Mom in her last stages

Hi Jdale 949

Hi,

My father was recently diagnosed and you can check my posts to get the full story. Palliative care was into the house this week asking about a feeding tube. He is 76 and does not want one. I'm also concerned with this but respect his decision. I was told that they can be given meds that will ease the panic of not getting a breath and that they pass on very peacfully. Something I hate to think about but know it is coming. Sometimes I wish for my fathers sake it somes sooner than later. He has really suffered a loss in quality of life from what he was used to and I remember converstaions with him that he never wanted to be this way and was a big fear of his. How ironic life is. I live away from my parents and am a school teacher with two young boys as well. It has been very difficult over the past 2 months wondering if I should leave and help care for him or wait some time. I just happened to read your latest post. It doesn't seem that a cure is going to save them so I will pray that their passing is peaceful. I know that my turn to say goodbye is coming and I'll do everything so they do not suffer. My sympathies are with you and your family. May your faith be with you in this crucial moment.

Paul

Hi. I am also new here. My best friend's mother has suffered through ALS for six years. She is so tiny, has lost so much weight and we think is reaching the end. She has lost 15 ppounds in the last month; 15 lbs that she couldn't afford to lose. She can no longer stand or walk on her own and cannot eat solid food. She had trouble breathing yesterday, so they took her to the hospital. She is now on continous tube feeding. Missy is like my mother and we are all so scared to lose her. Those who have experienced a death from ALS, is this the end for Mama?

And I have witnessed my grandfathers death firsthand. He passed just a month ago and I watched him take his last breath. he too signed a DNR paper, which was on the fridge when Hospice came. It is hard to lose the ones we love, but even harder to watch them die. My heart goes out to everyone here. God bless.

Christina

Hi
Dad was dianosed on March 24th, just over a month ago (he is 69 and until Christmas was fit and healthy), he is dramatically worsening day by day. At present he is totally dependant on the BiPap machine, with a humidifier also as his nose was blocked and he cant have the one that goes over the mouth. He has panic attacks if we take the machine off, to shave him or whatever, and they have said they are going to give him Diazapham (not sure if l spelled that right). ls this just to make him less anxious about not being able to breath? He has his PEG in place and gets fed nightly, we also use the syringe to put in 2 high energy drinks in per day. He is still in hospital by the way. He has lost all use of his arms as well as his legs now, he cant hold the cup to drink through the straw any more. (he can swallow liquid......just) The macmillan team have been in today and advised he move to a hospice, he and my mum both said they didnt want that, but wanted home adapted for him to return there, but were told there was a long waiting list for that, and got the impression there wasnt enough time. They said they wont move him to a hospice unless he wants to go, but he doesnt think he is going to pass, just knows he is not getting any better, and infact is getting worse daily. His blood pressure has dropped today, and they said it is 'too low' = not sure what that means. His speech is still fine, although not very loud, but still understandable and not slurred in any way. He has started to get 'finger curling' in the past couple of days, and now insists we position his arms/hands in a certain way either side of him on the bed. He weighs only about 50kg, so you can imagine how thin he is!

Mum (and me in a way) just wants to know how long he has left, but everyone she asks at the hospital just answers the same 'you cant tell, everyone is different'

l would really appreciate it if anyone can offer advice or especially answers?

Karen (Bruce's daughter)

Karen, unfortunately there are no answers for your question.
Everyone is different and he may stabilize at any time.

I was stable for almost a year and am starting to slowly go downhill again.

Just enjoy each day the best you can.

My mother was diagnosed in Nov of last year. She has progressed pretty quickly as she has bulbar onset. She is now still able to speak slowly and sometimes we cannot understand her if she is tired. She refused a feeding tube and now is on ensure and benacal for nutrician. She doesn't want a vent either. She is now relying on O2 during the day to help her be comfortable and uses a bipap at night. I'm just worried that she will just go to sleep and not wake up as I live 5 hours away. I go every weekend to see her, but anything can happen. does anyone have advice?

hope2010,

Sorry about your mom. Every one is different. Is she on Hospice?

Hello all, I came across this thread when I was researching CO2 buildup in the blood. When I was reading the thread I came across "Preparing For Approaching Death"] (posted by CindyM). This is very interesting and touching information which I must ask everyone caring for a loved one (in the final stages of disease) to read. It answered a lot of questions I had which no one ever really wants to talk about. My father is passing into his final stages with ALS very quickly and this was very helpful.
This website is the BEST.

Not sure if this has already been posted.. but I found the following study titled "The course of the terminal phase in
patients with amyotrophic lateral sclerosis" useful as well...

http://palliativmedizin.klinikum.un.../Neudert_et_al_JNeurol_TerminalPhase_2001.pdf