Elder care costs, insurance, etc.

[bright eyed]

Well, my father in law is not doing so well.

He's a tough old guy in his seventies (close to 80's) and has diabetes, high blood pressure and a very stubborn personality.

He injured his leg last year (i think it was a cut) - which eventually became gangrene...that was cleaned up, then something developed on his heal and now a chunk of his heal has been cut off (close to the bone).

I just saw him and he has lost significant weight, and mostly sits around, watching tv or sleeping. It seems a very miserable existance. I think he is also on a lot of codeine and tylenol.

My MIL takes him to the dr. once per week to check on his wound, and they just told her that they are concerned it is deteriorating. It was not a bone infection as they suspected, but are now doing blood tests - which if the results are bad, he will likely get an amputation...

This leads us to several issues that i am now involved in sorting out.

He receives social security income of about $1200 and MIL receives disability of about $900 - total income $1900 - they have a house and a $120k mortgage on it (mortgage is about 5 years old) - which i understand doesn't affect his eligilibity for Medi-cal - but the friendly people at the county office apparently got rid of my MIL by telling her differently - i doubt it was a language barrier problem since spanish isn't exactly a foreign language in that county.

Anyhow, we are about to apply for medi-cal which should help cover some of the costs that medicare is not covering...

but even with that i'm nervous about what the surgery, and after care would cost? also, what our options are for in-home care etc. MIL is getting worn out with taking care of him (she is on disability for carpel tunnel and is barely 5 ft tall, taking care of a grumpy 6'4 200 lb guy).

my SO had been sending them some money for incidentals (i think a few hundred each, each month) and had claimed at least his dad on his taxes as a dependent - but i'm pretty sure all that should stop right? Will SO be more responsible for other costs, or will his income be accounted for because he used to give them money and claim his dad?

Other options are:
1) sell house (valued around $370k on zillow, but it's in a terrible neighborhood, house next door is vacant, and so conservatively we might get $200k) use $ to help pay for these costs - they can move to socal and live w/ MIL's sister.

2) stay and figure out the in-home support care etc.

Are there other costs/concerns i should have on my radar? Best resource i have found so far is the HIC*P office which has already been helpful in answering questions and should help us through the application process and figuring out if he needs other gap filling coverage...

just want to dodge any more bullets i might not be aware of.

thanks for listening and any advice...

[Brat]

After a three day stay in the hospital he will be discharged to a skilled nursing facility where, so long as he is progressing and has a good attitude, medicare will pony up for a month or two.

I would not sell their home to pay for his care. You may need that asset for MIL's needs. The value of that home will be exempt from benefits calculations.

The best gift you can give MIL is a visit with an attorney with an Elder practice. That person will be current on State and Fed programs.

Use this time to start looking at nursing homes that accept Medi-Cal patients. Start with the Medicare website and find the best of the lot in her area. Then visit. Try to identify several that are acceptable. If he is a veteran he may qualify for care in a VA domiciliary.

Often case managers will try to keep the patient in the home with visiting nurse services. Given her inability to assist with transfers I don't think that is suitable.

Now to the core problem... would FIL's quality of life be improved with the amputation? Sometimes I wonder if, where palliative care is suitable, aggressive treatment is really in the patent's benefit. Rich is the go-to guy here, but I would ask the physicians about the range of outcomes with and without the surgery.

[bright eyed]

Thanks brat, i will look into the care homes in his area.

I'm not sure what the situation is for his leg and will definitely ask about all the options...

[FinallyRetired]

I'm sorry to hear about your FIL. It's difficult when our parents or in-laws can no longer care for themselves. It sounds as if you have thought through the options and are doing the best you can under the circumstances. I echo the advice you received about meeting with a good elder care lawyer. A lawyer would also give you the best advice about whether selling the home is a good thing or not -- I suspect it is not, unless you are at the point where neither your MIL or your FIL can live on their own in that home, in which case you may have no option but to sell. You may have to if you need to qualify them for medicaid.

