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About this blog

Just my wandering thoughts

Entries in this blog

Words can't describe

Dan's surgery was a month ago and he's been in a nursing home for rehab for two weeks. I've seen Dan frustrated, angry, tired, connected to machines with tubes going into and out of his body. I have never, in 36 years, seen him this mean and hurtful. Not just to me, to everyone. He is verbally abusive to everyone at the facility, to Jeff, and to me. He never used to curse and now it comes out of his mouth like the air he breathes. The F word is now used as often as any other word coming ou

MaryJo

MaryJo

Winter is here and I'm going to Florida!

Dan is in bed, has been since 6:00pm. I'm just sitting here messing around on the computer and doing nothing productive. I've had a good day. Got a massage, had my teeth cleaned, and did a little shopping. Dan sleeps a lot more lately. He's ready to go to bed by 3pm and I have to tell him NO, it's too early. Of course he argues. It's so hard telling someone who was such a strong independent man that he can't do things, like go to bed at 3pm, eat candy bars all day long, spend $20 on break

MaryJo

MaryJo

What was I thinking?

Spring has finally made it to central Indiana. The sun has been shining for two consecutive days!! Indiana winters are very drab and dull. It's interesting how everyone's mood changes with the sun. I was in the grocery yesterday and everyone was smiling. I've gotten a little yard work done but it needs to be just a little warmer before I can plant some of the annuals Dan has purchased. He still has all of these great plans of things he's going to do in the yard, he just forgets that he can

MaryJo

MaryJo

Weeds, weeds, and more weeds

I thought this title seemed appropriate when I re-read the one I posted about mud. The mud was replaced with grass seed. The spring weather was replaced with mid-western heat and humidity. The new grass that was looking pretty good is now replaced by weeds that love and thrive in the heat and humidity. Every morning and evening I water my weed gardens. lol There is some grass that's thriving. I talked to our lawn guy (never in my life did I think I'd have a lawn guy!) who tells me that th

MaryJo

MaryJo

Vacation will be over soon

Dan is doing so much better. He's holding his head up and sitting up straight in the wheelchair. This last week he's even started eating some. He still won't eat the food at the facility, but he's started talking about food so I've started taking hime some meals. We even went on a short outing yesterday. His Medicare days will be gone in two weeks. I need to make a decision about leaving him there for a bit longer or bringing him home. He's much stronger than he was when he went in but I

MaryJo

MaryJo

Time passes too quickly

I can't believe that it's almost December, where has the year gone? It seems as if I just got the Christmas tree boxed up and stored in the basement and yet it's time to get it out again. The retailers moved straight from Halloween to Christmas and I just can't seem to get into a holiday mood. Maybe it's the weather. It's been much warmer than normal in central Indiana. I'm not complaining, I could take 50° to 70° temps year round.   I had foot surgery a week ago and I'm just now hobbling

MaryJo

MaryJo

Successful surgery

Dan's surgery was two days ago. Surgery was successful and, so far, he is doing very well. They have him in a monitored room, not ICU, where they can watch his heart and breathing. The nurses and aides are all so good to him. He started flirting with them as soon as he was out of recovery. lol The doctor says he'll be in the hospital probably 6 or 7 days. First guess is that he'll come home straight from the hospital and get in home rehab. I really hope so because I really hate nursing ho

MaryJo

MaryJo

Rehab, deja vu all over again

Dan was discharged from the hospital Wednesday, 3/30. He's now in a rehab facility. He totally doesn't want to be there and lets it be known to anyone who is within yelling distance. He's so weak that they have to use a Hoyer lift to get him out of bed. His back hurts really bad every they get him up because he's been flat on his back for over two months. I think this place is going to work. They get him out of bed for every meal and he goes to the dining room to eat. The only exception i

