“About my day” forms for mil with dementia

[saraha]

So the full time caregiver thing is a no go for mil. As it stands, nephew comes for 8 or so hours Monday and Friday. Lady A comes Tuesday 9:30-1:30, Lady B comes Wednesdays 9:30-1:30, Home Health nurse/church lady Thursday 10:00-12:00.
 I see hhn Saturday mornings and can get a run down if I ask, but previously sil had said to only communicate with her. Turns out at family meeting Sil admitted to not having even been to their house in weeks, or checking in with caregivers, just fil. Lady A is a friend of mine and will also update me if I ask but had previously been told to only report to sil. So everyone has been relying on fil to do any mentioning of issues etc and the caregivers had not been given each other’s numbers. So in essence the right hand has not been knowing what the left hand was doing, and the hhn expressed frustration at lack of communication.

Fil can no longer be trusted to relay accurate info. Dd21 called him Sunday and asked him about his weekend. They had been taken to a wedding the day before, but according to dd when she asked about it, he couldn’t remember who got married, where the wedding was or what they ate.

Talking to Lady A today, she expressed frustration as well that no one had told her mil was back to having accidents and needed to probably be back on depends and took he left to run errands and she wet her pants in Lady As car. When I stopped over to talk to nephew today, he didn’t know is she wears depends or not and has nothing to do with her toileting. He said he hadn’t really even thought about it, hw just assumed she was still just taking herself.

Long story long, I came up with an idea to start a sort of “my day” sheet like day cares use (or did 20 years ago when I worked in one) so that all the caregivers and kids can see what her routine etc has been like and any notes.  I’m trying to see what kind of info would be helpful to have, like for example 

Today mil ate _______
She went to the bathroom_____ times by herself/ needed help circle one

Mil slept _____ long at ______time

Notes about what she did today:  with space to write in did she help bake a cake, wash dishes, try to escape, hide her pills, whatever.

 

Is there anything else you can think of?

 

Lady A and nephew as well as dh are already on board. Hhn will also be Im pretty sure. Not sure about the Wednesday lady as it was supposed to change over to bil’s wife but for some reason never did. I don’t know her. But even if she doesn’t, that will be documentation of at least 4 days we don’t know anything about. I’m sure fil will not fill it out, but al least more info will be available for caregivers and doctors.

[Annie G]

When mil was battling dementia our big communication issue was about what kind of anxiety issues she had that day, along with whether she’d wandered during the night.  For instance, SIL would spend the day w her and mil was fixated that there were ‘bad guys’ outside. So tell us that so we don’t put on an old western, which she normally enjoyed but definitely didn’t if she had anxiety about bad guys!  Her anxieties changed from day to day and it was essential to document such things.  SIL refused but it would have been really helpful. FIL did of he had a chance, but often he just didn’t have a minute to do it. 
Your list seems SUPER helpful so you can notice declines over time. When you’re in the thick of it sometimes you just don’t realize the decline is happening.

Hugs. It’s so hard.

[prairiewindmomma]

1.  I am not surprised SIL has not stopped in in weeks. I am sorry your extended family dynamic is so dysfunctional.

2. I would include a checklist of whatever needs to happen on that day, that can be notated with the time it happened—when medication was given, when toileting or diapers happened (including if there was a BM), and so on. Constipation may become more of an issue and someone needs to be checking that she is stooling regularly. If daily showering is no longer happening, then also having a schedule for that, making sure panties are changed, etc.

3. Caregivers can also track visitors. It makes a nice conversation, “Oh, neighbor Jane stopped by, how lovely” but it also gives more info, iykwim.

4. Track mental state. Yes on anxiety triggers, but you might also find she has a “good” time of day and that sundowners hits around 3 pm, iykwim. If there is a pattern you know to avoid stress triggers then.

 

[TechWife]

We had a spiral notebook that was left at the house for caregivers to make notes in for my parents.  I like the idea of having a info/check sheet.  But, because this will only work to the extent that it is used,  consider that the easier it is to manage the more likely it is to be used. 

With the family dynamic, unless Lady A tells someone who’s in the group, then I think your hands are tied. 

A simple format will be better than complicated. A spiral notebook would work well for notes. Make sure everyone signs their notes. Ask for a note for exceptions regarding mealtimes, toileting, sleep patterns and a one or two sentence summary. They can write questions they have here too & anyone can write the answers. If there aren’t any exceptions, have them note that it was a typical day so that people know communication was attended to.

 

[lmrich]

Does she take medications or supplements? If so, add those  to the list. I would even state when the pills are supposed to be taken. 

Maybe add a mood tracker? 

I think your idea is fantastic  - keep it simple, and it will get done. 

[saraha]

18 minutes ago, lmrich said:

Does she take medications or supplements? If so, add those  to the list. I would even state when the pills are supposed to be taken. 

Maybe add a mood tracker? 

I think your idea is fantastic  - keep it simple, and it will get done. 

