To those who are trached

[Tall John]

UCSF tells me the annual cost for care etc. is $200,000. Can some of you give me real numbers ? Send me a private message if you don't want it public.

 

[joelc]

I wish I could make that kind of money! LOL.

Realistically, if you have a spouse that can help then it is between $0.00 and up to $30,000.00 for a full time caregiver. There are all kinds of creative things you can do to keep the costs down.

Example: If you have a spare bedroom you can offer room & board to someone for very little. I was contacted by many Philippino caregivers (highly trained) that wanted to get into Canada. They are exceptional caregivers I might add.

 

[BethU]

I interviewed a 24/7 caregiver who had been caring for another PALS who had just passed away, and the caregiver wanted room and board plus $40,000 to $50,000 a year. She expected room and board but did not consider it to be part of her renumeration. Also, she did not drive (this is LA !) and expected me to come up with transportation for her to the grocery store, etc. I told her part of her duties would be transporting my husband and me to appointments, etc. She was insulted by what I offered and I was aghast at what she expected. (Oh, she also wanted weekends off, but said she didn't have any family or friends in the area, so she'd be hanging around the house, doing nothing.)

Through an agency in LA, the cost of 24/7 care is upwards of $60,000 a year, standard rates. I assume that you also provide room and board. You kinda have to provide room and board if someone's going to be there 24 hours a day, unless you make them sleep in their car.

My husband and I will have to have 24/7 care to go on hospice ... it's a requirement ... and I'm not sure how I'm going to swing it. In California (I think the whole state) you have to have special licensing/training to be able to help patients with PEG feedings. That costs more than just a health aide. The $60K I was quoted was for a health aide. In our case, they will be taking care of two of us, both of us soon needing a LOT of hands-on care.

Two miles from us is an excellent junior college with a well-regarded nursing program. I hope that room and board and time for studying plus a modest salary might get us some good candidates.from the program. I envision having up to three caretakers

 

[joelc]

Not to step on your toes Beth but things must be different in Canada. What I was told and what I ended up doing were 2 different things. I was told I could not go home unless........... well I was not in prison so I got up and went home. They also told me I had to hire a qualified nurse at ridiculous rates - I did not do that either. We train ordinary people ourselves, anyone with a caregivers heart can easily be trained. We do not have facilities for a live in caregiver but if we did there is the possibility to find someone for under $20k. Going through an agency is very expensive and not necessary. (So I have found out)

 

[BarryG]

Why on earth would you need special training and license to help someone with peg feedings? I mean it is dead simple, kink tube, uncap tube, insert syringe barrel, pour in water, pour in formula, pour in water, kink tube, remove syringe barrel, and cap the tube. There is your special training and here is your license. Sometimes the bureaucrats and their rules and regulations are just so much bull.

I was told by an ALS society manager that I shouldn't even think about a trache because there is no way that I would be able to find anyone to care for me and even if I did find someone I wouldn't be able to afford it. I believe that she has seen too many PALS for my own good, thanks for the equipment but no thanks for the advice.

Beth, I hope that you can find some kind of care that works for you both. I agree with Joel, informal is usually better and almost always cheaper.

 

[BethU]

You can step on my toes any time, Joel. Things are not that different here than in Canada. You cannot be kept in a hospital against your will, and can leave at any time. (I "discharged" myself from one hospital a few years back after angioplasty when it just got too boring lying around.)

Barry, the "training" for a PEG is not the issue. It's the lawyers and the insurance companies (same thing, basically) not the doctors who determine this. I assume that laywers fear that it's easier for a careless caregiver to screw up meds or supplements if they are putting stuff directly into the stomach.

I first wanted my every-other-week housekeeper to become a caregiver, despite the fact that neither one of us speaks English (but at least I still understand it, and she's learning quickly), but my long-term-care insurance wouldn't buy it. I've been shelling out premiums on the LTC policy for over 10 years, and it pays fairly generously for a "licensed" caregiver, which means an agency. I can't afford to hire someone 24/7 without the LTC policy.

