I try not to come on here....

Discussion in 'I have a partner with dementia' started by maryjoan, May 21, 2019.

  1. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    This site has been a wonderful help to me, with lots of great advice and friendly comments.

    I do, however, feel sometimes, that it is a sign of how well, or not, I am coping, by the amount of times I visit the site in a day.

    I work ( when I can) on my desktop, and every now and again, I dither in what I am doing, and come on here. I reckon in 24 hours, I might visit TP at least 10 times. As I say, I try to stay away, but I keep coming back - a sign, I am sure, that I am still not coping that well.

    This is the 3rd visit today!
  2. Helly68

    Helly68 Registered User

    Mar 12, 2018
    Maryjoan, I feel exactly the same. Supposed to be working, this is about the third time I have been on here this morning.....
  3. padmag

    padmag Registered User

    May 8, 2012
    Me too.I usually come to the site first thing, then if I'm on the computer for whatever reason during the day I usually pop in, and also in the evening. Its really my go to place, I have learnt so much from this site. I don't count how many times I'm on here as its very useful information, and if I can I reply with advice /information. I think we will deserve a degree with all the studying and practical work we do re dementia!
  4. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    Degree and Gold Medal ! I have even told OH's GP things about Vascular dementia that he did not know!
  5. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    Oh - you as well ! Glad I am not the only one who is supposed to be working, and then whose minds drifts to TP again !!!
  6. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    High Peak
    I'm another. Although I only 'joined' recently, I've been coming here for 5-6 years, since I started researching dementia. I work on my computer all day so I generally have a TP window open all day!

    I have been researching dementia all this time and I don't stop. I can honestly say that the best insight into the disease you can get is here on TP. I've read everthing I could find on the web, from basic dementia articles to medical extracts. Like you @maryjoan , I've found myself with considerably better knowledge than the 'experts' over the years, and now I understand why. You can study the vascular system/small vessel disease/brain bleeds, etc, as much as you want but it tells you nothing about the day to day, year to year experience of PWDs and those around them.

    I can't be the only one here, on reading a new, 'Does my mum/dad have dementia?' story, who can 'diagnose' from a description of the person's behaviour. (Of course I would never say that when replying to a post - I have absolutely no authority and would not presume, but...) For that reason, it drives me mad to hear of the frustration of those who are fobbed off by dithering medical professionals with an uncertain diagnosis and/or not listened to, when it is screamingly obvious a person has dementia.

    TP is a precious and extremely valuable resource.
  7. Storm trooper

    Storm trooper New member

    Apr 20, 2019
    Well said!! I must admit I get very frustrated with those professionals that meet with the person with dementia and offer us the family the ‘anytime you feel the need to pick up the phone’etc etc and then when you do you get the ‘I can’t really comment’ you know her better than me!! And that’s only when you call back numerous times after leaving messages which don’t get passed on or if they do they don’t even acknowledge that you have tried to call and so it goes on!! Rant over!!!!
  8. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Yes, Im another one who, on a bad day, is constantly on here.
    On good days, when we can get out and about, I might not come on here at all, but on bad days I dont even log off..............
  9. Starbright

    Starbright Registered User

    Apr 8, 2018
    Ohhh me too. Throughout the day and...always on last thing at night ...(don’t always log on )...I have learned so much since joining and had wonderful advice it’s my go to especially if himself is inaone as we say.

    Thanks so much everyone(( hugs )) A x
  10. campervan21

    campervan21 Registered User

    May 4, 2017
    I always dipping in , lots of advise on here, some of it we have been able to use with my Mac,
  11. charlie10

    charlie10 Registered User

    Dec 20, 2018
    I still come on a lot....not because I am still very much involved with a pwd as my FiL now seems to be reasonably stable and we are so far away that there's very little we can do.....but because I love seeing the support and kindness shown on this forum....sometimes when everyone around you seems to be struggling with health problems life looks very grey, but reading your posts make me see the stars shining (and I hope I don't offend anyone by appearing to overlook the awful situations many people are in....not trying to be a Pollyanna here :))
  12. AliceA

