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Teacher working with dementia

Discussion in 'I have dementia' started by aprilbday, Jan 27, 2016.

  1. aprilbday

    aprilbday Registered User

    Jan 27, 2016
    329
    Washington, DC USA
    Hello Everyone,
    First time posting. From Washington, DC. The neurologist says I have some form of dementia. Tomorrow I will get a PET-scan. I hope to have answers to so many questions. Anyone else received a PET scan? What did it reveal? If nothing shows up, does it mean I am just crazy? It's all worrisome to me. I just want to know. I have to know. I have 7 students in my class, and I sometimes forget their names. Of course I cover it up ok, but I know even if they don't. I say "good morning" to the same people. I have left my stove burner on twice. I don't remember what day it is unless I look at my Apple Watch. Repeatedly. I cover this issue up and laugh at it, but it truly is not funny when I am alone and wondering. I am 61 in April. Thank you for this site. I am confused about the our local chapter which is for carers and I do not have one yet. This is a horrible disease that does a sucker-punch because some times you are so connected and other times the switch is off and on. But what if it's not dementia? What if it's just craziness? I don't want to be crazy, and I don't want dementia. I guess the PET scan will help me to discover what it is. Took almost an hour to write this!
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,343
    Merseyside
    Welcome to TP :)

    I hope the scan goes well tomorrow.
    Keep posting here as you will get lots of support.
     
  3. Pixie...

    Pixie... Registered User

    Mar 15, 2014
    29
    West Midlands
    hi April
    Good luck with scan results, I know how you feel, and I found once I got a diagnosis, things calm down and you don't feel so scared. I was diagnosed with early onset Alzheimer's 2 years ago and I'm 56. I had to take ill health retirement with my job, but once I received a diagnosis, I researched and got signed up to a suitable clinical trial. This gave me hope ( which is really precious) . I'm taking aricept plus clinical trial drug and my symptoms have stabalised. I still work part time with another job and although I hate having this disease , I can manage it well for now. Contact me anytime if it helps. Wendy
     
  4. john51

    john51 Registered User

    Apr 26, 2014
    289
    Male
    Dunstable, Bedfordshire
    Hi April day
    This is just a quick post as I realise today is not a good one.
    Like you I was a teacher, but in UK.
    The diagnosis came as a relief as it explained many things. I have had to retire.
    I will try a better post later if the fog in my head clears.
    John
     
  5. aprilbday

    aprilbday Registered User

    Jan 27, 2016
    329
    Washington, DC USA
    Thank you so much!
     
  6. aprilbday

    aprilbday Registered User

    Jan 27, 2016
    329
    Washington, DC USA
    John,
    I am anxious to hear more from you! I will post again and look forward to sharing with you. I understand perfectly about the day's progression- not the exact word I am looking for. Thank you
     
  7. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,427
    Male
    Cornwall
    Hi I was diagnosed with Alzheimer's in 1999 age 57 and had PET scans in 2003 & 2004 which confirmed my dementia frontal-temporal-dementia that didn't stop me from continuing to work until my retirement age of 65 so ok you may struggle a bit and my advice for you it don't give in and carry on living your life as before if you do that dementia isn't so bad definitely no pain ok maybe better if we didn't have it but I can think of others with far worse medical problems this is only my view on my dementia
     
  8. john51

    john51 Registered User

    Apr 26, 2014
    289
    Male
    Dunstable, Bedfordshire
    Hello once again April
    Things change so quickly, I can be good one minute and then the fog in m head descends and I can be having a bad time just minutes later.

    I was diagnosed in April 2014 with vascular dementia having had a couple of strokes. The diagnosis was made using neuro-psychological testing along with MRI and CT scans and the history of strokes but no PET scan.

    The PET scan, I believe is used to confirm the type of dementia, not if dementia is present. You most certainly are not mad if nothing shows up.

    More recently, whilst taking part in clinical research I was shown to have alzheimers with lewy bodies in addition to the vascular dementia, so now my diagnosis is mixed dementia.

    Whilst I was teaching, I was an advanced skills teacher. I was routinely judged as being an outstanding teacher according to the British framework for school inspection. I was also a teacher trainer.

    In the year or so before diagnosis my teaching was regularly judged as needing improvement or inadequate. Despite being aware of the diagnosis, my employer was looking to start competency proceedings against me, leading to dismissal.

    I had an excellent consultant, and with his support along with the HR consultant and my own GP, I was granted Ill Health Retirement.

    I now fill my time as a volunteer hearing children read in a local primary school. The school is well aware of my problems, and accepts what I can do, and the fact that this can be variable.

    I look forward to sharing experiences with you, and hopefully helping you through the bad times to come.

    Regards

    John
     
  9. aprilbday

    aprilbday Registered User

    Jan 27, 2016
    329
    Washington, DC USA
    Thanks

    That quote was very nice! I had the scan but was frighten by the Lack of professionalism amoung the staff there. I could hear them laughing and talking loudly to one another while I was in the tunnel.
    It was so awful, I cried. I have not stopped shaking.
     
  10. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,343
    Merseyside
    I'm so sorry you had such an upsetting experience. It's over now so can you do something nice?
     
