RANT ALERT

If you are not prepared to read a rant, then stop right now. I'm in tears I have no one to talk to so this is where I'm going.
**************************************************************************************
I exist and just barely. I have no life. This horrible disease is taking my life as surely as it's taking Richards. We don't have much entertainment anymore. If we go out we're always alone--rarely any invitations from (persons I perceived as) friends. Usually if we are with someone I've instigated it. One of our children is around frequently, one around regularly, and one seldom. Rich is reaching the point where I'm reluctant to leave him home alone so that means I don't get out very often either and not without lots of planning and I'm beginning to think why bother? There are people that will (sometimes) help if I ask but I get so tired of asking especially when they say no-- 2 or 3 no's and I get the picture. No one ever calls and offers (except for Rebecca who tries to take him 2 or 3 times a month for an evening so I can relax a little) There are places I can get help but it's an application process and I'm just so tired all the time. And then if it doesn't work out I'm so disappointed.

There were three party invitations today, one just for me and two for both of us. Knowing he couldn't handle two parties, especially after a busy morning with the church cantata I chose the one I knew he would enjoy the most--the one just for me was a given no, can't leave him alone. So what happens? He disappears about 3:00 and I hope he's just gone for a walk. He returns in about an hour and a half and he's doubled over in pain and goes straight to bed and practically passes out. I let him sleep for an hour, wake him and remind him of the party but his head hurts. I give him some Tylenol and he sleeps more. Finally I wake him again and he's still too sick to go...so here we are. He's in bed and once again I'm alone again--well always is what it feels like. There were two knitting events yesterday and I did leave him home and go to one for about 2 hours but I just didn't have the energy to arrange Richard-sitting for the evening event.

We've belonged to our church for over 30 years and we've been an active participating couple. We've given our time, talent, presence, money--that's what the Methodist Church asks of its members. I've tried to be of assistance where and when I was needed. But our minister never calls to see how we're doing or even asks when we're at church. The previous minister didn't either. I recall calling him when we first got the diagnosis and he suggested I call my mother and that was the last I heard from him. My best friend told me it was wrong to "expect" help from the church. This disease is destroying my faith. People say they pray for us all the time but I can't feel any positive effect. I really want to believe that God loves us but it feels more like He doesn't know we exist. Oh yeah and there's the one member who told me "no more playdates" after spending an afternoon with us. I can barely be civil to that man.

And no it's not time to put him in a nursing home. He still knows all of us and he'd die if I put him there. It's hard enough getting him to the adult daycare. He pretty much can't do anything for himself anymore, dressing, bathing, he can feed himself but can't fill a plate. He doesn't seem to know what anything is. It's hard to describe. I seem to be running out of steam finally.

Please don't leave any sympathy comments. I'm not asking for pity, I just need to tell someone.... And if you have a friend who needs help then don't wait for that person to call you--you call them and say I'm coming over. Believe me, they are dying on the inside and it's just a matter of time before they're gone completely.