Trouble finding caregiving help

ampeterson13

My husband has early-onset Alzheimer's that has progressed to moderate stage. He doesn't need help with personal care yet but he has difficulty communicating, can no longer drive and can't operate the coffeemaker, microwave, TV, etc. He's still cognitively very aware but finally agreed to let someone come in to help part-time.

Trying to find help has become a nightmare. I work full-time and have enough to pay for 20 hours of care without touching my husband's 401K and savings. I'm trying to keep these for when we need full-time care. I contacted two agencies but they wanted $20 more an hour than I can afford. So I tried to find private caregivers. In 3 months, two bailed just before starting for other jobs with more hours/more money; three backed out last minute for family or health emergencies; and one simply didn't show up on the first day. This is causing confusion for my husband and stress for me. I already have precious little time to spare so all of the searching, interviewing, background checks, etc. are sucking the life out of me.

I'm at a loss. Does anyone have any advice for where I can find affordable part-time help? I can pay $30 an hour — is that just too low? How do others manage the cost of caregiving now and planning for the future? I still have teenage kids, a mortgage, bills and at least 15 years until retirement so I need to find outside help, but my husband is not at a point where he needs to leave the home.

Any help would be appreciated.

harshedbuzz

@ampeterson13

I am so sorry. You are in an especially challenging spot.

Depending on where you live, $30/hour may not be sufficient to find a reliable caregiver for 20 hours/week via an agency. Agencies typically keep pay their aides 50% of what you pay them, so it's understandable many will take another position the first chance they get.

I'm in suburban Philadelphia and the going agency rate was just over that 6 years ago. That was pre-COVID before so many folks left caregiving. I have a friend whose severely disabled great nephew was placed in a pediatric care home (think SNF for kids) because the family couldn't find people to fill the care hours to which he was entitled under a Katie Becket Waiver. His single mom had 2 other children with disabilities at home and needed to work to keep the household afloat.

You might find someone at that price through word of mouth or care.com at $30 although it's more work for you. It's hard to say. $20-$25/hr was the rate outside and agency when I last looked, but most folks were looking for at least 30hr/week. A lot will depend on cost of living where you are and what jobs you're competing with. Availability of people can be a problem in rural and very HCOL areas.

A day program can be an option in this kind of situation. It might be a harder sell as he is presumably younger than most and you can't present it as the senior center, but it can be a great bridge at a lower cost in the middle stages. Your area agency on aging might have information on options in your area.

HB

allit

I haven't looked into this yet, but it came up in a support group I attend

https://www.careyaya.org/

ButterflyWings

Is he a veteran? The VA has options. If you have a diagnosis, there should be some HHA and/or respite support available as an insurance benefit (e.g. Medicare or more likely Medicaid I guess, which the Area Agency on Aging or VA (if appropriate) social work lead can help you with).

ButterflyWings

@ampeterson13 if you are part of a faith community or know someone who is, they may be able to refer someone with the experience and reliability you are seeking. If so, you should be in good shape paying $25-$30/ direct pay. That is more than the agencies are passing along to HHA employees, as HB said.

Heads up, your experience with no call, no show, no commitment pattern is par for the course I have found. Even with a 40hr weekly schedule, our agency has had a heck of a time recruiting and retaining someone good and consistent.

Caregiving aides aren’t paid enough and they usually don’t get sick days or any paid time off, so the bar for missing a day here and there can be low. Most seem to be younger moms and if one of their own children is sick they stay home with them since they can’t be in school.

If the aide gets sick I don’t want them at our house because DH is vulnerable and I can’t afford to catch anything either. If I go down even temporarily our whole house of cards implodes. So I have had to send someone home a couple of times and after they lose money, they are much less reliable or loyal.

It’s tough. I had the best luck recruiting my own person to refer to the agency since we are not self-pay — and even that only worked well for 6-7 months.

Try to breathe & pace yourself. You definitely have company in this particular struggle.

ampeterson13

https://alzconnected.org/discussion/comment/216450#Comment_216450

He's not a veteran and because I'm still working, we make too much money to qualify for any assistance.

ampeterson13

Thanks. I know I can't afford an agency — that's why I was trying to find someone on my own. Care.com is what I tried to use but everyone bailed. I'm trying Caring.com now to see if I have better luck.

ampeterson13

Thanks. I'll take a look.

ampeterson13

Thanks to everyone for sharing their thoughts. Much appreciated.

Pat6177

Are you in a place where there is a university with a nursing school? Maybe call and see if any student(s) want to earn some money. Your county’s Council on Aging may list caregiving resources. Talk to as many different people as you can cuz you never know who will know someone who knows someone kind of thing. It is just so difficult. I’m sorry you’re having to deal with all this as well as still raising your children and working full time.

sandwichone123

I work with a nursing school. We don't recommend students work for individuals because their liability is undefined, and the risk is very high for both parties if something goes wrong. TBH, the most frequently cited place I see people finding individual (not agency) help is through churches.

harshedbuzz

@sandwichone123

IME as a forum moderator for special needs and ASD-special sites, the nursing school as font of eager caregivers was a thing too.

Aside from the legal aspect you mention, when most folks are working normal business hours, nursing students are attending classes and doing their clinicals. The part-time students are likely already working during the day or caregivers in some capacity already.

I have also heard of churches as a great word-of-mouth source of caregivers. I know of people finding help through obituaries, other caregivers, support groups and even hair salons.

HB

SDianeL

I haven't had experience with them, but Seniors Helping Seniors was recommended by someone. Also Home Instead is $150 per 4 hour block of time for Dementia care.

lenbury

I have used a couple of services -- one was $43 per hour but the management was flakey. The one I use now is $50 per hour -- spendy but the management is very flexible. I am just hoping the expenses are tax deductible.