We're taking care of my 90 year old MIL in our home, and have gone through a few preparations. Before we moved her with us, we tried to keep her in her own home in Texas (we're in Virginia) with day care helpers. That was pretty costly and unreliable. They charged about $15 an hour, and sometimes had to stay with her 24/7, which got pretty expensive. The other problem is that oftentimes they canceled at the last minute, and one of them turned out to be dishonest (the agency fired her).

So we decided to move her in with us. She's in good mental health, but has diabetes that restricts her mobility without a walker or wheel chair, so she needs assistance with daily chores such as cooking, bathing, etc. We want to avoid a nursing home if at all possible, because their quality can be poor, and their cost is extremely high -- over $100k a year in our area. Medicaid would pick up most of this cost if we qualified her, but even then we would need to find a medicaid bed, and those may not be very good. We're holding onto this option if and when we get to the stage where we can no longer care for her, but for now we're going to try.

The biggest expense so far has been home modifications, including a stair lift ($9k), a wheelchair add-on to help her up and down stairs ($2500 used), and miscellaneous things such as walkers, toilet seats, etc, for maybe another $1000. Medicare only covers the inexpensive things such as one walker, one wheel chair, one toilet seat.

Medicare has been good about sending nurses to the house a couple of times a week, and we have plenty of doctors in the area that take medicare, so her medical care has been surprisingly easy. The burden on our time has been more difficult for us, since one of us has to be in the house pretty much all of the time and, frankly, my wife has done the bulk of the work so far. We're working towards leaving her with a day care person during the day a couple of times a week. Our county has a day care program that is essentially free, but it has a waiting list. Day care attendants cost around $18-$20 an hour, and some of the agencies require a minimum of 16 hours a week.

After four weeks of doing this, I would say the costs are not that much once the front end home modifications are done. And since we're both retired (well, I almost am), staying home is not that much of a burden. But it does take a commitment, dedication, and a lot of prayer.

I don't know if home care is part of your thinking, but if it is I hope this info helps a bit, and let me know by post of pm if you have questions I can answer.

[bright eyed]

Thanks STR for the info and for sharing...

It can all be quite overwhelming!

And now we've knocked a drop of good sense are at least trying to figure out plans for MIL too - although she is much healthier than her husband, you never know.

For now we're applying for the medi-cal which should help pay for what medicare is not covering...and also i think that i or my SO need to be the ones communicating w/ the social worker/county and not MIL who get's the run around and i think has a hard time understanding what information they need etc...

i just hope she saves all the receipts, documents etc.!

[TexasGal]

If your FIL is a veteran, you can apply for funds for them to use for his care at home or in a facility (cash paid to the veteran). A surviving spouse can also receive funds. Go out to this website and check it out. I did not apply myself because my dad died much sooner than I had expected him to. But I was definitely getting ready to apply for this. I have heard that the paperwork is challenging and it can take 4 months to find out if you get the benefit, but they pay it retroactively to the date you applied if it is awarded. There is another organization called Vet Assist (google it) that can help you wade through the paperwork to be sure what is submitted is right. If your FIL is not a vet then I guess this information might be valuable to someone else.

This covers care in the home, assisted living or in a skilled 24/7 nursing home. I know eldercare can be devastating in so many ways. Maybe this is something you or others can use.

http://www.veteranaid.org/


INTRODUCTION TO THE VETERANS' AID AND ATTENDANCE SPECIAL PENSION


The Veterans' Administration offers a Special Pension with Aid and Attendance (A&A) benefit that is largely unknown. This Special Pension (part of the VA Improved Pension program) allows for Veterans and surviving spouses who require the regular attendance of another person to assist in eating, bathing, dressing, undressing or taking care of the needs of nature to receive additional monetary benefits. It also includes individuals who are blind or a patient in a nursing home because of mental or physical incapacity. Assisted care in an assisted living facility also qualifies.

This most important benefit is overlooked by many families with Veterans or surviving spouses who need additional monies to help care for ailing parents or loved ones.

