Caretaking 102 - The Aftermath

I just spoke with him a few moments ago. He was seen - finally! - by an ostomy nurse. Stoma and healing seem to be proceeding on schedule. Bags have been changed. No instruction he can recall but this in and of itself is progress.

Latest development is that his most recent blood test shows that he has an infection. As far as I know, this did not show up in any of the other blood tests to date, including the one two days ago in the ER. However, it may be that nobody looked for signs of infection before. With all the recent talk of incurable infection, especially among hospital patients, this is what scares me more than the cancer, diabetes, dehydration, heart condition, and thyroid condition combined. We have found ways of controlling all the other medical issues, but infection??? (The neighbor's daughter referred to in my earlier post died of an infection she contracted in the hospital.) He has been placed on IV antibiotics. Hopefully, the infection has been caught in time for the antibiotics to work. Looks like an overnight stay is turning into a much longer hospitalization. I may need to set up an until further notice request for rides to the hospital to see him.

Peggy: As long as it is just me, I am not worried about losing power, even for the length of time we experienced with Sandy. Problem would be if he is back home by then and the storm plus aftermath prevented us from getting the services he will need when he gets home. Fortunately, the neighbors and the town know our present situation.

I know... I can Imagine how it would feel to have him home and lose power. That's what I was thinking of, too. Sorry if I wasn't clear.

Did the doctor identify the infection for you? They might be able to identify the bacterium responsible. What kind of antibiotics is he on? That might give you a clue as to how serious the infection is. Infections can come up pretty fast, so it might be something he picked up after the hospital. Don't jump to conclusions on that...

Hi Joan - Sending best wishes to you both to "weather the storm."

Would it be helpful (or for that matter possible) to have follow-up appointments scheduled with whoever is going to be providing home services (nurse or ??) before B is discharged, in addition to the phone numbers? Just to avoid delay due to set-up/processing time....

Hi Joan,

Just a quick note to say that I wouldn't assume a "much longer hospitalization" without knowing what type of infection he has and what antibiotics he needs. Certainly hospital-acquired infections have the potential to be more complicated and to require full treatment with IV antibiotics. But if it's not complicated, they may switch to oral antibiotics after a day or two, which could mean hospital discharge if he's otherwise stable.

Infection causes havoc with the blood sugar of diabetics, so this may account for some of his too-high numbers in this regard.

Anyway, hang in there! I wholeheartedly endorse the need to take care of yourself and take the opportunity to get extra rest.

Just got back from visiting him. The infectious disease doctor was there this morning and left his card. I wasn't there for the visit and Bernie does not know what kind of infection we are dealing with. I will call the doctor's number when I have a moment and try to learn what we are dealing with.

Next on my list is to call the home health care intake nurse who visited him this morning. I intend to ask precisely the questions proposed above but need to get my head together first so I can think clearly and absorb what each is saying.

He had a chaplain visit while I was there and one of the clergy from our congregation hopes to visit him tomorrow. He was starting a physical therapy session when I left.

With all that has happened since his initial discharge, I want to make sure he is stable and with an effective plan for treating him at home before he is discharged this time. I know our wishes on the subject aren't likely to be taken into consideration but we need to have a clearer understanding of what needs to be done this time so we aren't put in a revolving door situation.

I am posting a request for a ride to/from the hospital tomorrow and have asked Deborah and Sally if there is some way to post a standing request until I know when he is being released. Thank you to everyone who has volunteered to help and especially to those who have been able to help us thus far. I don't know if we need to keep the village a village but I certainly appreciate the village we have created here on MOL.

I don't want to overwhelm you with info, but Medicare has a lot of online information and guidance about discharge planning that may be helpful to you and Bernie. For example:

Quite frankly, I expect the hospital will be extremely careful about his discharge this time around. Reducing the rate of re-admissions within 30 days is a major Medicare quality improvement focus these days (and there are new policies to incentivize improvement in this area under the ACA).

mjh: Thank you so much for the links and I agree with the hospital being more cautious this time around.

I just got off the phone with the infectious disease doctor. According to him, Bernie has a urinary tract infection. This is what he was first being treated for from this past spring prior to the bladder tumor being detected so the UTI may have been there unresolved for quite some time.

The doctor does not yet know what kind of bacteria we are dealing with. He suspects one of the catheters Bernie had while in the hospital to be the source of infection. It should take at least 48 hours to identify the exact bacteria which is causing the problem. The doctor is fairly certain that Bernie can transition from IV antibiotic to pills but it will depend on how drug resistant that particular bacteria is. The lab will run drug resistance testing on the sample to determine if this is a possibility.

The good news is that he showing absolutely no symptoms that the infection is interfering with anything. Bernie remains alert and shows no signs of fever, chills, or any other debilitating symptom. From an infectious disease stand point, Bernie could be discharged as early as Saturday. However, this decision rests with the medical team assigned to Bernie's case.

A huge thank you to whoever put ride requests in the calendar through October 10th. Hopefully, they will not be needed for that long.

I remember that when my parents have been hospitalized in the past, one of the most maddening things was getting hold of doctors to get information. It sounds like things are moving along, so I hope that's the start of a good trend. Fingers crossed...

First time I opened this thread was just now, and I'm floored. When I last bumped into you at the Parkwood I noticed Bernie wasn't with you (for the first time I'd ever seen) but didn't think much and almost joked about it. I wish I knew. Anyhow, please accept my prayers for strength and all good wishes and extend the same to Bernie. If there's anything you need, especially late when others may be abedfor the night, please reach out.

ctrzaska: Thank you.

For those who may have missed it earlier, here is the link to the "Lotsa Helping Hands" community for Joan and Bernie:

If you'd like to help with rides or other needs that may be identified or just be part of the support community, you can click on that link to sign up.

