1967stingray

Sue, I seldom pull out Ray's old Nikon, I sold all the lenses except the one it originally came with. But my cell phone gets used daily, I take 99% my photos with it now.... the only calls I get are sales calls. I do take quite a few pix, although mainly to validate my life to my Facebook friends. But I often think, when the time comes that Ray is gone, will I continue doing so? I like to post pictures of him out and about, having a good time (if I can get him to smile!) and almost never put anything negative. A total PR campaign for me. Pix of me are so rare that everyone comments on it. I think I will pass into anonymity myself when the time comes....there may be nothing left to say at that point.

That is so sad!

You could pay for long term care insurance beforehand, or else you can hook up with Medicaid to foot the bills if you have very little money to start with. It takes some research and lots of paperwork, but there are social workers out there that will guide you through. And what about your VA, ours has a nursing home there too. Even a millionaire couldn't afford to pay for a nursing home nowadays! Not for long anyway.

I've know people that say this is what worked for them, I am rooting for you!

The VA is sending PT and OT to us too now, while Medicare gave up around March of this year, and that was it til January 2017. They also gave us a stair lift so Ray can have a proper shower upstairs, an electric Hoyer lift (after he fell and for the first time I couldn't get him up without the aid of a local cop),also another ramp is supposedly in the works (someone came to measure but haven't heard when he's coming back) plus I managed to get one plumber to give an estimate on redoing our bathroom with a bigger shower stall, although I still need a second one to get the grant. We live near the Hamptons so this time of year they are all busy with all their million dollar jobs ;-) so maybe over the winter. They also have nurses that come monthly and quarterly, as opposed to the Managed Care's new rules of once every six months and really just for paperwork. I feel like it was God's doing that sent that Medicare therapist when Ray came home at Christmas, he was so adamant that we call the VA. Would not stop badgering me! I will be forever grateful for their service to us!

Wish I could share your optimism ;-) I do have an aide who is scheduled for 6 hours but is really here at least 8. I know that sounds wonderful, and I can get out a couple of hours here and there....but she is in her 70s so can't even take Ray into the bathroom. So a week away...maybe someday? Or not. I am so glad to hear of your plans though. Enjoy!

You are an inspiration Fred! Sorry I don't write more often. Ray is turning 70 next spring and now everything that is wrong with him, they say it's his age not the stroke. He's about where you are now though. Luckily, a Medicare therapist we had in January, right after Ray got out of rehab for pneumonia with his stomach feeding tube, turned us on to the VA. Ray always belonged but never really used the benefits. Now,they are our saviors; they are so helpful and generous and I will never be able to thank them enough. We went for a new wheelchair yesterday, I was happy just to get a regular one but they were wanting to know why we didn't want a motorized one. It's a strange new world, but the VA definitely takes care of their own. Hang in there, tough guy ;-) At this point, it's almost six years for us....but who's counting really?

My heart breaks for you, Sarah. I am so sorry.

Great news! Glad to hear you're coming along finally.

Isn't that what travelling is about though? Seeing how the other half lives! I'm sure they'll be blabbing about it for months after they get home.

Glad to hear, it was a long fight but worth it in the end.n As always, the squeaky wheel gets the grease.

Wow that is so much to happen in such a short time Yvonne. I am glad you and your siblings know how to deal with it all though, you definitely know what to do.

Thanks so much Fred, your prayers must be working. I seem to be the most concerned about Ray at this point, everyone else is moving on to bigger emergencies it seems! A nice feeling finally. You are in our prayers too, hope you're feeling a little better now.

Those little ones really light up your life, don't they?

Thanks everyone, Ray is doing fine and it is handleable, if that is a word. He has perked up so much with all the therapy he got in the last three months, although he was glad to slide back into oblivion the last week or so too. Reports from PCP and home nurse today is they are moving on to other, more important things, so all is well. I hate doing all the bandages and sores and such but guess it could always be worse. The speech therapist yesterday plus the PCP today told me he'd be off the tube soon, he does eat breakfast and drinks chocolate milk all day...if only he would join me for a nice dinner once in awhile. Guess that's asking for too much at this point. He's very "cognizant" is what everyone is telling me, so I will be grateful for that at least.

