1. clymout

    clymout Registered User

    Jan 10, 2007
    23
    Devon
    Hi Aowensey,

    I am new here too and my mum has only has a recent diagnosis of AD. I had the same trouble getting her GP to listen and it took several visits before he took action. They do feel their hands are tied unless the patient speaks up and asks for help. Luckily or unluckily for us, however you want to look at it, mum deteriorated to the point of asking for help. (Even though by the time we got to the surgery she'd forgotten why she was there!)

    I think sometimes you have to be pushy, even if it's not in your nature, to get the right care. I used to worry about the consequences of mum being alone and unsafe and that always motivated me to pick up the phone yet again!

    Take heart, when services do become involved things improve for everyone. I do wish you lots of luck and hope that like me, you find lots of help and support here.

    Jo
     
  2. NickiNooNoo

    NickiNooNoo Registered User

    Jan 15, 2007
    2
    Bournemouth
    Hi everyone

    I'm Nicki, I'm 28 and I live in the south of England... Bournemouth to be precise. I just found this site and I thought that I'd introduce myself to you all.

    My nan has just been diagnosed with Alzheimer's and I am now in a place that I have no idea about. I'm legally her next of kin and I find myself unsure about the right steps to take for her welfare and the welfare of the family. The real nightmare of it all is that, she lives at the other end of the country and I'll be doing everything via a plane journey.

    This is all new to me, as I'm sure it is at one time or another to everyone who goes through it. I'm doing all the research I can so that I'm armed with all the information I need when I see her social worker. I don't think she's going to be quite prepared for me. Lol

    But enough about me... It's nice to meet you all and I hope we can speak soon.

    Nicki
    x
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,352
    Kent
    Hi Nicki, Welcome to TP. I`m sure you`ll get lots of help and support here.

    Long distance caring can`t be easy but if your nan has a good social worker, you should both be able to work together, with nan`s best interests at heart.

    The Alzheimers Society has Factsheets on all areas of care. To access these, just click on the i in the top lefthand corner.

    All the best, Sylvia x
     
  4. NickiNooNoo

    NickiNooNoo Registered User

    Jan 15, 2007
    2
    Bournemouth
    Thanks for the welcome guys. Already from links from this forum, I've found out a lot of things that I needed to know, so thank you. :)
     
  5. mich40

    mich40 Registered User

    Feb 10, 2007
    2
    West Yorkshire
    #125 mich40, Feb 17, 2007
    Last edited: Feb 17, 2007
    Hello

    My mother-in-law has been suffering from dementia for several months and recently suffered a mild stroke, as a result of which her condition has deteriorated quite badly. She has problems with her short term memory and often cannot tell the difference between night and day.

    We have just had to take the most dreadful decision of our lives and place her in a home mainly for her own safety.

    We feel so guilty about this, even though we know it's in her best interests, and we are all finding it hard to come to terms with it.

    My husband and I have been to see her for the first time this week since she went in. It was lovely to see her again as we have really missed her, and although very confused she seemed to be settling in ok.

    The hardest part has been telling our children in terms they can understand (they are 14 and nearly 11 and we don't think it is fair to keep them in the dark but we don't want to scare them either). We're hoping to take them to see grandma soon.

    Sorry for rambling on but it's so nice to talk to people who understand..and who in a lot of cases are going through far worse than us.

    It's lovely to meet you all

    Michelle
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,352
    Kent
    Hello Michelle and welcome to Talking point.

    What you`ve recently had to do is perhaps one of the most difficult decisions you`ll ever have to make. It is also the most heartbreaking.

    I remember when my mother first went into residential care. I lay awake all night, wondering what was going on in her mind.

    But, like you, we had to do this for her own safety. There are too many dangers lurking about when people are in a confused state.

    Unfortunately, we cannot protect our children from life. And in life there are harsh realities. They will be upset, no doubt, but children are quite resilient and sensible. They will understand you had no alternative.

    Please don`t apologize for `rambling`. You were not. Talking Point is for sufferers and carers to share experiences, doubts and fears, and perhaps even some light relief.

