Doing initial research for In-Home vs Memory Care in a facility... god this is rough.

[FirstLight]

Mom finally had the final "event" that pushed us to admit what we have been trying to hope would be ok.

Both parents are losing cognitive stuff, mom actually went wandering Friday, they picked her up and she ended up in the ER. She also faceplanted while walking so her face is half roadrash and black & blue...

Sister has been staying with them all weekend, it's finally apparent we should have done something sooner, but we also havent been visiting them as much due to COVID.

Now it is time to deal with taking "guardianship" and figuring out how to care for them. Whether in home vs a memory care facility is best. I hate to say I am leaning toward a facility.


what really chaps my hide is that their Medicare only covers home health nurse for immediate post hospital care...the rest is a big fat ZERO.

But even so, the Home care places we have nearby only take cash. So we're screwn either way.

After doing the math, home health care for 5 hours a day will cost about 70K/year
One of the Memory Care facilities is about $75K year

Not much difference.

ohhhhh fuck...this is so far over my head and my sister and I are at least talking but we're not very friendly and she wants to sell MY house to pay for this (everything is in a family trust, but there's still no designation on power of atty or any of that...so she's trying to get us an appt with the lawyer...)

I have this knot in my stomach...

[alwaysinasnit]

1. I have no experience with this but this might be a place to start/look in to.

https://www.agingcare.com/Articles/Social-Workers-Support-Seniors-and-their-Caregivers-199571.htm

[MuseRider]

2. Good luck.

My father was dead before I was 20 but I was the only kid left anywhere near my mother as she got a bad cancer. I was a critical care nurse and was entirely able to care for her and take care of her medical needs but the rest of it? I am so sorry to see that you will have the addition of a sister who seems hard to deal with. The only thing I can say is go slowly or as slowly as you can. Take lots of deep breaths just to keep your balance and quit any conversation that gets touchy before it gets bad. Do not sell anything until everything has been completely planned out.

Good luck. It is so hard to see them ill like this and then to top it off with all this crazy responsibility. Stay healthy and go as slowly as you can. My heart is with you.

[FirstLight]

6. Thanks

...at least you have nursing background. I am ill-equipped...I woke up a couple time in the night worrying about this upcoming weekend, I'm "on duty" and I have never helped anyone shower before... I am scared.

It's also awkward cuz I am a total night owl, like to have a puff in the evening...but cant do that around them cuz they will flip out. So i am going to have to be "normal" and get to bed early and get up at dawn, etc. I know it sounds trivial but it worries me cuz I am not gonna be as good at this as my older sister...

[MuseRider]

7. Don't talk yourself down like that.

You will have different skills. As you go you can work out what you hate to do, what she hates to do and what each of you do better and figure it out. It will be more difficult since she is not exactly friendly.

You may have to change your schedule a bit but you need that down time you are used to. Nothing wrong with a little puff and if you can do both at the same time then take a walk, have a puff and air out before you go back in.

You will be fine but it is a scary thing to do. Yes, it certainly was helpful to know how to do the main care but what you have to do is just as important. Deep breath. It is obvious you care enough to make this work, you can do it and do it well and remember it is not for a long time. (((HUGS)))

**no matter how hard it gets remember how you will feel after they are gone. It is so important to do this for your future mental health. (((more hugs))).

[58Sunliner]

14. You need a couple of home health aids for assisting.

Preferably a shower chair, grab bars installed waist high, and a non-slip surface. Your local hospital where she gets treated may be able to help you with a social worker who will do an in-home evaluation and can sometimes set you up with some training for in-home care. The most important thing to remember is to provide stabilization through their movements. You on one side holding them stable with your arm around the back and positioned under their arm pit, and some sort of device, be it a stable chair or grab bar that they can access with their outside hand. Shower chairs should have rubber non-slip feet. If you have a tub height to overcome, assist them to sit on the edge of the tub and help them pivot to inside the tub. Position yourself slightly behind them and support them as they lower onto the chair seat. Getting out of the tub is the reverse. The important thing to remember is not to compromise your center of gravity when you assist. Don't extend your arms out away from your body to assist. Don't assist someone in a chair from a front facing position, as they can tip backwards. At the side and slightly behind is where you should be. I am sure some of this stuff is online.

[pennylane100]

3. I wish you all the luck in the world.

I am certainly no expert but make sure you get financial answers that you trust. In my opinion, and I certainly no expert but make sure you have good information on any of your solutions. Please take care.

[handmade34]

4. so sorry you have to go through this

been there, done that and it is really tough

like so many health related concerns in this country, residential care is not easy to maneuver

I hope you don't sell your house to pay, that is not fair and not a good idea

breathe, don't panic and remember to take care of yourself

[Dave in VA]

5. Hope this is helpful

Contact your local Alzheimer's Association and they can get you going in the correct direction. Also, the Senior Services office in your local city and/or country.

alz.org is the web site.

