I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: F.A.Q. (Frequently Asked Questions) => Topic started by: happyonhemo on April 26, 2013, 09:31:17 AM
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I'm doing nxstage at home and my husband is my caregiver. We started out 3 yrs ago with me doing it all for myself but after 20 yrs of dialysis I developed b2m amyloidosis and became paralyzed so now he does it all and has been for a year now.Our 30 yr.old son lost his 10 yr.battle to leukemia in December and since then my husband has seemed to lose his grip on sanity.Between losing our son and doing everything himself he is way past caregiver burnout and my options are few. We are all alone here in Florida because we moved here 5 yrs ago from N.H./Ma.to take care of our son who lived here already. The only help I've been able to get is some Phys.therapy 2x a week and my husband just can't keep this up or I don't know what will happen.The only family we have here is my 75 yr.old mother-in-law who does what she can and we really don't have any friends here like back home so it's just us and I can't do anything for myself. I'm thinking that if dialysis wasn't in the picture it would make things a lot easier but the main reason we started nxstage was for the b2m amyloidosis. The more dialysis the better but now I'm trying to find out if in-center nocturnal would be comparable just 3x a week. If I end up in a nursing home that would be the best I could hope for and if I stay it could fix a lot. PLEASE-any input greatly appreciated! :pray; :sos;
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From what I've read here nocturnal sounds the best way to go in-centre. I'm no expert though.
Just wanted to send :grouphug; and to hope your life will settle down soon. Losing a child must be the worst thing in the world.