Not as bad as I feared! They did keep him at the SNF for two extra days, until Dec 23, due to the social worker not knowing how to navigate the Medicare approval of his feeding tube. Mainly due to the fact that he also eats via mouth. Thank goodness I have the Managed Long Term Care agency to fall back on, they arranged for it and are paying for it in the end too. All the home did was send a bed, oh and a shower seat I didn't even need. I even had to pay for the little wheeled table that goes with the bed but did so gladly. Ray loves having it nearby even though he sits in his wheelchair all day now. All his things are arranged on it just so, the same way he did at the place. So after all that, the feeding tube ended up being an electric pump one, which is fail proof. Ray seems to love it, to the point that I can't get him to eat much else except breakfast, and numerous glasses of chocolate milk throughout the day. I don't think things taste very good to him anymore, in general. But he's not starving, even though they cut him back drastically on the liquid food when he started eating again; hard to weigh him when he can't stand up but I'm betting he's gained weight just since he came home. And he was a good few pounds over before that, too. I was also worried that they had never taken him in the bathroom the whole time, just changed him in bed with a team of two aides. I begged them to get him back to normal with that, but I could see they weren't. Luckily, he came home and went right back to the way we used to do it, he tells me when and I take him there just as we always did. What a relief! I was so worried I wouldn't be able to handle any of this, but it's not really that bad after all. No worse than before, anyway! He's been home a week and a half already, and it's been a non-stop carousel of course: Two nurses, one from each agency, both full of excellent info; PT OT and Speech, all twice a week; doctor office visits galore and all that fun stuff. He is doing great, so much more energy than he had the last year or so, they really did a good job on him. And everyone seeing him now, whether for the first time or not, comments on how animated he is and that he is so much further along than I was thinking. Getting off the tube is a real possibility somewhere down the road. Life is good ;-)

It will be worth waiting for, for sure! Don't forget ;-)

Glad to hear you're keeping busy! Family is everything, I never realized until Ray had the stroke. Thank goodness for them, especially the little ones.

Fred, you're not complaining! You're not the complaining type. We want to be your cheerleaders but only you know how far you should push. I think you are doing great, it's hard once you stop working and socializing to have that extra oomph. Here's hoping you're just still recovering from your last set back and that's all it is, it takes SO long to recover the older you get. But that doesn't mean it won't happen!

You know Fred, I sort of gave up on Ray after he broke his arm last June and refused to walk anymore. He got weaker and weaker resulting in this year ending up with pneumonia twice, so the second time I just let them put him in long term rehab as a last resort. I didn't know what else to do at that point, it all seemed hopeless. Well three months later he is walking again, due to his bonding with the PT there. I'm talking hundreds of steps! Just to say, you never know. I realize you're against going into a situation like that, but Ray seems to be thriving. To my surprise! It's not the Ritz but he seems to like the socialization too. Please don't give up so easily, it may not be all that bad. Hope your holidays are happy ones!!

Christmas will be "easy", because I'm only doing a pasta and antipasta meal, and not the "Fish Feast" the night before that is a family tradition. I could also make fresh pasta....but I'm not! No Boil noodles are good enough I say. I called his brother and sister's bluff on Thanksgiving, said I'm not eating if Ray's not eating, and to my surprise they proposed a visit to him that day followed by dinner out. So guess I can handle one little ol' meal out of the three major ones I usually make this time of year. And no, it's tradition for them not to chip in much of anything, including help. I somehow stepped into the role of their Mom many years ago, after she fell ill. I figure it's not forever, so what's a few more years? Because there's a good chance we'll be moving closer to one of the branches of my family before too long anyway.

If it helps at all, a year and a half ago Ray fell at the top of the stairs and broke his arm, resulting in his refusing to walk anymore. He got weaker and weaker, and then exactly a year later ended up in the hospital with pneumonia....but I took him home anyway, since the summer was just beginning. He was not himself for months and then another pnuemonia battle in September resulting in him back in the hospital, where they put in a feeding tube (so depressed about that!) and then this time three months of rehab. But he's getting better, and Mike will too. It just takes so darn long! For very action there's an opposite and equal reaction, and that means there are better days just around the corner for both of us.

I'll always remember, when we went to Italy for our 20th anniversary, my husband wasn't thrilled about the idea despite his 100% Italian heritage. So I was saying to a customer "I hope we have a good time" and he said, "You CAN'T not have a good time in Italy". And boy he was so right! Glad we did it before the stroke too, those cobblestone streets in Rome were hard enough without any disabilities ;-) Next up, Ireland..... some day!

So sorry to hear of all your troubles, hopefully as they say "It's always darkest before the dawn". Why do bad things always happen in bunches?