    I`m sure you will sonn get lots of replies from people who have been in your situation and know what you`re going through.

    Please let us know how your children react when they visit their grandma.

    Love Sylvia x
     
  7. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Michelle, and welcome to TP.

    Yes, it is a hard decision to make, but you would have felt so much worse if anything had happened to your MIL while she was on her own.

    Don't feel guilty, you made the right decision. I'm sure your children will accept that you are doing the best thing for their Grandma.

    Love,
     
  8. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hi Michelle, welcome.

    I see your children are 14 and 11. If I say that my grandchildren are 17, 14,12,8 and six. They have all visited my Lionel in his new care home, the three eldest more than a couple of times in the past 6 weeks.

    They accecpt that now Lionel is being cared for 24/7 and is safe and settled.
    Can understand what some of your feelings are - it is never easy. Stay strong.
     
  9. tazzi22

    tazzi22 Registered User

    Feb 17, 2007
    7
    Edinburgh
    Another intro

    I'm new to talking point too.

    My mum suffered a brain haemorrage in 1999 and her memory started to gradually go downhill from then. Because of the head injury and my dads concern about the failing memory she had appointments at the local memory clinic and scans.

    It was diagnosed 3 and a bit years ago now that she had alzheimers and has gone from being forgetfull to being completely dependant on my dad. She does know who we are but sometimes talks about us in the third party. She has wandered off a few times so is never left on her own anymore so we have a carer one 1/2 day per fortnight and she goes to a day centre one morning per week, it started out for a day but she becomes aggitated after a few hours so it is just a half day for now.

    I work full time but still go every saturday am and wed pm and extra times when my dad has golf and other things on. I'm sometimes run ragged but I want to do it as I don't want my dad to loose his hobbies - he'll need them when she is not here anymore.

    I'm pretty sure she is in the later stages of the disease and wonder how long it will be before she needs more care than my dad can give, i try not to think about what may be ahead, as if things were not difficult enough now.

    We got the POA done a few years ago so that is one thing less to worry about.

    Tazzi
     
  10. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Tazzi, welcome to TP.
    How long is a piece of string? Is your mum's dementia due to alzheimers or vascular? Sounds as though it could be some of each. The illness progresses at different rates in different people - mum could be fine for a few years, or if she were to have another bleed, change rapidly tomorrow.
    Time also depends on how long dad is able to physically cope - some people never go into residential care, others do. My dad coped until mum was not able to weight bear , then for the sake of them both we had to find a Nursing Home.
    Sorry this is not much help. I do know how stretched you must feel trying to work and support mum and dad.
    Keep osting, you will find plenty of support on here.
    Love Helen
     
  11. Clarabella

    Clarabella Registered User

    Jan 24, 2007
    6
    East Sussex
    Hi Michelle

    Sorry - not experienced on forums so may have got the way to reply not quite right here.Hopefully y:confused you'll get it tho. :confused:


    Anyway just wanted to say I identify with a great deal of what you said in your message re the awful decision of placing your mum in a residential care home. I recently had to do that and it was awful plus my mum is still making out (or believing - it is hard to know - that she is just there "until she gets better" - which she won't sadly.

    I am playing it one day at a time. How is it going with you.

    Hope to hear from you and any friends on this great site.

    Take care all

    Clare
     
  12. Spiggy

    Spiggy Registered User

    Apr 2, 2007
    6
    Gloucestershire
    Hi, I am also new here.
    I'm very glad to find this forum, and read about others' experiences.
    I feel a little bad about revealing upsetting issues on this forum, as everyone here of course has thewir own family issues to deal with, but I hope that I can offer some help to others by their reading my experiences which may be similar to theirs....I hope that makes sense!

    I'm 34 and have an 89 year old grandmother with Alzheimer's. She has a place in a specialist Alzheimer's nursing home, but at the moment she is in hospital because she has just broken her hip. I'm mainly writing on this forum on behalf of my mother, who lives on the other side of the country but is not yet confident enough with computers to be able to read the forum herself.

