How much longer?

[weavie]

My mum has deteriorated and become much weaker. Mum was diagnosed 18 months ago with Bulbar onset. She had aspiration pneumonia 12 months ago and been fed via PEG tube since then. She can't swallow anything anymore and can now not speak. She uses an ipad to communicate. She has become weaker in her arms and legs, but can still walk from bedroom to bathroom with a walker. She sleeps most of the day now. Mucous is a major problem and her cough is so weak now she has trouble getting it up. The suction only helps if she can get the mucous into her mouth. She has refused to use any ventilation support. I am wondering how much longer this living hell is going to last?

 

[Atsugi]

Without ventilation of any kind, CO2 will build up in her lungs and she'll sleep more. At some point she won't walk anymore, and she might consent to a catheter for urinating. Watch the color and cloudiness of the urine, as that is a good indicator of the health of her overall system.

 

[MaxEidswick]

> been fed via PEG tube since then

plug the peg ... 7-10 days

 

[Nikki J]

Atsugi gives good advice. He has unfortunately been through the end phase with his wife. I have been through it with my mom and second his words.

If she is competent it would be her choice to stop the peg feeding/ hydration. However, there was a wonderful and brave PALS Ben who decided he was done and chose to stop eating/ drinking. His last piece of advice to others was not to choose that end. It is very different than the natural decrease of eating/ drinking at the end of life where things gradually shut down. Please don't consider it.

 

[weavie]

Thank you Nikki for your kind words of advice. I understand what you mean. Just wish I knew how much longer she will suffer and how much worse it can get. But I know nobody knows. I hate seeing her like this. This isn't my mum.

 

[Barbie]

You are at a horrible stage of the disease--and I am so sorry for your mom's suffering and yours for having to wait and watch.

It is a living hell, but my guess is that the end is not that far away for her if she is sleeping much and having so much trouble. I don't mean days or hours, but maybe only a couple months. I am only guessing from your description--I am not a doctor or nurse.

do you have hospice involved? they can help with palliative care that will make the end so much easier for her and you. give them a call if not.

big hug to you

 

[weavie]

Thank you Barbie for giving me a suggested time frame. I understand this is impossible to predict specifically. Yes we have palliative care involved and they have been good. But so far have only seen her about once a month.

 

[Atsugi]

At some point when hospice is called in, they might transition to what they call Crisis Care. From that point, we had a matter of days or a couple of weeks before the end. You might consider asking a doctor to evaluate her.

The big deal for most ALS patients is oxygen vs carbon dioxide. A pulmonologist would know best.

 

[Barbie]

Like I said, that is only my personal guess so don't really put stock in that time frame. Have you talked to the palliative care team about increasing the visits? she may be progressing faster than they realize--once a month is not much. also, the nurses in that type of work are very astute at knowing the signs and time frame.

 

[GilWest]

At some point when hospice is called in, they might transition to what they call Crisis Care. From that point, we had a matter of days or a couple of weeks before the end. You might consider asking a doctor to evaluate her.

The big deal for most ALS patients is oxygen vs carbon dioxide. A pulmonologist would know best.

Mom could not perform the PFT because she could not tighten her lips around the mouthpiece of the device. The pulm. doctor did a blood gas to check the CO2 level. He said her breathing was "fine".

 

[weavie]

I will speak to palliative care tomorrow. I think she may even need a neck brace as her head is always to one side now and she is finding it hard to keep her head up for long. Mum hasn't had a Respiratory Function Test for over a year and I also don't think she could tighten her lips around the device any more. I guess we just go with what we see, day by day.

 

[Nikki J]

Yes it is important to support the neck. Not just for comfort. One of my family did not wear the recommended neck brace and ended up with a ruptured disc from just normal repositioning and needed dangerous emergency surgery

 

[MaxEidswick]

> been fed via PEG tube since then

>plug the peg ... 7-10 days

this was insensitive and mean spirited. I sincerely apologize.

These decisions are your Mothers and between you and she. they are tough. And they most likely will change as time passes, IMO, the should be allowed to change.

Once again, I apologize for pushing my thoughts/feelings forward. You and your Mother deserve better from us (me).

Kind regards,


Max

 

[affected]

weavie, it does sound to me (who is not a doctor of course) that she is in entering the end stage. I think Barbie was about right possibly - maybe months.

We just can't tell for sure. I would suggest you get palliative care highly involved now. They are fantastic - work with them, discuss your concerns, how your mum wants the end to be, how you see that working for you and the family and how they can help. I'm in Australia, and I can tell you the palliative team were awesome. We registered with them early, and had a good relationship with the community nurses well before that end stage came along. This then meant they could really help me during the very end as they were not strangers.

If you read my thread 'downhill' and my memorial thread you can see that the end stages can be handled well for both you and your mum.

hugs

 

[weavie]

Thank you Tillie. I have read your threads as suggested. I'm so sorry for the loss of your husband so recently. You are so kind to be helping others at this time. Where in Australia are you? I am in Geelong, Victoria.