My sister came over yesterday and spent the night. It was nice having someone here to talk to. My daughter also came over and picked up Chinese food on the way.
My sister said something that is very true. I have a video monitor on Bill so I can see him at all times, but I still go in there just to look at him and make sure he is ok. She said that I was going in there and sitting for me and not for him. He doesn't know I'm there so I'm not doing it to make him feel better. She is right, but don't we all do things because it makes us feel like we are doing something. I feel so helpless at times. I just want to make things alright and I know I can't.
He has been in bed since I put him there Saturday night except for about two hours on Sunday and about the same length of time on Monday. He slept through the night and at 7:30 is still sleeping.

I'm hoping when he wakes up he will be calmer and I'm able to get him up today.

Joyce, I can't tell you the countless hours I sat beside Helen's bed, not because she needed me there but because I needed to be there. My heart just breaks for you my friend.

Joyce,
I do that quite often when Mom's in bed. Although I have the alarm in her room and I can hear if she gets up, sometimes I just like to look in on her. Even when she's in the family room sleeping in her recliner, I go up to the recliner to check on her, and my kitchen is right by my family room. I guess I just want to see if she's breathing.

So you just keep checking on Bill. It's our nature I guess as caregivers, and there's just no wrong or right way to be. We just have to do what our intuition tells us to do.

I hope you were able to get Bill up today and that he was a bit calmer. And it was so nice to hear that your sister stayed overnight with you. It would be nice if you could plan that more often with her or someone else. You need to have some company with you once in awhile.

Let us know how Bill did.

Jackie

That's quite alright to go in to be with your husband. I think that is the natural thing to do, to be with a loved one when they are sick or in distress. Doesn't matter if they know whether you are there or not. Who knows, maybe a part of them does know. What is important is that you are together, like you have been throughout this whole thing.

God be with you and Bill, Joyce. Your devotion to Bill reminds me so much of my dad's for my mother. He loved her with every fiber of his being. I am lighting a candle for you and Bill...just because I care.

Dearest Joyce,
I've been offline for a while and missed this. I am so sorry
to hear how hard it's been. Keeping you and Bill in my
prayers, and I hope things settle back to more "normal"--
whatever that is!--soon.
Carol

Bill is still sleeping. He seems to rest well at night. None of the restlessness he has during the day. Even with 1mg of ativan, he can't be still during the day whether he is sleeping or awake.
He has been pretty much in bed since I put him there Sat. night. I've had to give him ativan to decrease the agitation and restlessness. He's been getting 1mg about every six hours. Maybe that is why he sleeping. I know when he takes one it will usually knock him out. But in the morning it has taken two to get him to calm down. I tell myself I will not give it to him, but when he starts the moving around and pulling at his blankets, I break down and give it to him. I can't stand watching him like that.

When I changed him this morning, he was wet but not soaked like he usually is. The diaper was stained with the very dark urine. I have tried getting water in him but I can't pour it down him. Yesterday I was able to get him awake long enough to get him to eat a bowl of oatmeat,and drink 4 oz of water for breadfast. Lunch time was just a few bites of applesauce and even fewer bites of lunch. His dinner consisted of about 2/3 cup of pureed turkey ala king and a few sips of water between bites. I got him to eat about six bites of half melted frozen ice before he fell asleep.
This morning when I changed him, I swabbed his mouth out and got him to take a couple of sips of water. Then he went back to sleep. He is resting pretty good right now.

My sister said it seemed like I had a revolving door yesterday. First was the aide, then the social worker and then the volunteer. All before 12:30. When the volunteer got here, we (my sister and I) went out for lunch and a little shopping. It was nice to go and I was able to forget for awhile. We were gone for three hours. Ron (volunteer) enjoyed his visit with Bill, because Bill slept the entire time and Ron was able to watch the Michigan football game on our big screen tv. He did shovel the driveway and sidewalk before he even came in the house. There wasn't much there, maybe two inches, but I thought it was pretty nice of him to do that.

There is nothing else I can tell you about Bill for right now. If I get a chance, I'll be back and let you know how he is when he wakes up again.

I hope everyone had a good New Years Eve

Keep an eye on that urine output Joyce. That always scares me.

