1. doris

    doris Registered User

    Oct 3, 2005
    23
    Hi
    I am new to the forum and would like to join in with some people with more experience of these diaseses.
    I care for a friend (not related) and have done for 5 years. I live in and up until the last month or so have been coping ok (I think). My friend has been having delusions and halluciations on and off for a while and they have been put down to infections. The last episode lasted for 2 weeks and after 3 courses of anti biotics he still is having conversations with people who are dead, he sees people who are not there and has no memory sometimes of where he is and confuses me with sisters he hasn't seen for many years. He is currently being assesed at the hospital but only after we paid private to see a consultant. Has anybody got anything they think that will help me deal with this as i have no previous experence of mental illness and what course it is going to take . I have put Lewy body as a title as the symptoms he has seem to match but have not had a diagnosis yet
     
  2. Finnian

    Finnian Registered User

    Sep 26, 2005
    60
    U.K.
    Hi Doris
    Pleased to meet you. I've only just started posting on the forum and found allsorts of help within a very short time. Sit tight and I'm sure someone will be in touch to share their experience. My circumstances are a bit different: hubby appears to have brain damage due to head injury. I feel he is dementing but formal testing has not confirmed this yet - its a case of wait until the changes are obvious to others. Our GP has been a great support with his long term physical problems but isn't convinced there is a dementing process. In the meantime I live with some most peculiar behaviours. They fluctuate so it is hard constantly changing your approach to match the behaviour and then the strain of not knowing what the day holds.
    Have you found the information / fact sheets on this site? They'll give you a good starting point. It might help to write out some questions for the when you get a summary of his hospital assessment. One of the questions I'd recommend (regardless of a diagnosis) is who can I contact to help me in the future ? Hopefully that will start up some support system for you both.
    Hope this helps
     
  3. I agree 100% with that! (Hi Doris by the way).

    I use these all the time and point them out to colleagues... just to say, as a 'future professional' I find them invaluable, and would not hesitate to recommend them to anyone who needs info, Person with Dementia, Carer and Professional alike!

    To save you looking - click on the link below to see all the available factsheets:

    Click Here To View

    I reckon as Finnian says that is the best place to start... there you can take time to read over information without pressure and form questions of your own to ask after having read that info.

    Best wishes to you and your friend.

    :)

    N.
     
  4. doris

    doris Registered User

    Oct 3, 2005
    23
    Thanks for the words of encouragement. I sometime dread getting up in the morning only to find he is having a good day and then feel guilty. I feel as if my life is going to stay this way for ever and the only way out is for something bad to happen, but then who would want to be stuck in a chair, not able to remember yesterday or plan tomorrow and not able to do the things that you have done for the last 40 years, lifes not so bad for me.
    I feel that once i know what is wrong that i will cope better -will i? I seem to be guessing and doing my own diagnosis some good , some bad.
    Do the doctors always tell the patient the results as i don't think my friend will take it well as he has seen his sister go through AD and has always said he wouldn't want to be like that.
     
  5. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    Dear Doris

    I cared for my Mum with Lewy Body. The most useful advice I can give is to start thinking about what help you need to carry on this role before it is too late and your own health starts to suffer. Contact Social Services about getting a Carer's Assessment done and also ask them about respite services. It might also be an idea to see what sitting or befriending services are available in your area from such as Crossroads or the Alzheimer's Society,

    best wishes

    Geraldine
     
  6. doris

    doris Registered User

    Oct 3, 2005
    23
    Thanks for that Geraldine
    I have been assessed by the ss and have toileting help 4 times a day but restbite is more trouble than its worth as he get so confused being in a different place that it can take a long time to settle him back down.
    Did you find that lewy body has stages like AD if so could you give me some info cause the way my friend is behaving does not match AD
    Thank-you for any help
    Doris
     
  7. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    Dear Doris

    I found with Mum that she deteriorated in stages, plateaued for a while and then declined. Each decline seemed to follow some sort of infection or little illness. For a long time she was diagnosed as having Parkinson's Disease due to the mobility problems but the increasing nature of the hallucinations and delusions lead me to suspect Lewy Body which wasn't diagnosed until about 18 months before she died. In the last 2 years her mobility declined rapidly from being able to walk slowly with a walker over a period of about 3 months she needed the help of 2 to walk at all. I don't think she lost the use of her legs she just forgot how to walk, go to the toilet or even sit down. The hallucinations increased and lasted longer she didn't know where home was, thought she was on holiday and I became some sort of relative. The real problem was the disturbed sleep for the last 6 months while she was at home with us I was woken about 6 times a night and then early in the morning. She could not tolerate being left alone, even someone in the house was no good you had to be in the same room and awake! or else she started calling out and crying. It was so sad. Eventually she needed 24 hour care, my mental health was under strain, and we had to find an EMI home after she had a spell of about 1 month in hospital where the diagnosis was eventually reached. Because of the Lewy Body she could only tolerate a low dose of Quetapiane. Her mobility and appetite improved a little in the home, but this time last year she started deteriorating and sadly died in February. Her decline seemd to follow the classic pattern of lewy Body, she died 6 years after the symtpoms first appeared.

