Perspective needed

[codyclan]

So I need some perspective. We have a private hire caregiver and she's pretty good and my husband likes her for the most part. However I've had some issues with her crossing some boundaries. I've talked to him about looking for someone else but he doesn't want to break in anyone new and he feels comfortable and connected to her.

So my husband has an eyegaze computer. He still can speak and I can mostly understand him. There were no cognitive issues. He has used the computer and he knows how to use it but he's not particularly interested in doing so. I ask him if he wants to use it and he usually says no. He is not experiencing frustration over communication at this time. Occasionally the girls and I have to ask himseveral times to repeat what he's said, but the vast of the majority of the time we and both of his caregivers can understand him.

However this caregiver really thinks he should be using the computer more often for practice purposes . She texted me recently and had said that she told him that if he doesn't use the computer he's going to be locked in and what's he going to do without a voice, etc. etc. etc. This frustrates me because he knows perfectly well what the course of the disease is and he knows that he may be without a voice if he doesn't become proficient on the computer. However I think that these are his choices to make. We offer and suggest but he really doesn't want to use it right now and I respect that choice and don't push very hard.

Tomorrow is my mother-in-law's funeral. My husband is not going to be able to attend so this caregiver will be with him for eight hours while the girls and I both go to the funeral. She has texted me and said that she wants me to show her how to set up the computer because she's going to "make him" use it tomorrow. I responded with he certainly has the right of refusal. She continues to push and say that she really thinks he should be using it to practice and it is very important. I've asked her if she's having trouble understanding him and she says no she can understand everything he says, as can most people who spend time with him.

I've spoken with him about this before, and he says he will let people know when he wants to use the computer. But she is indicating that she's really going to push him tomorrow, it makes me feel like she is talking about a petulant child, which is why I think it it is totally ticking me off. Do I need to change my perspective or do I need to be more firm with her?

Suggestions?? He doesn't want to find a new caregiver but I find I am having to frequently define boundaries.

Tracy

 

[soonerwife]

I would start with being more firm with her. PALS would let you know if she were bothering him too much, right?

 

[affected]

Firstly I would remind her that you are attending his mothers funeral, and she should spend the day very respectfully with him.

Then I would suggest that the 3 of you have a conversation during this week. Get her to say all this out in the open to the 2 of you together and you both respond. Make it clear you appreciate her point of view, but then state how you both feel and make it clear that it is his decision and you are backing him up. I think he may need to stand up for himself a bit as she is often left alone with him. She needs to know however that you support his decision.

I so wish my Chris had been able to learn to use technology to talk. He had FTD and just could not sit and concentrate on learning to use it. So he procrastinated constantly, saying he would do it when he needed, but of course if it is left until that point it's very hard to learn then. And his FTD progressed too so it became impossible for him to spend the many hours needed to learn to use well. The technology is very slow to use with the eyes and takes a lot of energy to learn. So she is right from the view that the longer he waits to learn it, the harder it's going to be to learn. However if he chooses not to learn, he is not a child, he is an adult who has the right to that decision.

We used communication charts, so his needs were met. You cannot hold conversations as such with charts as they are also slow and take a lot of energy.

 

[codyclan]

Tillie,
I think that's what's so frustrating to me--she's right it takes practice to become proficient, but forcing the issue and nagging him about treats him like a child. I have tried very hard throughout the course of this insidious disease to not treat him like a child.

And here's the thing, his breathing is very compromised and he's on the bipap almost all the time and I think he feels like his time is short and he doesn't see the need to spend his energy becoming better at eyegaze. I don't know if he's right--he may have more time than he thinks, but again, they're his decisions, not hers.

You're right, Tillie and sooner, we need to meet with her, but ya know, of all the crap we have to put up with over this disease why do I have to justify decisions and choices and spend time explaining all of that to someone else?

Thanks for listening and empathizing.

Tracy

 

[lgelb]

Agree his/your boundaries should be respected, but it may not be worth the time to try to change her behavior if he likes her (all that really matters). Just continue to remind him that he can push back to her at any time, and remind her it's his choice and very unlikely he will be completely locked in.

The time he feels he has is in part a self-fulfilling prophecy, and you're right, Tracy -- he's not a child and that's not how either of you wants things to end up. He and you want him to remain an equal in your long partnership every day. That might be the one thing to say to the caregiver.

Best,
Laurie

 

[swalker]

I agree that her behavior crosses an important boundary.

If you PALS wants to keep her, then you need to address the boundary transgression directly with her.

You have apparently approached her about this and she wants to continue the discussion and take unilateral action to get her way (which she undoubtedly believes is the right way).

Here is an approach to consider, which is based on my extensive experience as an executive handling delicate situations with very good, but very strong-minded folks.

