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AlvaDeer’s advice is spot on.

When researching facilities visit several times preferably at different times of the day. Talk to residents or residents’ families - even people you run into in the parking lot.

This forum should give you a very real idea of what you are signing up for as a caregiver in home. They are not exaggerating. It is a full time job - do you have the bandwidth for that and is the rest of your family willing to make that sacrifice. If you use home care services - now you are not only a caregiver but an employer who is juggling employees schedules and emergencies that pop up.

You will still be a caregiver if you decide on a facility. Understanding insurance, attending doctors appointments and being your mom’s advocate with facility. The squeaky wheel gets the crease is so true - you will still need to be present and involved. If you establish a good relationship with the facility there will be lots of phone calls as issues arise day and night.

If you decide on a facility know that it will take mom about 6 months to adjust. Lots of info on this forum about the transition that I’d wish I’d read before I did it.

Good luck to you. My prayers are with you. We all know this decision is gut wrenching. Only you can make the right decision for YOU.
Helpful Answer (14)
Reply to Mmccontex
Marcia22 Jun 12, 2024
Caregiving is so hard! It's the worst job ever. Trying to figure out what is in my dad's best interest and next place to live will be. I need to figure out questions and start touring different homes and see what's out there. A relative had said an active loved one died after being in a home. So not sure what to do now.
Well let's start with the terms
Assisted Living would be in a facility where help is available if the resident needs help with ADL's, medications and possibly encouragement. The resident is free to come and go as they wish, usually they must sign out.

Nursing Home. General term used now is Skilled Nursing facility. this would be for a resident that has medical needs that can not be met by other facilities. It may be wound care, the fact that the person is not mobile and needs equipment to transfer, has "tubes" for any number of medical conditions.

Home Care. Any care done in the home. Can be done by trained caregivers or family. The family does any caregiving that is not done by paid caregivers. There are less restrictions in in home care. (can use equipment, can use restraints (bed rails, lap tables, we are not tying anyone least I hope not))

What you did not mention is Memory Care
Memory Care would be for anyone that is not cognizant. the facility is generally locked so the residents can not get out without proper supervision.

To figure it all out you have to be honest with yourself as to how much care you can do, what you will do, what you won't do, what you can do and what you can't do.
And realizing that when you are looking at levels of care a person generally declines they do not improve.
Helpful Answer (10)
Reply to Grandma1954
Klopes Jun 11, 2024
All of that information is true. I had this same dilemma this past year for my Mother. It made way more sense to get her in an assisted living residence due to my home having 17 stairs, fear she’d fall and she was getting way more forgetful and I couldn’t do it any longer. My 92 year old Mother fell 3 times after the New Year and I couldn’t pick her up!
For us, AL was my best option, though she’s still adjusting, than in home care, every situation is different . Good luck.
TK, so mom is post stroke rehabilitation patient in a NH. Right?
if so, your mom is currently having her stay paid for by her health insurance. Post hospitalization rehab in a facility is a covered benefit for Medicare, which is her primary insurance. And her secondary health insurance tend to follow what her primary does. She s get regular assessments done as they are what is used in determining her progress. Progress entered in her health care chart is what’s needed to be happening in order for Medicare to continue to pay.

Medicare pays for rehab as it’s a term or time limited stay; it’s 100% first 20/21 days and then at 50% up to 100 days and with its care plan based on whatever codes* she exited the hospital with AND if she is progressing sufficiently within those codes. That she is there past the initial 20/21 is a really good sign that she’s progressing as most elderly do not get past the first 20/21 day block. If you need to go over and be a lil cheerleader or encourage her to go & participate at her rehab please pls do this. Both for what it will enable her to do for her future but also her being a rehab patient means health insurance is paying & at double or triple what the State LTC Medicaid program pays for a custodial care resident. So the facility is happy And it gives you some time to really plan out where she goes next.

Personally I’ve always found the therapy teams, the PT & OT in rehab unit, are very up front in discussing what’s what with family as to how things are going. Ditto for the SW. Both have their own licensing and both are sought after by NH to have to have on staff so they can be more frank on their talks with you as they can pack up and leave to another facility if this one gets to be bothersome with them.

