Game Changer

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Lkaibel

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I am beginning to think Brian is going to go a LOT further with this than we previous thought/planned. That is great news in a lot of ways, but also a game changer.

Since things at home have thus far been a lot easier to modify than I had thought earlier on, and I am confident we can keep getting that part dealt with, including motorized wheelchair/ used van (once he fully realizes we need those things...) My greatest concern at the moment is home care.

We are not even close (well, as we speak, anyway as we know that could all change ASAP) to needing 24/7 care right at this moment. It's not easy but even working full time I can meet Brian's needs.

However, I realize that will change. I am thinking a private hire when that time comes. I have done the work myself back in the day, first as a CNA, then as an LPN. I know the home care agencies have a 100% markup - as in if the carer makes $15.00 they get $30.00 an hour. Between that and the quality of staff I have seen, thanks but no thanks to agencies.

Aside from the obvious of background and reference checks, I am wondering if people here with experience in private hires might have some words of wisdom?

I would actually be open to a lot of different arrangements, including live out and live in, live in weekdays only, etc. I do know I will continue to work at my job. For one thing, Brian has informed me firmly he would never have it any other way. He said my job is a good one and something he wants me to have when he is gone.
 

gooseberry

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Lenore, You are in a perfect place to get someone in and trained. This could give you a bit of respite or a bit of time for you. As the tasks needing to be done get more involved, you could transfer some of those duties to this person to save your body.

I worked fulltime thru Steve's illness. However, the last year I had incredible anxiety and worry every day. I worried about if he had fallen, what I would find when I opened the door, etc. It was more than I could stand. I ended up with a full cardiac workup and talks of surgery only to be told it was stress.

If you have the ability to bring someone in and train them, please do so. Your self care matters just as much as Brians care.
 

azgirl

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My husband sold his business to stay home and care for me and we quickly found out it made us both miserable. He went back to work and we hired two amazing caregivers. We found the first by recommendation of friends. So ask all your friends first.

The second we found thru local alsa.she had worked for a nother als patient who recently passed.perfeçt fit siñce she knew all the equipment and uñderstands progression "

It makes my husband and I much happier together
 

Lkaibel

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Great suggestions thanks you both. Yes Gooseberry I do fear your scenario. I think to start Brian might be okay for someone who saw him at lunchtime at least 2-3 days a week. Get him use to the idea.
 

affected

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Lenore it can work really well too if that person starts by doing things around the house to help you out, more than personal care. You know someone is checking on Brian, they can give him a hand with anything he needs, and when you get home there is less for you to do and you can spend time with him instead of racing madly into all the things that need to be done.

It can be far less threatening for Brian to accept someone comes in and does a bit of cleaning, washing or meal prep to help you out. They get a chance to build a bit of a relationship too before the person has to be too hands on with him.

And don't discount the real value for you in having help as CALS do become everything as they take over much of what their PALS used to do, keep doing what you always did, and become a carer on top!
 

Lkaibel

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Yes nights like this, where I am waiting for my mom to get her hair colored and then going home to do Brian’s shower and also need to do cat boxes... Made breakfast, made lunch ahead of course, and will need to figure out dinner. Happy Sunday to me!
 

KimT

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Lenore,

I started last Summer with a lady who comes in on Tuesday from 12:30 until 4:30. She usually leaves early because everything is done. She makes chili for Fred and makes two crock pot meals for me that I can eat or freeze. She does my bedding and wipes down the kitchen and door handles. She also runs errands. For Thanksgiving instead of coming on Tuesday I sent her to Whole Foods which is about an hour away. She picked up my cooked turkey and ham and delivered them to me. I also have a cleaning service that comes every other Wednesday but that isn't new.

The fine motor skills in my hands are slowly going so I'm going to train her on my finances. I know her well and my close friend has known her for years. Since I have no relatives around, this will be necessary if I plan on staying in my condo after I need assistance. I found another lady in my building who has done home health care but I'm still getting to know her. I will probably hire from an agency to do bathing, etc. I don't know what course the disease will take but I'm trying to have several plans on the table for each scenario.

If I had a CALS, I would be doing the same thing because full-time solo caregiving, especially in slow progression, could kill the CALS before the PALS goes. Just my two cents. Take care of yourself.
 

lgelb

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One thing I'd say, focus on getting the right people, and the logistics more likely fall into place. The right people may well be able to refer more, and swap hours with each other when needed. As others say, right-size what Brian needs for now and you'll be in position to ramp up later.

Obviously live-in would afford more flexibility but might affect you as a couple, so something to think about.

We only used part-time students a few hours most days as Sean and/or I was always there -- they were extra hands and social interaction as well as massage, ROM, feeding, etc. It has been three years now (very hard to believe) and many of them still interact with us, I still write recommendations and several have said that the experience was a catalyst for career decisions, so I am able to know that we made a difference bidirectionally. But that doesn't need to be your goal -- just putting it out there.

We did try one of the ALSA's picks and found him scary bad, FWIW. Due diligence is always necessary, as in hiring anyone.
 
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