from her own imaginings.

But first, tomorrow
She must clamber aboard
A little boat,
Loose the rope,
Set the tiller,
Pass harbour walls,
Sail foreign seas
To seek an unknown shore.

Please keep in touch, Cheryl. My thoughts and good wishes go out to you.
Jill.

Hi - I dont know where to start really -my mother has yet to be diagnosed due to the time every next appointment seems to take. Over the last 12 months has seen my mother gradually getting more and more confused with a disintegrating memory. Since taking her to her local GP nearly 9 months ago - she has undergone an MRI scan/ CT scan and 2 lumbar punches (as the registrar forgot to do a timed walk??!!) no explanation as to why they were doing this. Since now researching this have found out it was to see if the reduction in fluid would help. Anyway - to this date I have been told she has small blood vessel disease, and now await an appointment at a memory clinic for medication that may help her. she should have this appointment some time in the new year.
I feel useless for my mum who has always been there for all 3 of her children and dont know what to do to help her.She lives on her own, goes out daily just to get out, but is finding it increasingly difficult to do daily things such as remember why she has gone to the shops and will go the mile walk 3 times if needs be. We are at the point that she is finding it hard to remember how to make a cup of tea - not always but when she is having a bad day. I wish I could say that I need support here, but it is her that needs help and I dont know what to do - the guilt I feel that I cannot see her everyday. I live 15 miles away and work full time. We speak regularly over the phone but this is becoming increasingly difficult - but see her for the day on a Saturday. I know that she needs help but dont know what is available. She is a strong lady still gardening -cutting the grass and hedges ! and has been so independent, yet now looking so lost.Please can someone point me in the right direction.

Hi Carolyn

Within Cardiff and the Vale there are two ways of accessing diagnosis, one is through the Memory Team and another is through Mental Health Services for Older People. The Community Mental Health Teams for older people are teams of professionals who work within the service. The team will consist of a Psychiatrist, Psychologist, Occupational therapist, Community Psychiatric Nurses and Social workers. Within Cardiff and the Vale NHS Trust there are four teams, and they run an open referral service. They may be were you could get some extra support and help. You could contact your local Alzhiemer's Society who would be able to send you out information on distance caring and the services available in your area, and where to go to get the help you need. Also you could go back to your mum's GP practise and let them know about the deteriation and ask them to make a referal to the team.

It is important that you mother's physical health is looked at incase of change, some changes such as aneamia and infection can change your mother's behaviour causing her to become more forgetful and confused.

Finally you are a caring daughter who is trying hard to find your a way to help your mother. Instead of looking at what you are unable to do for your mother, think about what you do! Recognise that you feel guilty because you care and that you are trying to help her while feeling each of her losses as if they were your own. Try to see your mother through the losses and hard as it may seem try to focus on what she can still acheive.

I do hope I have been of some help. Good luck!

My Dad has recently been diagnosed with vascular dementia and my Mum, who has had memory and reasoning problems for a couple of years, refuses any investigations, so remains undiagnosed and is difficult to help, as she is in denial most of the time. She is also very deaf, and my Dad is dysphasic after a stroke, so they have a lot of misunderstandings and neither of them has any patience any longer. My sister and I live with them and are finding it very difficult. My Dad is also catheterised for severe urine retention and has recently started needing help dressing and washing, etc. I keep hoping he'll get over it, but no that he is deteriorating fast and feel very sad about it. He is easier to get on with than my Mum, because he grasps every opportunity for simple pleasures and because he has had to go into hospital a couple of times and enjoys all the fuss his friends and relatives make of him, even though he hates hospital. My Mum seems to just want to be left alone, but I can tell she's feeling lonely and neglected. It's just difficult to know how to help her when she won't admit she needs it and is so quick to criticise.

Can anyone say anything helpful about this?

Hi Ellie.

Sorry I did not reply yo your email sooner. I have been away and returned yesterday. When I read your email I thought, 'Poor lady. What on earth is there to say that can help her through the mire?'

This morning I decided that there has GOT to be something, so here I am struggling to pick out points from your email where two heads are possibly better than one.

First of all your Mum. She (and you and your sister!) surely need professional help. Can you possibly discuss the situation with her doctor or go to see him on your own account as so much caring without support must cause your own frustrations? Or maybe you could discuss it with one of the professionals who are dealing with your father?

I do understand what you mean. I ended up moving house in order to get my husband to see a doctor but that was rather drastic and I wouldn't recommend it. I am told that many older people suffering from memory loss find themselves in a state of depression so, to my mind, the only way to get the help that is out there is to find some other reason for getting her to a doctor then ring the surgery before you go to make it quite plain to them the true nature of the situation. Why not ask to speak to the doctor personally.

