update

[cris]

jennbenn, I can so relate to you. Earl has said the same things. He doesn't want to be a burden to us. I keep telling him he has to give me 10 yrs! I'm not ready either. But I feel that way everytime he progresses. This (ALS) SUCKS!

Hugs and prayers go out to you and yours!...c

 

[JeffP]

jennbenn im deeply sorry of this news you just shared ,i hate this awlful illness im praying for you your husband and the whole family it really hurts to hear this im so so sorry jeffp

 

[Erica]

Jennbenn, Im so sorry to hear about your husband progression. Please know you and your family are in my thoughts.
Erica

 

[hopeful warrior]

Hey, Jennbenn. When Greg saw Dr. B in Dec. they were very rushed. They moved us from room to room and didn't even weigh Greg. I told you they said his oxygen was down and the Dr. was pretty short. The folks at Walgreen's Respiratory told us that they had so many new patients over the last 5-6 months that they were overwhelmed. Greg left feeling aggravated and hurt.

I'm sorry about your appointment. When do you all go back?

 

[irismarie]

LOve and hugs and strength sent in huge huge quantities

 

[jennbenn]

they told us to come every week if we wanted...not gona happen ,
so we said how about 6 weeks . our next app. is march 11th. but resp. therapist will be out be for that.
things are still changing so quickly, last night i asked if he wanted to talk and he said theres not much left to say.
he just keeps telling me he feels disconected from this world and theres just not much left here for him.
he has gone from very high strung shall we say to very agreeable and quiet, i fear the change is an indicator that he is giving up his hope here on earth. i only pray that i can help encourage him and remain stronge myself.
ok eough feeling sorry for myself, thanks for listening to my biggest fears and understanding my situation.

 

[handinhand]

Jen, as i read your thread my heart is just breaking for you and your family. I have tried to stay strong for them[my family]. I wish we could make this journey easier on our loved ones. You are so special, kind and loving. I know how much you have meant to you husband ...It helps me to hold on to the faith that I will see all my family and my dear husband again..... Take care and know you are in my thoughts and prayers. Linda

 

[Blubear]

Feeling sorry for yourself? My lord girl, you have every right to feel that way! Perhaps your husband has not given up, but has more or less moved into just accepting where he is with the disease right now. He is still here, able to communicate and that in itself is still a blessing. Only focus on today. We all tend to "future trip" with our fears and forget to look at what a blessing just today is. I know you already do that hun, I just hope your hubby can too. I am closing my eyes and sending you all the strength and hugs I can!
Kari

 

[jennbenn]

I think I just need to get this out idk maybe having said it to someone helps me to cope...

the last week has been a tuff one as my hasband is growing weaker by the day.
he has refused to eat or take tube feedings 4 of the last 6 days.
he is too weak to shower or be showered and has refused that 5 of the last 7 days.

last night when i put him to bed his foot (only one) was swoolen and red, hot to the touch. the other one was ice cold...I dont know that this means anything just very strange.

he woke up 5 hours later and was air hungry he asked to be sat up and moved to a chair in the livingroom he continued to have trouble for hours.


now he is up and talking but is gasping between words. also has a bad headache and loritab hasnt helped, I just gave him naproxin also maybe that will help ?...:-(

 

[brooksea]

Jenn,

So very sorry about all of this! Can you not call Hospice in to help ease his discomfort and pain? Y'all shouldn't have to deal with this on your own! Can you call the doc and get an order for hospice to be sent out right away (and don't forget to mention his foot swelling/temp)?

I hope you can find a way to comfort yourself, your husband and your family through this difficult time. Sending you hugs!

 

[jennbenn]

well he told me not to call anyone...so i guess we will wait and see what hospice nurse says on monday...

 

[irismarie]

Oh, Jenn, if only we could all come and take you both in our arms......
So so sorry.

 

[Katie C]

Jenn.. glad you have the hospice nurse coming in... sometimes they can say things and be heard that we as "only spouses" cannot. I'm afraid you're also at the point where - almost as you would as a parent - you have to overrule your hubby in his own best interest sometimes. If you feel it's important to call someone... follow your gut. It's ok. Hang in there.. we're thinking of ya!

 

[chefdeborah]

Jenn, my heart goes out for you and your husband and children! I will pray for a plateau for yall. Maybe if we all pray, it will happen!

deborah

 

[Blubear]

Oh Jennbenn, my heart breaks for what you and what your family are going through. You could call hospice, even though they are already coming on Monday, and ask about his feet. Maybe a massage or something would help, and hospice could at least give you advice as to what to do about the other stuff until they get there. My thoughts and prayers are with you.
Hugs,
Kari