She does, and it is a sore point because fil is only one in charge of daily medicine and doesn’t want to change that. She will absolutely try to not take them, hide them etc, but he always has her up and dressed, breakfasted and pills administered before help comes for the morning.

[TechWife]

I googled adult caregiver notes and a lot of different forms and a lot of images. Instead of re-inventing the wheel, take a look on the internet.

This Pinterest board looks helpful:

https://www.pinterest.com/lindadelazerda/caregiver-notes/

 

[saraha]

14 hours ago, TechWife said:

I googled adult caregiver notes and a lot of different forms and a lot of images. Instead of re-inventing the wheel, take a look on the internet.

This Pinterest board looks helpful:

https://www.pinterest.com/lindadelazerda/caregiver-notes/

 

Thanks, I found one almost perfect! Saved me a lot of time and frustration. I texted bil and sil with my idea last night and they said it sounded good. Dh pointed out that I will probably be in charge of this until sil decides she wants to take it over and I said I wouldn’t have suggested it unless I was willing to take it on. I went over and talked Lady A through my expectations and to explain to fil what we were doing but he saw me pull out the clipboard and as soon as I started talking he took mil and left the room. I know for a fact he won’t fill it out, but at least he didn’t fuss about it. We’ll see. I was afraid he would see it as an invasion and had deflections at the ready but he did t even want to engage.

Ill take that. I’ll go every day this week and meet the caregiver and walk through what to fill out, since some of it does t apply and I don’t want them to get into a battle about medication with fil. Here’s hoping this helps 🤞

[Hannah]

Does fil dispense reliably?

Our pharmacy offers a packaging service to the nearby retirement home for all  medication per patient. It is blister packed like this by day and time that the medication needs to be taken, so very easy for the carer to dispense or track. (Ours has the option to write in a date too).

Somehow the fact that it comes from the pharmacy makes it more acceptable to the elderly than a container someone has counted out on their behalf.

Edited November 15, 2022 by Hannah

[BusyMom5]

This is a great way to get everyone on the same page.  My DD is currently caring for an elderly lady and they do have a notebook that everyone writes in, as she has different caregivers for different days.  My husband's family also had one when his grandpa had caregivers.  They include who came to visit and even a grocery list to the side, of what someone used up or what is running low- foods, cleaners, depends, etc.  

[Starr]

Are you gathering info for the next family only meeting? Are you going to be expected to go over and solve the problems regularly? I just worry you are getting yourself back in the middle of what you were trying to get out of. Wishing you the best in such a difficult situation.

[saraha]

8 minutes ago, Starr said:

Are you gathering info for the next family only meeting? Are you going to be expected to go over and solve the problems regularly? I just worry you are getting yourself back in the middle of what you were trying to get out of. Wishing you the best in such a difficult situation.

Probably. I just wasn’t sure what else to do when two different caregivers expressed concern. I told dh that the sheets are more for the caregivers to communicate to each other and I would collect them on fridays and file away. I didn’t want the caregivers to quit because we haven’t been able to find any others since the family only wants to use people they know.  I guess I’ll just keep an eye on the sheets and notify dh of any immediate problems and let him figure it out. He is so torn about everything.

Fil gives her her pills everyday. Some of them are dispensed by this machine called Hero that is programmed by bil, but I’ve also heard that not all of the medicine is in it so fil is dispensing some too. 🤦‍♀️Bil is supposed to be in charge of overseeing that. So I don’t ask. Of course the medicine is the most important but fil is resentful of accusations that he can’t handle it, even if it’s true and I just don’t think about it.

[mlktwins]

My dad has 6 caregivers working 12 hour shifts.  We just use composition notebooks and each caregiver writes what time he got up, went to bed, what he ate, whether he showered or not, any issues, etc. We have a separate notebook that they keep his vitals in so we can look at it quickly if needed (i.e. the info isn’t buried in all the other notes).

When they get on shift, they will go back and read the notes since their last shift.  
 

ETA: I would not do individual sheets of paper.  I would also not use a spiral notebook.  It is much harder to tear pages out of a composition notebook.

 

 

Edited November 15, 2022 by mlktwins

[mlktwins]

Just to add, I also leave the caregivers notes in the notebook.  And we have a highlighter we use for especially important things.  It has worked very well for over a year now.  You don’t want a bunch of loose papers to deal with.

[Innisfree]

My parents’ caregivers used a series of spiral notebooks. We didn’t tell them what they needed to record, they just noted anything of importance: medication, behavior, doctors’ visits, whatever seemed significant to them. We didn’t have as many people working as the OP does, and the ones we did have knew each other well, so I’m sure that influenced how they handled it. Establishing the expectation that caregivers read the notes since they were there last each time they arrive, and write their own notes each day, is a good idea. Someone in the family may need to keep track of the notes too, just to stay aware of what’s happening.

[saraha]

So Lady A called me as she was leaving saying that she got distracted when sil came over (who hadn’t been there in several weeks) and didn’t fill out the paper but wanted to give me a run down of the day. I asked her what she and sil did while she was there and she said just went through papers and cleaned off the dining room table. 😆🤦‍♀️