My father is giving up the lupus fight

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My father is 58 , has had lupus for 20 years. For a while now it has been attacking his kidneys. He needs kidney dialysis which he is refusing to do. He has now been diagnosed with Parkinson's . He can't speek more than a dozen words at any given time. He can't hold a pen to write his name., due to the shaking. He is refusing any more treatment now. He is preparing for his demise . I live 6 hrs away from him , and. Can't even communicate with him anymore. I am in my 7 year of lupus myself and I am having trouble coping with all of this. I am so depressed.

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  • Posted

    Hi Tracey

    My heart goes out to you.  This is a very frightening and sad situation you find yourself in.  It is a little while since we heard from you and I now understand why. It must be very frustrating and upsetting not only knowing your father's health situation, but that you are so far away from him!  Stress of this magnitude will have an effect on your own health. Would it make you feel better if you could write down your feelings and ask somebody close to him to read it to him on your behalf. I know it's not the same as being at his side but it would give you the opportunity to put down on paper how you feel.

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    • Posted

      Hi jean. So glad for your reply.  True ..I have been quiet with the lupus discussion. Since I last spoke with you.  However I have answered requests for help in other discussions,... As u know I have a range of health issues.. And probably some that I haven't mentioned yet. Well as family hystery goes, my mother passed away in 2000. Since then , my father has been quite astranged. I have his email.. Which he doesn't reply.. I have his mobile number.. Well a few words that is... Well Facebook.. Just the same.. He sold the family house.. Moved... I don't know where... My sister takes care of him. She won't speek to me , as I have lupus too... All so much a strange situation... I am feeling like I am going mad. Or something like that.  U know with the lupus u don't think straight , he has had lupus for 30 years not 20 yrs. I'm just so utterly confused. So depressed. I even called the mental hotline today. Not that they helped any.  Dad did however ask " what things I want " from his estate. I suppose there isn't anything I can do really in this situation. With the family the way it is... I suppose that just knowing that I have some support .i guess. I just feel that there is nothing that I can do , but just wait for a phone call. ????? Just so depressed. I guess. Thank you for your reply. I guess it isn't easy replying to this . Actually I didn't expect a reply... So thank you.  Hope to hear from u soon.. God bless.

       

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    • Posted

      Hi Tracey - I may not be able to help, but sometimes it is good just to be able to talk..  Most families are complicated - small issues become big problems! Maybe since the passing over of your mum he has not been the same and has slowly given up.You clearly have made efforts to keep in touch with him and I am sure he knows that- time passes so quickly and before you realise it years have gone by. I would give his question a lot of thought about having a "keepsake" and in years to come you will have something to remember him by - and trust me that is important...my lovely dad died 26 years ago and I have a couple of lovely pictures of him and a watch he used to wear.  Helps you remember when the times were good!!

      Tracey - whenever you need to put your thoughts down - I will support you. Take care..I am only at the other end of the keyboard!!!!

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    • Posted

      Thanks jean... I have been speaking to my best freind today ,and it has helped a great deal.. So knowing I have a lupie mate does wonders. Like u said , I just need someone to talk to , and lupus is hard to understand. Now dad has Parkinson's , and he can't communicate anymore. I guess that it has taken a tole on my mental state at the moment. As u know lupus is hard to deal with at the best of times. Well now I need to try to forget my pain and think about how he feels , now with the Parkinson's. Lupus shaking is bad enough. Parkinson's is worse.  Well all things considering , I guess he has done well so far, for what he has gone through. I can understand why he is giving up. Geez I feel like that sometimes. But aver all he has suffered a long time .  I suppose like u said . He is thinking of keepsakes , so like mu mother , I guess . Just hold on to that and the memories I have of him being healthy before lupus.  Geez mt head is ticking too much.  God bless. Thanks.
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