Frustration

[ptheland]

I think I’ve mentioned that I have help with taking care of my son for about 4 hours every afternoon. I’m beginning to think that everyone who does this work is a nitwit. We’ve had a string of different people through over the last few months. With rare exception, I’m not sure how some of these people manage their own daily lives, let alone take care of someone else.

I’ve long ago given up on seeing things put away where they came from. Milk in the fridge goes from the door to different shelves and back again with no rhyme or reason. A reasonably organized silverware drawer ends up with forks and spoons and knives all jumbled together. No matter how many times I tell people to put dirty dishes in the dishwasher, I come home to dishes drying on the counter. There have been colored clothes ruined with bleach. Cooking some pasta for my son’s lunch that’s enough to feed 4, then throwing away the excess. It just goes on and on. It’s driving me crazy.

And let’s not get into the more complicated stuff, like using the hoyer lift to transfer my son from his chair to the bed and back again. I no longer allow them to do that. Any of them. They claim to have experience with using the lift, but they act like they’ve never seen one before.

The idea was for this help to make my life easier. But they’re adding to my stress, not relieving it.

Heaven help those who aren’t there to check in daily on how their parents are being cared for.

–Peter

[YewGuise]

It’s too bad they can’t use the lift. Other than that: if they keep your son safe, fed, and clean, be happy with that.

For everything else (laundry, dishes, putting things away), adjust your expectations, and plan to re-do everything yourself after you get home. That way, anything that’s been done right will be a pleasant surprise.

I used to take a dim view of stubborn old people who repeatedly fired caregivers their adult children had hired, but after managing in-home help for my dad for several years, I don’t blame them.

The bottom line is that the pay for this type of work doesn’t attract the most competent people.

[alstroemeria]

Try to find a private-hire aide.

As soon as my mom moved in with us, I realized I needed more help with her than Medicare would provide (the twice a week aide for 45 minutes for bathing/dressing/massage with body lotion showed up once every other week). The first professional to visit, after the intake nurse, was her occupational therapist. So I asked him if he could recommend a private-pay caregiver, and he did. The rest is history! She was wonderful with my mother, is wonderful with my brother, and likewise with my husband–and me when I broke my leg. She helps me occasionally in other ways (carried down my christmas decorations from the attic, installed my new license plate, assembles things, she’s very handy with tools).

She’s smart enough to do other things for a living but this is a calling for her. She had to drop out of HS (pregnant) and I presume has a GED. She’s smart, though. I trust her as much as I trust myself with my husband, brother, mother. She has common sense as well as skills.

May you find your own Rhonda!

[ptheland]

if they keep your son safe, fed, and clean, be happy with that. For everything else (laundry, dishes, putting things away), adjust your expectations, and plan to re-do everything yourself after you get home.

I suppose that is part of the frustration. My son isn’t a dementia patient. He doesn’t really need much help to stay safe. We (now I) leave him home alone for a couple of hours pretty regularly. He’s perfectly fine, if a bit bored.

Fed - If I took the time, I could prepare and leave foods available for him. He can open the fridge and get small things out. (Can’t get too heavy, of course.) Warming food is an issue, but there’s nothing wrong with cold lunches and snacks.

Clean - well, that’s not happening now because I don’t trust any of them to get him out of the chair with the lift.

So if I have to re-do everything else, I’m paying them for keeping him company. That’s nothing to sneeze at, of course. But they all seem to want to do more than just sit and talk. Which is good. I’m glad they have that work ethic. But there’s no one to properly supervise that work ethic while I’m at work.

I want to be clear. These aren’t bad people. They’ve all been kind and caring, and they all want to work. But their work is simply not up to par without constant supervision.

I feel like I’m wasting money, and that bugs the heck out of me.

–Peter

[YewGuise]

Clean - well, that’s not happening now because I don’t trust any of them to get him out of the chair with the lift.

Yeah, I think it would be best if you could find someone who can use the lift. It appears that the current aides, and the agency that sends them, claim they can, but apparently they have no (or very little) actual experience with it? The only options I can think of are:

• Work with one of the better aides to train her on how to use the lift,
• Make clear to the agency that you want very experienced aides,
• Interview other agencies,
• Try care.com or other sources of independent aides, select based on your requirements, and interview them and check references,
• Check with local nursing schools (if there are any) to see if any students are available for part-time work,
• Check with your local Area on Aging (they should have a lot of info online) even though your son isn’t elderly,
• Maybe www.caregiveraction.org can provide some info.

…there’s no one to properly supervise … while I’m at work…

Of course the whole point of hiring caregivers is so you can leave the house, but at the beginning, with new aides, maybe they can work extra hours to overlap your at-home time so you can get to know them, and walk them through things?