In such situations, I have found that it is useful to end the discussion. Cut her off. State to her that it is your PALS decision and that the decision has been made.

If you do that, her likely response will be to try to talk you out of your position. Before she gets a chance to start in on this, remind her that the decision has been made and that nothing she can do will reverse it. If she persists reinforce that she must respect your authority by reminding her that not accepting and honoring this decision is grounds for dismissal. She does not need to agree with your decision, she just needs to honor it.


Steve

 

[Narrowminded]

I totally agree that the decision is your husbands and his alone. I also agree with Steve. The only problem I see with that solution is that you definitely need to be ready to dismiss her if she refuses, as it will have been stated, and she can also choose to leave of her own accord after a "laying down of the law" so to speak.

Another possible solution maybe to have the group discussion and suggest to your husband before the group meeting, of daily practice session of say 15 min. In all honesty, as my husband prefers to use the switch to the eyegaze module, 15 min is about max when first learning the machine. So something along the lines of DH has chosen not to learn this now, but has agreed to (1) 15 min session everyday to be done right after lunch. If you can agree to limit his practice to this then I think all will work out well. However, the funeral of his mother is tomorrow and as he will be grieving, we will leave these practice session, and let them begin 1 week from today.

That way, yes he gets in a short practice time since he likes the caregiver. You have let him make the decision (assuming he agrees with you) and she will need to respect the time limits.

Hugs,

Sue

 

[affected]

I like what Steve said which was basically what I was thinking of by having a meeting with the 3 of you (by which I mean sit down for a few minutes, not a long formal thing!) and be able to both reinforce to her what your husbands decision in and close the topic that way.

I'll be so waiting to hear how you go as we are all throwing in suggestions but you of course decide what will work best for you at the end of the day.

 

[Lixen]

So I need some perspective. We have a private hire caregiver and she's pretty good and my husband likes her for the most part. However I've had some issues with her crossing some boundaries. I've talked to him about looking for someone else but he doesn't want to break in anyone new and he feels comfortable and connected to her.

So my husband has an eyegaze computer. He still can speak and I can mostly understand him. There were no cognitive issues. He has used the computer and he knows how to use it but he's not particularly interested in doing so. I ask him if he wants to use it and he usually says no. He is not experiencing frustration over communication at this time. Occasionally the girls and I have to ask himseveral times to repeat what he's said, but the vast of the majority of the time we and both of his caregivers can understand him.

However this caregiver really thinks he should be using the computer more often for practice purposes . She texted me recently and had said that she told him that if he doesn't use the computer he's going to be locked in and what's he going to do without a voice, etc. etc. etc. This frustrates me because he knows perfectly well what the course of the disease is and he knows that he may be without a voice if he doesn't become proficient on the computer. However I think that these are his choices to make. We offer and suggest but he really doesn't want to use it right now and I respect that choice and don't push very hard.

Do I need to change my perspective or do I need to be more firm with her?

Suggestions?? He doesn't want to find a new caregiver but I find I am having to frequently define boundaries.

Tracy

The good news is; the caregiver seems to have his best interest at heart and genuinely wants to help him. As you've indicated, he doesn't have any problems commu‎nicating effectively and there's no cognitive impairment, so if I'm understanding correctly he's perfectly capable of setting & defining the boundaries he's comfortable with.

He also appears to like her and they've developed a bond (super important) so while boundaries are essential, sometimes we need to examine which ones need to be defined and reinforced and which ones might represent a power struggle disguised as a need for boundaries.

As his wife it's normal for you to want to protect your husband, but the fine line for a CALS is to balance protection while allowing PALS the freedom to control their environment for as long as they're mentally & physically able. If you think the caregiver will 'force' him to do something he's not comfortable with, then yes, you should clearly have a meeting with her (and him) to carve out some rules, but it sounds like you may have more of an issue with her pushing him than HE does.

I think before I'd embark on a journey which might create unnecessary tension with an otherwise caring caregiver, I would talk to him FIRST and find out exactly how he feels about the situation and if he wants your help in managing it. I tend to think based on what you've written, that, if he doesn't want to participate he will tell her as much in very short order. I highly doubt she's going to physically force him to do something he doesn't want to do, primarily because she doesn't have the power or the capability. The irony here is both you and the caregiver share the same concerns and frustrations over him not participating in becoming proficient on the computer. If she can somehow get him involved in the process while still allowing him freedom of choice, so be it. It's not a reflection of your inadequacies as a CALS and it doesn't mean she's literally done so via force.

The bottom line here is to protect your husband's dignity and assert your claws when there's a threat or a need present, but practice what we as CALS know all to well; let him control his environment for as much as he's comfortable with. Simply put: ask HIM what he wants you to do before calling a staff meeting and upsetting the apple cart filled with good intentions.