by Hope
Anyone who’s been reading my posts for the past couple of months knows that my grandmother’s health has been going down hill. And it has happened quite unexpectedly and with no warning.
Watching My Grandmother Fade
She was diagnosed with cancer last fall and up until her surgery the second week of January was extremely independent and active. She volunteered at the hospital, “work” as she calls it, three days a week, drove herself on errands regularly and for the most part functioned or could function completely independently.
After surgery, she was confused, slept all the time and so on. Just a completely different person. We are now 5 weeks out of surgery and while she has improved some, she cannot be left alone anymore. I won’t get into details, but a full time caretaker is now needed for the most basic of things…
It’s shocked and rocked us all as we were not expecting this at all. Even the doctors are all confused. They’ve run multiple tests and can find no explanation for the sudden deterioration and change in her personality/mental state.
24 Hour Care Taking Team
Needless to say, I have been asked and joined to be a part of the round the clock care taking team made up of family. It is made up of her two sons, my uncles and me. I have been covering week days from 8am-5pm (or whenever I have to pick up Princess,) they have been covering nights and weekends.
When they first asked me, they offered payment since “it is not my responsibility” (their words, not mine.) I said I was open to payment, but deferred to their decision on amount, etc. That was 3 weeks ago.
I feed her breakfast and lunch, bathe her, change her and just generally hover around her when she moves around. And it works. I can do this.
Working and Care taking is Exhausting
I am grateful that my work allows me the flexibility to work from anywhere and most anytime I want. But I have to admit that trying to get projects complete and hours in, couple with the unpredictability and stress of care taking has left me exhausted at the end of every day.
She fell off the toilet one day under my watch, and I about broke down. The stress of worrying about her when she’s not in my line of sight, it’s a lot.
The other side is that I have absolutely no opportunity to go out for breakfast or lunch to my favorite coffee shop. And I’ve been adding a few things for meals for me to her grocery shopping, which I do outside of my time with her. (Not much, but I’ve picked up a box of cereal and some sandwich meat on her dime with my uncles knowledge.)
But my question is…what do you think about “working for family” as far as payment goes? I have not brought it up again since they first asked me. And I’m not really comfortable doing that. Would you? What should I expect? Or should I just let it go?
Hope is a creative, solutions-focused business manager helping clients grow their business and work more efficiently by leveraging expertise in project management, digital marketing, & tech solutions. She’s recently become an empty nester as her 5 foster/adoptive kids have spread their wings. She lives with her 5 dogs in a small town in NE Georgia and prefers the mountains to the beaches any day. She struggles with the travel bug and is doing her best to help each of her kids as their finish schooling and become independent (but it’s hard!) She has run her own consulting company for almost twenty years! Hope began sharing her journey with the BAD community in the Spring of 2015 and feels like she has finally in a place to really focus on making wise financial decisions.
I think it is fine to be paid to take care of family if that is your primary focus while you are there – like you are treating it as a “job” to be paid for. But to take money while trying to care for an obviously very ill woman while trying to still do your other work is just wrong and selfish imo. Sorry. One or the other.
I am so sorry to hear about the changes in your grandmother. I know it’s hard. After my grandfather passed, my mother and her 2 sisters took on taking care of my grandmother. At first it was fine but then she quickly started to fade away to the point where she could no longer speak, walk unassisted, use the bathroom or bathe herself, or even feed herself. My mother got paid by the state for being her caregiver. See if yours does that. I think she had to take some sort of course to get licensed but it was minimal. But it stopped them from having to put her in a nursing home. I don’t think I could take money from family for watching someone so dear to me. I would rather pay it forward for the times she helped you out, took care of you and/or your siblings, watched your kids, etc. I would say enjoy the time you have with her and make continue to make memories that you will cherish after she’s gone.
I think a lot depends on how this affects your work schedule and productivity. If you cannot work due to the caregiving, then I think SOME compensation is not unreasonable. Of course it also depends where the money comes from. I think medicare/insurance may be able to help pay for in home care. You or your uncle’s should check into her benefits to see if that is the case.
Hope, I am so sorry to hear that your grandmother’s health has gone downhill.
