Families!

Airwave!
Airwave! Member Posts: 2,428
edited 11. Jun 2019, 10:50 in Living with arthritis
I may be getting a diagnosis for what might be a life threatening condition and woukd like to talk with my family about it, all to no avail, they accuse me of being pessimistic and are happy with putting their heads in the sand and ignoring me. If the diagnosis is different it will still mean a big change in outr lives.

I see talking about such 'difficult' subjects as a positive, I have no wish to leave problems behind me but rather to leave a worry free tribe if indeed thats what life brings.

I do not need sympathy just to read how others deal with their families.

Comments

  • SusiM
    SusiM Member Posts: 87
    edited 30. Nov -1, 00:00
    So sorry to hear this. I hope things go better than you are expecting with your diagnosis.
    Talking to families can be hard, you are not alone. They just want you to be well and think that talking about it will somehow make things worse. Sometimes they just dont understand what chronic illness is like so they cant be empathetic. Let them call you pessimistic and say what you have to say anyway.
    Regardless what their mindset is l think you should make them hear what you have to say. You have the right to be heard and its in their best interest to be informed also.
    However try not to think the worst as yet. Best wishes.
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Airwave, it's difficult. Really difficult. I'm entirely with you that openness and facing facts is the best option but.....

    I've had a few brushes with mortality. In January, the doc admitting me to hospital with pneumonia and a collapsed lung offered me a DNR notice :shock: I'd have told him where to stick it if I'd had the breath. But my week in HDU was extremely dodgy. The family were, as usual, terrific but I did have to tell each individual, at one stage, that I loved them very much because the surgeons said the procedure needed could see me off.

    When home I decided to 'sort out my affairs'. All my sons wanted me to leave them was photos so I started on big, backed up, albums. Now, whenever I mention it, I'm 'being morbid'. I have a very dodgy, very old TKR and, above it, a ditto THR. The surgeon says he'll only operate as a last resort as it would be so dangerous for me. My knee has since 'had an episode'. My beloved Mr SW wants me to see the surgeon to get it fixed. Whaaaat?

    My family are lovely, kind, generous, caring ostriches. I suspect yours are too. I've no idea what you and I and, I suspect, many others should do but thank you for this thread. I see it as very valuable for lots of people.

    (I'm ignoring my ostriches. It's not morbid: it's realistic and, if I need to ask their opinions on my preparations, I shall do so.)
  • stellabean
    stellabean Member Posts: 307
    edited 30. Nov -1, 00:00
    Airwave I am so sorry you are facing this let us hope things go better than you think, and that any preparations you have made are not needed for a long time. I think your family are not alone in their avoidance of the possibility of loosing you. Had you not tried to talk to them they could have been upset that you hadn't mentioned the possibility of the bad news it is the sort of situation where you can't win.
    My experiences with my family have been mixed over the years when I was diagnosed with crohns I lived at home my father was relieved I had a diagnosis as he was fed up of me being ill!!. When I met my hubby my mother was quick to tell him I had crohns ( he already knew )I think she thought it would scare him off it didn't .
    We have pretty much taken all life's little problems head on I nearly died when I had our daughter ( eclamptic fit in ITU for 9 days ) the discussion on having more kids well we tried but after being told I was just going to keep miscarrying we stopped at 6 misses.Hubby's malignant spinal tumour which even with treatment had over 50% chance of coming back ( it hasn't) .
    My injury OA and now RA we just talk it through and try to look on the positive side as much as we can. But our daughter tries to ignore everything unless she thinks it will affect her, we still try to inform her it is her fault if she doesn't listen.
    May be you won't need to have " the difficult" conversation with your family but if you do have bad news they may be more inclined to have the conversation when you have a diagnosis.Take care Airwave.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I am so sorry, Airwave! what a sad situation this is. Suddenly you and your family are confronting the reality of mortality, it's moved from theoretical to all-too-real (which it always was but we don't like to think about it). Earlier generations were very familiar with death because it happened all the time and in the home. For us death is more commonly a distant event, it happens away from us. We are not familiar with it and what it entails - it frightens people and your family are, I suspect, scared.

    I agree with you that it is better to be open about it and talk it through but people don't like or want to because it's not a comfortable topic. It's a shame that the family do not acknowledge or appreciate your wishes regarding how things are left but maybe, once things are clearer, they might be able to address the issue with you and for you. I hope so. DD
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Airwave I'm truly sorry you find yourself at this place right now, and I guess all families will respond differently. My parents and siblings would be of the "if you don't talk about it, it won''t happen" variety I think. My husband and children would be there to listen and to discuss as much as each of us needs or wants, but life experiences are very different. My siblings have little or no experience of interactions with end of life situations, but my husband is a priest, my son is a hospital doctor and my daughter is very wise and compassionate and has spent her 33 years in the midst of us, and as an animal keeper has to make difficult decisions for animals she cares for.


    Only you can know and sense how much your family can cope with discussing, but it's your body, your life and your decision -if you feel the desire to inform, understand and ask for support then speak to them, maybe a little at a time as each of you digests information at a rate you can cope with. If your family can't cope with those conversations maybe your GP will listen and support, or if you do church, someone from within your church family.

    I truly hope that the news you get is better than you fear, and send you blessings for the next few days and weeks as you digest whatever you hear.
  • Airwave!
    Airwave! Member Posts: 2,428
    edited 30. Nov -1, 00:00
    Yep, you've all nailed it on the head. Thamks.
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    I know you're not the mopey type but do remember your arthritis family are always here for you.
  • Airwave!
    Airwave! Member Posts: 2,428
    edited 30. Nov -1, 00:00
    Well I had a diagnosis and it wasn’t as feared as the doctor suggested. A lesser illness instead. I was glad that I ‘cleared the air ‘ with my family though.

    Thanks for all of your thoughts, appreciated.
  • stellabean
    stellabean Member Posts: 307
    edited 30. Nov -1, 00:00
    I am glad your diagnosis was not as bad as feared, but any more illness isn't ideal. At least you managed to talk to your family it can be frustrating when they don't want to listen. Take care.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I was wondering how things were going and I am pleased that the diagnosis is less severe than expected. I hope this has eased some of the strain on the family and, more importantly, you. DD
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    I'm pleased, Airwave. Obviously not great but it seems it could have been much worse. And well done on 'tackling' the family. You have all too much practice with living with illness. I'm sure you'll cope well with the new nasty.
  • frogmorton
    frogmorton Member Posts: 28,049
    edited 30. Nov -1, 00:00
    Airwave I'm sorry you've had such a traumatic time, but am glad to hear you have the lesser of two evils.

    When my youngest daughter had cancer we DID talk about serious stuff because SHE wanted to.

    It's sensible.

    Love

    Toni xxx

Who's Online

10
10 Guests