update

[jennbenn]

well hospice just left...

he told her he feels great "better than he has in 2 weeks" grr!
she said well you look pretty good...

what the heck?

as soon as she left he felt faint and almost passed out and had company here.

I told her all the stuff i posted here and seemed to have no effect.
I guess i am just obsessing over all this too much.

 

[Katie C]

Jenn sweetie.. don't beat yourself up, of course you're obsessing over it. You sound like me.. I bet you're the one in the family that always "fixes things" aren't you. Problem is.. .we can't fix this one and it SUCKS! Glen kind of does the same thing.. he gets "up" for doctor's appointments or visitors... then is much worse after they are gone or the visit is over.

If he's on the 02, he might be feeling better even though he isn't. And while 02 might be counter indicated for PALS, it gets to a point where you are looking for comfort, not improvement.

The morphine is probably making him feel weird and less with it.. maybe the doc can prescribe something else for pain?

Basically.. this is just going to be an exhausting time for you.. know we're all here thinking of you and sending whatever energy we can spare.

Take care.

 

[brooksea]

Doesn't that just light your pants on fire when they do that? :evil: I know exactly what you are talking about! "I'm doing great!" and the minute the person leaves, they are slumped in the chair and can no longer function the rest of the day! This has happened at our house this weekend with the "I've got a cure SIL" (IGACS) visiting and offering her advice. He has over extended himself and now feels absolutely rotten and in the meantime IGACS was commenting on how well he is doing to her surprise. So now I'm a liar about his condition.

I really feel for you! I wish you luck in getting care and help.

As Rosella has pointed out: ALS SUCKS!

 

[handinhand]

Hi Jenn, Just wanted you to know that I am praying for you and your sweet family. I know this is such a hard thing to go through. Just remember we are all here for you and feel the pain you are feeling... Big Hugs, Linda

 

[Blubear]

Hi Jennifer, I was thinking about you again today, hoping that you would get some much needed relief. You sound exhausted hun! I can tell you are tired beyond tired. I am glad hospice was there today, but you need a break sweetie! You have GOT TO take some time for yourself and rest! Dont feel bad about it because in the long run you would be benefiting everyone else by doing so as well. When is hospice coming back? What did your husband say when you questioned him after she left? Oh I wish I lived closer so I could come and take care of the kids and hubby while you get some much needed time to yourself! Is there family you can call? Thank you so much for keeping us posted, we all care about you and your family so much!
Hugs, Kari

 

[irismarie]

One bad thing about all that is that I feel if they/we can make an effort for anyone at all, it should be for the most loved one, for us/you..

But on the other hand, sometimes even when I have taken dogs to the vet, they have perked up and seemed better. Just had a thought - maybe it is because the other person/the vet is in a better state than the carer and that is then reflected in the patient. So the advice about getting yourself some rest and peace is even more valid..........

Have you anyone you really do not like you could go and kick?;-) Otherwise take a walk in my garden while listening to Mozart's flute and harp concerto.
Loads and loads of love
Loads and loads of love, Jenn

 

[paleshia]

you are being prayed for today.

 

[JOSIEM02]

Jenn, my heart is breaking for you and your family. I will pray for your family. Sending you prayer, love and strength from Pa.

 

[indigosd]

Jenn,
arrggg :evil: I can sooooo identify, Web does the same thing! Maybe it is just a "MAN" thing?! I made a appointment for PT because his shoulder was causing him so much pain. Several months ago we tried steroid injections but it didn't do a thing. Get to the PT appt and suddenly he thinks that this is a test to prove his manliness and REALLY pushes himself. They looked at me like I was a crazy woman and he of course minimized his condition. :evil: Of course, he could barely move for two days afterwards. heavy sighs...Hang in there and paint your fingernails so that it looks really pretty as you are either pinching him or hanging on to your last bit of sanity! lol

 

[jennbenn]

ok newest update...
HUsband has been having "weird feeling " off and on for a while now and thes "spells" as he calls them can get pretty scary lasting for 30 min or so and involving so many symtoms like...

sudden pale skin, sweating profusely, struggling to breath, and blood presure drops.

we even went to ER the first time but they acted like we were making a big deal out of nothing as it had passed by the time we arrived (by amulace called by home health nurse by the way)

anyway, they have gotten more and more frequent so Monday he had another very scary one and then Tues another one, and I called the hospice nurse after and she said well its probly stress... so i called the clinic they said hes going into Respitory failure and next time that happens put O2 on him...he had another bad on today, i didnt put O2 on him and he did get to breathing a lil easier but then another one a few hours later.

whew i dont know how much more is ahead or how i am posibly gona handle it.:---(

 

[Katie C]

{{{{Jenn}}}}

 

[irismarie]

Poor poor Jenn. Big bear hugs.
So so so sorry. Can only send love but love all around you
Irismarie

 

[Madison1943]

Hi jen, I'm new here but have read your posts and Ii sympathise with your struggles. It almost makes me glad that I live alone and nobody but my dog sees my falls and crying spells. It's hard for him and his happy personality has changed. It's so sad. I try, but I can't play with him or walk him much anymore. Neighbors have taken over the walks. Hospice is starting with me in 2 months, but I don't know howmuch they can do for me. I don't want a bipap and all the other stuff, so I'll be in the same boat as your husband in the coming months. I'll accept themorphine, you betcha. I'm taking so many drugs now I can hardly focus.
I'm sorry for your pain. It's probably harder for you than for him.
Take care,
Carol

 

[Blubear]

Hi Jennifer, well call me stupid, but trying to stay positive for you hun. I am in no way a doctor, nor am I implying that I know what is wrong, but have you checked his blood sugars? The symptoms you describe is most likely the ALS, but it is A LOT like when I get my attacks, I dont know what triggers it all, but I will start shaking, all the blood drains from my face, have trouble catching my breath, and then I immediately remember that I forgot to eat and I am diabetic. So, I have an apple and peanut butter and it passes, but the whole time I am shaking and having to lay on my side until that feeling passes. Could be that my sugars get low, then it produces a panic attack. Either way, I like apples with peanut butter so I am a happy girl. Thought I would give it a shot and just see if that is what is going on with him, you just never know. I am always thinking of you and your family and pray daily for the struggles that you are all going through right now hun. Thank you so so much for the update!
Hugs!

 

[jennbenn]

thank all of ya'll for your kindness and support.

bluebear,
I too thought that may be the case but, he is on formula for the past few days so on a pretty regular schedule with getting nutrition, so i am inclined to think thats not the problem, but was a good idea i thought...