kestrell: (Default)
Alexx got home around dinnertime last night. M. fed him some bacon--not an evil carb--and he went to bed, hopefully to get lots of sleep, which did not happen in the hospital.

I am now adamantly opposed tot he way patients are pressured into going to rehab centers. The pressure is couched in terms of recommendation, given promises of additional physical therapy hours (which do not get fulfilled), and assurances that the patient will be delivered home in an ambulance. Be aware: rehab centers offer profit for other companies.

As soon as the patient rejects the rehab center, the hospital can't seem to get rid of him fast enough. The hospital caseworker wouldn't give us any solid date or time for Alexx's release, and about 4 I had resigned myself to the fact that he wasn't going to get released yesterday at all.

Then at 4:30, Alexx called to say that he was being released, but no information on how he was to get home.

It turns out, they wheeled Alexx to the exit in a wheelchair, gave him a voucher for an Uber ride home, and that was it.

Fortunately, we have housemates with a car who came through and drove Alexx home.

But he *is* home so, hopefully, now he can get lots of rest and spoiling and non-carb food (yes, the hospital kept feeding the diabetic high-carb meals and then berating him for his high blood sugar while giving him insulin injections).
kestrell: (Default)
The hospital caseworker gave a hard sell for Alexx going to a rehab center, almost presenting it as the only choice (someone less knowledgeable about healthcare rights might have read it that way), but Alexx was unmistakenly vocal about going home, and I presented all the reasons why he would be better off at home, so the caseworker finally had to back down and admit that visiting nurses and physical therapists could work with him at home. But it was a fight.

The past year of advocating for healthcare rights for PWD really served us well today.

Also, hearing stories of personal experiences from disability rights advocates regarding their treatment in rehab centers persuaded me that few ppl are better off going that route.

But, yeah! Alexx is coming home! No solid details yet--I get the feeling the caseworker has to refill all the paperwork--but he will be delivered by ambulance, hopefully later today.

Also, Alexx is walking by himself, at least the short distance to the bathroom, without a walker and without assistance.
kestrell: (Default)
Yesterday someone from BMC called to ask a bunch of questions about our house and home but, when I asked if Alexx was going to be discharged today, she immediately said this wasn't her case and the caseworker would call me "at some point" to give me details and, of course, I have yet to hear from this person.
Meanwhile, ppl at the hospital have mentioned sending Alexx to a rehab center, but have not confirmed any details.
I have heard about rehab centers from other PWD on the health care advocacy group I am on, and all the stories of personal experiences are negative.
I'm beginning to get the impression that a big reason for the rehab center idea is that I, as Alexx's blind wife, am considered to be incapable of caring adequately for hin.
Have passed through the angry phase to the "you have no idea who you are talking to" phase.
Bottom line: Alexx isn't getting very much sleep, or even rest, with all the hospital noise and disruptions, and when he presses the call button, it isn't always answered. There is no way that he wouldn't be better off at home.
But rehab centers are part of the business model of public health care, rather than visiting nurses and physical rehab ppl who work with ppl recovering at home
This system is broken..
kestrell: (Default)
Alexx's surgeon called a little while ago to tell me that his gurgery went really well...tho there's always the chance of stroke or bleeding.

Alexx isn't awake yet, so I'll post again when I hear from him.

My care coordinator at Tuft's was really great: when I told her that Alexx was having his surgery today, she facilitated getting a ride to the hospital for me for Sunday, and I could just call for a return ride whenever I wanted.

My PTSD has been rearing its head today, so I'm finding it hard to concentrate or really speak much, but I'm able to do short sentences. Mostly I've been alternately cleaning things and huggint the plush coyote Alexx gave me for Christmas. It's difficult for me to get really depressed when I'm hugging Coyote.

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