I'm not the first person to go through this phase, Lori, and I won't be the last.

Everything that happens reminds me of something I've read hear. That gives me some idea of what to expect and what to watch for.

He woke up this morning and wasn't as agitated. Still restless and perpetual movement, but not ativan agitation. I crawled into his hospital bed (thank goodness for the rail to keep me from falling out) and held him to quiet him down. That worked and he fell back to sleep. I've changed him three times and each time he was wet. No BM since Mon. so I'm actually looking forward to that.

His older brother called to wish us a happy new years, but I was so upset I told him I didn't want to talk and would call him when it was all over. Guess he figured he should come over if he wanted to see Bill. He stayed for about two hours and told me to call him if I wanted him to come over again. I told him I doubted I would call but he was welcome to come see his brother anytime he wanted.
I can't be too hard on him because he is the only one of Bill's siblings that has kept in contact.

I'm sitting next to Bill's bed. He's awake but is looking around and reaching for things in the air. I got him to eat a little and drink a few swallows.

I am so easily distracted that I stopped typing and put my computer aside to do something for Bill and forgot to submit what I wrote.

Guess I'll go to bed. Not sure if I will sleep because Bill is so restless. I should probably give him an ativan but he had one at six and usually that does the trick for the night.

The nurse and the aide will both be here tomorrow so I'll see what the nurse has to say. Who knows, tomorow he may be calm. Have my doubts, but I can hope.

any change this morning Joyce? You are weighing heavy on my heart right now. Please let us know what the nurse says.

The aide was here at 6:30. Bill was still asleep but woke up and she gave him a sponge bath and got the bedding changed. he seemed pretty alert at first but by the time she finished he was getting pretty restless. I gave him his morning meds along with an ativan. Now at 8:10 he is squirming around in the bed, legs moving, twisting the blanket into knots, moving it back and forth across him. I did get him to eat two scrambled eggs and I think he may go back to sleep.

The nurse will be here later this morning. He had me on alert yesterday. Every breath he took was a rattle and a couple of congested coughs. That all went away after awhile.
It was the rattle that got me. I can still remember that sound when my mother died.

Don't know if I mentioned previously, but his older brother came over and stayed for a couple of hours. He had called earlier and I wasn't doing too well and finally I raised my voice over his on the phone and told him that I didn't want to talk and I would call him when it was all over. I love his brother but he is one of those people who never wants to hear what you have to say only interested in telling you what he wants.

he told me to call if I wanted him to come back. I told him I probably wouldn't call but he was welcome to come back and see his brother any time he wanted.

I'll let you know what the nurse has to say after she leaves.

Thanks for caring Lori.

Dear Joyce,

the dark urine sounds like a UTI. If Bill doesn't have a BM shortly, you may have to resort to having the visiting nurse give him a suppository.

One of my clients is in the last stages and when he gets that restless, it's usually a sign that he needs something to help him poo.

Bill seems so much better today. I got him out of bed for the first time since last Sat. He sat at the table and ate a bowl of cereal and drank a cup of coffee. Right now he is laying back in his wheelchair right next to me sleeping.

I didn't give him his regular ativan last night, only 100mg of seroquel. He did wake up and stir a couple of times last night but went right back to sleep. He didn't wake up until 8:30 this morning.
I sat and listened to him breathing over the monitor and he sounded like he was really resting, no restlessness..
He was very cooperative while I was changing him and cleaning him up. He had a full diaper so the bowels are moving again.

We'll see how the day goes with him taking the 100 mg of seroquel 3xs a day. That's an increase of a 100 mg a day. He will probably sleep most of the day since they make him sleepy. The nurse said his body will adjust to the increase and he shouldn't sleep all the time. Just to see him resting and not moving around all the time is enough for me right now.

Thanks for all you prayers, I'm sure they are the reason he is doing so much better.

I'm glad to hear that Bill is doing better. The worst part about watching that agitation is that you feel like their minds are torturing them. To see them sleep peacefully is such a blessing.

Friends,
Don't want you all to think I've forgotten about you. Have not been on for a few days, not feeling real well. Can barely swallow or eat, and in pain in my throat. Be back in a few days. Thinking of you all and will catch up in a few days.

love to you all,
Jackie