    I will make a proper post about this in the main forum.

    Thanks for letting me join, and I look forward to being an active member.
    Hello to everyone, and best wishes to those who have a family member with Alzheimer's.
    Spiggy
     
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,352
    Kent
    Welcome to TP Spiggy. What a lovely introduction. I`m sure you`ll find lots of help and support here and please try to encourage you mum to post. We`re not all whizz kids.
    With love
     
  14. DanceinShadow

    DanceinShadow Registered User

    Jul 6, 2007
    20
    Hi,

    I'm new. My grandmother has senile dementia and my grandfather (and their home attendant) is her care giver. It's not working out very well though and it's making a mess of my family.

    It's nice to meet you all (though nicer under better circumstances I suppose).

    -Ri
     
  15. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,352
    Kent
    Hi Sheila,

    You were on TP before my time, and I don`t think I`ve seen you since I joined. It`s good to see you`re still in contact.
     
  16. maizie

    maizie Registered User

    Jul 22, 2007
    2
    co.dublin
    HI intro

    Hi my names maizie, I just joined today ive been on another site from america, so decided id try this one, not that sure how it works yet,
    I care for my mother 77yrs she was diagnosed with vascular dementia 3 years ago she has been having continious chest infections since last october, she lives up the rd from me, my brother who lives with her is learning disability, another bro. calls in an stays over most nights, ive been staying with her for the last week due to chest inf. she is getting more an more confused and disorientated,. i really dont want to live with her i find it quite depressing... so eventually i will need to bring her to live with me. she is bit unstable on her feet and can fall easily when she not well, i find it very difficult trying to balance looking after her an my own house, i have husband, boy age 22yrs and girl age 2oyrs living at home, they miss me a lot when im up with mom, i miss my home an them. just feel at times mom is so helpless an lost, then other times she can be a nightmare, just her way of keeping control because she knows she is losing it. i also work 15 hrs a week as a carer in the hospice, . glad to be here and hope i can work out this sight. thanks maizie :) :eek:
     
  17. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Maizie

    Welcome to TP, and thank you for telling us a bit about yourself.

    The site isn't too complicated once you get used to it. The forum you're on is the main one, where people post with problems related to Alzheimer's or vascular dementia. If you have a question or a problem, just click the NEW THREAD button (top left of page).

    Tea Room is where we go to relax and maybe have a bit of fun, away from the problems we're all dealing with.

    Just have a look at the threads, and post into any you like, and start your own thread whenever you're ready.

    Love,
     
  18. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    Hi

    I happened upon this site a while ago and never posted but after watching Malcolm and Barbara I felt I needed to make some connections with people who know the feelings that can come about due to dementia.

    My Mum has vascular dementia. We had always been close but, she started to lose empathy. One particular incidence I remember was when I phoned from holiday ( I was with Mum in Italy) home to my husband to be told our visit to the IVF clinic had arrived I burst into tears. My Mum's reaction was so strange and out of character..it was you had better stop those tears it's dinner time..and didn't discuss it!

    I was lucky and got pregnant first off, but Mum was strange throughout. I thought that she was jealous, she was constantly tired, argumentative and could be dictatorial. It continued once the boys were born, paranoid I was not travelling to see her but nothing I could put my finger on, until I stayed for a week at her house when my sons (yep I had twins) were 8 months old when we were in a supermarket in her own town B and she turned to the checkout assistant and said that she had nothing like this at home. He asked her were home was and she told him B and he looked at her oddly. I realised that she was confused and arguments that we had during the week made sense. She thought she was staying with me.

    She presented well and it was another 9 months before we convinced her GP that there was something wrong. By the time the GP told Mum she had dementia she had lost her insight into what it meant..she was just glad that she had a name for her tiredness.

    I lived over 200 miles away..my sons were toddlers but I tried to visit her every 3-4 weeks. I went down to surprise ehr for her birthday but went to visit a night early as she had been soudning so odd. I discovered her ill, my brother had taken her to the GP who reckoned that she had fallen. I stayed the night. It was my first night away from my sons who stayed with my husband at his parents.