MaryJo

MaryJo

Recovery is a rocky road

Dan was moved to ICU Sunday evening. He was having a lot of problems breathing, his BP was up and down one hour 175/?? the next 85/?? he was hallucinating very badly, trying to get out of bed, refusing to let anyone help him, resistant to anything and everyone. He's been on a ventilator since Sunday and heavily sedated. Just talked to the nurse and he's off all sedation and they're taking the breathing tube out this morning. Time will tell.   I keep wondering how much more he can take. I

MaryJo

MaryJo

One day at a time

Dan is still in the hospital. They just can't get his ulcerative colitis under control. They started him on Remicade infusion on Wednesday. He will have three infusions in six weeks then he'll go on maintenance which is an infusion every 6 to 8 weeks. If this doesn't help control the UC the next step is bowel resection surgery.   He was doing so well on Friday. We transferred out of bed and on and off the toilet and he did great. He was weak, but we did it and we both felt good about it.

MaryJo

MaryJo

New facility

Dan is being discharged from the hospital to another facility today. Last week was absolutely horrible. Dan was turned down by 3 facilities because of VRE. The rankings on medicare.gov are so misleading. In February I chose a 4 star rated facility who didn't monitor urine output and his kidneys almost failed. This time someone recommended a 1 star rated facility and I very cautiously checked it out. It seems like a very nice facility. Their rehab area is state of the art. They have hydro

MaryJo

MaryJo

My Life

Dan's been gone six weeks now. His memorial mass was a week ago. I was so very touched by the number of people that were there. Two of his high school classmates (graduated 50 years ago), a friend from Tennessee, friends I worked with 40 years ago, neighbors, a lady that I baby sat for her daughter 50 years ago, brothers, sisters, niece, nephews...oh my! The "church ladies" put together a luncheon after the mass and family came to the house after the luncheon. The in-laws left for home the

MaryJo

MaryJo

Mud mud and more mud

Dan is showing improvement. He's holding his back and head up now, not much, but for him a big improvement. I've felt a little optimistic this last week. I still don't know if he'll be home or not. There's a long way to go before he can stand and pivot like he did before. He's so fragile.   We had so much rain during April that the yard was too wet for landscaping and grass seed. We finally had several dry days so the landscaping and grass seed finally got done. Just as I feard, the wea

MaryJo

MaryJo

Much better

Dan's surgery went very well. It took 6 hours, 2 hours longer than expected because his colon was so diseased. The first things he said when I saw him in Recovery were: 1) I surprised everyone, I didn't die 2) I'm hungry and 3) When can I have Chinese? All of the docs who have seen him are very pleased, if not a little surprised, by how well he's doing. He's been so frail for so long everyone was very concerned about the surgery outcome. He even had solid food yesterday and scarfed it down

MaryJo

MaryJo

Meltdown

I had a bit of a meltdown today. It happens occasionally. If I wasn't through menopause I'd say I had PMS! lol   Dan's caregiver was out sick Monday and Tuesday so I was on my own for two days. I had forgotten how tiring taking care of him all day can be. With Jeff out two days and because of doctor appointments I hadn't had any time to myself since last Friday. So today it caught up with me. After spending an hour on the phone with the insurance company trying to find out why a drug t

MaryJo

MaryJo

Lazy Sunday, feeling sad today

Our weather has changed drastically. We've dropped over 20° in the last few days. I love the cooler weather, I just wish the sun would shine. I started my day with plans of cutting back the daisies, cleaning up the day lillys, and pulling weeds. All of the above are about two weeks overdue. None of them got done. This morning I was sitting in the kitchen reading the Sunday newspaper, drinking coffee, and planning my yard work activities. Then I started remembering Sunday the way it used to

MaryJo

MaryJo

Just Me

I'm having a problem not thinking of things in terms of "us" and "we". I'm doing blah blah to the house vs we're doing blah blah to the house. Need new kitchen chairs, what style, what color, how much to spend. Sounds silly, but I've been half of a WE team for a long time. Even though the last four years I've made all the final decisions, I still asked for Dan's input...good or bad...Dan's color choice for kitchen chairs would have been purple (no, we're not getting purple kitchen chairs). T

