Old 03-30-2018, 11:15 AM #1 (permalink)
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Default Please, read. Advice needed. Out-of-pocket care options?

Hello,

Iím new to this forum. My mother was diagnosed with ALS in June of 2017. However, we believe her symptoms began a year or more prior. As you all know, it was devastating.

My father is her primary caregiver. The ALS Association assists us with a nurse aid for 10 hours per week. We also pay someone out of pocket to help on some days, to provide relief to my father. However, it is becoming increasingly difficult to care for my mother, as her symptoms continue to progress and she becomes easily frustrated (completely understandable) and very upset with us (my father, me and my brothers). She was a very active, fun woman Ė a flight attendant who traveled the world Ė and now she is bound to a chair and hospital bed. We use a Hoyer lift to transfer her from one place to another. Insurance does not provide additional aid for home health aide care.

Our house is handicap accessible. This was our only silver lining when we received my motherís diagnosis. My older brother was born severely handicapped. He is 37 years old with the capacity of a 6-month old infant. He cannot talk or walk. He has a feeding tube. He lives at home. We DO receive extensive home health aide and nursing assistance for my brother. However, my father remains his primary caregiver as well. Itís a lot.

We refuse to consider putting anyone in a facility.

My brothers and I are considering finding someone to pay out-of-pocket to help. I understand this is not ďdue-processĒ, but we are desperate. My father is retired, but his new life is clearly taking a toll on him. He is 67. We worry about him so much. He is a saint, but itís clearly not easy. My brothers and I all work full time jobs, and we visit our parentsí home regularly and help as much as we can. Does anyone have suggestions of what we can do going forward? Has anyone hired someone out-of-pocket? We would need to find someone who is physically strong, patient, and knowledgeable about ALS.

Thank you.
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Old 03-30-2018, 11:48 AM #2 (permalink)
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Default Re: Please, read. Advice needed. Out-of-pocket care options?

I am paying cash out of pocket for a nice lady who did health care for her mother before she passed. We are lucky she wants more experience and is working for $12 per hour.

She comes in daily for 2-3 hours and gets me out of bed and bathes me and light housekeeping.

She takes a load off my wife!
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Old 03-30-2018, 11:52 AM #3 (permalink)
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Default Re: Please, read. Advice needed. Out-of-pocket care options?

Dear Daughter,

First, I'm so very sorry to hear about your mom. She is very fortunate to have a family that is pulling together to help her and your disabled brother.

Second, I'm glad you found our Forum because there are people who spend hours each day helping caregivers and people with ALS.

I have a few suggestions. When I was diagnosed I lived alone. I had just remodeled my "retirement" condo and expected to retire in a couple of years. Well, my plan didn't work out so I had to go out on disability. Then, after consulting a few contractors I came to the realization that my condo wasn't large enough and couldn't be modified to work for me as time went on.

Now I'm in a large condo that has been made accessible.

I found a woman who will come to my place and cook meals, do laundry, and run errands for $12 an hour. Right now I only use her on an "as needed" basis but I've found two other women in this condo who will do just about anything for $15 an hour. I retired from a college so, when I need personal assistance for self care, I plan on seeing if the nursing program, CNA program, etc. has students who need real-life experience and a little cash to help. I've researched agencies in my area and they run around $21 an hour for help.

Another thing I did when I was first diagnosed is set up a "Lotsa Helping Hands" online group. If you Google it, you can see how easy it is to set up. Its purpose is to have friends and family join so, when a specific need arises, they can sign up to help. I sprained my ankle and couldn't drive for about 6 months in 2016 and the people on my Lotsa Helping Hands site drove me to doctors, picked up prescriptions, helped me move and kept in contact with me.

If your mother worked, is a member in a church or social group, etc. these are the people who probably want to help but don't know how to help.

A meal train is another wonderful idea that I organized when one of the men in my other condo was terminally ill. He lived with his wife who also had health issues. They had very little. We got a group of 7 of us and each one took turns cooking one large meal per week and delivered it to the family for their dinner. If you do this make sure the people know your mom, dad, and brother's dietary needs so they won't bring things the family cannot eat.

As your mom progresses it will be helpful to have these things in place.

Make sure more than one other person learns the Hoyer lift operation and BiPap operation. Get people involved.
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Old 03-30-2018, 11:53 AM #4 (permalink)
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Default Re: Please, read. Advice needed. Out-of-pocket care options?

I will be doing that very thing eventually and hiring full time at some point. I am not so big on their ALS knowledge as a willingness to learn, some patient care backgroundand just friendly and willing.
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Old 03-31-2018, 10:03 AM #5 (permalink)
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Default Re: Please, read. Advice needed. Out-of-pocket care options?

Yes, our part-time help was all out of pocket. As others have said, post locally, get the word out, including CNA/NAC programs, on social networks, etc. Don't worry about due process -- there isn't one. Find people who need the experience and in our case because most of our helpers were pre-nursing, many future recommendations for nursing school, jobs, internships that I continue whenever asked to this day.

You don't need ALS knowledge but you need compassion, competence and teachability. And of course always verify identity/honesty via Google, and online background checks if/as needed. I found that references were useless as other people seem to have different standards than I do. Don't be afraid to dismiss someone if it doesn't work out.

Best,
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Old 03-31-2018, 03:00 PM #6 (permalink)
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Default Re: Please, read. Advice needed. Out-of-pocket care options?

The lady who comes here was willing to learn all about ALS. She had cared for her husband who had died of cancer.

Unfortunately, she hurt her back dancing and she'll be unavailable until it heals. That' why everyone needs backup and backup to the backup. I can still cook and walk but I'm getting weaker. Once my brother goes back to NY for the Summer I'll get organized and start looking for more help.

You might want to give anyone applying this document to read so they understand ALS more. It's a work-in-progress and I'm adding specific dental care and PT care as time permits.
Attached Files
File Type: pdf Titus ALS Awareness Project.pdf (566.8 KB, 24 views)
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Old 04-05-2018, 02:03 PM #7 (permalink)
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Default Re: Please, read. Advice needed. Out-of-pocket care options?

I used care.com to find my caregiver (I still work). She comes three days a week. Family covers the fourth day and then I work from home on the fifth day. I recommend the website. I interviewed about 6 people and found 2 that I liked!

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Old 04-07-2018, 01:49 AM #8 (permalink)
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Default Re: Please, read. Advice needed. Out-of-pocket care options?

The biggest issue (as I understand it) is if you are paying someone "under the table" is that if they become injured helping your PALS and attempt to file some kind of claim, you could be liable (home owners insurance, etc.) &/or the care-giver would be liable for tax fraud if they do not intend to report the income. I think it is a risk worth taking, and I am soon going to make a move in that direction (personal pay - under the table paid caregiver). I agree that a willingness to learn, responsibility to show up as requested and generally amical demeaner mean much more than a certain skill set.
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