DH has had Chronic Kidney Disease for years - Stage 1. In December his numbers spiked and he was suddenly in Stage 3. We were set to re-test this month when he just passed out (twice) in church 2 weeks ago. Needless to say, his next ride was an ambulance to the ER. We stayed in the hospital for 3 days and nights. They discovered within hours that he was severely anemic (hemogloblin of 7). They started looking for where the blood had gone and couldn't find it anywhere. They admitted him and kept on testing. A scan showed not much, same thing with a bowel check (no blood there). When his creatinine came back extremely elevated, they called in a kidney specialist who immediately started talking dialysis to which I said, no, that's not going to happen. The next day they did an ultra sound of his bladder to discover that his bladder was so enlarged and loaded with urine and this was due to a very enlarged prostate not allowing the blood to come through and urine backing up into his kidneys causing them to start shutting down. Catheter inserted and plan in place to do TURP procedure (rotor rooter a new channel for urine to pass). The catheter is the biggest PAIN (for me) of anything so far in this whole ordeal.
So, we went home to wait for his bladder to heal enough for the procedure. Meanwhile, his doctor called to say that she had finally gotten the last labs from the hospital and he has markers for Immune Cell Cancer - most likely multiple myeloma. Now we have Kidney specialist, urologist, and hemotologist, in additiion to his PCP and Neurologist. There really isn't anything that they can do for any of his issues without causing him so much grief. These things are difficult enough with a patient who knows what's going on, let alone a man who doesn't know what this thing attached to his penis is for.
My question for any of you who have traveled this path: what do you tell your spouse? Do I tell him that he has incurable diseases in addition to his AD (which he doesn't really get that, either)? That he will die from this sooner than later? Does the doctor inform him? Will he remember, probably not.
I think these additional health issues are probably a blessing. He will not have to endure the rest of the AD journey and I can hopefully keep him mostly pain-free and calm. Chemo and dialysis? I can't see any good reason to put my sweet husband through any of that?
I am so sorry. I know how hard this can be. Back in Dec DH numbers on his PSA test kept going up. We went to see a urologist and he said anything we did would be very invasive. We decided to just let it go. DH knows that we saw the doctor. We never talked about it again. We opted to just let it go. AD, prostate, diabetes, and extreme weight loss. We just don't talk about it. Not that DH would understand at this point. All I want is comfort care. That is why we started with Hospice in Feb.
All I have said is this is the meds the doctor wants you to take to help with any problems.
Thank you blue, this is a hard "hitch in the road" to take. With all of the "hitches" that come with this disease, we eventually accept them and move on. They all carry with them another round of grief. I know this is coming and I also know this is much more merciful than living the full term with AD. Still very hard to imagine life without him.
Very good advice, Blue, I will let the doc deliver the diagnosis and dh will allow me to take care of everything from there on. It's just so hard explaining over and over again the "why" of everythihg. I have to admit, the catheter almost sent me over the edge - no training in to speak of and all kinds of wrong turns. Just when I think I've got it, the hammer falls. Still learning to roll with the punches.
Oh my goodness( mothert )I am so sorry, and so glad you have brothers and sisters here that have gone ahead of you in this journey. Your poor dear man I hope they can keep him from suffering too much, and all my love to you.
This is terrible news. Like you, my DH also has multiple health issues, any of which could deal the final blow. So much of what we do for our LO depends upon them, how far into the AD they are, any level of understanding etc. I think the advice Blue gave you was sound. It sounds like the worst of it will be the bladder issue, otherwise I would think you would be able to give him comfort care. I hope the doctors can explain to your DH what is going on but not scare him...I think when our LOs are so confused and don't grasp news of this sort it can make life hard for them and us with all the questions that are sure to follow that we can't really answer either.
Thank you all for your good advice and concern. Nothing easy about caring for a lo with AD and when you add on other fatal health issues, well.... My trouble is that I never learned how to sugar-coat anything, I'm too blunt and honest. I need to learn how to just keep my big mouth shut. I start to explain something to dh and I can see his eyes glaze over and I realize that I need to make it simpler, but I just haven't found a way to do that yet. I will really miss him. Although, I think the life he looks forward to is much preferable to the one he has today.
mothert i would look into the TURP procedure prior to doing that too. its a fairly invasive one as well and if i remember when our dr suggested my DH have one, the post operative recovery was not something my DH could have done with AD. and there was an issue that he would have the dribbles constantly after. there was no guarantee. but if yours is of such a great concern that he cant urinate then it may be crucial. so sorry to hear of all the ongoing medical nightmares you and he have. i dont think i would mention anything to my DH if it were me. like you say it would not stick- any of it within minutes and only worry him further. not knowing is bliss sometimes for them. and us. like many of us at this point in our journeys, invasive anything is not something we are wanting to bear, and just hope to keep them as comfortable and painfree as we can. and hope something other than end AD takes them sooner as a merciful release. divvi
Years ago I worked as a nursing assistant in a SNF and my patient was a old guy who had "organic brain syndrome" (30+ year old name for dementia) He was completely confused, needing total care. He had an enlarged prostate that prevented all urination. Instead of a TURP (yeah, it is pretty invasive) the docs put in a "Suprapubic catheter"
Much like a G-tube for used for feeding it was a catheter that was placed through the abdominal wall just over the pubic bone and into the bladder. Insertion was a simple bedside procedure. (no general anesthesia) It kept the bladder empty and there was no real complications beyond cleaning and dressing changes at the insertion site. While he did not walk much, he was able to still do so, the bag was just hung on the walker. The patient didn't pull at it because I suspect it did not stimulate the genital area. A fairly low tech solution to a chronic problem.
Thank you, m-mman, I will talk to his doctor about that. I'm hoping that I can keep him home until he moves on to his new home with the Lord, but I really don't know what to expect at this point. The Hematologist is reviewing his records and will get back to me for an appointment when hey get around to it, I guess.
Do you need to empty the Suprapubic catheter, too, and how do you clean that? I soak dh's drainage bags in bleach/water for 1/2 hour after changing him into the other bag. The addition of the catheter really adds a significant amount of time to my day - it's not hard, just time-consuming and he doesn't understand why he has this "thing" hanging off his penis and can't go to the bathroom to pee. I have no idea how we will get through the rest of this.