Hello, I'd like to introduce myself!

Discussion in 'ARCHIVE FORUM: Support discussions' started by KateR, May 9, 2006.

  1. KateR

    KateR Registered User

    May 9, 2006
    15
    Newcastle upon Tyne
    Hello, I have just registered so please be gentle with me! My name is Kate I am 34 and my lovely Dad was diagnosed with Alzheimer's a couple of years ago. He is currently cared for at home by my Mum but is dereriorating quite rapidly.

    I'm hoping to become an active member of this forum as I would like to gain a deeper understanding of this bloody awful disease that has robbed me of my Dad, my Mum of her husband and my children of their Grandad. I hope I can also offer support to others in similar situations.

    Kate x
     
  2. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Warm welcome

    Hello Kate, so glad you found us.

    Sorry to read about your dad, you have come to the right place for sympathy and advice. Please post on any topic, you will soon make "friends" on this forum.
     
  3. KateR

    KateR Registered User

    May 9, 2006
    15
    Newcastle upon Tyne
    Thanks for the welcome Connie. :) I'm going to try and get on here as much as I can children permitting!

    I'm looking forward to "meeting" everyone.
     
  4. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    Hi Kate

    welcome to the wacky and wonderful world of TP. Not somewhere any of us wanted to be but you'll find some fantastic people here hence my careful use of the word wonderful. People who have been through the hell of dementia, people who are in the darkest depths and many like yourself who have only just discovered Alzheimers and are having to face the future not knowing what is to come. In fact none of us know what is to come as every one is individual and every carers situation unique.

    I'm sure you will find support and help along your path - we all have - whether you need to ask something or just fire off about your latest frustration. And by just posting your own questions you will probably be helping others by sharing your problems.

    I'll warn you now we do tend to get carried away sometimes but no disrespect is intended - it just helps us to retain our own sanity.

    Kriss
     
  5. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Hi Kate
    welcome to TP.
    So glad that you have found us,post whenever you wish,there is always (night and day) someone here for you
    Norman
     
  6. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Hello Kate,
    How very nice to meet you and have you here. TP has been so good to me, the Yank in the group, and I know you will be glad you joined in.
    Debbie
     
  7. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    hi kate
    just wanted to say hello and
    welcome to tp its helped me tremedously hope it does you too:)
     
  8. suef56

    suef56 Registered User

    May 10, 2006
    14
    Middlesex
    Hello..I'm new here too

    Perhaps it is the time of day (or night??3am or so) but the lingo on this site takes a bit of time to get used to:confused: I've been taking care of elder parents for quite a few years now..left my last paying job in '96 as my mother-in-law was getting on and needing more help and having strange episodes which her doctor told her were due to her having a worried daughter-in-law!! I read up on TIA's and guessed she was having some and decided we would visit family as often as possible and play at every opportunity and hope we could cope with whatever was thrown at us. Briefly, she had a major stroke in 2000 and while she was still in hospital the speech therapist listened to my descriptions of various episodes and agreed that the diffuse brain injury she was seeing was probably due to many little TIA's as well as the big stroke...lots of progress and healing for 4 months then months of coping with each new decline before finally a doctor said the words 'She has vascular dementia'--oh man (as my daughter in law says) what a rollercoaster ride that was for her and me and my husband right through to her death in July '02....and during that ride my husband took care of his mum totally for 2 weeks in July '01 so I could visit my parents...and I came back warning him that my Dad was experiencing things we'd seen in my mother-in-law some 3 years before her stroke....since July '02 I have been commuting to the states (I am American, married to a Brit, living in UK for 30 years) to give my parents help and companionship on their rollercoaster...Dad's diagnosis has gone from dementia to Alzheimers and in the last two and a half years it has become clearer that my mom is suffering from confusion and tiredness and memory problems which I think are progressing but no one else is seeing so clearly...fortunately they put aside money for living in a retirement community and we have just made a second major move within the community within the last 10 months so they have two rooms in the assisted living wing and fingers crossed that they will be able to stay together and not have to move again for a long while...I am back in the UK for a month and feel like a displaced person. Saw the One Life documentary 'My Life on a Post-It' tonight and came up and emailed (first time in 6 weeks) and then wandered on to this sight to meet more of my fellow carers out there. Scuse the mistakes...if I stop to proofread this I might not post it so here goes...and good night!! Suef56
     
  9. alex

    alex Registered User

    Apr 10, 2006
    1,665
    Hi Kate

    I joined not so long ago and find that there are some things which you don't like to talk to family and friends about, (for one reason or another).
    I hope, like me, you will find comfort from TP knowing that you can talk about anything that is bothering you. I have found that the people here are brilliant and its a real comfort knowing there is always someone to help you through the bad times (and good times)

    Kind regards
    Alex
     
  10. moviefan318

    moviefan318 Registered User

    Apr 30, 2006
    32
    northamptonshire
    hi katie and suef56
    welcome to tp hope you find all the surpport you need here with really caring people
    carol
     
  11. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    Hi to Suef as well.

