Hold on Tight...

So a bit more on poop and Hospice:

Today the nurse saw Brian while I was at work. He reported 1-2 bowel movements per day with no chemical assistance. She wanted him to STILL take Miralax every day. She further stated that Miralax “is not a laxative”. She put this in writing to me.

The nurse’s stellar reasoning for this is that with ALS Brian’s stools should be “small and loose so he does not have difficulty moving them”. He is not having the least bit of difficulty moving them, in face it’s a bit too much the other way arguably since he went off morphine and went back to regular puréed food.

Oh, and yes a Miralax and it’s generic are very much laxatives that work by taking more water into the bowel.

She recommended Tucks for his hemroids, which was the only reasonable thing she said. Of course, we will not use a Miralax daily. At this point, that’s actually nuts.

At this point I’d rather not have this RN in my house. She’s incompetent.

So tell the agency this nurse is gone. Of course, Miralax is a laxative -- it's even in the name! You might also suggest she could use a pharmacology refresher.

That nurse must have had it confused with Mira-no-lax, available through black market pharmacies in the underworld.

In defense of the nurse ...... knowing Brian's past medical history and with lawsuits a rampant problem in the US, having him be able to PooP on a regular basis vs. any litigious action against the home health agency ....... just saying. I understand where they are coming from, and I also respect and understand your right to disregard their advice. Ahhhh - the American healthcare system where documentation and protecting yourself against litigation very likely will change the advice you give your patient vs. the advice you would give your mom. Lenore, you are a great patient advocate for Brian ........ shine on!!

The scariest parts to me however are that he IS pooping regularly and Miralax IS a laxative.

I think it’s incompetence and will have none of it.

Lenore I agree with you. Since you have it in writing from her, that is your best evidence that she needs further training. This makes it not a she said, she said situation. Take the note, scan, copy it and talk to the supervisor there. Offer to send a copy of the note and tell them she is no longer welcome in your home. IF they can’t agree to that, then boot the entire group and find a new one.

Hugs

Piling on late as I've been away working all week - totally agree she needs to go. Unfortunately we have to be vigilant about who is allowed to work with our PALS. I'm so glad she put that in writing, she handed you an excellent evidence for your case.

Regardless you have the right to say who will come in without evidence gathering.

A weird experience today with my own health and a really nice Dr. Who knew what she was doing.

My chest started buzzing today- hard. A really odd sensation that got more intense over a few hours. When my pulse started increasing and my ears started ringing I figured anxiety but decided to do urgent care to be on the safe side.

So, I walked in as a 53 year year old fat chick to the Urgent Care talking about fast heart rate and chest sensations. They moved mighty quick. A normal EMG and Ultrasound settled them down considerably. Then ironical they did a full neuro exam. Still all good.

Whole thing took about an hour and 45 minutes they moved so fast. The Dr then said it was anxiety and the buzzing was internal tremors (I had suspected both), thevear ringing from pulse- pounding anxiety. She asked me about my life and I told her, PALS husband, full time work, Mom in long term
Care.

She referred me to a therapist, wrote me an Rx for Ativan (more irony, Brian takes it too), and said “You are facing one of the worst things a human being can face, ALS is a complete nightmare. You need help for yourself, not just for him and around the house. Think about a Leave of absence”.

It put things in perspective for sure and the Ativan sure takes an an edge off. Now, I need to lower Brian’s bed, get him more water and just maybe go to bed. Life goes on.

Lenore, I'm glad it wasn't anything "physical," but sad that ALS is affecting you this way.

Brian won't be any better off if you crater -- "take care of yourself" (total cliché) in this case by figuring out what you haven't done that you want to do, however little sense it might make in print, or something non-Brianish that you are doing that you need to stop.

Best,
Laurie

Carer health is so underrated and yet so important.
It isn't a matter of how long you are a CALS, it is indeed the most stressful thing you will face. Then most of us as CALS seem to be juggling another 3, 4, 5 things as well. No wonder your body is saying "UM excuse me????"

Please do listen and give yourself some care this weekend, and maybe think about how you are going to sustain this my friend.

Lenore you were so wise to go to hospital. glad you met efficient and understanding doctor and that it turns out to be what you suspected to be anxiety and exhaustion.
Now that sentence "take care of yourself" that so far sounded mysterious to me makes sense when thinking of your ordeal.
I totally agree with Laurie that on top of taking the medicine that can help, treating yourself to something non-Brianish should be on the prescription.
relaxing vibes to you

Thank you all.

There is a tremendous freedom in just plainly saying to myself “a hideous thing happened to us, and it needs no coat of sugar”.

I think the thing I want to do is spend just 24 full hours out of the house. I am torn because a big part of me feels I should spend each possible minute with Brian. Yet I really really want to spend just one full overnight out of the house he got sick and is dying in.

Right you have identified this need, fantastic!
There is nothing to feel guilty about in this - do you think you are some machine? No you are a human being with all the feelings and needs that encompasses.

Now you know this, what needs to be put in place so you can do it. What will you do with your time away and what needs to be in place for Brian?

Lenore, having just been through this last month myself, I would suggest seeing about a longer term medication. Many here are on them, and I am now back on Celexa. For now I’m staying on a lower dose 10mg. Just saw the Dr today and she agreed I can stay there, but if I need more, don’t hesitate to call. These take a little time to ramp up (few weeks) but better than Ativan et al for the longer term.

I would definitely suggest the overnight away as well. I take those when I get the chance and they do wonderful things for our psyche. I have explained to my Brian that I need them in order to better help him. Yes it’s hard the first time, but it does get easier.

Hugs,

I feel the same need to get out of the house for longer than a few hours, Lenore. I left my job 2 years ago to care for my DH. So I've been "on call" for 24/7 for 2 years now. I do have an aide 2x a week for a few hours, but that often gets used for errands and I still have had the bulk of the care by myself.

I have finally arranged for a weekend away. DH's sister and her husband will be coming for the weekend at the end of September. I am using the weekend to go with my DD to visit my DS. I feel like my kids have not had even a single mom for so long. I can't tell you how much I am looking forward to being in a "normal world" for just one weekend.

I (selfishly) also want his family to see where he is at physically and how much help he really needs. This will be the first time one of them will help with his care. Since the start, they have only visited - when he is up, cleaned up, to the bathroom, fed, etc. I'm curious to see how this goes.

I love my DH and also want to spend quality time with him, but I'm burnt out. I am hoping to come back refreshed and more able to care for him as he deserves.

DO IT!!!!!