NinaP's Mother

[ThisPresentMoment]

As we have discussed, ALS Worldwide has some warts.

Being new to this whole thing, I wasn't aware of that. Can you give me the Cliff Notes version?

 

[lgelb]

Here is a recent thread on the subject (note: there is a white text Search link in the blue menu bar up top and you can sort results on date).

I had seen earlier that ALS Worldwide had hosted an event in Greece as part of their outreach, but it did not seem fully legitimate to me, so I had not mentioned it.

Cliff Notes: they appear to be more self-perpetuating than useful, to many of us, and, as the thread notes, seem to be recycling some misleading/possibly harmful information while presenting themselves as experts.

 

[NinaP]

Mums priest came home today. He brought her Holy Communion and read so many prayers for her. A couple of her friends came too and of course us. She laughed and smiled like a child, we call it Efxeleo, Good wishes for the patient and her family. Father told us many things about sickness and ilness. How Saints went throu so many hardships and everything. It kinda eased my anger and biterness a bit. It was beautiful. Mum is a firm believer and spend her life as a true Christian. Always helping others no matter what, even now sick she tells me to help. We still read prayers every night.

 

[wishmobbing]

Nina, I'm happy to hear about Efxeleo and how it did your nerves all some good!

Is she still unhappy about the hospital bed? Tell her her grandkids can use it as a carnival ride to go up and down while squealing "wheeeeeeeeee!"

 

[NinaP]

So tired, everything hurts. My hands arms are heavy my legs my back. Mum is getting worse too. Heavier. So tired. Resigned.

 

[NinaP]

I have noticed ive started to yell to my mumpretty regularly lately the past two days.I dont know. Its being tired, angry at the world, fear of being sick, the question why to us? My siblings are tired too and they have theor families and their visits are getting rarer. Waiting fir my sis to come on Saturday and at least ill havd someone else living with us.

 

[ThisPresentMoment]

Nina, I'm sure it's completely overwhelming. I'm glad that you will have more help soon.

 

[NinaP]

It feels like a marathon that never ends. My fingers are tired too. Im using the sheet to turn mum in bed and my arms and hands are so stiff. My whole body is twitching from being tired. Also my legs. All day up. Washing clothes and making lunch and dinner and everything. Yesterday a friend of mine who recently ended her engagement wanted to go out to talk, and i couldnt. Nobody couldnt come for just an hour. And im going back to work on Monday. I need the money. Im so bitter. So bitter.

 

[Sasha58]

If you have any foam padding you could put that on the bed for mom.... how overwhelming that with each thing you do for your mom, your mom has to come to help tend that this is really happening to her... she’s probably still in shock.... every times she closes her eyes the monster is there.... my husband who is the sweetest guy imaginable and who was also a pediatrician almost became someone I didn’t know and lashed out verbally at me and the kids for a while..... now he just has this dull acceptance and is grateful most of the time for the things we do for him.... hang in there.... pad the bed if you can and pray.....

 

[NinaP]

Hey Sasha58. I think this thing has completely overwhelmed me. Poor mom is generally a great patient, problem is she has lost all movement apart from her right hand. I have only a pathologist to watch her general situation and a ENT to follow how she eats. I call her neurologist in the hospital to update him for her situation and the one who is in out city is a general one who seems scared of the whole situation. When i brought him home the first time to chek on her he left the house asap as he finished the examination. We have a foam matress but she is resisiting it. She is stubborn like that wants things to happen on her own way. She doesnt sleep at night, apart from the first 3 hours, she continues to go to bed at 12 at night just like when she was healthy. I asked her doc if we could give her something to sleep at night but he said its going to make her even heavier during the day. We are still considering it. We are exhausted all 3 of us. The other day she apologised to me, i said hey mum no, why apologise? No. She said you go to work and then you come here and i also keep u up. She can barely talk now. She is so beautiful. With a fantastic skin you know. And amazing eyes. Up till this came up she had no health issues. Looking at us with those big eyes. I got my own fear of being sick too and all that heavys on me so much. I dont know what to do, still remain rather bitter i must say.

 

[wishmobbing]

Stubborness is one way for your mom of staying in control. Even if it doesn't benefit her. In some small instances you might consider a simple "trick" to get her to do stuff that will help her and still be in charge. Present options to her so she can chose. Instead of "Would you like a drink?" you can ask "Would you like to drink water, coffee or juice?". If she is completely opposed to it, she can always say so.
Sneaking her something to help her sleep is pretty unethical. I totally understand that you need the sleep. Better talk to her and tell her that you NEED the rest or you will break down. If she already apologized to you, she will understand. And then you can search for solutions together. She's more likely to make a compromise if it's her idea of helping you.
Hope that makes sense. I wish you much strength, less bitterness and good long sleep!

 

[NinaP]

Doctor visited, mum is getting worse quikly. Dont know wjat to say. He told us she may need the tube to eat soon and mechanism to breath. That kinda upsetted my sister who is with me for a week or so she is seeing all this from close now and she is getting upset angry bitter like me. Im as i said resigned to everything that is coming. Doc said time scale could be soon. I dont know what else we can do about her anymore. She still hopes, tries. I wish we had a hospice or something to offer her the best care. Here the docs are at this mindset of letting everything take its course and not try much.

 

[Nikki J]

I am sorry Nina. It is so hard.

Does your mother want a feeding tube and bipap? It sounds like yes as you said she tries.

If those are her choices ( and they are mine btw so I obviously think they are good ones) encourage everyone to do them sooner rather than waiting.

I believe they are both comfort measures AND they can make your life as a CALS easier.

The feeding tube is very easy to take care of and doing tube feeds is much less work than feeding someone, doubly so if they have swallowing difficulty. My mother chose no tube, my sister waited until it was bad. I know how exhausting it is to feed someone.

The bipap may help sleep better and she might well be calmer overall.

 

[NinaP]

Nikki she doesnt know this is a terminal ilness. The doctor hasnt told her becausd he believes she is voing to stop trying. I have insisted we should tell her but nobody wants it. If we tell her about the tube she is going to freak out. Nikki.you are a hero. I wish and pray that you get everything u want as u want it in this life that was given to u in this way. My priest said to me god is preparing the best for those who are going throu such pain. I very much feel you all of you guys were elected chosen because yiu are such great people. Giving people.

 

[Nikki J]

What does she think is wrong?

It seems to me to have progressive ALS symptoms without an explanation that made sense would completely freak me out. It is frightening enough when you know what is happening. She must know something is terribly terribly wrong

A number of years ago I knew an older physician who had trained in Eastern Europe. He too sometimes kept bad diagnoses from the patient while informing their children. Those were usually very elderly people. Your mother is not that old is she? My impression is 60 something?

If your mother is not demented or very mentally ill this is so sad. I am sorry