CALS Roll Call Continued

[MVFinVA]

Tillie - I tried "white noise" that sounded like falling rain on his iPad a while back and he told me to turn it off. Hospice told me to stick with the ambien and ativan, ambien an hour before bed and the ativan right before. It seemed to work last night so we'll see.

Ernie - I cut back on the Christmas decorations too. Have the tree, but bought an artificial, pre-lite one. It was pricey but looks real. It's smaller than usual because the ceiling are lower where it has to be so Dave can join for Christmas morning. We probably have enough ornaments for two trees, but I used less than we usually put up. A representation of every type we have is on it, but not all. I put the nativity we inherited from Dave's parents in his room. Couldn't bring myself to put up a lot of the knick-knacks that are the ones Dave always arranged. No candles in the windows this year. Only an artificial wreath on the door. I used to decorate a real one. Just don't have the emotional energy this year.

This morning had a caregiver so I could go the church. When I got home we worked together to get Dave a shower while on the BiPAP - a two person job. We did it earlier this week and it was fine. But when he got back to the bed he looked awful and his O2 was in the low 80's. I think that was his last shower I know they always made him feel better, so I'm disappointed for him.

I'm praying everything holds steady until after Christmas. Our 24 yo dd hasn't seen her dad since late August, 28 year old dd since October. I would so like them to be able to have this Christmas with their dad. But who knows, as we see time and again on this forum, it's impossible to predict. Things can look like they're headed down and then plateau and stay there a while.

Mary

 

[affected]

I really hope that combination does the trick for him Mary xxx

 

[wishmobbing]

Mary, showers used to be what my PALS (and me too) really enjoyed. Once he needed to use the mask also in the shower all the fun was poked out of it. It was too exhausting for him and real work for me though I just about managed it alone with a neat lift. I bought an inflateable washbasin for the bed to wash his hair. I had help doing that so his head would never be tilted down. The aide held his mask on and a washcloth over his eyes and I could really get both hands into lathering and scratching with full force. He enjoyed it and it helped him to feel fresher.

 

[MVFinVA]

Wish- Thanks for the idea about the inflatable washbasin! I have never heard of that before

Mary

 

[ThisPresentMoment]

Wow! You guys have been busy. It has taken some time for me to catch up. It's good to see so many check in.

We also recently transitioned to bed baths and use an inflatable basin for hair washing. It seems to work really well.

Dad is not on hospice yet, but he's getting used to bipap, part time right now. We also did first tube feeding at home today.

 

[Chincoteaguer]

Mary;

Sibyl has been getting hot at night and also removes her covers. I have gradually lowered the temperature on the heating system and this morning brought it down again. This has been recent - last 7 days - and I wonder if it indicates some biological change,

Cold hands actually bring smiles. Weird..

She is definetly less active and cannot read her book or watch TV without falling asleep. We retired at 6 pm last night. Got bonus sleep time but at 4:30 am I am wide awake.

 

[MVFinVA]

Well the ambien and ativan combination seems to be working. He got up twice last night to use the bedside commode, but NO CALLING OUT!! Whoo Hoo! That means he gets better sleep and the stress level for me drops down. Hope this continues through the holidays.

Mary

 

[affected]

I have everything possible crossed for you Mary!

 

[NinjaLady]

Ernie - my PALS was hot all the time the last month before he got his wings. Couldn't keep the room cool enough for him. Even if his legs and arms were cool, his trunk was warm and he was uncomfortably hot. Prior to this last month he wasn't like this...so maybe this does mean a biological change. A fan going all the time and a light sheet to no covers kept him most comfortable. It was hard to not want to cover him up but he preferred it this way since he felt so hot. Also, he slept way more than usual towards the end and wasn't hungry. Our bodies really tell us what to do/what is going on. Best of luck.

 

[MVFinVA]

Well the ambien/ativan did not work tonight. Dave was up a lot tonight, but not calling out constantly, which is an improvement I guess. Restless and sleepless, but only calling out every 20 minutes or so, not every 2. I gave him ativan again at 3:am, but didn't seem to make any difference at all.

What is much worse is I found our nighttime caregiver asleep, twice. We have had her for just under three months, four nights a week. I have really liked her and Dave has too, I think. And more importantly I really trusted her. I thought I had found her asleep once before, but wasn't sure. Tonight I was sure. I heard Dave calling repeatedly and went to check what was happening. I don't expect her to go to him every time he calls, because I know a lot of the time there is nothing to be done. BUT I do expect a judgement call to be made about going or not. The second time she was sitting up with a book, head down, snoring. I had to tap her arm to wake her up. She went to Dave to check on him and when she came back I tried to talk to her. I DID NOT want to get her fired. I DID want to work this out. And I let her know that. I can totally understand having a difficult day/night and this happening. I really wanted to work this out, but she wouldn't acknowledge falling asleep. She said she doesn't snore. She wouldn't look at me and kept her arms crossed in front of her. I asked her what we could do to stop this from happening again and she wouldn't answer. I tried to talk to her for at least 45 minutes. Finally I asked her to leave. I couldn't go back to sleep with someone I didn't trust caring for Dave. I am beyond disappointed and stressed. I've been up since 3:15am. Dave kept calling out. And now I am wondering what to tell the agency. I really don't want to throw her under the bus, but then again, what if she did this with someone else where it was dangerous. If we were a little further down the road on this journey it could have been worse for Dave.

I have to call the agency to try to get a replacement for tonight. I HATE THIS!

Mary

 

[Narrowminded]

Mary I am so very sorry you are dealing with this. It would have been so much better if she just admitted she fell asleep, it happens. However, to be defensive and not acknowledge is not acceptable. Hoping you can find a replacement quickly.

Hugs

 

[affected]

Oh Mary that is so disappointing - that she wouldn't just admit she was asleep

I can't believe that people don't realise how stressed CALS (and anyone caring for a loved with a terminal illness) truly are and why they are there to help. Night shift is hard to stay awake through when you are not busy all the time and we are all human.

I am not sure the best route to take, ask to have her and her manager come to you for a meeting to discuss, or just ask for a new person permanent. I think you definitely need a fill in person tonight to let her know this is serious and give you a little time too.

So sorry this happened, both the meds and the worker!

 

[MVFinVA]

Tillie - I ended up calling and asking for a permanent replacement and I was frank about why. I know how hard the night shift is and I was very willing to work with her and give her grace about it. I tried to be understanding, while at the same time letting her know my first priority was my PALS. She would not acknowledge what she had done at all. I was more upset about her not being honest with me than the falling asleep. I can be sympathetic about the sleep. But I can't trust her if she won't be up front. She has worked for us about three months and we had a good relationship, I thought. She just shut down when I said she had been sleeping. I so wanted her to try to work with me on this but she wouldn't give an inch! I would have rather had a solution with her than get someone new, but my trust in her was destroyed by her response I was not angry with her, just disappointed. Her reaction makes me wonder if she had done this before.

Mary

 

[affected]

Yep I am right with you there - it's the no I wasn't that is the true big issue as you can't really work with that.

Good on you for taking action and getting her replaced.

 

[affected]

Oh, how did the agency respond to the situation?