* the codes are ICD-10 diagnosis based. Like I’m going to a sports rehab place to get outpatient PT for my knees and its codes M25.562 and M17.12. Covered by my health insurance as it’s related to past surgery and Euflexxa shots. And it’s a set # of PT sessions which I set up and done after the initial assessment by the PT. Stroke care will have lots of codes & you want mom to stay “progressing” in them so she stays on rehab for as l…o…n..g as possible.
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Reply to igloo572
TKBox1 Jun 13, 2024
Thank you so much. We had her care plan meeting and she is still progressing. Your answer was ver helpful and encouraging .
Your profile says your mom is only in her 60s and is in a nursing home. So I will start with your understanding that whatever choice you make stands good for about two decade of future.

Entirely individual decision:
Some things to consider..................

1. Your own personality and adaptability. Your own independent lifestyle needs. Your elder's personality. The knowledge that the personality may change on a dime with a stroke or dementia.

2. Your capability of being absolutely honest about :
a) How long you might do this
b) What circumstances of illness and aging would require in facility placement
c) What attorney you will see to make a care contract for shared living expenses
d) How much privacy you will need
e) How often reassessment of satisfaction of all involved with be done; when ONE isn't happy then placement in care will happen.
f) Requirements of paperwork for POA, Advance Directive, Wills, and etc.
g) Respite will be required for a month each year.

3. I would highly suggest full discussion about agreement that when care is 24/7 requirement there can really be no ongoing contract for care, as this would preclude having any life of your own.

4. Stay on a Forum such as this and read read read read read read until you just about fall over from reading. This is where you will learn what it's like.

5. Explore the assets and finances of the elder and explore care facilities available in terms of Board and Care and Assisted living to get a good idea of cost and amenities available as well as COMPANIONSHIP.

6. Have a clear understand that the day the elder enters your home you have made it THEIR HOME. Have a clear understanding that making yourself a caregiver makes you NO LONGER a darling daughter or son, but a caregiver. Be clear that the caregiver is NOT LOVED because of their need to set rules, limitations, and etc. They are in fact the ones blames, given responsibility, accused of all manner of nefarious acts.

7. Learn all you can online about caregiving and determine not to enable helplessness in the elder.

I could go on. But will end with "READ THE FORUM for an hour each night".
Helpful Answer (9)
Reply to AlvaDeer
TKBox1 Jun 3, 2024
Thank you so much. She is 84 not sure where it says she’s 60. I so appreciate you great support.
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I think that when eldercare becomes a for-profit business accountable primarily to investors who demand a 12%+ return on their investment, quality of care declines and problems proliferate. IMO, that business model encourages high fees and low quality of care. In my ideal world--which we definitely do not inhabit!--most eldercare (and childcare) facilities would operate as nonprofits, funded adequately through a combination of public and private income streams.

When eldercare becomes a profit center, the "care" part often goes out the window. However, it is what it is. When people need facility care they, and their families, will need to do the best they can to find a reasonably well-run facility that manages to strike some kind of balance between the two.
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Reply to ElizabethAR37
BurntCaregiver Jun 4, 2024
I agree. If only all healthcare was non-profit. The price of it would go down and the quality of service would go up. Not going to happen in our lifetimes though.
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In home care keeps you in control and near your loved one. If you had to hire full time help (24/7) the expense would be equal or greater than a nursing home. If you didn’t hire full time help, you would be doing some or all of the hands on stuff…it’s difficult, and at times unpleasant. For example, you need to be able to roll, lift or otherwise move a person to clean them if they are bedridden. You may need to feed them etc. it’s a lot.

Placement in a facility is expensive, you don’t have as much control, however it takes the burden off you and you can be a loved one to your loved one, rather than nurse, cook, maid etc.

