How much does full time care cost?

[BlueSeattle]

Hi all,

It's been a while since I've posted here. My wife is still progressing at an extremely slow rate and so far it's still only in her right leg as far as she can tell. A few weeks ago she said she couldn't be sure but a muscle in her left leg might be "missing" She did say it could be paranoia and her left leg is still passing the "tippy toe" test (the first symptom in her right leg was her inability to stand on her toes on her right foot) but it's something for her to ask her Dr when she sees him in a few months (she only goes once a year) So far for us, ALS hasn't been that impacting to our lives. Sure, we had to sell our home to move into a single story home, but renting has it's benefits and we found a wonderful home with a huge garden that she loves to spend time in. Really other than that she just gets tired easily. With the possibility of it spreading to her other leg, this dream world might be coming to and end though :-( Anyway, it's got me thinking about the future again. I remember the days when I used to enjoy thinking about the future... :-(

How much is full time care? I realize sometime in the future this will be needed. I make a good salary and I'd imagine it would be better for us for me to stay working and pay for the care, but I don't know how realistic that is. I know several people in our support group pay for at least part time care, however, with my wife so far off from needing it... and her being right there.... it's just something I don't want to bring up. How much should I expect to be covered by Social Security and my insurance?

 

[Ms. Pie]

We pay $20 per hour for custodial care but I know if you apply to the ALSA they will pay the organization a pittance. Ours said they'd pay $1,000. Medicare will pay some for skilled nursing care but not custodial.

 

[BlueSeattle]

:-( Now I wished I hadn't asked. I might be able to afford that in the future when we need it, but I'd have nothing to live on. How do people do it?

 

[Ms. Pie]

It's not easy. I have a caregiver two hours in the morning and two hours in the afternoon to help me in the bathroom and fix me something to eat Mondays Wednesdays and Fridays and my husband works from home Tuesdays and Thursdays. I will go to Texas for a month next month to give my husband and me a break and my sisters and Mom will care for me. After that one sister per month will come here for a week to give us a break. I have 6 sisters. When I can no longer get out of bed I'll go to my sisters so they can take care of me for the duration. Hopefully that won't be for a long time. My husband is wonderful! But no one should be a caregiver alone. It's not good for the CALS or the PALS.

 

[Nighthawk]

I've heard it's kind of expensive even if the person only shows up part-time and, I think Medicare might or might not cover part of the expenses.

 

[lgelb]

BlueSeattle, we pay < $20 since we cover hrs PT with UW and SPU students who have their CNAs. I am not working elsewhere now, but eventually will have the same number of hours to cover as you will. Still, based on what I have seen so far, I would rather juggle students and set the standards than leave it to any agency (McDonald is supposed to be the best overall in Seattle, BTW) or independent "professionals." If you send me your e-mail at any time, I would be happy to forward the list that the ALSA here sent me, with some annotations from experience.

 

[Barbie]

Medicare doesn't pay for any of it--only if you are on Medicaid. They will pay for short term skilled care--which is very limited help.
If your wife is slow progressing she is probably a long way off from neediing full time care so you dont need to worry about it so much. just starting putting aside a little $ each month as a long term care account. Some times things work out in different ways.

you might start with a weekly housekeeper, maybe be able to adjust your schedule, get relatives or friends to pick up some slack, work from home a couple of days a week, you have to be creative depending on her needs.

We started with nothing for a while, then as the kids became teens and he became more needy, they started helping after school and I started going in to work later. if he had an urgent need, some of my neighbors would go and help him or check on him. we then tried the skilled care from medicare, but that was more hassle then help, then got on hospice but that was limited help also, got dismissed from hospice after a year, and hired a part time CNA. I pay $14.50/hr thru an agency, and the woman is awesome--has experience with ALS and my husband really loves her. She comes in the morning after I get him up and leaves mid afternoon. he is only alone about an hour everyday now but we are in computer communication. Still have neighbors help if needed but that is not often. (once his hand fell off the PWC controls and he could not drive, once our fire alarm malfunctioned and the fire department showed up, and a self employeed neighbor ran over to assist him after I called from the office). If I need to get out or have something to do on the weekend or evening, one of my kids will feed him and watch tv with him.

