I don't know what to do any more

[GregK]

For posts that are long in text or thought, you can use the notepad app in windows to compose and then quickly cut-n-paste into the forum reply box.

 

[MaxEidswick]

>For posts that are long in text or thought, you can use the notepad app in windows to compose and then quickly cut-n-paste into the forum reply box.

Ditto that!

I keep a rolliing 'forummsgs.txt so I can cut & paste notes ...

 

[TGB1]

Ok. I may break this up in to a couple of posts so I don't lose everything again. And Greg, thank you for the cut n paste suggestion, but my husband has tried to teach me that several x and I'm pretty basic when it comes to technology so I still don't get it. A heartfelt thanks to all of you who responded, and I will try to address most of the issues you brought up. I don't believe that the moaning is from pain. I know she was hurting for the first few weeks, but she can still let us know if something is hurting and that doesn't seem to be the issue. I don't know if this makes any sense, but since she can no longer speak, she seems to physically need to still make some kind of sound and when I ask her to stop moaning she actually has to put her hand over her mouth. She just sounds so sad and lost. We do have all of her health directives in place and I am her POA, but I am finding out that they don't really mean a whole heck of a lot when you are considering ending tube feedings and not all family members agree. As for the meds, the hospital and nursing home definitely had her on some stuff that made her CRAZY, but I demanded that to end and now she is relatively calm on a combination of respirdol and amitriptyline.

Trina

 

[TGB1]

Continued... Hospice did start as soon as pt and ot ended and she became a resident of the nursing home. But like most of you, I know so much more about this disease than any of the hospice nurses and/or the nursing home nurses and doctor. It is frightening to me how little medical professionals know about this disease. And since my mom is bulbar, and still relatively strong (although beginning to weaken), they simply do not see her as an als patient. Her breathing is still ok, shes not struggling for breath or using her shoulders for breathing, but I'm sure she is having carbon dioxide retention as she has the red cheeks in the am with headaches. I'm not interested in starting bipap at this point. And when I ask the nursing home dr. whats going to happen when she does start to struggle breathing, he says he will give her morphine.

 

[TGB1]

continued... We are pleased with the care she is getting at the nursing home, and I realize that goes hand in hand with me, my brother, and/or a paid caregiver being with her daily. They know us, they know they are going to see us every day, and they are quick to respond to any concerns that we have. I am very comfortable there. I would never have chosen this for her, but this is where we are and it seems to be working right now. In some ways I think it is a gift that she sees and understands that she is not the only one who can't talk, can't walk, and has limitations. She sees the same people every day, sometimes she acknowledges them and they respond to her, and most importantly I know that she is never alone. I always thought that I would know when to stop the tube feedings, and the reality that I don't is heartbreaking to me. The fact that I can come here, and you all understand and care about me and my mom in Pittsburgh, PA, is what gets me thru the day sometimes. Thank you.

Trina

 

[affected]

thanks for the update Trina.

It sounds like there has been some progress in the past few days, that's something.

Now she is off those meds and more herself, can you talk to her about what she wants?

 

[Barbie]

Trina, hang in there.

my husband sometimes makes moaning noises. I asked him why, and he smiled and sheepishly said it felt good! Is she able to communicate with you and is she aware of her condition (FTD in play?) I think before you say no to a bi pap or stop feedings, you need to know her feelings on it. these two items will not lengthen her life a great deal, but they can make her life more comfortable and easier. I am glad she is getting her meds straightened out.

 

[TGB1]

Thanks Tillie and Barbie for responding. Tillie - When she was a bit more lucid ( prob a couple mos ago) I did ask her about the feeding tube, and at that time she motioned that she was done with it and wanted to go. Now she really isn't that lucid and if I bring it up she gets a terrified look on her face and shakes her head no, because I know she is afraid. Barbie - I don't really know how aware she is anymore so I really don't think I can get an answer from her. I'm interested in what you said about the tube feedings not really lengthening her life, because thats what I am most confused about. I would be interested in knowing if anyone on the forum did stop the tube feedings, and how the following days and weeks (?) were after stopping. The nursing home tells me that people can last for quite awhile once the tube feedings stop. I feel like she can't possibly last that much longer with or w/o tube feedings, but her history has proven otherwise. I mean diagnosed at 85 almost 2 years ago, and having symptoms at least 3 years prior to that, sure as heck isn't rapid progression. And of course, apart from her suffering, I feel like I have been dealing with this FOREVER. Sometimes I feel selfish, and Lord I know that you both understand, but I simply don't know how much longer I can see her suffering every day. I feel like I have lost such a huge part of myself that I will never get back, and I still have to carry on for my son and husband. She will be 88 in February, and I think please God don't let her see that birthday, release us all from this living hell.

 

[affected]

Trina the peg will lengthen her life, but not by a lot at this point.

When Chris went into actively dying on Easter Friday I gave him half his normal peg feeds Friday and Saturday, he couldn't tolerate a full feed so I gave him 4 half feeds.
Sunday morning he was obviously truly in a bad state and was communicating with a chart that only had the kind of things on it he needed at that point and he had no appetite and had no more feeds before he passed early hours of the Tuesday morning.

To be honest, if I had continued half peg feeds I think he would still have passed at the exact same hour as he was barely breathing at all the last 24 hours and that is what was taking him out.

I was so grateful however that I could give him his oxynorm through the peg and the clonazepam drops into his mouth (no swallowing, they are absorbed directly through the gums). Otherwise I would have needed someone to set up a patch or a line, and being public holidays this would have been a nightmare. The oxynorm into the stomach worked perfectly for him and he was in no pain and the clonazepam had him completely calm.

But your mother is not actually at the actively dying stage. I'm sure she would not last 'long' if feeds were stopped, but it could be many days, more than a week. If she is fearful of stopping feeding then it is very hard. If it is believed that she is making her own choice, you will have to honour this, especially with her in a nursing home.

I can't imagine watching this all going in slow motion. I was grateful that when the end came for Chris it was fast - 4 days to me was pretty fast to suddenly wind down and it was over. I've known PALS far more emaciated than Chris take 2 weeks in the state Chris was in for only 4 days.

A friend PALS of mine here locally passed 5 weeks ago with his bipap still attached, so again these things help with comfort, but when it is the end they don't stop the inevitable. They can simply help make the end more comfortable. Chris was never on bipap so we didn't have any kind of decisions to make on that count.

Sorry, not pretty stories I'm telling, but you are in a hard place of choices.

 

[TGB1]

Slow motion. Tillie - that is exactly right. I never thought my mom would still be around 2 years after diagnosis with little progression, but she is. And now there is progression, I'm guessing because of the fall, hip replacement, and general anesthesia, but I have no way of knowing how quickly it will end her life. I know Chris was rapid progression, and that was horrible for you, but at my mom's age that would have been a blessing. I have been watching her die for years now, and it is truly wearing on me. I feel like my life has been on hold for so long, and I am ready for this to end for both her and me.

Trina

 

[MaxEidswick]

Trina, the unfortunate fact is tthat we do what we have to do and wait for tomorrow for peace.