  11. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    I love TP. Welcome April and I'm so sorry you had a bad experience with the scan. I had a tunnel scan for different reasons and I too found it very frightening but I can reassure you that the feeling goes away. It is so good to hear from everyone about how they coped/are coping with work and the daily demands. TP is so supportive, please stay connected. xxxx
     
  12. aprilbday

    aprilbday Registered User

    Jan 27, 2016
    329
    Washington, DC USA
    Hi Wendy

    Thank you so much for writing! I had the scan. I was not too happy when he said they had to repeat the scan_ exposing me to more radiation! I did not move so I think they were goofing off and messed up something that required a repeat. I was very upset! I am still teary_ eyed about it.

    Aricept makes my face tremble-when it was upped to 10 MG's- now 15.Wow! You have a clinical trail drug that is working? Wonderful!!!!! Hopefully it will completely stop the progression!

    Have you mentioned anything to your work colleagues? Do you find that they are knowledgeable about dementia? Do you need any disability considerations at work?

    Thank you for writing to me. Its helpful to hear from others and I understand that we have to communicate as we feelnup to it.
     
  13. aprilbday

    aprilbday Registered User

    Jan 27, 2016
    329
    Washington, DC USA
    Yes- I am in bed with my heated blanket on trying to calm myself. Lol
     
  14. aprilbday

    aprilbday Registered User

    Jan 27, 2016
    329
    Washington, DC USA
    Tp

    Lol! Could not figure out wheat TP was at first! I thought..."Why is she talking about toilet paper?" Lol.
    Duh, right?
    It is very good to find out about how those of us still working are handling it!!!! I love the responses!
    Thank you for the encouragement.
     
  15. aprilbday

    aprilbday Registered User

    Jan 27, 2016
    329
    Washington, DC USA
    Unbeliever!!! Wow!

    What a wonderful role model you are Tony! Wow. What type of work did you do? This is amazing that you worked for so long with it. I agree- there may be worse medical problems but Tony in the end...this one rates way up there- horrible way to die I should think- just horrible!
     
  16. aprilbday

    aprilbday Registered User

    Jan 27, 2016
    329
    Washington, DC USA
     
  17. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,427
    Male
    Cornwall

    Hi aprlilbday Thanks for the comments but I'm not so sure I would be a good role model though , I was a building Surveyor for 25 years prior to my retirement , I’m the fifth member of our family to have dementia my Mum Dad Ant & Uncle all had dementia and long livers lived into their late eighties & nineties and all died of cancer so could be another 18 – 20 years for me yet just got to keep going
     
  18. Irishgirl57

    Irishgirl57 Registered User

    Jan 21, 2014
    189
    Florida, USA
    Good afternoon and greetings from Florida >... Welcome to one of the best places to be, I find so much comfort dealing with other people like myself and support
    from all that post here ...

    I had numerous doctors in the beginning, and I went to a neurologic center for testing. I was diagnosed at 53 years old with cognitive dementia. This came as quite a shock to me and my family as I hid my symptoms for many years ... Or made jokes about them if discovered. Once all the tests were back they wanted to do additional testing to zone in on my cognitive areas that I was having problems with. We continued at the neurologic center and still go there for counseling for me do you have a safe place and for me and my husband to go and discuss dealing with my own illness. I don't drive anymore nor do I work. I avoid stressful situations and people that bring drama to my life as these things seem to make my cognitive issues worse ... This includes any family or friends that don't except me for who I am ...

    The beginning was rough, the one thing my doctor told me that made total sense to me was that they were going to treat the symptoms not the disease. Since then I have been up and down but I have a good life. On my down points they change my medications around and things get stable again.

    I have good days and I have bad days, I have good moments and I have bad moments but I consider myself very lucky. My favorite saying is acceptance is the key ...

    Prayers and blessings to you on your journey and remember we are all here for you ...
     
  19. aprilbday

    aprilbday Registered User

    Jan 27, 2016
    329
    Washington, DC USA
    Irishgirl-your dog is adorable! I have two Maltese. One is 6 years old and one is a puppy I am trying to stay away from until the radiation gets out of my system. Hard. She's a licker!
    I appreciate your sharing your story. So sorry about the hard start but sounds like things are better for you!
    I am still upset so maybe some of my upset is the scan itself. Twice was not expected.
     
  20. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,682
    North West
    Ho aprilbday. I'm so sorry to hear about your situation.

    My wife Sue was a teacher and was first referred to the memory clinic at the age of 50. I was a headteacher at the time though I'm 5 years older than Sue and have been retired for some time. From my perspective the importance of a supportive and understanding senior management cannot be over-estimated. I don't know how different things are in the US though I did teach there on a 1 year exchange in the 80s.

    Sue was hounded in the school where she taught when the symptoms started. Eventually she applied for other jobs, with my help and encouragement, and managed to get one in a school where the head and other staff were completely supportive. In the first year that she taught there she had about 4 or 5 days sick leave. But it became too hard to keep going when a new head was appointed and immediately started to harass her. The educational climate in the UK is now such that this is likely to be common. She became physically ill and by the time she had recovered physically we both realised that because of the way she had been treated she would not be able to go back. Even with the support of her union, it took a long, long time to get her ill-health retirement agreed.

    I sincerely hope that things work out better for you aprilbday.
     

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