I don't think about the full time care cost--that would mean he would be really bad off and nearing the end. What ever it cost, it will be needed, and hospice is always an option again.

As Cals, we do what we have to do to give them the care they deserve and need. it won't be easy-- but it sounds like you are lucky your wife is slow progressing. you have time to save up for more care now. Try not to worry about future

 

[sunewun]

Medicare has made some changes in long term care options for people that need nursing home type care at home. If your wife's income is less that 2094 per month and her assets (cash, stocks, bonds) under 2000. It is possible to separate her income and yours. I don't know if any of this would assist you in the future since she is still able to get around and I don't know your financial situation but I would advise that you look into it starting now so you would understand if you could make any changes to make it work for you. It is handled through your state and they must know that she is long term disabled. Best to you. Sherry

 

[Nighthawk]

I had heard Medicare would cover part of the costs of having someone taking care of you at home. I hadn't confirmed it, though.
But thanks for chiming in with that info.

It looks that the requirements for them providing such funds for this would be not having too much income.

 

[HelenL]

I would check into your state's disability programs… There may be a couple of different programs that are available to you which have some overlap to them, so you would need to see which one would benefit you the best. For instance, I qualify through MassHealth to get a PCA for certain number of hours per week. Right now I have 30 1/2 hours per week, and I just met with the nurse to see if I qualify for more hours as I need more care than I did originally. She has recommended me for 60+ hours a week, and am waiting approval for that. Another program is through Mass Rehab Commission, which would pay for a home health aide to come in a set number of hours per week. Since these programs have overlaps, you cannot use both of them. The good thing about my PCA program is that I hire my caregiver(s), and it gets paid for through the insurance.

 

[mytwoboys]

For what it's worth..... We also paid $20 per hour. Insurance paid for it in the beginning (about 5 months worth in 2009). In 2010, they declined and pretty much told us that his condition was about as bad as it was going to get without actually dying. They considered it "custodial care" and that was not part of the coverage. Nice. We then paid out of pocket for the remainder. We used up savings and I was looking into taking a hardship withdrawl from my 401k. Hospice started coming a couple times a week in mid-2009; that helped.

The biggest problem we faced other than the cost was the near complete unreliability of these people. They would call off because the sun wasn't shining or some other reason. One called off because it was very very cold that day and her car heater didn't work. I have heard similar stories from some others, but I have also heard good stories too. When it comes time, check them out carefully ! I thought I did.

 

[Nighthawk]

Wow!
What a stories of people being paid to take care of terminally ill patients but making things up to not show up.
Definitely, the best CALS, a PALS can count on and rely on is someone of his/her own family or his/her spouse if they have the necessary time to look after the patient, otherwise it's just a trial and error with hired people.

 

[lgelb]

No doubt family is often the ideal option. Not all of us (e.g. those whose PALS are not Medicare-eligible) have the economic freedom to give care 24/7. In some families, conflicting priorities such as other family illnesses, conflicts, small children, etc. may also rule that option out.

As I mentioned, we have good experiences with college students, but if we had lived in an area longer than we have lived here, I am sure friends, neighbors, et.al. would also be resources as they are for most of you. There are enough "good people" in most towns to make a difference for a single PALS. For those that have success with agencies, that is wonderful as well.

Anyone who has read this entire thread, and many others, knows that experiences vary and the point would be to use what you need to in the most effective way.

There are definitely two types of caregivers, and they can be found in hospitals, nursing homes and private homes in equally varied measure. Speaking now from broader health care experience, if you suspect someone is mean, dishonest, impaired or uncaring, don't hire that person. And it's never too late to fix a mistake. But you will also know who's good, whatever the pedigree, and you will find them if you cast a wide net.

 

[Ms. Pie]

My caregivers are more like friends and very reliable. It's purely custodial care as I am pretty low maintenance. So it's all out of pocket. But they also do housework which is nice!

 

[Barbie]

Miss Pie, our CNA won't do house work but she does fix dinner for the whole family 2 or 3 times a week! she is reliable and very kind!