I see my elderly great aunt once a week, sometimes we go out, other times we do not. I am not paid, my aunt who runs her affairs will write me a cheque a couple times a year as a thank you. I don’t think it is wrong to accept payment – hopefully they agree to something. But I understand if you do not want to bring it up, I totally get that too.
So, impairment and cognitive decline of someone in her upper 80s after major surgery isn’t rare or unheard–she was under anesthesia for a long time, there’s delirium, she’s elderly and her circulation isn’t the best and it’s possible parts of her brain were deprived of oxygen. I’m sorry. It’s really hard to watch someone go through that.
And since they removed part of her jaw and tongue, she’ll have issues with communication, eating, swallowing, as well as loss of strength and balance from surgery.
But what this means is that her functional level is about toddler level. And you have to be prepared to watch her like she’s a toddler, which would mean working and caretaking are not compatible. So I’d hammer out some sort of agreement and also work on getting everyone on the same page as to what needs to be done, for how long, and what the steps of the rest of her life look like.
It’s common enough that there is a name for it. It is called postoperative cognitive dysfunction. It can persist for up to a year.
They would be unlikely to bring it up again if this was like my family. But you should sit down and consider what you can afford and for how long. You are saving everyone money and providing care which is a real service. And there is no timeline right now either right? You can get through anything for a few weeks but what about another 6 months? Maybe the thing you should consider is how long you can continue at the pace you are currently going. Burn out is real. Could you give your time at this level with no other plan to change and no plan that gives you fewer responsibilities?
I took care of my mom and sister in law and never thought about being paid. The only thing they did was pay for their own meds, I wouldn’t unless you had to give up working to care for her.
I really like Megan’s perspective here. It would be good for you to think through what you can contribute while keeping up with your work and other obligations. You can also consider if you’d be able to (or want to) do more if you had some payment to offset lost income. With a couple possible scenarios in mind, you can have another conversation with your relatives about how to proceed in a way that will work out best (or at least as best as can be in this situation) for everyone.
I’m sorry about your grandmother.
I agree with some other posters. If you are care giving, your job while you are there is caregiving. It is not doing your other job. Your grandmother cannot so basics tasks for herself, and is at the point where she cannot be trusted to be alone. That means her needs are so great that it is plain wrong to have that level of distraction when you are with her. It is unfair to her, and potentially dangerous.
You need to pick. I encourage you to have her sons look at skilled nursing. Insurance and Medicare should cover it at least partially.
First, I’m really sorry. This is very difficult!
Second, I would aim for a compromise: not that you personally be paid, but that your grandmother’s funds be used to hire a caregiver who can be there while you are, at least for part of the day. That way you can be around to help with meals, for emergencies, to keep an eye on things, but can also do your own work while the caregiver is really paying close attention. I think it’s important not to drop your business at this point — even if you were paid for your time, it’s hard to just drop a freelance business for a possible extended period of time and then build it back up again. (This assumes that we’re mostly talking about long term clients and not one-off gigs you’re finding on upwork or whatever, in which case it might be a different story.)
I’m so sorry, Hope. My family has had experience with the state paying for care too. I hope you find a solution that helps.
I’m sorry to hear about your grandmother.
I think it is just fine to accept payment to act as caregiver. SSI does allow for caregiver benefits, but I have not idea who qualifies or filed for it. That would be a discussion with your extended family. The government provides this because it is much cheaper than paying for a nursing facility.
In this day and age, where often all the adults in a family are working to support the household (vs single income), many people need income supplementation if they are going to care for their family at home. This task falls disproportionately to the women of the family, women who often already make less, live longer, and are at higher risk of poverty in retirement than men. Furthermore, we women are expect to do these labors out of the goodness of our hearts in spite of whatever financial strain it may create. Hiring someone for help is a good idea, or decreasing your own workload, if you want to, and using the money to replace your income
If I need care and that is provided by family, I have every intention of using my retirement savings to pay them. It benefits me to have family care for me, more enables them to do so, and hopefully eliminates possible resentment or idea that I’m a burden.
That being said, I don’t think a caregiver should be paid if they essentially warehouse someone in a back room and ignoring them while drawing the pay, which sadly happens. I think that’s borderline fraud.
Best of luck.