Does anyone know where/how I can accurately evaluate how much care my dad and his wife actually need? I visit several times per week, and I do all their life management stuff, but (thanks to a few people on this board!) I see their need is greater than anticipated.
There is a home care aide 6 hours/week who cooks, does laundry, etc. I've decided that for this next epoch in their care, we need more in-home help.
I am never sure because they report their health differently each day. Other than the ADLs test, is there any other assessment tool you've found helpful?
Good luck on your continuing journey. Blessings to you and your family.
You can google the Lawson-Brody Instrumental Activities of Daily Living - it may be useful to you - or use the Area of Aging or each Home Help Agency's own checklists.
All I'd add is if all this management suits you, keep it up. If not, look into finding Geriatric Case Managers instead to hand over to. I haven't personally used a service like that but I am going to look into it. After the slippery slope journey I went on (& since climbed out of) I made the decision to do temporary care (eg post surgery) only. To stay in their homes, occupants need to be either independent, able to manage their own affairs, or possibly use a GCM, or find some other solution - their solution won't be ME. I work full-time so won't be taking on that role in the forseeable future. But that's me.
I have respect for you juggling so much.
You have spent a lot on them because you care but you do need to consider your own future as well.
When I was hiring aides, to get mom used to having them, the agency sent a nurse first, with a "test." It is a better "test" than the ones used in a doc office (those are primarily to get a baseline and monitor changes over time - it isn't sufficient to get a full picture of what goes on at home.) It also allowed her to assess mom's needs. Hers at the time were not that bad. She couldn't do finances (I'd already taken that over), couldn't really monitor her own medication (nurse suggested a timed/locked dispenser, which the aides can check but not dispense - they can point out missed doses that day and watch to see it is taken) and was no longer cooking (found this out after taking the car away, requiring me to go periodically to take her shopping or bring supplies.) We started with 1hr/day, to get her used to them. The plan was to increase time and duties as needed, to allow her to remain in her condo longer. Sadly dementia lies to the person, and this didn't last even 2 months.
The "test" she did was done in the condo, mom sitting at her "comfy" spot at the kitchen table. Two of us were there as well, making this "test" less threatening to her and she participated. The nurse then made her recommendations. She told me Medicare would have covered some in-home assistance, IF mom had agreed to some personal care, such as help with bathing. Of course, in her mind she was just fine, thank you, and didn't need any help!
If the aide you've hired is through an agency, ask about this test (I wish she'd told me what it was called.) If they don't do this, ask the PCP about it. I'm sure there must be a way to have this ordered.
BE THERE when the test/assessment is given/done. You are observant and know their daily routines better than a newcomer and even more than aides who are only there 6 hr/week. If you exclude 8hr sleep, there are 112 hours in a week, only 6 of which is observed by aides.
Most home health care workers work "shifts" 6-12 hour blocks of time. Care will be based on a worker coming in for those blocks of time.
Insurance will only pay if the need is "new" and expected only until the person recuperates (as in somebody having a cast on their arm or leg and needing help). Insurance generally will not pay for long term needs. Long term care insurance will pay for long term care help but it is expensive.
Have someone that understands insurance jargon read and explain, if needed.
Start making a typed list of everything that you do and the home care aide does for them and how often it needs to be done.
It is clear to me that they really can no longer "live independently" - since there is nothing independent about how they are currently living.
The only things they manage themselves is:
Getting to the table to heat up meals left by someone (me, caregiver)
Answering the door (which could take up to 10 minutes)
Napping (plenty of that)
Looking online for random things to buy - using their dwindling funds. Last week, my dad wanted to buy a bidet and get a haircut that would make him look like Julius Caesar - do I think he'd look good with bangs?
Slowly, slowly, slowly dressing themselves in the morning. Stepmom takes 5 minutes or more PER SOCK!
Yes, that's not so independent. Good way to look at it. Thanks. And they're lonely because they can't leave the house anymore unless it's with me to go to a doctor's.
Your marriage and your sanity are more important than having your father live with you. It will soon become unsafe for him to continue living with you - so you need to start exploring other options.
You should also talk to them yourself and ask .
You should make sure their bathroom has bars to assist at the toilet and shower/tub area as most accidents happen in the bathroom.
Also, you should make sure they have easy meals to fix in microwave.
If you think they could fall, you could have one or both if them wear First Alert bracelet or necklace
https://www2.illinois.gov/aging/Pages/default.aspx
https://www.aafp.org/afp/2018/0615/p776.html