Both have their advantages and disadvantages. Finances are usually the deciding factor for most people. Medicaid can pay for a facility if there are less than $2k in assets, but it’s complicated and you’ll need an elder care attorney to help navagate. Hiring care at home has its challenges…finding well trained, trustworthy people is a must, and it’s not always easy. If there are friends and family members to help, that’s great, however people have their own lives and it’s difficult getting some people to honor their commitment.

let us know what you decide and how it’s goes.
Helpful Answer (7)
Reply to Donttestme
CaringinVA Jun 25, 2024
Well-balanced response, @Dont. Thanks!
In home is best however may not be affordable / sustainable. I experienced this with my father in the last two years of his life. The last assisted living facility he was in was horrible, until he wound up in ER needing a blood transfusion and a severe UTi. He was in-home hospice for 6 weeks until he passed away. Unfortunately the level of attention and care required becomes overwhelming forcing families to turn over the care of a loved one into the hands of a money hungry, cold-hearted industry. So sad this happens in this country. Thoughts & prayers.
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Reply to enricor

Personally, after my husband’s recent experience in AL for respite stay, I would say to avoid ALs.
It was beautiful place, like high end hotel with nice lobby, bar, bistro, library, beautiful patios, gardens.
Rooms were nice as well and comfortable.
But that is just about all, there is no life at all in that place, everybody seems subdued and afraid.
Assisted living as the name implies to me means there is assistance in most aspects of daily living.
Not so much, almost none! And we paid extras! They did not help him with dressing, nor meds, he can do those, he paid extra for laundry!
And all of this for $9,000 + per month or daily almost $300.00
Staff does not do anything, one day I stayed for lunch and sent my food back as not acceptable.
Even my husband who is outspoken became somewhat subdued and asked me not to say much as he still needed to stay there for a few days.
I noticed so many things, one at lunch most people needed some assistance as about 80% used walkers, nobody helped them. My husband told me he noticed lots of falls everyday.
There were activities, almost nobody participated, one night my husband went to movie night and was the only one.
Residents are told or at least encouraged to go to bed at 7.00 PM!
Granted, most people were good decade or two older than my husband, so maybe that is normal not to stay up till 11pm.
I called staff for something from my husband room, nobody came, went to reception near rec room, they were all sitting there doing nothing! Not one resident there!
The problem is there is shortage of staff everywhere and just almost anybody can be hired or not fired.
No, I would definitely avoid AL. I am sure some are perhaps better but some worse.
I am sure my husband will be OK for temp respite stay at least for now as need arises.
Home care could be better depends on level of care required.
If there is dementia, incontinence, lost mobility and 2 persons transfer than it is too much for caregiver.
As it happens with most progressive diseases most people end up in LTC as their needs become too complex.
Helpful Answer (6)
Reply to Evamar
AlvaDeer Jun 3, 2024
My brother's ALF was WONDERFUL. Built on large and beautiful grounds, and a group of cottages with overall about 14 residents in each. Corner rooms had two rooms. The dining on one end of the middle, the a small resident kitchen, walk in tube and bathroom, and on other end activity and TV room. The cottages were clustered around the ground and one large cottage was MC. The residents often went to the main building where administration offices were where they typically saw and could speak with the admins, and there would have coffee, sweets in the a.m., comfy sofas for visiting, the daily activites listed (and there were always a good choice).
It was a marvelous "village" atmosphere with good food. They went to films, on tours, to shopping if they wished, took transport to medical out of facility on Thursdays.

I loved that place. Were it not in the heat of Palm Springs it is where I would wish to end my days. They were so great in how they did it all. I can't say enough good about it. Should anyone wish to explore it on Facebook or online sometime I don't know why I always hestitate to give their name, but it was Pacifica Senior Living in Palm Springs. It has won awards and they are well deserved.
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In home care is limited. A personal care residence has aides 24 hours a day. If she has a house, sell it. Do research wherever you decide to place her. She can still use her health insurance. Some places charge extra fees and they have unnecessary amenities. Find an affordable and clean place with no filed complaints.
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Reply to Onlychild2024

In home care if at all possible
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Reply to cover9339

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