MaryJo

MaryJo

Just another day

I never really know what's going on with Dan. For two weeks he's been very lethargic, seems to have lost his appetite yet again, and could sleep all day. I was sure he had a UTI. Finally got a urine sample, which is NOT easy for someone when he can't go "on demand" as he tells me. Results came back negative. Then yesterday he passed a couple of blood clots from his rectum. He has no colon so it really concerned me. GI doc said to get him to the ER. Five hours in the ER with blood samples

MaryJo

MaryJo

It's not better yet

So much has happened since my last post.   Within one week of being in the rehab facility Dan had pneumonia in both lungs, sepsis, and he was so dehydrated that his kidneys had started to fail. Thank God they got him to the hospital and ICU quick enough that his kidneys did not fail. He's stronger and eating again.   Here's the short story of what happened. The doctor ordered a picc line on Friday because Dan's BP was 70 and he was very lethargic. I was assured that he would be getti

MaryJo

MaryJo

It's been a while

So much has happened since my last blog.   On 5/5 the doc at the ECF ordered the same antibiotic that he had prescribed three weeks prior for Dan's UTI. What in the name of heaven made him think that the drug that didn't work three weeks ago would suddenly work now??? I had a hissy fit and requested another physician. The new physician reviewed Dan's chart and the next day Dan was sent to the hospital. Four days later he was transferred to ICU with pneumonia in both lungs and sepsis. His

MaryJo

MaryJo

It has to get better

Last week was horrible and it's continuing this week.   The Cliff Notes version is that I got a stomach bug and was sick as a dog. Dan was to be discharged to my rehab of choice on Thursday. On Wednesday I called the docs office regarding Dan's next Remicaide infusion which prompted the docs office to call my rehab facility of choice to see if they could do the infusion. OMG what a fiasco. Apparently Dan's eval was completed prior to his first infusion of Remicade, so the drug was not on

MaryJo

MaryJo

Incredibly Frustrated

Dan's still in the hospital and not much has changed. We're in the middle of an ice storm so I didn't make it to the hospital today and probably won't tomorrow.   The GI doc yesterday said Dan has Toxic Megacolon. I googled it and it kind of scared me. Basically it means that the colon is distended and nothing can pass. It can be life threatening and frequently results in a permanent colostomy. When I called Dan he said the doc had been in to see him. He said she told him they didn't k

MaryJo

MaryJo

I have a headache

This has been a horrible day. Started out OK but then went down the toilet pretty quickly.   I slept in today, woke up at 7:30am and just flat out didn't want to get out of bed to face the day. I finally prodded myself out of bed at 8:30am. I sat down at the computer to pay some bills and do some filing. Instead I found other things that just had to be done before bills. Silly things like defragging my hard drive, cleaning out email, forwarding stupid jokes. I'm sure that you get the ide

MaryJo

MaryJo

I get so tired of everything...

Sometimes I just want to walk out and never come back. Sometimes I think my brain is shutting down. I've been on a bit of a crying jag this last week. It started a week ago last Wednesday when Dan started having severe lower abdomen pain right after I got into bed. I got up and nothing would alleviate the pain and he didn't want to go to the hospital. Finally after three hours of moaning and groaning in pain he agreed that he needed to go to ER. Called 911, sat in ER until 5am when he was

MaryJo

MaryJo

Happy New Year

I've been wanting to start a blog, I so much enjoy keeping up to date with everyone by reading their blogs. New years day seemed like a good day to start. So, here I am, although I really don't have a lot to say.   Today has been a very good day so far. We both slept well last night. I slept in until 7:30 this morning! We are still on schedule to move in 9 days. Dan's not been in the hospital for one whole week now. He was in the hospital three times in three weeks. Sounds horrible, but

MaryJo

MaryJo