    AliceA Registered User

    May 27, 2016
    I do the same, but how active I am seems to depends on how buoyant I am. It is a bit of a security blanklet, the knowledge base is fantastic. I have been doing courses on line and my marks are very much down to my prelearning on here. Thanks every one,
    At the moment my head is barely above water! But that's another story ..........
  13. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    Basingstoke, Hampshire
    As AliceA says, it is a bit of a security blanket.
    We recently moved home and I am more settled here and my husband is more settled too as he is obviously feeding off me. I haven't been on here for a few days and put it down to being too busy settling into our new home. But this post has made me think. I now suspect it is because while things are running smoothly I haven't needed my security blanket.
  14. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    East of England
    I am worried now and hope you are okay. Only resurfaced after my respite break to see how you all are and not alright in some cases. Thinking of you.
  15. care2share

    care2share Registered User

    Jun 14, 2015
    Yes, I'm yet another who comes to TP most frequently on the days that I'm really beating myself up about the whole situation. I would say that too of the NH visits. You have to give yourself breaks. I love TP and my goodness, how much I would miss it if wasn't there. However, if I've spent too long, I can come away with my head pounding. I've learnt a lot about things I would never have imagined and could not foresee having any knowledge of. I thank all of you for sharing your experience and knowledge as I know what you've been through to gain it.
  16. AliceA

    AliceA Registered User

    May 27, 2016
    Joining this group was the best advice I was given. When I did a course it gave me a head start.
    When I feel down I see others in worse places, when I feel buoyant I can reach out.

    I am struggling a bit there have been too many demands, mostly beyond my control but affecting the others. Choosing which balls to catch and which to let bounce is a real Catch 22! At the moment my own health is affecting to much, endless appointments and treatment are sapping my energy.
    No doubt it will pass but just makes the present moment difficult.

    I too should be getting on to prepare but this place with you seems warm, thank you.

  17. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    Indeed, coming on here gives us a bit of a 'heads up' on the day. We can help those who are starting on the journey, and learn from those who are further down the road. But, and mainly, we find empathy, where there is none in the outside world.
    @AliceA - do take care of yourself and your own health issues,which I hope are resolved.....

    I do wonder what the average age of the good people on here is.......?

    I am 70
  18. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    Chard, Somerset
    I'm no longer a carer but come in and have a look at least once a day. I can honestly say that this site taught me more about dementia in all its forms than the professionals. I don't post as often as I used to (regulars now would probably say 'Who the hell is she?') but if I think I can offer some insight or support I still contribute the odd comment.
    Having looked after someone with dementia and having absorbed all the support, factual and wholistic, I hope I am a slightly better person for it and certainly hope that my mum benefited from my better understanding and empathy with her plight.
    And yes, I still (like now) take a break from sitting at the computer doing the paid for job...
  19. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Im 62 - Ive just had a birthday!
  20. AliceA

    AliceA Registered User

    May 27, 2016
    I am 82 1/2, the months start to matter once over 80! :):):) Perhaps the weeks matter over 90? I will let you know:):):)
    My mind is still curious and flexible, it puts my body to shame!
    I have another treatment due next week so I am trying to fit in too much before hand.
    My last session took me a while to recover, the consultant worries about unstable BP, there is a heart issue, another has flagged up blood sugar, I think it a blip but more tests.
    I feel even those Carers with a philosophical attitude have the unlying stress that come with the task. Sometimes knowing and doing the right things just do not work.
    I have found a place that offers respite I hope to see it next week and get an assessment in place for my husband. I hope we can arrange something when I am well enough to get the benefit. II am tempted to go as there is a possibility of a self catering flat in the grounds. I could read, write and lunch at the house. However time is an issue as it will not be empty for long. My heart tells me it will work out for the best, my mind says make sure to cross the Ts and dot the Is.
    Our neighbour is cutting the front grass, the kindness of strangers seems the life blood of society. A charming 60yr old has picked my husband up for four hours at a day club, I hope she charms him into wanting to continue to go! He queried it the other day, so I held my breath!
    Thank all for your concerns, I feel better than last week.

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