    I checked on her regularly but then fell asleep, exhausted from caring for twin toddlers. A couple of hours later something awoke me and discovered Mum on the floor. I called the emergency doc and husband in that order..luckily they sent a rugby player doc who managed to get her back to bed and arranged a hospital admission as she wasn't well.

    A UTI caused her admission but then 3 days later she burst an ulcer. Luckily she was in hospital. Emergency surgery followed and the dementia progressed. She was assessed as needing nursing care after 7 weeks in hopsital. We found her a good nursing home, with an EMI unit, although she was admitted to the frail elderly unit at that time.

    After a couple of months in the home she was depressed because the home had been so successful. SW wanted to move her to residential but we stuck to our guns and the home ensured their activities co-ordinators kept Mum occupied and she came to enjoy it. By the summer though she was showing signs of aggression to the other residents and was moved to the EMI unit.

    There she has been for the last 3 years slowly fading from her own consciousness.

    Within the last few months she has even at times had difficulty recognising me, although I have moved now and can visit twice a week.

    I have grieved. I often speak of my Mum in the past tense as she has, to all intents and purposes, gone. Once I had done that grieving and accepted that fact it became easier to deal with. It was hard watching my sons gain their skills as Mum lost hers. She loved children but has never been able to be a "nana" to them..although some of my sweetest memories are of my sons sleeping on her bed in the Nursing home just after she went in..when I used to visit with them at afternoon nap time.

    We have done the vigil by the bed when the GP said that the time had come as she suffered with yet another UTI, but when we thought that all hope was gone and were asked who we wanted her undertakers to be she rallied. She amazed everyone by making almost a full recovery after 2 months in bed. She walked, ate and talked. She has incredible will power and strength. She is also content.

    I sometimes find it hard as, for most of my friends, it is a grandparent that has the disease. I am probably a good 10-20 years younger than most of the other "offspring" that visit the home..in fact the home staff have been wonderful to me in many ways. As an exhausted multiple mum they always made sure I was comfortable and had tea. Even when Mum was really ill and I sat for hours I was not chased away as those that knew me knew that for me sitting by Mum was a rest. (Still is!!!!) I have been told that I am unusual in the home,as for most visitors it is a stress, but becuase I have accepted Mum's condition I find it easier.

    I have also, through the last few months, found it easier to think of her passing and, although I know I am going to be sad when that time comes, will welcome it when she decides for that to happen. I am just so scared that it will take a long time as I sometimes feel like my life in "on hold".

    My sons are 5 now, almost 6 and I have had to explain why Nana is the way she is. They are quite accepting, although no longer want to visit and occasionally have wished Nana gone so Mum doesn't have to visit her! But their phrase for it was invented a couple of years back. "Nana is reaching the end of her Numbers". Their theory is everyone has their own numbers and you die when you reach the end of them. They thought this up when they were 4 and it has helped to explain it to them beautifully.

    I never meant for this to be so long. Just thought that I would share part of my story so far, having read and realising how supportive you all are.

    Mameeskye
     
  19. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi, and welcome to TP.

    Thank you for telling us your story, it helps us to get to know you. I'm so glad your IVF worked, and you have your lovely twin sons. It must be exhausting for you caring for them as well as visiting your mum. It's lovely that you can regard your visits as relaxation.

    Having them means that you have the future to look forward to. Yes, you will miss your mum as she gradually slips away from you, but good days lie ahead for you. (Oh dear, I sound like Gypsy Rose Lee, sorry).

    I hope you'll continue to post, and will find comfort on the site, as I do.

    Best wishes,
     
  20. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    Hi Mameeskye

    You may not appreciate but your story is an inspiration - the joy of having two boys is wonderful amidst all the difficulties you have gone through.

    How inspirational of your sons to come up with the view that we are all alotted numbers which determine our lifes span. As one whose numbers end are not so far distant it is reassuring that such innocents see clearly what most of us wish to deny.

    Early onset of dementia is very difficult to cope with and your mother is blessed to have a daughter like you.

    Love

    Dick
     

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