Caretakers updates

tristessa

So my mom has Alzheimer’s and is in MC. My dad is on the same campus but in the personal care unit due to several health issues and basically not being able to care for himself (bills, groceries, etc) without my mom at home with him.

I have a caretaker that visits my mom 3x a week (I’m an only child with three littles myself so I’m taking all the help I can get). The caretaker has been good, they usually go out to lunch and she takes my mom up to visit with my dad.

Recently I’m getting somewhat negative updates from the caretaker. Nothing huge-things like “your parents keep asking to go home” or “your mom refused to talk to the caretaker today” and things like that.

Is it unreasonable for me to ask for them to not give me these negative bits of information? I just placed them 6 months ago and I’m still trying to get a hold of all of this emotionally. And every time I get one of these updates it ends up sending me into a bit of a tailspin and my mood is ruined for the day. I could see if the updates were medically useful or out of the ordinary, but run of the mill bad just feels unnecessary for me to hear 3x a week.

Am I asking too much? Being too dramatic? Figured I’d bounce this off of you all before I did anything

May flowers

I’m sorry you are dealing with this. Is the caretaker close to them? I wonder if she’s struggling with what they are saying and looking to you to commiserate. Otherwise, if it’s just her sharing details of the visit, I think I’d just ask her to share the positive notes or something actionable. Maybe just tell her what you wrote here, that it is painful to hear since there’s nothing that you can do about it.

Nerdyblond

Hi Tristessa,

It sounds like your caregiver has got some personal issues and is finding it to be exhausting to care for your parents. Maybe she is overloaded, maybe she is losing time with a loved one herself. Maybe she is having a hard time watching your parents go downhill. I would ask her if she is okay and needs a break or something. People don't talk negative unless they are hurting somewhere.

mommyandme (m&m)

Besides all the other good advice like making sure the caregiver is ok, I might say, “those type of behaviors are very normal for dementia patients” etc… and “ unless there’s a health concern,  you don’t need to share all those sad and negative things with me, it’s hard for me” etc… Maybe you could supply a log for her to write her observations down so you can learn what she’s sees when you are emotionally ready to “hear” it.  And, she can still share with you what she feels is important for you to know.  

I wonder if the caregiver is knowledgeable about these things and/or might need to do some more research or be given good references to read up on.  If she’s new to this kind of care it’ll be great for her own resume to become an expert.  

I’m sorry this is hard… unreasonably hard for all of us.  

Quilting brings calm

I think she’s just taking her duties seriously.  She most likely thinks you want her to tell you her observations of your parents behavior and attitudes- She is being your eyes and ears. Maybe she thinks you might want to discuss a medication change with the doctor to relieve what appears to be anxiety in your moms part.  I would just accept that this is the reality of your parents’ situation.  They aren’t happy and won’t ever be.  You could tell her not to tell you these things - but then she might not tell you ‘important’ things or she might decide not to continue her duties.

harshedbuzz

tristessa wrote:

You certainly have your plate full with 2 parents with significant health issues and 3 young children at home competing for your attention. That's a lot of moving parts. 

Is it unreasonable for me to ask for them to not give me these negative bits of information?

Most people who hire a private duty aide as you have do so with the expectation that the aide will be your eyes and ears when you can't be there as QBC suggested. If your expectations are different, then you could ask her to only report things you deem critical but in doing so you would be relying on her judgement. IMO, knowledge is power.

I just placed them 6 months ago and I’m still trying to get a hold of all of this emotionally.

Six months in, many PWD would have settled in. Most families have also settled into the situation by the 6-month mark as well. It's not that you get to a place where you are happy about the disease and need for placement, but more resigned to it and coping. In the context of where you are in your life, maybe you would benefit from an IRL support group or a professional to talk to. Many primary caregivers do find a low dose of a medication for depression/anxiety helps them stay on a more even keel. 

And every time I get one of these updates it ends up sending me into a bit of a tailspin and my mood is ruined for the day. I could see if the updates were medically useful or out of the ordinary, but run of the mill bad just feels unnecessary for me to hear 3x a week.

It's a lousy situation. You can throw money at hands-on caregiving by bringing in an aide and placement, you can even hire a geriatric care manager to be your liaison between the you and the facility. But you cannot delegate the emotional toll of the situation in which you find yourself. 

How familiar with dementia is the caregiver? Is she trained in validation techniques? Is she a very experienced dementia caregiver who is trying to inform you that something in their set-up currently isn't a good fit for them but doesn't feel empowered to say so directly? Is it a situation where one parent is more settled but the other is upsetting their spouse with talk of going home or are they triggering each other? What are the aides from the facility telling you- are they reporting the same behavior or could it be mom gets agitated seeing dad or leaving the facility? Is the aide of a different opinion than you around placement? Are they trying to get more hours in or convert this to a full-time position?

Am I asking too much?

Maybe. Maybe not. Maybe you just need the information in a different format or on a weekly basis.

Dad's MCF called every time he was suspected of having a fall. I believe they may be required to do this. At home sometimes dad would choose to sit on the floor so I suspect many of the calls were the result of them finding dad on the floor in his room and assuming it was a fall. These calls irked my mom to a degree I found borderline irrational but I suspect she felt the calls were an indication that she somehow do something to fix the situation which of course she couldn't. I tried to frame them as an FYI- they are obligated to share this but nothing is expected. 

Being too dramatic?

I don't think so. This part is hard. Perhaps a weekly call or email from the aide would be better, but I would check with the facility for their thoughts on how things are going. 

HB

LJS45

I agree that this is very typical behavior for AD. Is she mentioning these things to you because she does not know how to respond? She may not know how to deal with these comments/behaviors. Unless it is medically related or a new behavior, I would tell her to please just share the good aspects of her visit. This is not unreasonable. It can be very hard. Some caretakers just simply don't understand how to deal with AD. Sorry you are going through this with both your parents and have 3 little ones to boot.

Pat6177

In my opinion, I would want the caregiver notes to be reporting the facts, ALL the facts. Then you can determine if the facts represent a problem or not. So many times, it is changes in symptoms that is a flag that there is a problem. QBC and Harshed Buzz gave some excellent suggestions. Let me add that many PWD ask to go home, even when they are at home. So try not to let this symptom make you feel guilty. But you do need to know how much anxiety it produces so you can determine if medications need to be adjusted. Or is it going to lead to exit seeking behavior. If you ask the caregiver to selectively withhold information, then there’s a good chance you’ll be blindsided by something major.