This is a "pension benefit" and is not dependent upon service-related injuries for compensation. Most Veterans who are in need of assistance qualify for this pension. Aid and Attendance can help pay for care in the home, nursing home or assisted living facility. A Veteran is eligible for up to $1,519 per month, while a surviving spouse is eligible for up to $976 per month. A couple is eligible for up to $1,801 per month*.

[bright eyed]

nope, not a veteran...

he worked as a janitor in hospitals, cleaning up all the stuff from surgeries, etc...tough job!

[Brat]

I am very wary of aggressive surgical treatment for persons of advanced age as a result of my father's experience. He had a menegonomia(sp), a venous tumor on the frontal lobe of the lining of the brain. He was occasionally falling. The neurosurgeon said that if it was not removed he would be paralyzed (no comment as to when). Dad was reluctant but we pushed him to have the surgery. The surgeon said nothing about recovery period, "It depends" was the response. Well, if the patient is 85 guess what happened... he spent 3+ months in a skilled nursing facility after 10 days in the hospital. He wasn't prepared for that, and as the fog lifted and he realized he wasn't home he was one angry Norwegian.

Yes, he had about 10 months where he could function, but then he became manic. As we tried to manage him I discovered that this is common with frontal lobe brain surgery patients. No one told us/him about that. The rest of his life was very difficult for Mom and Dad.

So, sometimes you save the patient but do not improve the quality of life long term. Someone should have a heart-to-heart talk with him about the consequences of his health care choices.

[grumpy]

You might want to look into a reverse mortgage for their house.

Grumpy

[bright eyed]

Ugh,
Just got a call from FIL's social worker and he is not doing well at all. He's in a nursing facility to care for his wound infection and he's not letting them clean him, won't eat and fiddling with his wound vac (turning it off and pulling out the tube).

I'm sort of at a loss at what to do. His social worker thought sending him to a facility closer to home so his wife can visit more may help, but i'm not sure - since he was this way at home and part of the reason she sent him to the hospital (couldn't properly care for wound and hygiene).

Anyone have suggestions?

I think he is in pain and depressed. They have him on anti-dprsts, but not sure that will do much for him. His son will call him once in a while to get him to cooperate, but that wears off after a day or two.

We will soon have to decide if one of us have to be designated to make decisions on his behalf and that makes me nervous too...

[Brat]

Try to involve a hospice team.

[bright eyed]

hm, after googling, that does sound like what he has. He has a nurse that we talk to regularly and a social worker. Dr's visit, make recommendations/updates on his care, and he recently had a psych eval...

i'm nervous about having to help make these decisions. and it's all complicated because i help translate the bureaucratic and medical stuff to SO and he translates it (literally into spanish) to his mom etc etc...then tries to talk w/ dad to see what he can figure out and it's a big circle of phone calls, re-checking in etc. Anyhow, I think my main concerns are 1) when to step in and push for us (SO and me) to make medical decisions and 2) how do you get a stubborn old guy who is depressed, in a miserable situation, too sick to feel much better, not sick enough to be out of it - he's sort of half in - to want to get better...?

[Moemg]

Bright eyed ,
Sorry to hear about your elder problems !

[simple girl]

Quote:

Originally Posted by bright eyed Ugh, Just got a call from FIL's social worker and he is not doing well at all. He's in a nursing facility to care for his wound infection and he's not letting them clean him, won't eat and fiddling with his wound vac (turning it off and pulling out the tube). I'm sort of at a loss at what to do. His social worker thought sending him to a facility closer to home so his wife can visit more may help, but i'm not sure - since he was this way at home and part of the reason she sent him to the hospital (couldn't properly care for wound and hygiene).

Is he doing this due to change in mental status (confusion/dementia) or because he is angry/depressed and doesn't want to get better? I would ask the social worker this question; the team should have a sense of what is going on. You can also ask the social worker if you should be stepping in to make medical decisions yet.

Also, sometimes having family members visit more often is indeed helpful. Does his behavior improve when his wife is around?

