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Caregivers’ Morning

If it has been an uninterrupted night of sleep, first thought is of thanks for the rest. The second thought is, “why? Are they ok?” Followed by relief when they look to see we are resting.

Then begins the torrent of thoughts, and I do mean a torrent. Is the Hoyer lift charged? When did I charge it last? I got some good sleep, but I’m still tired.

Ok, out of bed, onto the chair. How about a drink of water to ease that dry throat? Not yet, you have to pee, OK.

While you move to the living room, I’ll make the bed and go to the bathroom myself. While on the toilet, my mind is racing from everything; meds, coffee breakfast, lunch, dinner, appointments, grocery shopping, laundry…

Ok, do you need anything? Cough assist, you have phlegm in your throat? Back to the bedroom.

Coffee now? Let me fix it in your giraffe cup. Think about breakfast, while I prepare your coffee.

The torrent of thoughts continues internally…

 Prepare meds for the week

 Check on next medical appointment

 Look at budget

 Add to the list of things that need doing

 Laundry (again)

 The yard

 The kids (if there any & all their needs) A-Z

 At the end of most lists are the caregivers needs & health, rarely met

This is just the morning, imagine the rest of the day, week, months, and years.

Do you know a caregiver? If so, please don’t expect them to:

1. Host you, you should always visit with the intent to help.

2. Check in on them, as often as your life allows, they are busy keeping a mutual loved one alive.

3. Don’t ask how their loved one is, ask how “they” are, remember there is no cure or improvement with ALS.

4. Most importantly, offer to let them take a break, by visiting with the inent to learn what they do.

In many instances the caregivers will resist relinquishing their role. Convince both the caregiver and person with ALS, that it’s healthy for them.

What I have described is an amalgamation of personal experience and observations from the community. Additionally, it does not describe the added care required for a person with ALS who has a tracheostomy, or is experiencing FTD. There is nothing I can share that would do justice to that experience.

Honestly this applies to anyone caring full time for a family member with any condition.

Be Aware

Be Available

Be willing

Be Present

Be There


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Dec 27, 2023

This was so informative and helpful. It is particularly telling as I think of all the work my husband & daughters do for me!!

Thank you Juan.


Juan, you were spot on... thank you for posting this!


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