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 wi
....and I mean permanently! He would have been covered until January 6 to stay at his rehab, but he's doing so well that we agreed he can finish off at home. Tomorrow they will sign off on my taking him out for rides to get him acclimated to the real world again. The weather here has been unusually warm, but too cool for the patio anymore. I have lots of country routes in mind. and he even seems excited about the idea of a little shopping.
Meanwhile I have three weeks to tie up all my loo
I have been feeling so much trepidation about Ray coming home and not being able to eat. Of pushing him around with a food bag attached to his stomach. Of our lives taking such a big step backward. I wasn't being given much hope by anyone.
Then I spoke to Ray's old speech therapist Shannon, the one that worked so well with him when he first came home almost five years ago. And she was irate that he hadn't been given any more swallow tests since he got out of the hospital. So I left a note fo
I'm glad to say Ray is very noticeably improved over the last couple of weeks of treatment. He is getting therapy six days a week and I am told he is finally walking for the therapists, after a year and a half of nothing. It would be SO great if he could get upstairs again when he comes home, then he could have real showers and not have to hear me at dawn bustling around the kitchen while he sleeps a few feet away in the den. I didn't dare dream of anything this positive a few months ago.
Th
Things are moving along. Ray's pneumonia is declared cured despite a lingering cough, so yesterday they transferred him to a nearby SNF for PT, OT and most especially speech; that, more for his throat and swallowing than actually talking. They are hoping to get him to eat again without it going into his lungs. Even if it's some kind of modified diet, I won't mind, as long as he can get off that feeding tube. With my lifelong involvement in the food business, this is the most upsetting thing to m
Guess enough has happened lately that I should put it down in writing. My head is spinning sometimes!
Ray recovered from his broken arm last summer physically, but never mentally. Refused to walk so got weaker and weaker, despite weekly therapy sessions. Still sleeping on the couch in the den too, I got used to that. Upstairs was like my own private apartment so I wasn't complaining all that much, really.
So out of nowhere, he got pneumonia right after Memorial Day this spring. I ha
Sorry but this is an "excuse" post, a summary of the last month or two for me as much as you. Can't believe how many times I've been getting the old "one-two" lately from that old fickle finger of fate! But my New Year's resolution is to stop sugar coating everything, so here we go.
Started late summer, maybe October? We were still in a great mood after our trip to Wyoming and feeling on top of the world. Then one thing after another made me realize I was just dreaming.
So the lawnmo
Our trip to Wyoming had its ups and downs, but overall we had one of the best times of our life. Ray’s incontinence issues didn’t cause much of a problem until the morning we were leaving there. Got Ray up at 4AM to find the sheet, and the mattress cover, wet; it was still dark so I’m not sure about the mattress itself. That felt the tiniest bit damp (why don’t they make mattress covers waterproof?). I left the mattress uncovered and told my sister to tell them to send a bill if there were
Figured it’s time for an update, nothing major but we’re moving along I guess.
We go Monday to see the orthopedist, to find out if Ray’s arm is officially “healed”. Luckily the break was minimally displaced, plus it’s his paralyzed arm, so he hasn’t needed a cast or sling. That does makes things tough for me, I didn’t realize how much I used his arms as hoists, to get him up or position him, but we’ve worked it out and I haven’t wrecked my back so far. We’re also finally doing OK in gener
Couldn't update yesterday because we had a never ending medically oriented day. Started with me going out to get my blood work done at the break of dawn; I've been putting if off for weeks, since Ray broke his arm. I was afraid to leave him home alone, but also not willing to wait til he decides to get up around 10 or 11. I hate going later on because you have to wait so long at the hospital, plus you can't eat or drink until after. I do enjoy my first AM cup of coffee! Ray also has bloodw
The beginning of the month, I was on a mission to clean the house, inside and out, as if guests were coming, and also the yard, and I was really getting somewhere for a change. Then Ray got a terrible bronchitis kind of cough so I had to attend to that; we did an emergency doctor visit, then I was dosing him with antibiotics and Robitussin, changing his diet to eliminate dairy and generally watching over him while he was sick, poor baby. He got over that quickly enough, then a week later.....th
I keep saying I am going to call the agency and say I'm not happy, please send someone else (or no one at all if possible) but I had another lunch date with a different girlfriend Wednesday (making up for lost time) so I wanted an aide until then at least, for selfish reasons. Friday Ray had a quick podiatrist visit from which we could have got back home in time, but in the meanwhile I got three different tick bites from gardening and raking out back and I know the drill. I made an appt to go
Ray hasn't been walking, except up and down the stairs for the bedroom, all winter long. And popping in and out of the car, but lately he seems to prefer waiting for me rather than coming in the stores. Hasn't had the AFO on even once. Then the other day I asked him why he doesn't get into his wheelchair by himself anymore, which he can do from the low couch in front of the TV. It was good to know I could leave him there and that he could get to the front door or out the ramp in the garage
She just called, had that sort of fake "sick voice", telling me her leg hurts so bad that "it wasn't even available yesterday". After I hang up, I remember reading somewhere (here? or in one of the many books I read on the subject) that when you have in-homes calling off every Monday, there might be some kind of substance abuse problem and they could be hung over from the weekend. Not always true, but something to keep in mind. She's been with us three weeks, and has called off each Monday:
Friday, when she was leaving, she said see you Monday. I said great; I don't want you to lose your hours but I do want to warn you I will be staying home that day, as I always do on St Patricks Day, to watch the parade on TV (well, not counting the few times we did go into the city or out to Montauk) anyway it's a big deal to me. Not to most people, but just something I like to do each year. A personal tradition, if you will.
