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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?

I agree an area on aging, the nurse of the home health agency you use can do a needs assessment on them.

Good luck on your continuing journey. Blessings to you and your family.
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Reply to cweissp
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Sounds like you are doing a fine management job here, with 4 under your care. Wow!

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.
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Reply to Beatty
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Can you speak to nurse from a home health agency? They can do an assessment and give you an idea. Many do free assessments.
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SeniorStruggles Apr 27, 2021
Thanks for this great idea! Stepmom is post-surgery, so the result may change in the next few weeks. I guess I should wait.
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Observation is going to be your best judge of how much more is needed each day.
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Observation is going to be your best judge of how much more is needed each day.
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SeniorStruggles: Geaton777 has provided the link for the Illinois Department of Aging. Thank you, Geaton! SeniorStruggles, your profile indicates that you're caring for your 81 year old father and that you've got FIVE elders on your hands.
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SeniorStruggles Apr 27, 2021
I had one die on March 30, but yes. Four now. I'm so tired my brain cells are feeble these days, I am jumpy, high blood pressure, extremely tense, even after long meditations. My phone, like all of ours, starts ringing often before 8 AM with their endless lists of requests and questions, problems, concerns and insane demands. This morning, my 80 y/o father had his wife call me at 8:01, 1 minute after I turned on my phone this morning, to ask me if I know where the wasp spray is in the shed...which on my property...and filled to the rafters with the thousands of used, junky tools and extra rubber bands and scraps of dirty cloth and half-used sand paper that he not only dragged up to my house when I moved them here but also actually dragged to Panama in a container when they moved there for 16 years in the middle of their lives. Strangest man I could imagine in that way. And no, I don't know where he put his wasp spray. Everything's in boxes full of random items!?!?!
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Would they be willing to enter a facility? If so, it’s 24/7 care for them and is often more practical as far as finances go.

You have spent a lot on them because you care but you do need to consider your own future as well.
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Reply to NeedHelpWithMom
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You could start with someone to help with cleaning. That could be once a week or once every 2 weeks. Maybe get a second home care aide who will shop and cook on one other day a week. I also see many people are using DoorDash or some similar app that helps with shopping, when I'm in the grocery store these days. You can build it up gradually, as needed. Do they need someone to take them places, and escort them so that they are getting around safely? If they are capable of escorting themselves, but no longer driving, then an account with a car service might be helpful.
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SeniorStruggles Apr 27, 2021
I wasnt' clear. I do the grocery shopping, but the house cleaning, laundry, help with their bathing, the cooking, is all handled by professionals. I do every appointment setting, bill payment, complaint listening, appointment driving, cane, wheelchair and walker fetching, and so much more. Neither of them is capable of going much of anywhere on their own anymore, because they forget what they're supposed to be doing and where they're going.
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Needs and capabilities can fluctuate during the day. Some days are better, some are worse, some are a mix.

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.
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SeniorStruggles Apr 27, 2021
Deeply wise and much appreciated. Will do.
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Home health care agencies have wonderful assessment tools. Talk to a few local agencies. Some will come to do evaluations in the home and others will ask you to self-report needs.

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.
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Isthisrealyreal Apr 25, 2021
And LTC insurance has lots of rules and criteria that must be met for them to pay.

Have someone that understands insurance jargon read and explain, if needed.
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Home care can do an assessment. Their medical foc there is help everywhere just need to know where toblo hhere jh
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Reply to Sharon45caregiv
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The fact that you "all all of their management stuff" speaks volumes.

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.
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SeniorStruggles Apr 27, 2021
Ha ha ha ha! Good point.

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.
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I am at this point with my dad. He actually has someone in for about 5 hours a day. He can get himself up and dressed but doesn’t do anything else for himself. I say “doesn’t” because in many way he likely could, but my mom did everything for him, so after she died, he was pretty helpless. My husband and I looked in to assisted living for him at one point because we were getting burned out and my dad was declining. He was diagnosed with bladder cancer last year, has dementia and heart issues (pacemaker). My brother and sister, who live 4 time zones away, then decided we were being cruel to even think of such a thing. My main point here: you have to factor YOURSELF in as much as you parents. My siblings just don’t get the toll it takes to be the closest child to an aging parent. My dad is a wonderful guy, thankfully not an angry senior with dementia. But it is HARD, always knowing that whatever happens, I am the decision maker. My sibs are challenging me right now; want to add themselves to all the POA documents. Thankfully my dad and his lawyer will tell them that this would be ridiculous, given where we live. This has been tough as is, but my sibs are making it into a nightmare.
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dragonflower Apr 25, 2021
Because your sibs are not local, they do not see the decline in your father and they may be in a bit of denial. (I went through the same thing with my brother.)

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.
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The Best thing is to have a couple Cameras installed where you can watch them 24 7 and see how they get along.

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
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ThisIsIt Apr 25, 2021
I agree totally about the cameras. We installed 4 NestCam cameras in my mom's house so we can check on her periodically, esp when she doesn't pick up the phone when we thinks she's suppose to be there (eg, should she not hang up the phone properly). The basic program (which we use) does not come with any monthly fees. It's amongst the best thing we did as she transitioned to more care. We can also see what caregivers are doing (they are informed mom has cameras in the house) and when she has OT/PT visits.
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Here's the website to request an assessment:
https://www2.illinois.gov/aging/Pages/default.aspx
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Reply to Geaton777
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This is something that their local Area Agency on Aging should be abke to do. It's called a "needs assessment". Or their doctor can probably order one.

https://www.aafp.org/afp/2018/0615/p776.html
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