Thank you all for the kind words... sometimes I just get tired and upset...my husband was in the Air Force for 20 years, so thankfully we have the VA and Wright Patterson AFB for support. I don't know what we would have done without them...the VA has supplied all the equipment and supplies, we got a grant from the VA for special adapted housing..which we used to build a home for my husband. They helped us buy a Van that is for wheelchairs. As I said before.. my husband was diagnosed in 2009 and the disease progressed rapidly...the first parts to happen were the walking and talking...we communicate through Instant Messages on yahoo.. I haven't heard his voice in 4 years...he is not on a vent, he has a G Tube which we use for supplement nutrition, Jevity and medications..he is still able to eat at this time, but it takes him 3-4 hours to finish eating. he chokes on saliva but takes Robinal and also gets Botox in the salivary glands 3-4 times a year. We have a stand assist lift to get him in and out of bed, bathroom and shower. He has a special wheelchair for the shower. It tilts back and has an opening on the seat. He gets up at 7am with the assistance of the aide. I provide 99% of his care, he has an aide that comes in in the am to get him up and bathed and dressed. He is having problems holding his urinal in the bathroom, so we tried the condom catheters and that didn't work out..he will not wear Depends, so I have to change his clothes a couple times a day, top to bottom. He has "looks" he gives me when he has to go to the bathroom...and the sit down part.. I find myself trying not to look at him when he has to go... hoping that he doesn't need my help but that is not an option anymore..it has been for 4 years....I hate that part....I hate it that I hate it...he cant help it...
He has a C Pap and wont use it. Here I am sounding like I am complaining and should be grateful that he is here with me.
I am scared of what will happen to me in the end...can I stay in our home? can I afford it? how will I get along without him? My heart hurts thinking of it...being without him...and I will be alone the rest of my life. I was a bartender for 25 years...now I hate to even leave the house.. WHAT IF.. he needs something.. WHAT IF something happens? His family does not help.. they do not come around..he has 2 kids (28 and 30)...I have 2 daughters..they do what they can but they have lives too. I find myself resenting a lot of stuff.... last fall, he wanted a dog.. I am not a dog person...we got this puppy.. with the thought that he could be trained to be a service dog.. and it is nothing but a giant PAIN IN THE #%#....more stress, more drama.. it is just not working out....I have to deal with the dog, tearing stuff up, chasing cats, running out the door as soon as it opens..not getting the go outside to potty.... I take him outside.. (live in Ohio and the weather is like 2 below right now).. stand out there as long as I can.. bring him in.. he promptly pees on the floor...I'm sorry.. just rattling on and on....