[bright eyed]

I think it's a little bit of both - deteriorating mental status combined w/ the depression/stubborn. They have put him on some anti-depres'ts...

The social worker had mentioned that the dr's only spoke english and that they had seemed to think his behavior (not getting what was going on, or responding) was partly from a language barrier, but she thinks it may be his mental decline. He speaks and understands english pretty well, so I told her that it wasn't the language problem. She did say that we would soon have to figure out who will make the decisions for him...They were having his treatment meetings w/ my MIL, but I'm pretty sure she doesn't understand everything that is going on, so why I think we will have to be involved soon/now. They are in norcal, we are in socal...so it's all been over the phone.

I think i will also have the kids draw him some pictures to help pep his spirits up and send some photos. MIL is visiting most days and bringing home-made food (not sure how this affects his diabetes, but he prefers it to the facility's food)...but it's far for her and she doesn't drive (a friend has been taking her)...

and we just discussed SO visiting in the next couple weeks...

[simple girl]

Quote:

Originally Posted by bright eyed I think it's a little bit of both - deteriorating mental status combined w/ the depression/stubborn. They have put him on some anti-depres'ts... The social worker had mentioned that the dr's only spoke english and that they had seemed to think his behavior (not getting what was going on, or responding) was partly from a language barrier, but she thinks it may be his mental decline. He speaks and understands english pretty well, so I told her that it wasn't the language problem. She did say that we would soon have to figure out who will make the decisions for him...They were having his treatment meetings w/ my MIL, but I'm pretty sure she doesn't understand everything that is going on, so why I think we will have to be involved soon/now. They are in norcal, we are in socal...so it's all been over the phone. I think i will also have the kids draw him some pictures to help pep his spirits up and send some photos. MIL is visiting most days and bringing home-made food (not sure how this affects his diabetes, but he prefers it to the facility's food)...but it's far for her and she doesn't drive (a friend has been taking her)... and we just discussed SO visiting in the next couple weeks...

It sounds to me like you are doing all that you can right now. It's a difficult situation, made more challenging due to living far away. Hang in there. Perhaps once he has adjusted more to his new surroundings things will start to improve. At least now you have the support of staff that handle these kinds of issues all the time.

Oh, you could also ask if speech therapy might be able to screen him for his cognitive issues (they do more than just speech). It may or may not be indicated, but it won't hurt to ask.

[bright eyed]

thanks simple girl (and moem, brat) ...i think a lot of my problem is just frustration and all those darn unknowns...it must be terrible to be in his situation and i'm not sure if anything will get him out of it.

[Sandy]

This is a tough situation I don't really have anything to add - Medi-cal, elder attorney, do not reverse mortgage or sell the house yet, since MIL may need these funds, talk with staff in site to assess mental decline and/or depression.

The only thing we haven't heard is: What does he say he wants? If cognitive decline and/or depression are interferring with his reasoning skills now, what has he said about his expections in the past?

[Coach]

bright eyed, I'm so sorry to hear of the challeges your FIL and your whole family are facing. Your situation sounds somewhat familiar -- my Dad's had some real ups and downs, including some stretches where he would do things like pull out his IVs.

I don't have any great advice, but I'll mention from experience that with my Father changes in location are extremely difficult. He keeps a pretty good grip on reality at the nursing home, but if he has to go to the hospital, or a rehab facility, he really loses his hook to reality. So perhaps you can be a bit hopeful your FIL's mental status will improve once his environment stabilizes.

Best wishes! I know what a strain this all is for all of you.

Coach

[bright eyed]

Sandy, I will make sure SO has a convo with him...mostly he's been pleading with him to be more cooperative.

Coach, he is at a nursing facility, and leaves to see the dr. once per week, but otherwise has been there since Oct.

I finally got some good help from the folks at the CA Advocates for Nursing Home Reform, and they gave me good suggestions on at least trying to cover the costs... a real person with expertise! I was so excited...I will make sure to send them a thank you note and donation!