I’ve found that I pretty much take for granted the things aides do right, and whatever they do wrong jumps out at me. And generally, the things they fuss over are things I don’t care about, so I have to decide to what extent to just let them do their (unappreciated) thing and when to criticize.
One aide busied herself dusting, when I would’ve preferred she clean the bathroom.
One ironed shirts, when I would’ve preferred she clean the bathroom. Not to mention, the shirts wouldn’t have need ironing in the first place if she’d taken them out of the dryer soon after it finished.
My sister (whom I paid) did grocery shopping and cooking, but spent most of her time in the guest room reading or watching TV/movies on her laptop. When I would’ve preferred she clean the bathroom. In fact, one time she complained, “Ew, Dad’s bathrooms are so dirty,” to which I replied, “So, clean them!” She said “Oh!” and cleaned them after that, but not to my standards.
Mostly I let people do their thing, as Dad seemed happy with them. But when Sis mixed up his pills, nearly killing him with double-dosing of the BP meds, twice, I did say something about that.

It’s hard to delegate. You have to prioritize, find/train workers suitable to the highest priority tasks, supervise those, and let the rest go.

[YewGuise]

That was kind of a long list, in no particular order. You have two weeks until the 1099’s start rolling in. Good luck!

[ptheland]

That was kind of a long list, in no particular order.

But still helpful. If a bit tilted toward cleaning the bathroom.

You have two weeks until the 1099’s start rolling in. Good luck!

I need to be checked for sanity. Between now and the end of the month, I also have to move out of my current office and back into my home office. Plus inform clients of the move. Plus send out organizers.

And I think I have a basic resolution to the issue of help. The main point of the help was to have someone at home to keep an eye on my son and do a few small things. Well, if I’m going back to work from home, I’m there to keep an eye on him. I can fix his lunch when I fix mine. Pretty much everything else can wait until between clients. (Which happens a lot. I generally allocate an hour for appointments and usually need only 30-45 minutes.)

So - the agency and help are going away at the end of the month. Frustration solved. If I’m going to refold laundry so it actually fits in the drawers, I can just fold it right the first time. No additional time needed. If I have to re-sort the silverware drawer, I can just put it away right the first time. No extra time. I’m already in the habit of putting dishes in the dishwasher after each meal, so there’s no extra time there. I suppose there’s an extra minute every day to actually start the dishwasher. I can work that in.

Probably the biggest issue for me is the waste of money. I have some very generous help in paying the cost. But if it’s not helping me physically or emotionally, it’s wasted money. So the waste will stop as soon as the one thing they actually do (be there when I’m not) is no longer needed.

–Peter

[YewGuise]

Glad to hear aides will no longer be needed.
I suggest you continue your search for one who meets your standards, so you have a backup.
Because realistically, as you get busier, how long will it be before you resume use of the dad lift, and injure yourself again?

[ThyPeace]

I am glad you have resolved the short-term frustration. In the longer term, I think it’s still worth finding someone who can help. With my Dad and sister, we were very lucky – a special ed paraeducator in our school district had hit retirement eligibility and did not want to go back into the schools. We doubled her hourly rate and asked for much less time per day, but for year-round instead of nine months. It works out to more money and lots more free time for her. And she’s absolutely awesome. She does more in two hours with my sister every day than I would come up with in eight hours, and knows about resources that I never would have come up with. She has also won over my dad, who was grumpy about adding someone to their mix.

None of this is purely necessary for them right now. It just adds to their quality of life. But when Dad is less able and my sister needs more help, we will add to her hours and probably ask her to be the coordinator for other caregivers. She knows every educator in the County and most of the healthcare workers. If you can find someone like that, it’s likely to be a great value to both of you.

ThyPeace, and depending on the person, may help with your son’s boredom. Does he have a job or education that he’s working on?

[YewGuise]

Great post, just allow me to tweak: Does he have a job or education that he’s working on?
to: Does he have hobbies or activities he enjoys?

Apologies, but as a retiree, I’m kind of sensitive to the push to productivity. It’s a work in progress to transitioning to smell the roses, run my own race, etc.

[alstroemeria]

The main point of the help was to have someone at home to keep an eye on my son and do a few small things.

I think what you really need is someone to spend “quality time” with your son not just watch him–like a friend to shoot the breeze/enjoy music/movies/games together and/or a mentor to teach him interesting stuff. Help make DS’s days wonderful.

Especially during tax season, even if you’re home, you could use housekeeper help to fix lunch for both of you and clean up, maybe also shop, dust & vacuum, run the laundry, do dinner prep and maybe cook it. So maybe come from 12-4pm?

[alstroemeria]

BTW, a friend doesn’t have to be a friend your son makes himself.

The eldest child of close friends of my parents had CP. When he went off to college, they paid a fellow freshman to be his roommate, aide, and friend. That young man turned out to be quite a delight, and after med school and a stint in the army, he married his roomie’s sister. (And the young man with CP married the journalist who interviewed him about his challenges & achievements as a disabled college student.)