Pity Party coming on!

[MaxEidswick]

>Yesterday Tim said, "Sam are you retarded?" and she replied " there is no one by the name of Sam are you retarded in your contacts." But we will keep working on it.

LOL ... Great way to start the day!

 

[barneyswife]

Good Morning, so far so good!
My heart is in bad shape reading all of the trials and tribulations we are all having, it seems like all is bearable and then all hell breaks loose again! There is no rhyme or reason to this horrible disease, it does not matter how organized or prepared for the next, something completely unseen steps in to throw everything off?
I have been getting my Barney to sit down before he puts his pants on as he has virtually no balance left and so this morning he sits down and darn near misses the chair!
We are off flying today, take care and will let you know how our adventure goes.
Hugs
Linda

 

[MaxEidswick]

Hi, Linda --

>I have been getting my Barney to sit down before he puts his pants on as he has virtually no balance left and so this morning he sits down and darn near misses the chair!

It is the same for me. Now, I am more careful, but last October, I sat down and missed my chair in my office cube! and to add to the embarrassment, one of the young engineers near me heard the grunt.

Of course I was stuck on the floor and he had to help me get up. It took me a couple of weeks to come out of hiding . They all know about the ALS now that Sandy has to drive me in in the chair, but still it was a redface moment.


>We are off flying today, take care and will let you know how our adventure goes

Gute Reise! Enjoy every moment that you both can!

Max

 

[Santa joe]

Smp51 is this the weekend you get to go off. Remember I'm pretending I'm getting off myself. I'll close my eyes and dream. Let y'all know how it goes. Last night was bad and today not much better. Lord give me strength!

Linda hope all went well on your trip.

Debbie

 

[barneyswife]

We are back from ALS Center. I got totally sucker punched!
We have approximately one month!

 

[affected]

We are back from ALS Center. I got totally sucker punched!
We have approximately one month!

What do you mean you have one month?

HUGE HUGS

 

[MaxEidswick]

>We have approximately one month!


Hmmm ?

 

[Pkmado]

Barbie for fear of sounding ignorant, what's BP? Phil has those sweats everyday. We spoke to his nurse and also our friend who is a nurse and no one answered it more than take his shirt off which we do. We are moving rapidly into unchartered territory.

 

[dalvin]

Pkmado, BP stands for blood pressure

 

[Pkmado]

Sorry early in the am after a sleepless night. Phil just said I would never make a career out of nursing. Blood Pressure of course. Aspirators, nebulizers, BiPap, vpap, BP oximeter, I miss the old lingo. Hungry babe? What do you want for dinner?

 

[Barbie]

Pat you were obviously having a blonde moment ! When my husband was still on hospice (last year got kicked off) I called the night nurse to come over when he was having a coughing fit. his bp was 145! now, when I see him getting stuck in a fit, I wipe him with a cool washcloth anywhere his pulse is close to the surface--the back of his neck, the crook of his arms, his wrists his temples. sometimes one of my kids will fan him while I wipe him. it seems to help...

he doesn't seem to be able to regulate his body temp as well as before. we have to keep the house too warm because he is always chilled, and at night he gets hot in bed if he is all tucked in. if we go out side in the summer--he can not take the heat at all.

sigh

 

[zoohouse]

Hey Barbie, do you mean his HR (heart rate) was 145? Tim also has problems with regulating his temperature, and he has been wanting to sit out side watching the guys work on the landscaping. So I slip his legs into a down sleeping bag, through in one of those hand warmers, and cover his upper body with the rest of the sleeping bag. It has been in the high 40's but has been windy and if he gets cold he gets almost totally stiff.
Then of course we have to work on getting him covered just right at night so that he doesn't get cold, or too hot. He says that when he gets hot it feels like thousands of tiny needles are pricking him.

Now if only I could get rid of this stiff neck and sore back things would be a bit easier. I am actually surprised that they haven't bothered me before this, as I have had back problems my entire life, and ruptured a disc in my neck about 10 years ago that required surgery. Oh well, life goes on, and this too will pass.

Sigh X2

 

[Santa joe]

Paulette woke up this morning with a sore neck also. Sleeping on the sofa for the last 8 months has finally caught up with me. Then I look at my bedridden pals and think - just suck it up. Had a rough night again last night but have come to a decision. Remember when we say our pals will do something one day and refuse the next. Last night he had a fit when I went to put on the barrier cream on his bottom. He has some breakdown and wanted to avoid bedsores. After pleading, begging, crying and finally loosing my patience, I have decided this is his life. Doesn't want to brush his teeth but once a day. Refuses to use the dental swabs. He is vented and this is so important. Talked into the condom cath - used twice now refuses. It would have meant sleeping at night, now we are up 2-3 times a night. I could go on and on. I have done everything to make his life more bearable but it is ultimately his decision. He is still not ready to give up but spends more time crying. So sad........ I have tried and tried and now I'm getting out the white flag.

Debbie

 

[MaxEidswick]

Hi, Debbie --

>I have done everything to make his life more bearable but it is ultimately his decision. He is still not ready to give up but spends more time crying. So sad........ I have tried and tried and now I'm getting out the white flag.

I am sorry for your pain and I am sure your PALS would too if he were able.

Hopefully tomorrow will be a new day and things will be better.

 

[Santa joe]

Thanks Max - that's why we call this the "Pity Party". Tough decision to make but I'm at my wits end. This is what I say every night. "Thank you Lord for getting me through the day, please help me get through tomorrow".

Debbie