Things have changed

[panguinjen]

Dear All,

I have not been here much as Rog has taken a serious turn for the worse requiring much more caregiving on my part and also requiring the hiring of caregivers. In the last several weeks he has lost most of the use of his legs, his left arm and his left hand is curling inward to his palm. His sphincter muscles are also failing and he needs help in the bathroom. He fell twice in one 6 hour period last week requiring two calls to the paramedics. I am paying out of pocket for a caregiver (she's great) that has gone from 9 hours a week to 30+ per week. I am continuing to battle the VA as they are still saying he has no loss of use of his limbs. Today, he had trouble identifying the day, how many children he has and who his daughter is living with and where she lives. He sleeps a lot and refuses to use his BiPap except at night; he will not vent or use a trach.
Thank you all for your support and guidance, and I will keep you posted as I can.

Love,
Jen

 

[Ms. Pie]

God bless you Jen. I love you!

 

[vzandt]

I'm sorry Jen. Hope it all levels out for him.

 

[CindyRN]

Hugs and prayers to you Jen

 

[cervus]

So sorry, Jen. The confusion may be because he's not expelling carbon dioxide. Thinking of you all. Yasmin.

 

[ottawa girl]

Dearest Jen, Caregiver extraordinaire.

You amaze me with your strength and resolute dedication. I pray Rog improves.

I also have the curling finger thing, and a recent acquisition of a resting hand splint is helpful. Its use seems to help the forearm as well.

 

[kiwisally]

So very sorry Jen, my thought are with you as you care for Rodger.

 

[WellsRuby]

Love you and thinking of you.

 

[momap53]

Keeping you guys in our thoughts and prayers.

I just don't get what the VA's problem is. Must you submit a video documenting the limb involvement? Do you have a PVA Rep? I've heard others say they've used their services to advocate for PALS.

 

[cubcake]

So sorry to hear of your downturn. It happens so fast and it's so hard to keep up with all the changes. I feel like I'm in the middle of a horrible tornado, that I don't want to end.

I will keep you in my thoughts and prayers. I wish there were more I could do. I'm happy you are getting some help, and so very sorry you need it.

 

[mich5]

Love and prayers to you!

Stay strong. You are such a good wife! I'm sure your patience and calm demeanor are helping rog. I am so thankful you found such good help and that she's been able to increase her hours to help.

We are with you in spirit.

 

[Barbie]

Hi Jen,

sorry things are getting rougher for you guys. I know sometimes we get "Use to" a level of diability and then when it changes we are sent into a tizzy. I would try to get him to use that bipap in the day time too--the confusion could def be from CO2 build up

The VA I can not help with--we have had some folks here in the past with a lot of good info though. send a PM to astugi...he worked for them and was awesome when his wife (a vet) had als.

If he is falling that is very dangerous--get him in his chair and using it regularily.

Hang in there--we are all in this together!

 

[skipper66]

Praying for you Jen and Roger. Wish there was more I can do for you. You are a wonderful wife. I hope it is of some comfort to know we all care about you on here. Sending you a hug. Love, Kim

 

[marypat]

so sorry jen. hugs and prayers

 

[HelenL]

Oh Jen, wish there was something I could do or say to help... can you get hospice in to help?