Joan, just catching up on this thread.

My favorite metaphor for not feeling guilty about taking care of yourself comes from the airline safety instruction to put on your own (oxygen) mask first, and then help others. You can't help anyone if you expire.

A few years ago, my father was very sick and in the hospital and then rehab for almost three months all up. The one thing we found to be most valuable was to use a spiral notebook for keeping track of doctors, diagnoses, phone numbers, medications, etc.

Hoping to hear of improvements in Bernie's condition.

A notebook is a good idea. It can get a bit crazy with the information overload that happens when you are caring for someone on this level, so writing stuff down helps! I also have been known to use sticky notes and magnets to stick notes to the fridge.

Definitely the notebook....and, one of those accordion file folders where you can keep all records in one, organized place (bills, receipts, lab tests, handouts from various docs, copies of scripts, etc.).

You can record meetings and consults with your phone then send yourself then file to keep at home in a master folder.

There is a notebook beside me as a type this. I am using it to keep all sorts of relative notes. This blog is serving as notebook too since it is apt to be more searchable. We have been keeping a bulletin board for years that has appointment cards and business cards related to medical appointments and contacts. When we can, we keep the cards in chronological order so as not to miss anything. There are multiple copies of his medications including dosage and when he takes each on a clipboard so we can simply detach one before each appointment. Similar listings of surgical procedures, medical history, and directory of doctors were in the works when all this happened and will be completed as soon as he has the strength to provide the needed information so I can type something up and transfer it to a flash drive as well as producing a hard copy of each for duplicating.

He sounded so much better last night than he has at any time since this whole thing started. For the first time since the hospitalizations began, he asked when he could come home.

Lesson of the Day: When the cell phone is down to one bar and the phone freezes, removing the battery, reinserting the battery, and putting the phone on the charger will unfreeze it.

When lesson is not learned and followed: One has a dead cell phone which is of no help to anyone. Hopefully, phone will charge enough to be of use this pm.

Before anyone asks, this is a flip phone and cannot be operated on electric current or while in the charger.

Those of you who know me IRL know that I never use my cell phone. I'm lucky if I remember to charge it once a week. The cell phone is getting much more use now so more frequent charging is needed. A spare battery might also be a good idea and is on the list of things to do once things get back to being closer to the old normal.

Ouch. Fingers crossed that it charges properly for you and works.

The hospital just called. Bernie will not be coming straight home. They will be transferring him to a rehab facility possibly as early as today. I will know more when I get to the hospital later today. If anyone reading this has any recommendations as to a good place for him to go, or a place to avoid, please post here. Aim is to find a place with an available bed somewhere in Essex County.

Back in 2012, my mother spent some time at Summit Ridge rehab in West Orange after surgery for a broken femur. It wasn't luxurious, but it was clean, the staff was attentive and pleasant and the food was quite good. Her rehab therapist was so kind and helpful and very, very upbeat, which made a big difference for Mom. Here's their website link:

I've also had friends who went to South Mountain Rehab on Springfield Avenue down by Home Depot and they were all happy with the care and with the facility. We had looked at it when we were going to move Mom to a more intensive nursing home environment (she needed more care than her Memory Care facility could provide). It looked very nice, had good ratios of caregivers to patients and good retention rates on its staff. However, Mom passed away before the move could happen.

Both of these are pretty close by and not difficult to get to, if that factors into your choice.

edited to add: Joan, it shows as Genesis Summit Ridge on the list you've just posted below. Sorry, I didn't realize that South Mountain is in Union County, so it won't be a candidate for your husband.

Skilled Nursing Facilities in network include:

Canterbury at Cedar Grove

Care One at Livingston

cedar Hill

Chancellor Specialty

Daughters of Israel

Genesis Arbor Glen

Genesis Summit Ridge

Genesis Waterview


New Vista

Newark a health and Extended Care

Park Crescent

St. Cloud

ST. mArys

St Vincent's

Van Dyk Manor

West Caldwell

White House Healthcare

Windsor Garden

Thank you to the person who sent the PM recommending Daughters of Israel and recommending against Care One. Looking at the website, I see there is a facility in Vauxhall near Home Depot which is called South Mountain. It seems to have an excellent rating from and would be within walking distance for me. Any feedback on that facility would be appreciated.

I had to give the SW a short list of places to send him. In order of preference they are: South Mountain HC, Inglemoor Rehabilitation and Care Center of Living, and Daughters of Israel. If anyone can provide positive or negative feed back on any of these places or has a better suggestion, please let me know ASAP. I will start a separate thread in Please Help with this specific request.

Joan, If you look above, Cody gave some positive thoughts about South Mountain.

I've also known people who've done short stays at South Mountain who were overall satisfied.

Wish I could advise, but my only experiences with rehab are not in NJ. I hope he ends up in a wonderful facility and makes a speedy, complete recovery.

I'm not Jewish, but I sent my mom to Daughters of Israel, and they were great.

Social Worker just called. Bernie has been accepted at South Mountain in Vauxhall. They have a bed for him. I still don't know when they plan to move him. I will post here as soon as I know. Hospital will arrange for transport. Thanks to all who gave positive feedback on the facility. Best of all, assuming decent weather, this is walkable for me.

That sounds like very good news! Onward and upward, and I'm glad you can get there on foot. grin

Cody: South Mountain is an acceptable placement for my husband. The social worker gave me a list of possible placements which was limited to Essex County only because she didn't realize we lived so close to the Union border. He was accepted there and plans are in the works to move him.

Oh, that's good that it is available and so close for you. I would have been completely happy if my mother had gone there because I liked what I saw on our visits very much. And all of the personnel I spoke with were very nice and welcoming and caring. I hope your husband's stay meets all of his needs and that he has a speedy recovery and a good experience there.

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