[58Sunliner]

8. I am so sorry you are going through this. No easy answers.

Don't know if sharing care is an option with some adult day care. That way you would not have to sell your home.
Do you have a diagnosis? If not, I would start there. A complete neuro eval is necessary. Good luck.

[Wellstone ruled]

9. Welcome to the Reality World of

drain the Bank Account Health Care. Just did a call with our Niece this past weekend trying to figure out her next move with her Father. Medicare ends next week for his stay ordered by his Doctor for care at the local Nursing Home.

Big massive nightmare,finding a locked facility without Covid. So far in three days of making calls with the help of her local Organizations,we struck out. But,we keep calling.

And yes,it will cost 6900 to 8k per month. So using those numbers,his savings will be gone in about 15 months. BTW,this is not our first Rodeo finding a care facility. Last count,this makes five. Just so one understands,when it comes to complete Medicaid Payments for service,one has to be aware of State Laws pertaining to Claw Back provisions. Which means,portions of estates transferred to Siblings or Children may be subject to claim in order to settle the patients expenses.

Best of luck,it is not easy,you will find very helpful Organizations willing to help. Rest assured,there will be a stinker along the way.

[pnwest]

10. I've just spent the last four years going thru

this with my mom. Do not feel guilty about a facility. The best thing for dementia sufferers is routine, familiarity and feeling safe. My mom resisted mightily, until her own “event”. Once settled in, during a moment of clarity she told me “I know why I’m here, and it’s ok”. She felt safe. A Place For Mom was incredibly helpful in my search, they are a caring organization.

The one drawback is none of them are perfect. They are ALL understaffed. You have to be involved in her care. I told them a million times mom was super prone to UTIs, but I always had to push for a test when mom started acting more loopy than usual.

Look for a robust activities program and an enclosed outdoor space where she can walk. And ask if they’ve had Covid in the facility and if there have been deaths, and what their protocols are.

It’s a terribly sad thing to watch them disappear one memory at a time. Talk with her as much as you can while you have her, let her lead the conversation. If she says it’s 1971, just agree with her. I just lost my mom after four years in care, and even tho I knew it was coming, it was still heartbreaking, and I thought of a million things I wish I’d asked her about.

My heart goes out to you. You’re welcome to message me any time.

[pnwest]

11. Also, if your mom has no money, there ARE

dementia facilities that accept Medicaid. I used an Elder Law lawyer, best $8000 I ever spent. Worth every penny, and it will still be a lot of work at your end, but they will guide you through all of it .

[leighbythesea2]

12. Yikes

I have done this research somewhat. I know its super expensive. Not truly the same for me, but I also spoke with a friend who is an attorney. His dad suffered from Alzheimer's. He was very helpful with options.

If you mom has assets, sounds like it, then yes, you are going to pay 70 or 75k for one or other.

Have you and your sister considered renting the house? Does it have to get sold? Is there money from ss your mom gets, towards the 6k expense a month at a facility, and rent could supplement? These are questions i was asked. (Mom has a house, sitting unused, currently)

I found out medicaid pays for everything but the patient has to be without assets for 5 years first. That's a big process of divesting--- & if decent ss benefits it still doesnt really help, always.
So complicated. I feel for you.

[3Hotdogs]

13. Elder law attorney is your first stop. Begin by calling your local bar association for referrals.

Referral should be free, or around $25.00. $8,000 is high. In N.J., I paid $2,500. --- actually, whoever prepared the trust should be able to help.

At the initial consultation, bring all the information and documents you can think of. -- along with all the questions you can think of.

Were either of your parents veterans? Korea, Viet Nam? If so, contact your county V.A. office. Every county is supposed to have one. If you can't find one, contact the American Legion. They have people trained to weed through V.A. regulations.

[catrose]

17. Local aging agencies may have an eldercare lawyer on staff

[slightlv]

15. Going thru this now

Sis and I were never really close (big age difference), but this has drawn us closer than I ever thought possible. You may find it's the same for you in time. As oldest, everything fell to me on decisions, and I kept Mom in my house for over a year. When she finally got to the point where she stopped wearing pants, cussed like a sailor to me and hubby, and I saw in her eyes at one point where she had no recognition of who my husband was, plus she was falling in the house for no reason. I'm 102lbs. Mom was 200lbs. It got expensive calling EMS every time she fell and we couldn't get her upright. But her behavior was off the scale to the point of becoming violent. The one decision I made without my Sis's prior knowledge was having her moved to Adult Behavior Mod unit at the hospital when she insisted one night (among many others) that she her chest hurt and she had to go to ER. For some reason, she loved going to the ER, altho while there she cussed and swore at everyone. (sigh) Of course, with the Pandemic, she was by herself. She was assigned a social worker and I told her we had to find a long-term care home for her, preferably memory care.