It sounds wonderful to be able to interview lots and lots of nice people off the street who will be willing to sleep in your garage and devote all their waking hours to your care, but I simply don't have the energy for that. It is draining for me to "speak" with the DynaVox for any length of time and I simply don't have the energy, resources, or ambition to do background checks, follow up on references, etc. Plus, the major issue of money. If I go with a licensed caregiver, my LTC policy will pay. If I don't, they won't. A no-brainer.

My situation is complicated by the fact that my husband needs much more care than I do at this point. (I'm sure I will catch up with him soon, but so far, I can still manage his care during the mornings.) He is incontinent, is developing bed sores, has dementia, his Parkinson's is progressing, he refuses to eat or have a PEG, has renal failure. You name it, his is a high-intensity care situation. I've called 911 twice in the last two months, the second time this last week when I couldn't wake him up.

Finding someone unlicensed willing to sleep in the garage (or somewhere ... maybe a tent in the back yard?) whom I can "train" to care for both of us 24/7 is probably more of a challenge in LA than in Canada. Groucho said, "I wouldn't want to join a club that would accept me." In my case, I wouldn't want to hire someone who would be willing to work under those conditions ! :lol:

I am enormously lucky to have found someone my LTC policy will cover who is able to give us afternoons and evenings, and is willing to do the s*** work involved.

When it's time for a vent, Joel, my husband and I will be headed to your place so your wife and kids can take care of us, too! You've got a winner there. God bless the caregivers of this world!

To me, "living with ALS" is all about logistics. It's not an emotional issue (well, of course it is a highly emotional issue too). But I don't see it as craven quitters vs. brave souls who soldier on; it's all about "how can I best manage my own health challenge and still fulfill my duties as caregiver to another?"

It's an individual, very complicated issue for each of us. Everyone has to find the best answer for their situation.

 

[joelc]

Beth, I totally understand and appreciate your situation. I have nothing but the most respect for you and what challenges you face each day. With your LTD it is indeed a no-brainer to go with an agency. I don't have any LTD and my spouse is healthy so my situation is very different.

I agree, and have stated it myself, that it is an individual decision that is influenced by many factors. I respect everyones right to make the decision that is right for their circumstances.

The only point I try to make is do it with all the information a person can have. I have seen too many people make uninformed decisions. There is a way to much mis-information out there.

 

[BethU]

I think we're all on the same page. I am grateful that you continue to give such good counsel about vents and other options. It's important for all PALS and CALS to have as much accurate information as possible.

 

[Tall John]

Anyone else ?

How about quadbliss or someone else ?

 

[krhodes]

Hello, I am new here. My 68 year old mom was diagnosed with ALS in 6/08, got a feeding tube in 8/08 and was trached in 2/09. She is in a wheelchair and cannot communicate well at all. My dad provides all of her care with some help from his 3 daughters. The hospital taught us all everything we needed to know to care for her at home and it is really not that hard to learn. My dad manages pretty well except that he is tired all the time. So, I guess in answer to your question, the actual caregiving is costing them 0, but the medical supplies required for her care are numerous and expensive (not anywhere near $200K though). Kim

 

[nspoc]

Hi -

I have cared for Pat on a vent at home since Aug., 2008. We have a nurses' assistant who works full time ($14.00/hour for 40 hours per week). She is very competent at all vent tasks and can handle emergencies. Her medical knowledge is muddled, so occasionally we go round and round, but ultimately she is quite safe.

We also use an agency for fill-in care. That has turned out to be an outrageous cost! In Illinois an agency must use an LPN or RN if PEG's, vents or trachs are involved. We pay $52.50/hour for an LPN and that involves a 30% discount because we pay 4 weeks in advance. You do the math - without the discount it comes to over $650,000 if you have round the clock care. We just use her 10 hours per week.

We can train anyone we want in Pat's care, there is no restriction on a private employment arrangement. The restrictions apply to agency hiring arrangements. Our problem was connecting with willing individuals who could be taught.

As far as live-in care, in our area it seems to run $140/day, plus room and board. They are expected to have their own transportation. It is customary to have 2 days off. That would not involve a nurse or LPN.

Hope these figures have been helpful - Beth

PS- I care for Pat all night, on weekends and Holidays. It is not overwhelming in the least. We have a good routine and I am able to cook, clean, do laundry and other tasks as well as care for Pat on the days I am alone with her. I just cannot leave the house, I do not even go to the mailbox to get my mail.