How long will this go on

[CindyM]

Hi Jakk- I don't have much advice but I am sure some of our long-time CALS will. I do have a couple of questions. First, from what other PALS say around here, she might actually perk up and need less medication if she used the pipap during the day. Too bad this is a hard "sell" for her. Second, I wonder what her breathing functional capacity is? As we saw in the video on the ALS residence, some folks can be quite immobile but still alert and involved with the people around them. I wonder if it has to do with the proper use of a bipap?

Just a guess... I always throw these things out knowing that somebody more knowlegable will set me straight if I am off track! :-D
Cindy

 

[jakk]

How long will this go on?

Hi! I have been helping to care for my mother in law who is suffering with ALS. She was diagnosed 2 years ago. She has really been getting worse quickly and our family has so many questions...We just don't know what to do sometimes and we often wonder how much longer she will suffer with this disease. I would like to tell you some of what is going on with her right now and just here from you about what we can do to help her at this stage. We are doing so many things and hospice is involved but I always wonder if what we're doing is right or if there is a better way. She is completely confined to a wheel chair and only has limited movement in her arms and she can still shake her head 2 weeks ago she could shake it great but today it barely shakes.
Two weeks ago she was still very responsive despite being on morphine both orally and a patch, larazapan and a host of other meds...her biggest problem was with breathing. Especially when lying down to sleep. She does use a bipap when sleeping but refuses to use one during the day. The first change came with needing to have a catheter. We were having to move her way to many times and it was hard on us and her. Then she started to struggle more with breathing....she would get very worked up and would require cold air on her to help her breath and she would want to move A LOT- I think just trying to get in a position to breath better. In the night we probably move her about 5-6 times. She might get a couple good hours of sleep but the rest of the time she just fights to get comfortable. (I think I forgot to tell you she also takes ambien as a sleep aid) On Friday hospice asked her if she would rather be "sleepy" or "have trouble breathing" with those 2 choices she chose, "sleepy". So the hospice nurse explained that she would have to take more morphine orally 1/2 dropper every 2 hours plus more larazapan. She agreed and now she is hardly with us at all. Which is fine if this is the best route...that's what we do not know? She is asleep in her recliner most of the day and I haven't seen her smile in 3 days! Also, for the past week 1/2 she has been having trouble having a BM. They were giving her miralax and that helps infact she had a huge blow out on herself which was very dissapointing for her I'm sure! I've read on these threads that maybe miralax isn't the best thing to do with ALS just because it draws all of her fluids away from her body to the gut... Sorry to have so many questions. We are trying so hard to do the best thing for her and I would just like to hear from you guys. I've read some threads and you seem to be so helpful and supportive. One more thing- she had some "gunk" for lack of a better word behind her teeth tonight and then a little blood too. It seemed as if it were left over food but she hasn't eaten in months. She has a feeding tube. Any idea what that is? Thank you so much for reading this long, drawn out post and for any help you might be able to give to us! How long will she have to suffer at this stage?
I love her dearly and though I don't want to imagine life without her I just hate to see her suffering.
Jakk

 

[Rachel]

Dear Jakk

So sorry to hear about your mother in law. it is so tough watching a loved one deteriorate so quickly before your eyes and feel so helpless. My mum found it easier to sleep propped up on pillows rather than lying down and used humidified air/oxygen mix to help her breathe together with suction. The humidified air helped to loosen secretions which could then be suctioned from her throat.

Getting comfortable was always an issue, I don't know how many combinations of pillows we tried but never seemed to find a long lasting solution.

Towards the end she was so uncomfortable and distressed with her breathing & pains in her legs she asked to be put on a drip to sedate her. The hospice have her 2 syringe drivers, one with a muscle relaxant in and one with a strong pain killer and eventually got the dose right over a few days so that she slept peacefully all the time. It was distressing for us all to know that we probably wouldn't be able to talk to her again or see her open her eyes and smile, but she was peaceful, comfortable and pain free.

She passed away a week after asking to be sedated (the long sleep the Hospice called it) and it was exactly how we had all prayed she would go, peacefully in her sleep.

Not sure if any of this helps, but my prayers are with you and your family at this difficult time.

Rachel

 

[jakk]

Thank you for your quick responses. Today she has been sleeping A LOT. With the additional morphin and larazapan she is much more comfortable with her breathing but she is sleeping nearly all of the time. We had a Thanksgiving gathering here on Thursday and yesterday (Friday) she asked me if she had missed Thanksgiving. So even when she is awake she's not remembering what we've done. It's 2:30 in the afternoon and she is just starting to be alert so she is having long periods of rest now. I guess that's good because it means she isn't struggling but I hate to see her like this. It is just so sad. She enjoyed life so much! ALS stinks! Now we are struggling to know whether or not to leave her. Her husband and sister will be here but both of her sons don't know whether to go to their homes which are 2 hours away for one (that's my husband) and the other son lives on the east coast and we're in the midwest...what to do. If only we knew...

 

[CindyM]

Hi Jac- I empathize completely. My Mom is in the final stages of Azheimer's and we struggle with this question every day. There are no good answers, either, unfortunately. I've known people who were able to camp out with their loved one and still felt bad for needing to leave to take a shower. At the end of the day we can only do the best we can, I guess. Wish things could be different for both of us.

Regards, Cindy