It wasn't... and still isn't... an easy decision. It wracks you to pieces, especially with Xmas coming and knowing I can't bring her home. But tell her why, and she'll forget it five minutes later. I'm hopeful with the vaccine it'll get easier as Sis and I care share bringing her "home" for weekends, etc. It's the loneliness and feeling of abandonment I know is racing thru her head that hurts the worst.

We sold her home and after that, it's Medicaid. We were lucky to find a memory care home 45 minutes away from where I live. Out in the country... really pretty place.

The best thing I did was to tell my sis I'd make no decisions without her input. That drew her in closer to everything. As such, she took on keeping track of mom's finances and I take care of all medical stuff... but we keep each other informed. After a few months of this, we decided to meet at least 1 or twice a month for supper someplace or just get drunk. Believe it or not, it's helped and we're tight with each other. I'm hoping something like this can bring you and your sister together; you'll need a shoulder to cry on at times, someone to spill out your worries and fears, and someone to let down with and relax.

Just realize, there are no good options at this point -- and do what's not only good for your folks, but don't forget about what's good for you and YOUR family. Remember, you count, too. Do what you can. Check with the Council on Aging, and see if a social worker thru the hospital (or referred to you by a hospital) can be assigned. Believe me, it'll help you tremendously and ours cost was nothing.

Good luck... and know there are those of us out here in the same place as you. Don't know how old you are, but I'll be 65 in Feb. I'm scared of what the future holds for me, and actually hoping I leave before I get to Mom's point. That's another part of this to look out for in yourself. I ended up having to have my doc prescribe a "kicker" for my happy pills just so I could get thru all this. The two biggest pieces of advice I can give you is don't shortchange yourself or your family, and make small moves towards your sister.

{{Hugs}}

[FirstLight]

16. thanks

to you and everyone who has replied, I feel a little less alone.

Interestingly, the last place I called was the best one so far. The secretary is also a caretaker (they take turns running the place) and she and I were talking about how my dad has all these great stories to tell and she said something about "celebrating" peoples' lives and experiences...that was the ringer for me.
She also said they would work with us and the VA to get more help and discount the rates....as well as medicare.

Sister is working on the money/pile of BILLS that dad hasn't been able to handle. and making sense of that. as well as getting us both in to see the lawyer. Luckily the same one who drew up the family trust is still around. Dad sis a LOT of saving and stashing stocks etc...but he also managed to "hide" a lot of it, and hopefully we will be able to find some liquid assets before my house goes on the block. (my teens have moved out and I'm in a 3bd2ba...so yeah, I could stand to downsize I suppose but it's not gonna happen before spring)

ugh...I just gotta get through one step at a time...
:hugs:

[Trueblue Texan]

18. Memory care units...

...can actually be wonderful places for patients with dementia. The staff is typically trained specifically for dementia patients and what they know will amaze you. They have appropriate activities to maintain engagement in activities of daily living and social activities, music, art, gardening activities. They know what NOT to do with a dementia patient and how to redirect attention when patients are beset with sadness or anxiety. You don't typically find this level of training in a nursing home setting. They can keep your parents together in a room or arrange to have one visit the other so frequently it would seem they are still living together--of course, this got really screwed up because of Covid-19.

That said, not all memory care units are the same. The best way to find a good one is to visit and talk to visiting relatives. Do they regularly get to engage in activities such as meals, exercise, or music and art activities with their loved ones? Check out the activity rooms. Is there an abundance of household type activities in which to engage? Laundry to fold, plastic dishes to wipe, tables to set, plants to water, music, and nostalgic pieces of bric-a-brac or furnishings? Check out the dining room at mealtimes. Do they have a separate dining place for residents who require someone to feed them--they should. Do they have people in the main dining area to help with patient needs at the table, such as wiping spills, pouring more milk, spreading butter, cutting meat? Is the place noisy or calm? Do you hear patients repeatedly asking for help? Sometimes this is normal because some dementia patients simply repeat the same words over and over even when all their needs have been addressed. But someone should be trying to comfort these individuals.

You will not find a perfect home for your parents and don't feel bad that you realize you cannot take care of them as you wish they could be cared for. I have seen far too many family members take on such a job, run themselves into exhaustion and guilt so that they are the ones who die first or actually begin to demonstrate signs and symptoms of dementia themselves. I have never met a caregiver who wasn't completely shocked by the amount of effort it took to care for their aging loved one and this goes double when the loved one is demented. They become guilt-ridden, short-tempered, resentful, and/or just gravely ill from the amount of effort it takes. Being in a community of individuals who share their needs is not worse than being with someone who is absolutely exhausted and spent from caring for you. Take care of yourself so you can be there for your parents.

[mahina]

19. This thread is a memorable testament to DU.

Good luck FirstLight. Thanks to everyone who posted.