Is Low Diastolic Blood Pressure common with Stage 3 or 4 CKD?

Blood test every 3 months

You are dealing with a lot. I will try to answer one of your questions. According to the Mayo Clinic site on Chronic Kidney Disease, retention of urine caused by prostate disease can lead to kidney problems. A relative of mine had this happen. After the prostate surgery his GFR went up some. I am holding you in my thoughts and prayers.

They are all married and two sets have kids. I'm very good at being able to sleep through just about everything or if being awakened, going right back to sleep. So just moving to the other bedroom should fix the problem for the moment. I know things are just going to get worse but at the moment manageable. Lately he keeps saying he doesn't think he has much time left. He tends towards the drama side so not sure if he is really feeling things or not. If he gets a leg cramp it sounds like you need to call 911 instantly! So I'm never quite sure how bad something is. He obviously has a very low threshold for pain - but that is hard to figure as I've been told I have a very high threshold (I read books during labor).

The baby monitor might be a good idea. Robin went through all this with her husband so is also a good source. We also share the same doctor and both Bill and I have given him permission to discuss anything with Robin.

Julie it is good that you have begun the discussion, and formulating a plan. BUT...the night time wakefulness, getting up, etc is a red flag at this point. Days may be good, but if you cannot count on an uninterrupted night's sleep every night, you cannot do this long term without damaging your own health.
Do you think any of your grandkids would be up for spending the nights in your home, being responsible for dealing with Bill, while you sleep peacefully in the guest room? You could use a baby monitor so they can unobtrusively monitor him from the living room unless needed. That might give you some more time to be safely at home with him during the day. Just tossing one idea out there.
Sue

Two years ago when we moved back to Phoenix from KY the kids had a frank discussion - first with each other and then with me. I had been clueing them in, although at that time we didn't know about the CKD - that came shortly afterwards. In early Jan 2020 he was diagnosed with Stage 3 at the cusp of a&b. Since then he has bounced around that area - in and out of b (currently has been in b for a couple of tests.

They decided that they didn't want either of us ever in a nursing home and that since Robin lives about 6 miles away when the time came she would either move in with us or we would move to her place. Have talked to our doctor about decisions as well. He is thinking palliative care but Bill is resisting and doing a good job of showtime.

He was willing to give up driving 2 years ago. Last week he wanted to drive to McDs which is two blocks away. I talked him into letting me drive. He tried giving directions and would have been completely lost.

He is extremely reluctant to share homes. His objection now is Robin has 3 cats - we have one. He has never been good with people around him.

At the moment Robin is close enough to be here within 10 minutes. Her school has been alerted so if I call they will find her immediately and take over her class. Also have one son and lots of grandkids fairly near by (45 minute drive). Our neighbors are also aware of his health problems and have offered their help whenever needed. Anyone who shows up on my doorstep the day of moving in with a box of See's candy is a 'winning' neighbor!

My biggest thing is I have to keep myself out of arms reach. And keep reminding him.

He is basically at a stage where he is good enough to feel like he can do things himself and make decisions. That sort of in between stage - more good than bad days in a way.

Any suggestions welcomed. All help very thankful for - sometimes just being able to rant is a great thing!

Julie, I am going to say the very hard thing today. Now that your kids have witnessed the decline, and you are not going to be in the same room at night, is it time to figure out the "next step." I am worried about you, your health and your safety.

If the two of you are not already past being safe at home alone, the day is coming. Have you discussed, with Bill or the kids, what you will do? Daily in home help? Kids or grandkids coming to help (not just visit) - either one or platooning? Respite care so you can rest? Full time care in a facility?

Can you initiate this discussion? And if it is too hard for you to do alone, can you get some help from a pastor or social worker?
Please, let me know what you are planning to keep you both safe!

Sue

Bill has started being very restless in bed, especially flinging arms and hitting out in his sleep. Unfortunately I have a Cochlear Implant on the right side and lately he has been connecting! Not good. At this point I think I'm going to have to sleep in the guest bedroom, which I've been reluctant to do as it is on the other side of the house. His mental problems are getting worse (turns 89 in April) and the other evening he asked me to bend over to give him a kiss and he clapped (with strength) both sides of my head, connecting up with the implant device. So now I have to remind myself to stay out of reach even in the daytime - before he was just jerking me down to him in his chair. I'm not sure if the restlessness is a sign the CKD is getting worse. He already takes a slew of pills and really don't want to add more. Some of our kids were visiting from Vegas and were horrified when they saw him do that to my head. He had been doing a pretty good 'showtime' for them.

No signs of infection in blood or urine so far.

He was up at 2:30am again this morning - this time just couldn't sleep. He has always had a problem sleeping. Once I figured (after he showered) that he was safe in his recliner I managed to go back to sleep until 6am. He takes sleeping pills, which sometimes work.

Julie, I wonder if there is an infection somewhere in his body? Many times, people may show some different [not usually good!] behaviors when their body is fighting an infection. The body's blood chemistry is so sensitive. Like @sueinmn mentioned, you are probably not getting good restful sleep, and you deserve to be able to function.

I applaud you for keeping good notes for the doctors, although we both wish it wasn't needed, right?!
Ginger

It's great that you are keeping notes, so you can review them to see if changes are accelerating. If the nightmares, total memory lapses, or other issues get worse, you may want to call sooner.

If I remember correctly, he also has some dementia? In that case, these night-time events can be another version of "sun downer syndrome", wherein people with dementia tend to get worse as night approaches. This can eventually become dangerous to both person and care giver - to him because he may fall or go out while you sleep, thereby putting himself in danger. To you because you begin to "semi-sleep" like you have an infant in the home again - always listening to see if he gets up. You are never really getting satisfying sleep, which endangers your own health and makes care giving much harder. Remember, you are not 20-30 something like you were when raising kids!

Julie, now that he is reaching this stage, the time may be coming when daily help is a necessity for both of you. Maybe it is a time to share your diary with family so they understand the "front" he is putting on when they visit is not who he really is - and that for his and your well-being they need to help you present his options, then implement.

This is just so hard...but I have been down the road as a caregiver and as a concerned friend/family member...it eventually becomes necessary.

Holding you in my thoughts!
Sue