Daughter caregiver preparation

Lilydaisy

I have looked around but not found this topic. DW has Alzheimer's, early to mid-stage now probably. I, the DH, and my daughter will be the caregivers as we try to keep her in her home as long as possible or practical, both for comfort and financial considerations. 

I would like to treat this as a part-time job for my daughter, although with lower pay because she likely won't accept anything for helping. I expect to lean on her a lot, so I want to find a balance. I doubt she fully understands how challenging it could become. So two questions.

How can I help my daughter prepare for her job? Would it be better to handle this arrangement under the table or "above"?

Thoughts about either would be very welcome.

M1

One way to help her prepare would be to encourage her to read these boards and participate in the forum, and/or watch online videos like those from Dr. Natalie (Careblazers?  Ed has a lot of references), Teepa Snow, and others. 

And:  finances definitely above the table, in my opinion.  If you need to anticipate Medicaid financing for long-term care eventually, every penny you spend can be scrutinized.  So definitely above board.

harshedbuzz

Lilydaisy-

It sounds like you need to have 2 very frank conversations around this.

The first is with your daughter. Has she actually volunteered for a hands-on caregiving gig on the regular or are you interpreting her willingness to "be supportive" as Depends duty? Does your daughter have other responsibilities that require her attention that might compete with your needs for help you could meet by hiring privately or through an agency? A husband and marriage that needs nurturing? A career? Saving for her own retirement? Children who need help with childcare?  

Many spouses of PWD are disappointed when their adult children define "support" as weekly visits, a few prepared meals and perhaps some lawn mowing. Best to know what the expectations are.

Assuming your daughter is all in and wants to be a regular hands-on caregiver for her mom, I would discuss how to make this happen with a CELA. There may be steps that could be taken to allow you to employ your daughter in this capacity legally and on the books. You'd also want to be certain your insurance will cover her if she is injured in the capacity of acting as her mom's aide. There are training courses she could take to become a HHA or CNA. 

HB

Ed1937

Natalie Edmonds runs "Careblazers", and she has a lot of videos on youtube. She is really good, but lately I've noticed she is promoting her non-free class, which can be a little expensive. But her youtube videos are definitely worth watching. Here is a link to some of her stuff. https://www.youtube.com/results?search_query=careblazers  

Teepa Snow is another one who has youtube videos, She is excellent, and she also offers both free videos on youtube, or a pay for class. You can search for her name on youtube for her videos.

You could also ask her to read a lot of posts here and on the partner or spouse forum. She can read without joining, but must join to post.

This link will take you to an excellent article explaining dementia. https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf  

Ed1937

I should have asked if you have seen a CELA (certified elder law attorney). If not, that is something you should do ASAP. You will need DPOA for medical and financial decision making. They will also explain how they can protect assets, and explain how Medicaid works in your state. This needs to be done while DW is still able to understand what she is signing. You could also ask about paying your daughter for caregiving. I'm pretty confident saying the pay should be above the table. This could be paid for out of your wife's assets, and should be because of the "Look back" period for Medicaid.

Lilydaisy

Thanks. I have not spoken with a CELA. Good suggestion. We have POAs. And I will look into these other ideas too.

Lilydaisy

Thanks for your thoughts. These boards are a natural place to start, if she hasn't already been on them. Staying above board is usually the best way, though I don't see Medicaid entering the picture. I'll check the others out too.

Lilydaisy

Daughter is fully on board though we haven't talked about how much time may be needed (though I am retired and have time). I guess I should. And the CELA seems like good advice. Thanks.

Lilydaisy

Good suggestions to check. Thanks.