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Distinguished member
Feb 21, 2006
Hi All,
My husband (diagnosed of PBP and slowly progressing) is full-time stay home Dad & our family lives off my income. I'm trying to plan ahead to when full-time care may be required, but have some questions.

1. What are the range of costs for caregivers? (Not including medical equipment, doctors etc. I'm talking about day-to-day in-home care). We are located in Colorado, in case that makes a difference.

2. What are the typical qualifications of an in-home caregiver? Similar to "nurses aide" or are they usually actually LPNs or RNs?

3. I've read that the "healthy" spouse typically becomes the primary caregiver. Not sure how this can happen, since my husband is not eleigible for disability because his job has been as an (unpaid) excellent stay-home-dad for the past 8 years. Any one else have an exeprience like this? How do you provide care, plus continue to work? This is a big concern.

Any insight on these questions would be very helpful and might let me sleep better at night (but I doubt it :( ).

Thanks in advance,
I'm afraid I don't have much advice for you except:

1. your local ALS association and social worker affiliated with them should be able to give you some resources for care givers.

2. As an RN myself, I know that it probably won't matter what "degree" the caregiver has - what will be more important is if they are familiar with ALS specifically or are at least willing to be trained. A very good nursing assistant might suit your needs very well (and cost a lot less).

3. I've heard that it is very important to register with the ALS association AND Muscular Distrophy association. You might find resources from both of them.
Hi Lisa,

are you sure his not eligible for disability?

my partner is an artist and sort of stayed off the grid for several years before his diagnosis, but we will be getting some money.

it may not be much, but he should be entitled for something. your ALS association can help you navigate that.
I'm pretty sure he is not eligible for disability. After 20 years in the working world (since high school) and paying into social security, he quit work 8 years ago to stay home with kids. It is my understanding that for his age (44) you have to have worked at least 20 quarters (5 years) within the last 40 quarters (10 years) to be eligible for SSDI. He did some substitute teaching a few years back, but he is no where near 20 quarters.

He has EMG scheduled for Jan 30. If it still comes out clean, it means he is still very able bodied. We have discussed the possibility that he try to get a job. Since the PBP seems to be very slow in progression, maybe he will have 5 physically active years left, who knows? As long as it is a job that doesn't involve alot of talking.

What disability insurance is you partner covered by? If it is SSDI, he must have worked recently enough & long enough to be covered.

In any case, i will check with ALSA in case I missed something. It does not hurt to ask.

I read this post and thought I would pass along this information. When my aunt was diagnosed a dear friend suggested we contact United Cerebral Palsy. At first, I did not think they would be able to help us at all. However, to my surprise, they were able to put us in contact with local organizations that provide in home care at a cost that is according to what your household income is. It is very affordable! Those that come into the home are not LPN’s or RN’s but really there is not any need for that most of the time. If there is someone there to get meals, help with bathroom, light housekeeping, etc. this is very helpful. Anyway, just thought it may help someone out.
Hi Lisa,

This doesn't address your questions directly, but it backs up what others have said about caregiver qualifications, and may be helpful in the future.

Jen and I have found what so far, the local JC has been a good source
for attentive, conscientious caregivers. We contacted the coordinator for the local
junior college RT (Respiratory Therapist) program. She surveys her
students for those interested in this kind of job, and we conduct
interviews. Unfortunately, we have to repeat the process on a yearly
basis, but it is a win-win situation. We get a health care student
eager to learn about trachs and ventilators, and the student learns about
things their classmates will may never learn. They leave our home with an understanding of disability that can't be learned in a classroom.

Hi Lisa -

We pay our caregiver $12.00 per hour and this represents a 32% increase over her previous job. She is a CNA with experience with trachs and vents. We pay all of her taxes and insurance (not healthcare insurance, unfortunately), which runs us another $1500 or so.

Most people are paid under the table - but then you cannot deduct it on your income taxes and he/she is "off the grid" when it comes to social security. We did not want to disadvantage anyone in that way - even if it were ok with them.

My PALS is a very high level RN and highly knowledgable. Her take is that anyone can do the work if trained properly. No need whatsoever for an RN or LPN.

Now that I am 3 years into this care journey I agree with that.

As far as caring and working - I cannot see how you could do that for long, although someone in our support group did it for years. She had someone during the day and on weekend days and she handled evenings and nights herself. She managed fine because her father also helped her out.

I am not sure how you could do it completely alone.

I do not work and I care for my friend full time. In the last 2 months we hired a caregiver for 40 hours a week because we are anticipating Pat getting a trach/vent in the next few months and I wanted to secure this particular person's services.

Even though I do not work at all, I still needed services because I had to shop, go to the doctor and other errands. Could not leave Pat alone.

If you are truly the only caregiver I am not sure how that would work.

There are some people I have heard about who had their spouses set them up in a recliner with their lunch nearby, their computer and phone at hand and left them til the spouse returned from work. Guess it depends on the situation.

Many of the people in my support group are able to get help from church members, neighbors, relatives, etc. They say people are very helpful and want to contribute when they know the situation. The problem can be in accepting the help, especially when it comes to personal care.

By the way - I live outside of Chicago - where wages are generally good. Still - personal care workers are generally paid terribly, and are very willing to work in a situation where they only have one patient, even if the care load is substantial.

Good luck - Beth
I see this is an old question but others may still need the same answer.

In setting up caregivers you might look at this site. I have not used it but someone in our support group has.

As far as SSD my husband did not work from 99 to 2005 then had wages for some parttime work in 2005 - $8000 and 2006- $3000 he had enough if we had disabilty before sept 2006 which he did because it took 2 yrs to diagnosed in 2007. What I am saying is if he can still work parttime you might go ahead so at least it will show quarters worked less income might lessen the amount pd to him but some and medicare is better than none.
I always thought that SSDI was granted to disabled folks regardless of earnings. Maybe I am confused but I thought Social Security had the work reguirement. I seem to remember families where a disabled child got SSDI. Am I mixed up? Cindy

COlisa is correct in her calculations. And yes a child does get a benefit, but only if the parent meets the qualifications.

This is why I wish we had a separate thingy for Disability, etc...
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