    I hope this helps in some way Doris.

    Geraldine
     
  8. doris

    doris Registered User

    Oct 3, 2005
    23
    Thanks Geraldine
    Your mothers symptoms are very similar to my friend who has been taken into hospital this weekend for an infection. Previous to this he was only sleeping for 2 hours at a time and dreaming, and shouting whilst sleeping. I am finding it hard to keep my patience as i can't go long without sleep. He doesn't think that this is his home and asks to go home all the time, he can walk with assistance for a short while but does'nt reconise where the toilet is and has to be told nearly every time. Some days he is with us but then is talking to people that have been dead for years other days. I have carers in to help toilet him and to get him out of bed and to sit with him for me to go shopping but he always needs to know where i am which i find quite draining. Did your mother ever go to day care centres? I don't know if he would go without me as i have to go everywhere with him but it might be worth a try. I am still waiting for a diagnosis but after your explaination of your mothers sad decline i think my feelings are right.
    Sorry for your loss but you have helped me so thanks for that
    Doris
     
  9. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    Hello Doris

    Mum did go to an Age Concern Day Centre for a while and enjoyed it was not specifically for people with dementia, that was before we had the diagnosis she also went to a Church group and a Parkinsons Disease meeting. I was on the point of trying to arrange something more but her deterioration over the spring and summer 2 years ago was so rapid she had to move into a care home . I thought I would be able to look after at home for another 6 months or so but it was not to be.

    I would sometimes get in from my part time job to find her in a really bad mood because she said that we had been asleep all day on the settee and nobody would talk to her!

    best wishes

    Geraldine
     
  10. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    Hello Doris

    Hope you find plenty of support through TP - I'm sure you will. My dad had vascular dementia but went through some similar difficulties as your friend. While he was living with us I found the disturbed nights unbearable as you are constantly exhausted and therefore less able to cope. In the end i did have to put dad into an EMI nursing home as he needed round the clock care. It was very traumatic for him and me at first as he was so dependent on me but he did settle after a few weeks. He's been there over 2 years now. The staff are really caring and generally he is very content, though of course the ilnness continues to bring new problems every few weeks. You are obviously doing a terrific job but if there does come a point where your friend has to go into a home that will be a decision you have taken out of love. You are entitled to a life too and I'm sure your friend would not want yoiur health to suffer. You will need considerable help to cope as the illness progresses so as the others advise it's worth getting all the information now.

    All the forms of dementia are cruel illnesses, though one positive for me is that the experience with dad has made me much more sensitive and understanding about mental health issues in general.

    Take care of yourself as well as your friend.

    Blue sea
     
  11. doris

    doris Registered User

    Oct 3, 2005
    23
    Hi Blue sea
    A lot of people say look after yourself but its easier said than done. Did your father have normal days? I went to the hospital today and had a good sane conversation with my friend although he can't remember yesterday or this morning or anything before that moment.
    One of his symtoms is what he describes as a funny head it's not an head ache but it is very unplesant and affects his eyes , has anyone one else come across this? also we have had instances that i can't wake him up in the mornings. This has happened about 5 times now and he just can't wake up even when you stick pins in him(doctor not me). Ive got to pick your brains ive learnt more in the few days i found this forum than in the last 5 years
    Thanks guys
    Doris
     
  12. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Doris, yes I know it is easier said than done (previous post from Blue Sea), but remember you can only be a support for your friend if you are in good health yourself,
    I know from experience that I become negative to advice etc when I am stressed out. Try to take some time out for yourself, whilst still being supportive. It will be benificial in the long run. Love Connie
     
  13. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    Hi Doris

    Every case is different so it is difficult to answer some of your questions, whcih probably need a doctor's view. In the early stages Dad seemed to be fine much of the time but with some very specific language problems - mainly nouns, even simple ones seemed to elude him. As it progressed he had good and bad days, though he was always worse in the early evening (the Americans call this sundowning). Lots of the time you could still have a rational conversation though I suddenly discovered he was doing things like sleeping in his clothes and going out of the house at night (this was when he lived on his own). When he lived with us and he got to the stage of being up nearly all night, he was very difficult to wake sometines in the morning, as I suppose he had gone into a very deep sleep. Each dementia sufferer is unique in that different parts of the brain will be affected. Vascular dementia does progress in sudden steps and the person does vary a lot according to how the blood / oxygen suply is getting to the brain at any particular time. I'm afraid I don't know much about Lews condition.

    I know it is difficult not to worry but try to take one day at a time. Until you have a proper diagnosis and professional advice it is ifficult for you to make decisions.

    Thinking of you.

    Blue sea
     

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