23yr old CALS need advice work/life balance

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Michie888

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Hi all, my name is Michelle and I recently started working during this pandemic as a caregiver (I just graduated from college but couldn't get a job in my intended field because of the lock downs).
My main client was diagnosed with ALS in July, and I am in the process of moving in with her for more 24 hour care. I wasn't planning on staying in this city except to wait out COVID, but I've grown quite fond of this client and I can't leave her. She doesn't have any family willing to help her.
She is still able to speak and eat well, but can no longer stand or move her fingers/toes. She transfers from hospital bed to power chair with a Hoyer, and we just got a sliding bench for the shower. We are trying to get her body on a schedule so I can lift her onto the commode at certain times of the day (before or after my other client's).
She is able to urinate into a pad and then drop said pad into a bucket, but bowel movements are very traumatic for her. She is very embarrassed and frustrated. She is also having sensitivity issues on her bottom from times when I wasn't available and she had a bowel movement in her chair and had to sit in it until I could get to her. It is painful for her when I clean her.
Do you have any advice for someone in my situation? I'm currently working from 7am-9pm, 7 days a week. I'm not sure I can maintain this for very long. It feels like I'm running as fast as I can just to say in the same place.
 

Nuts

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Hi Michelle. Being an primary ALS caregiver is exhausting. Your client is fortunate to have you, but you are going to need other caregivers to give you a break. She MUST get other help. If you read through old threads you'll see that spouses become completely exhausted and often compromise their own health. This is hard enough when caring for the love of your life--I don't know if I could have done it for anyone else. She simply cannot sit in her own feces. That tender bottom will because a mess of open sores--and you really don't want that. She needs someone else to be available when you are not.
 

lgelb

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Am I understanding that you are moving in and she will be your only client? Or that you will still try to have others? As Becky states, the latter isn't going to work.
 

ReginaS

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Obviously your ALS client needs you and other caregivers. As others here already stated - be very careful. If you decide to become the main caregiver you will need other people. And even then it will be a very demanding task. You will burn out if you try to do this alone - and also if you put yourself into the position to have to do the night shifts. 24 hour care is hard to impossible. Depending how her ALS develops your night sleep will be so interrupted that you don't feel like yourself any longer. Try to find a balance that you will be able to maintain - which is hard to impossible, as nobody can know how exactly her ALS will go and what she will need. It won't be less than she needs now and most likely significantly more, like 3-4 times more.

I don't know anybody who would not have tender feelings about needing help going to the bathroom or getting cleaned up. If I may give you advice, don't do this alone. For someone in her situation unfortunately it is the new normal. If you do too much it is all too likely that resentments will develop over time for being needed all the time. That is normal. If these get too strong you won't be able to do the care that you intend to give and that the woman deserves.
Much luck in all of this and she is glad to have found you.
 

ARCG

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Hi Michelle,

A couple of things that could help. If she can still transfer to a commode chair that goes over the toilet (we use the shower buddy system, which is wonderful, but there are other less expensive commode chairs), I suggest getting a bidet for her toilet. My pals loves it and wishes we had installed one even before he was ill. It is great for keeping him clean. You could move her to there even If she has an accident before she can make it to the toilet and let it clean her, much less irritating than manual cleaning. Having said that, I second the folks who say she will need more help, it is a very exhausting, if not impossible, job for one person. She can contact her local clinic for suggestions, there are sometimes volunteers in certain cities that can help, or they can suggest other avenues to pursue.
 
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