Lizpza's post

[lizpza]

I need some advise please. My mom was diagnosed 6 years ago with MND - Bubar Palsy type. She is in the end stages, it seems.

I just would like to ask others who have witnessed a loved one at the end as to how much longer we may expect this suffering to go on. She was admitted to a facility to assist us with end of live care but the Dr said today that her lungs are full of water and she has dangerously low sodium level (114). She is very anxious and has very severe panic attacks, which I now understand might be the drowning symptom.

This is very hard to watch and as hard as it is, we want this suffering to be over for her. I do understand that every person is different but any idea how long we might anticipate this carrying on for???? please any advise or suggestions would be appreciated.

 

[ShiftKicker]

Mod note: moved post to own thread.

Welcome lizpza. I am sorry you find yourself here. This is a good group of people who understand what you are going through and can provide information and support.

 

[KarenNWendyn]

Hi Lizpa,

I’m so sorry you and your mom are dealing with this. It sounds like your mom has pulmonary edema along with the dangerously low sodium. This is a pre-terminal situation.

You have a couple options here depending on how aggressive you and your mom want to be. If your mom is ready to let go, she could request morphine for comfort and air hunger and will probably go peacefully within the next 1-4 days. Otherwise with very aggressive management to medically remove fluid from her lungs, she could last a little longer but it is hard to say how much longer. It definitely requires discussion between you, your mom, her doctors, and other family members, unless you have already had that discussion previously.

 

[lizpza]

Thank you so much for your reply.

I have suggested Morphine for mom to feel comfortable but they didn't acknowledge or act on my request. They are only giving her ativan and rivotril to help deal with the "drowning" panic attacks that she is having.

She keeps telling me no more and that she wants to move on a is looking forward to seeing my Dad again........*heartbreaking*
The medical team are still wanting to do physio therapy to try and clear the lungs but Mom really doesn't want this.

I have a meeting with the medical team tomorrow and will address the morphine but could you explain the air hunger?

They kept her off her cPap ( connected with oxygen) machine for 2 hours today and her sats dropped from 96% to 90%. Then they put her back on it even though I asked for them to just giver her something to relax her so that she would be okay.

This emotional rollercoaster is horrible, I hate saying "goodbye" to her every day.

 

[KarenNWendyn]

Oh my, I’m so sorry to hear this. Morphine, not Ativan, is the drug of choice for pulmonary edema with air hunger. “Air hunger” refers to struggling to breath, because the person cannot get enough air. The breathing is often rapid. Morphine relaxes the smooth muscle in the airways and slows the respiratory rate, which also calms the anxiety significantly. If the doctors are not on board with your mom wanting to let go, they may be reluctant to give Morphine out of fear that it will hasten her demise by slowing her respiratory rate. Doctors are trained to try to save people and don’t always know when it’s time to promote a peaceful passing.

I’m glad you are meeting with the doctors tomorrow. Make your mom’s wishes clear and request Morphine. If they resist, ask for a palliative care consult or a meeting with the hospital’s ethics committee.

 

[lgelb]

I don't understand why they would take her off PAP (assume you are talking about BiPAP, not CPAP?) at all, if the goal is comfort. Apart from her sats dropping, she will feel better staying on it.

Also, you should be aware that depending on the person and flow level, adding oxygen to the air flow can actually prolong her life.

I'm sorry you are going through this -- as Karen says, make crystal clear to the team that you and your mom are at peace with her passing, that you view this as the end of life, and they can assist. Meanwhile, you can help your mom transition with familiar comforts, such as music, scents, holding her hand, old movies, photos, special visitors, etc.

Best,
Laurie

 

[lizpza]

Thank you for your messages.

I met with the medical team today and they are not happy at all to assist with Morphine.

I have asked the hospice to go and visit her tomorrow and give me suggestions on how best to move forward.

You mentioned pre-terminal and they are also saying that they don't believe she is terminal. What is the terminal stage of the disease and how long would she be in the pre stage and then how long in the terminal stage?

If she is saying that she prays every night to not wake up in the Morning, should they not take these wishes into account.

They have already ignored her express wish not to be peg feed and have inserted a catheter without consent.

I feel so lost.......

 

[lgelb]

Lizpza, I have to admit I don't know much about end-of-life care in South Africa. Here, if a patient was ready to leave us, we could find a way. And here, if someone is competent, procedures are not supposed to occur without consent. I would think whatever the "rules," you can find a director to appeal to? Is there a "death with dignity" group/palliative care association/practice in your area?

Her wishes from a moral perspective certainly count more than anyone's, and that is the message I would try to convey, as it is the most universal across our cultures. There may be a document she can sign, an attestation to those wishes, e.g. that she does not want to be fed artificially.

 

[KarenNWendyn]

The hospice evaluation should help a lot. It is hard for me (and others) to give you exact answers as to how much time your mom has left without the luxury of examining her. What I said the other day was just a guess based on your description. The doctors who are seeing her may have a very different take on her prognosis. Also, I’m not familiar with the medical system in South Africa. So I’m not really comfortable giving you more specifics on terminal/ preterminal. Suffice it to say that fluid in the lungs and a sodium of under 120 is a poor prognosis. Hospice is a great idea, and just make sure everyone involved knows your mom’s wishes. Best of luck.

 

[lizpza]

Thank you so much, I really appreciate any advice.

Let's see what today brings , I will update you later x

 

[lizpza]

So an update and maybe a little further assistance can be offered, please.

We got mom moved from the day clinic back to the nursing home with a promise from Hospice to assist her and take care of her needs.

I spent a good few hours with her yesterday, but although she is in a semi-comatose state she doesn't seem to be resting. I paid particular attention to her breathing and it seems that this might be responsible for most of the problems. She starts off breathing very shallow and quick and then as she starts to relax the breathes become slightly deeper and further apart. She maybe takes 10 breaths like this then starts moaning and waking up. I think she now has elevated carbon dioxide levels but when I tell the hospice this they seem unsure what to do.

I previous experience what help/assistance is given to keep patients calm and comfortable while this is happening.

 

[lizpza]

It is now evident that she has respiratory acidosis. I have asked if there is anymore they can do to assist in being more comfortable.

They just don't seem to be coming back to me......can anyone k here perhaps offer some suggestions? Is the end close or are we going to experience this horrible stage for months on end.

 

[affected]

I'm so sorry.

Normally medications like clonazepam and morphine are given to ease these symptoms. Is she taking fluids and nutrition? Did she have her end of life wishes documented?

I don't know anything about how your health system works there I'm afraid.

 

[KarenNWendyn]

I second Tillie’s recommendations and also add that I wouldn’t expect her to hang around for too much longer. I’m sorry about this. My thoughts are with you and your family.

 

[ShiftKicker]

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