So Monday, I'm somewhat annoyed at myself because I'd really l
We had the new nurse come by with the aide for the first time Tuesday, they were here for the two allotted hours just doing paperwork. First the aide had showed up at 9AM but I sent her away; originally we were given 10AM to 2PM although they promised to look for something later, Ray doesn't even start to get up until after 10. But then they tried to move it up to 9 to 1 and I said absolutely not, way too early, for him and for me (I'm up but I like my time in the morning to myself). They fo
After Pat's U-turn in January, Ray is finally assigned a new aide starting tomorrow but not at all what we were promised; we were approved for 4 hours, 3 times a week starting 11AM or later. But despite my telling them Ray gets up late (they're not allowed to leave him in bed), they tried to move the schedule even earlier, where she would come at 9AM. No way, that's MY time to get stuff done around the house. I thought older people usually got up with the sun, but apparently it's actually ra
So. We went to Ray's psychiatrist Tuesday for a previously scheduled appointment, but my only goal was to get him to send through the paperwork to Ray's Part D pharmacy company to approve the anti seizure drug he needs so desperately. Ray has no issues otherwise, although he will if he doesn't get this prescription. They told me they hadn't sent it in despite the urgency I claimed; then when the doctor finally saw us he tried to tell me that it is really a neurological doctor issue. This
OK this is for Sue, hope I don’t bore you all to death. Mostly all we have been doing the last two months is shoveling snow, and making big pots of soup and stews, but I guess a few other things have been going on too. Let me see…..
We had an interesting outing last Friday, during our temporary heat wave of 55 degrees. Ray was really looking forward to it; I had been pumping him up all week that we were going for a ride and a picnic on the beach, or to a winery for a glass or two. A
It's snowing here right now. We are only expecting a few inches, changing to rain tomorrow, but still a beautiful backdrop for my cookie baking this weekend. I have all the ingredients out, just waiting for Ray to get up so I can go full steam ahead. If being in the kitchen doesn't improve my mood, nothing will.
I have been jittery lately because it seems nothing can go right for us these last couple of weeks. Examples: An old friend sent a gift certificate to a restaurant in his Chri
Monday morning, bright and early, the nurse from our newly chosen agency came by to "evaluate" Ray for Long Term Managed Care aka LTMC (formerly known as the Lombardi Program to us, or Money Follows the Person to most of you). Turns out she was really just here to sign us up immediately, no qualifications required. But she was so helpful, she stayed for two hours, and I have high hopes for the future now, at least as far as homecare. She told me of things I should have been informed of long a
Still working on Ray's "Long Term Managed Care" choices, and we're finally close to the finish line. I called the two places that are connected with our Dominican Sisters agency, in which case they could still provide the nurse and social worker we already have. Who aren't the worst. One agency put me on hold for 15 minutes and never came back; and the other said she had no idea what I was talking about. Pretty much what we get from the Dominicans lately. We do finally have a great social w
I have been overwhelmed trying to get up to speed with our the Affordable Care Act fallout. Thought it would be so simple, wake up Oct 1, sign up, life would be grand. Not so! First, I entered my vital statistics, and it comes back, you cannot get any tax breaks, because you are $1,000 below "poverty level" (approx. $22,000). Well when you are living on one person's monthly social security, what do you expect? So they told me it's either Medicaid, or else pay full price for a regular policy
Ray has been doing some amazing things lately. Unfortunately they are usually inspired by anxiety or anger, but I’m finding that he is capable of a lot more than he lets on. I may have told you I found him in the bathroom, on the toilet, one day recently when I didn't come down right away? I asked him a few days later how he did it, and he showed me: He leaned on the handrail with his elbow to free up his one good hand and can open his pants by himself. He always wears jeans, even in the hospita