    We nursed my Dad through Alzheimers up to his death 3 years ago and when the all too familier tell tale signs began to show themselves in his sister the alarm bells were set ringing. We found commuting an hour in each direction trying to manage thee situation virtually impossible so i can only imagine what you must be struggling to cope with.

    Just keep posting and yes - hit that send button without stopping to think too hard. There is some sort of therapy in being able to pour those feelings onto paper and then to "send them away"

    Kriss
     
  12. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    It just occured to me while reading this thread one of the reasons TP is so important to me. I try really hard not to talk to my friends about what is going on in my life too much. I don't want them to thinking " oh ****, here comes Debbie, all she talks about is Alzheimers and what she is going through with her mother" I also try not to let AD be the sole topic of conversation with my husband as we try to have a life out side of it. BUT it is hard since I feel I am living, eatting and breathing AD right now! With TP I can always unload, banter, cajole, laugh, cry, poke fun, rant, put in my two cents, and feel that "here" it is safe to be able to say whatever, whenever and there is always someone reading, listening and responding.
    Thanks to all on TP !!
    Debbie
     
  13. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Hi Sue, what a story!! Your feet don't seem to have touched the ground much in the past 10 years, and when they have you have been up to your knees in ..it. And your husband has 'held the fort' while you helped your own Dad & Mum. Thank heavens your parents are cared for and together, in good circumstances.

    In your spare time (Hah! :p Joke!) you could probably write a very useful book on caring for AD/Dementia sufferers.
     
  14. Kath TN

    Kath TN Registered User

    May 5, 2006
    32
    TIAs and Dementia

    Hello to you both. This is only my second post - it was the referral by Suef to TIAs that has prompted me to reply. My dad recently suffered a TIA that led to him losing the use of the left hand side of his body - he spent a couple of days in hospital but seemed to have fully recovered by the time he was discharged. Now call me ignorant but I'd never heard of a TIA and the description that the doctors in the hospital gave me was less than useless. Can somebody tell me are TIAs caused by vascular dementia or is it the other way round? Vascular dementia and Alzheimer's have both been mentioned when I try to ask for a definite diagnosis of Dad's condition - are they the same thing? I've been told that Dad needs a CT scan on his brain to determine whether he has acutally got AD but a (cynical?) nurse told me that there wouldn't be any rush by the hospital to diagnose AD because of lack of funding for the relevant medication. I'm confused!!!:confused:
     
  15. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Hi Kath, My Dad doesn't have AD but has had a TIA caused by a clogged carotid artery. It is also called a mini stroke. Alot of people have them often with no long term damage. With some people it is a preamble to a large stroke.
    I would think vascular dimentia could coinside with TIA's. Only your doc can tell you though. I hope you get help with it soon.
    Debbie
     
  16. May

    May Registered User

    Oct 15, 2005
    627
    Yorkshire
    Hi Kate & Sue
    This is the most caring and sharing site, there's nothing too bad (or good;) ) that you can't post it here, get rid of the burden and get some wonderful support from people who truly understand.
    Take care
     