And now, what can I say about your Dad? He sounds lovely. I had to give the same help for my husband and no, he didn't get over it. What I did find though, was help to get him to a dementia day centre for a couple of times a week. Your Dad sounds as though he would like the sociability of it and the staff at such centres are caring, understanding and trained in knowing how to manage each individual person. I was well impressed.

Try to take some positive action if you can or it will be your's and your sister's health deteriorating and that will be of no help to anybody. Your letter truly affected me. What a nightmare. But please GET THE HELP THAT IS OUT THERE!!!! Don't be put off by your Mum's attitude or by some harrassed GP. Maybe you could find out if there is a Community Mental Health nurse in your area. They could possibly visit you and make some sort of assessment of your Mum in an informal sort of way so she wouldn't be suspicious or resentful.

Well, there we are! I do hope I have been a little bit helpful and wish you well. Email back and we can talk some more if you like. All the very best to you and your sister.

Best regards

Jill.

Dear Jill,
I found your website in the Women's Weekly Magazine and just thought I would take a look. My husband Nigel is 52 years old and has Altzheimer's they think Lewy Body's Disease we are waiting the working diagnosis as the Consultants at present are reluctant to put it in black and white because his hallucinations don't fit the normal ones!!! I too am 52 and feel my whole world and his has just changed in 8 months. I have had to be signed off sick to look after him at present as he trips and falls in the house and has no idea of time etc. so misses eating and drinking. I grieved for my husband I used to have at Christmas and now love the one before me. My two girls Emma and Katie are amazing and have been my rocks. It must be so hard for them to see a father who used to be our rock now be the waves crashing about. We have many laughs and many tears with each changing phase Nigel goes through.

Social Services came last week and were amazing with so much help and we are going to get a personal care account to buy in our own care so I can return to work part-time.

I did not realise how stressed I was til I saw my doctor last week who said "have you thought about putting Nigel into a home for while so you can get some respite" I seriously had not thought we had come that far, but guess we have.

I cared for my mother when she had breast cancer til the end and my alcoholic father until his passing. I have decided I must be a brilliant carer as God has chosen me to do it for the third time.

I make sure I have "me time" each week as I would literally go up the wall and hope others reading this will do the same even if its just window shopping.

My advice to others reading this is that there is help out there but you have to shout loudly.

I would love to hear if there is anyone else out there with a husband of same age to be in touch with them by e mail as my support groups round here are for the over 60s.

Thanks Jill for this website.

Regards

Sarah

Hello Sarah.

Thank you so much for your email. I was surprised and pleased to discover that you found my website through the pages of the Woman's Weekly. I had no idea it was there. It's amazing what good things happen without one even knowing.

I can absolutely relate to the thoughts and feelings you express in your letter. It's rather like finding yourself in some sort of wierd parallel universe isn't it, where everything's the same yet nothing's the same. It was great to hear that Social Services have stepped to help you. My experience of the social worker my husband had was very positive. She gave me all the help she was able to.

I understand, too, your changed feelings for your husband. For me it was the same. Slowly all the old and well worn husband and wife relationships of many years changed and I found myself loving him and protecting him in much the same way as I had done with our three boys when they were young and vulnerable. I think I was lucky to have those feelings - as are you - as many people find it very difficult.

It must be extremely difficult for you at your younger time of life to cope with everything in front of you and you have mr heartfelt sympathy. On a more practical note I will get in touch with a friend whose husband is making the same journey. I am sure she will have a chat. Also, here in Cardiff there are a few groups and help too for carers of what they call 'Early onset dementia'. It will be next week now as I have rung several paople today (Friday) and strangely they all seem to be out of their offices!!

In order to help you find the contacts you may need I should know the name of the nearest town you live in so perhaps you could let me know.

I don't know if I've mentioned it in earlier letters but when it came time for my husband to have some respite care (an event I was dreading)I explained to him he was going for a few days to be properly monitered. Monitered was a word we had used from the start and by the time this all took place it remained a word he recognised. I only tell you this as it might give you a clue as to how you can possibly cope with it. It was not easy but for the chance to slip back briefly into that original universe it was well worth it. Funny really, its only people like you and me who will know what on earth I'm talking about!

Thank you again for your letter. Who knows how many people find this website, read the letters and get help or comfort from them without ever writing anything themselves. Please keep in touch. it was good to hear from you.

Best regards

Jill.