Grief/ Crying/ Can't Breathe

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Katalin

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Sadly, my sister passed away last week, and the family is gutted. She was a bright light, and we miss her terribly. My 87 year old Mum is grieving hard. Yesterday she was crying with full abandon, and suddenly felt she couldn't breathe. I've read here before that PALS can have spasms, and that they have to relax to breathe again. So I got her upright in the bed, told her to relax, try to stop crying, and relax, and quickly she got her breath again. Thankfully the forum has helped with that. I wouldn't have known otherwise.

She says it's the first time, but the last few days, she's been asking for windows to be opened, and wants a fan blowing her way. Ironically, it was the last thing my dear sister asked for, was a fan blowing on her, only a few hours before her passing.

We're not scheduled for the ALS clinic till February, but this loss seems to have weakened her, just in the last week. We're pretty sure she won't make the funeral this week...it's a 30 minute drive one way, and she wants to just see her at a visitation. I think she's not strong enough to do the trip two days in a row. She doesn't either. AND we're moving into a new apartment in my building on Monday. Feeling very overwhelmed, but really worried about that breathing spasm. Is this the start of something new?
 

lgelb

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First, I'm very sorry about your sister, Kathy.

Your mom, it is too soon to know if the breathing is going downhill or if the spasms were brought on by being keyed up and grieving, especially if while she was crying, she breathed more often or more deeply than her muscles or lungs can handle. All you can do is be prepared and monitor her. If she wanted, her PCP could write her a script to help her sleep.

I hope she has a good while longer with all of you.

Best,
Laurie
 

Katalin

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Thanks, Laurie, for your condolences. What you're saying is reassuring. Let's hope it was just a reaction to crying. She was definitely sobbing heavily, taking massive breaths. As for sleeping, she takes melatonin, and just this summer got off of sleeping meds, which was really hard for her. She hasn't been sleeping well this last week. What's the general thinking on sleeping meds for PALS?
 

lgelb

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The tradeoff with many sleep meds is the muscles that support breathing relaxing to the extent that breathing becomes more difficult, so they could speed progression or CO2 retention (and these are related, of course). Still, many PALS use them. My husband did not, so I can't speak as well to the benefit side of the equation as well as others.

There are many strategies, as you will have read here, for sleeping better, from humidity to temperature and body position (+ BiPAP when the need begins). But in grief, some people need extra help, though of course just talking if/as they can helps too.
 

Clearwater AL

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Katalin, maybe you can call her PCP and ask if he/she could write a script for a
BiPAP soon (ASAP) rather than waiting until Clinic this February.

Did your sister have one that could be used?

Edit: To Laurie's reply below... I missed that her sister passed from cancer.
I was thinking her PCP could get her a Pulmonary appointment sooner... if
not through her diagnosis process a Pulmonary had already been done.
 
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lgelb

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Al, most cancer patients don't have BiPAPs. And the reason I didn't bring that up specifically now is because heavy crying (in re potential choking) and possibly going back on sleep meds (respiratory depression potential) would be counterproductive to a BiPAP trial until stabilized.

Needless to say, Medicare will not reimburse for BiPAP equipment supplies, masks, repair, RT care, etc. until pulmonary function or ABG testing hits that threshold. That wouldn't matter for those us who are DIY in re PAP, but Kathy has a lot to deal with right now.
 

affected

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So sorry Katalin - if this was a laryngospasm, which is what it sounds very much like, it isn't related to breathing, but to the larynx. It doesn't really mean much at all in terms of is she near the end. They were one of my husbands really early symptoms, we just didn't know what they were.

I do agree that this grief could take a lot out of your mum. Really sad, but grief is horrible at the best of times, grieving over the loss of your own child when you are just diagnosed with ALS is really a LOT.

I do agree that getting a full breathing test and see about getting bipap is a great strategy. Mostly just now, it will probably be a matter of responding to your mum's needs as a grieving person. Letting her grieve, grieving with her, and letting her call what she is up to what she is not. This will mean the very most to her xx
 

wishmobbing

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Katalin, I'm very sorry for the loss of your sister and all the stress your family is put through.
Everything breathing related here sounds like good advice. Just one question? Aren't panic attacks too a possible trigger for the feeling not to get any air? Especially with being this distraught and the hyperventilating while crying? Just hoping her breathing is still good and the panic will subside soon.
Lots of good thoughts coming your way!
 

affected

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Good point Wish!
 

Katalin

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Thanks to ALL for your great thoughts. I've got my dear ALS Society manager coming on Wednesday. She may have some suggestions...she's a nurse, and can maybe assess better how to get that biPap moving and convince her that she needs it earlier. Better than waiting till February. She has had the baseline testing done at the clinic already, and as soon as we can convince her if/ that she needs it, we can get it in place. She's stubborn.

She's never been prone to panic attacks before, I think it was physically the deep crying that must have caused a spasm. She hauled herself out of the episode in a minute or so after I told her to calm herself and stop crying immediately. So it sounds like a laryngo (?) spasm that was resolved by relaxing. Let's hope she doesn't have more anytime soon. The visitation will be a hard one for her. I've gotten good at crying in elevators, at stop lights, every time someone looks at me sympathetically, and just about anywhere. It must be just x10 harder for Mum. Thanks again for condolences and advice. It's so good to know I can pass things by you all, with all your experience and knowledge.

Kathy
 

KateEmerson

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Kathy, I am so sorry for your loss of your sister. Hoping for strength and comfort for you and your Mom, Kate
 

KimT

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Kathy,

I'm so sorry for your family's loss and that your mom has had to cope with it. You got some good advice.
 

affected

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Katalin I just want to mention this.

While I completely agree and advocate that early bipap is wisdom, the decision does belong to your mum and she may not want it. PALS don't always make strategy choices that we want them to, or that we think are the best idea.

My husband for example never had a bipap. He was rapid progression and had FTD (the dementia that often accompanies ALS). I would have chosen for him to use bipap from quite early (his first tests showed only 30% muscles for breathing were working).

However I advocated for what he wanted. I researched and presented him with information. He couldn't really weigh up complex information at all, so how much understanding he had is debatable. But it was his body, his life, and his death. I wasn't going to make better choices that would have saved his life. Had I prolonged his life, he would have been even more angry because his right to choose was taken away.

I'm not saying this is how it is with your situation, I just felt it worth saying when I saw you say 'as soon as you can convince her'. Many PALS do not choose feeding tubes, bipap and invasive ventilation. As hard as it was to watch my husband, I know I advocated for what he wanted and he passed away peacefully at home on his terms.
 

Katalin

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Tillie, thanks for that great advice. I agree 100%, and to date, have never pushed her to do anything. Even if she decides against biPap, or feeding tube, I'll support her. I guess I just hope the ALS society friend can explain it better, so she's making an informed decision. At this point, she should be using the hoyer for ever transfer. She still likes to do an occasional board transfer, just for sport (hair raising). She knows the consequences if she finds she fails. It's 911 and a trip in the van with the light on top. I can't force her to do anything, nor do I want to. I figure when you hit the grand age of 87, you're allowed to do/ eat/ say whatever you darn well please.

Your husband had a grand advocate in you. And I agree that even with diminished capacity, a person can make their own decisions. You knew what he wanted and facilitated that. I want to do the same.

Kathy
 

affected

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Beautiful way to show love - not easy!

We had some shocking falls and broken bones and all this hastened his progression. He was terrified of the hospitals, but would not listen to anyone.

I hope they can get good advice about these strategies through. It's all about quality of life and that is a very different thing for each person isn't it? You are doing great already, and we are right behind you.
 
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