  17. suef56

    suef56 Registered User

    May 10, 2006
    14
    Middlesex
    For KathTN

    Hello-I feel a bit on the spot over mention of TIA...my only experience with them is from observing what my mother-in-law (we called her Moggy) went through and reading up on them on the internet..a TIA stands for Transient Ischemic Attack...the transient meaning that it is a form of mini-stroke, as rummy explained, whose effects do not last long. I think they are usually the result of a blockage in a blood vessel which starves that area of the brain of oxygen temporarily...I don't think that the TIAs cause vascular dementia. What you need and deserve is good information and from what I've seen on this sight there is a gold mine here for you--even better you'll have the help and experiences of the others here--wish I had found it when we were caring for Moggy! What a very unhelpful nurse you had over the CT scan--almost making you feel like you should not insist on proper diagnosis as much as possible and the chance to try to see if a medication can make any difference. ( In the states, the neurologist assessing my dad and mom ordered MRI scans ..I don't know what the difference is between the CT and MRI scans??)
    In case it helps you I can share what I remember of Moggy. With Moggy I noticed that on days she reported that she 'felt lazy' she would also feel nauseated and very sleepy and for that day and the day after she would get confused over every day things and then get back to normal. As she was on tablets for blood pressure, thinking of TIA's was more a guess on my part to explain what we were observing and we had to guess as neither Moggy nor her GP really wanted to look into it so don't depend on my guesses--google it and see if anything is like what you are seeing. After quite a few episodes over a few years and all this taking place while she was in the mid to late 80's it was hard to know which of her memory slips and confusions were normal for her age...things like saying of a familiar route 'we've never gone this way before' or 'oh a new roundabout' at a roundabout in our home town...conversations not remembered, losing her way in bridge game (she was a master and teacher of bridge all her life). Then one evening I was sitting next to Moggy when she had a TIA while we were both out for the evening--she slumped over to one side as she lost the use of her right side but she was still alert and had no idea anything was wrong. I called her name a few times 'Mum, mum are you all right?' and I swear the glare in her eyes meant 'of course I'm all right don't make a fuss' there we were..two old girls both with strong wills..was I nice? No. I told her,'Mum, you are slumped over and you are not talking' the next look said 'Don't be so stupid there is nothing wrong' so I asked her 'OK then, give me your right hand'..well she was amazed when she couldn't move it. After 5 minutes or so she was able to stand up and while friends stayed with her I went and drove the car right up to the church door by which time she walked to the car with only a little help--as we headed down the A40 from Ealing to Hillingdon Hospital she was able to speak clearly enough to plead with me to take her home as she was desperate to go to bed and sleep. She really thought I was making up what had happened because she had no memory of it at all. By the time we reached the hospital there was no outward sign of any difficulty--all the effects of the TIA had passed in under 2 hours, but as her blood pressure was extremely high she was kept in for observation and so was in the hospital when she got hit the next day by a major stroke....this does not mean that if you have TIAs you will one day have a stroke...just the same, having TIAs and strokes does not mean that you will one day have vascular dementia. I am uncertain how this is all medically connected..I can only say for sure that Moggy had it all and it seemed the vascular dementia was a condition that was either caused by the stroke or was made more noticeable by the stroke.
    Physically Moggy made a good recovery from the stroke over a few months, but her speech and writing and word skills and self-care skills all were taking longer. 5 months after the stroke my husband agreed with me that Moggy was not progressing any more and was actually starting to lose skills we thought she had regained...but it was all so much guess work and observation over time--I began to be with her for more and more time until 8 months after the stroke, I was there from before the homehelp left in the morning until it was time for bed in the evening. At that point I wrote a list of the daily things Moggy was struggling with to take to the consultant...who looked at the list and said that these were all things to be expected for Moggy's condition! I thought her condition was 'post-stroke' so asked the consultant 'what condition?' and then heard for the first time that the condition was 'Vascular dementia'.
    Again, remember that dementia and strokes and TIAs are not like a broken bone--they are conditions which are difficult to diagnose sometimes and unpredictable in the effect they will have on a person. I can learn something from having taken care of Moggy that will be helpful in caring for my parents but my Dad is quite different from Moggy and I am having to watch and guess and learn all the time. In a way, Dad's family are all becoming experts in 'Dad with dementia'...we know the people and places that were important to him in the past, we know that he doesn't like broccoli but agrees with me that a good hot cup of coffee in the morning is the Elixir of Life, we have had to rush outside to see the clouds in another blue sky day and experience the pleasure that beauty in nature gives him, we are the ones who most appreciate his response to the neurologists question of 'What is your wife's name?' 'oh that one D..Dot..DOTTIE!' 'How many wives have you had?' Dad looks at the doctor like he must be out of his mind, straightens his back and raises his finger for emphasis 'ONE!' we are also the ones at a loss to explain why he thinks someone came and snatched his credit card out of his hand but we are the ones who know to look in pockets, books, bedside table and the sock drawer before calling the company to cancel the card...of their children, however, I am the one who most often knows why he is kicking a cardboard box around in frustration....BOSSY BOOTS HAS STRUCK AGAIN..yes I have been telling them 'no don't do this, put that down, come here, time for blah blah blah'...unavoidable sometimes, and it does pass for both of them and me too eventually.
    I've run out of steam...I hope some of this helps...it breaks my heart, its taught me alot about myself that I NEVER wanted to know, and the process of caring has both worn me out, changed me, and stitched me so close to Moggy and now my Dad and Mom. Tell us more about how the CT scan and diagnosis procedures go for you.
     
  18. suef56

    suef56 Registered User

    May 10, 2006
    14
    Middlesex
    dear rummy

    Another Yank!! you have hit a nerve with saying you try to reserve your sharing the Alzheimer's experience with people here ... I suspect my friends do have a sinking sensation when they realize they have asked the question 'how are your parents'...when I realize I have been banging on for 10 minutes and their eyes have long ago glazed over I try and remember to thank them for asking!!
     
  19. suef56

    suef56 Registered User

    May 10, 2006
    14
    Middlesex
    hello Kate

    As you introduced yourself as 34, is your Dad very young too? This bloody awful disease is a heartbreaker...and exhausting too. Are your parents able to have some help at home? I was very blessed to have a dedicated member of our council's elder care team who helped us with information and filling in forms to get some help and apply for disability payments--put us on a list for respite care and a volunteer group who sent someone for one or two nights a week when I started to live full time with my mother-in-law (Moggy) and she became very animated at night. Moggy did change quite a bit over the course of the dementia, it seemed in the last year of her life between dementia, shingles, depression and broken hip that we were constantly moving furniture, filling in new forms, and generally going down an icy slope on a tin frisbee with no rudder no brakes and no instruction manual!
    I like the way you called your Dad your 'lovely' Dad..makes me want to know what he was like and how things are going for him and your mum now.
     
  20. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    It is very easy to fall into. Not only with friends but with your own spouse/kids. It became the only thing we ever talked about, pretty much because it was consuming me every minute of the day. If I wasn't there physically, I was there mentally. Wasn't very healthy and I am trying to get my life back and have other things to talk about. It sounds like you have your hands full, take care.
    Debbie
     

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