A lot has happened since the last time I checked in. I have not done much slow stitching or any other kind of stitching. I thought I would pop in here and let everyone know what is going on.
The little stitching I have done, and what I might be working on for Slow Sunday Stitching is this tea towel. I was going to do it for the In the Kitchen Blog Hop coming up soon. There was no way to transfer the lines to the tea towel, so I used the Sticky Fabric Solvy which you run through the printer, and washes away. With the weight of the tea towel, and this Solvy, it makes it difficult for me to stitch through. I have stitched the Back off, and part of the back and head.
I'll be linking up at Kathy's Quilts for Slow Sunday Stitching. Head on over and check out what everyone has been working on.
Okay for what has been going on here. I think the last time I checked in was Easter Sunday. John was admitted to the hospital April 1st, spent the 5th, his 78th birthday in the hospital, and was released April 12th. They told me had a urinary tract infection and blood infection, then the blood infection was contamination. Filled him full of 5 antibiotics, tons of bolus fluids, and his whole body blew up like a balloon. Did a heart scan to make sure he didn't have a heart infection, did a scan of his liver because his liver function tests were up, but he has a fatty liver and that is nothing new. He lost the ability to feed himself, is now incontinent. He is unable to do even more for himself than he was before.
An interventionalist came into his room on the 11th and told me he was going downhill and wanted to know what the family wanted to do with him. He was sleeping almost all day. I was feeding him all three meals. When they did his scans he had to be fasting after lunch, and they were going to do his scan at 8 pm that night. I go back in the next day, he is still fasting, there were a bunch of priority ER patients. He finally got 2 scans about 6 pm the next night and when he got back to his room his dinner was cold, and the kitchen was closed. He was not responding in any way to recover from this. One day a neurologist came in to see him while I wasn't there and said there wasn't anything neurological wrong with him, he was just deconditioned.
If the neurologist had bothered to call me, or come while I was in the room, I could have pointed out that my daughters and I could have pointed out that we had noticed that he has almost all the symptoms of ALS or Lou Gherig's disease, and has been steadily declining for 3 years now.
I asked if he had less than 6 months to live and they said yes. I told him I wanted to bring him home with home Hospice, so that was arranged. I stayed up late 1 night so Hospice could bring in their own bed so he could come home the next day. An intake nurse interviewed him and my daughter at the hospital, while one simultaneously interviewed me at home.
These are part of the discharge instructions I received home from the hospital. I asked specifically if he had a blood infection, and they said it was a contaminant, he didn't, yet they list bacteremia as a diagnosis.
These are the diagnoses obtained from the Hospice intake notes.
The heart failure we knew nothing about. The atherosclerosis we did, he has 6 stents placed a number of years ago.
Chronic respiratory failure with hypoxia. He has been coughing really badly for the past three years and we thought it was asthma. No wonder the inhalers didn't work so great.
We knew nothing about cor pulmonale until 2 days ago, when I heard the hospice nurse say his diagnosis was cor pulmonale. I was a medical transcriptionist for 35 years, and I do know this is serious, right-sided heart failure due to complications from high blood pressure in the pulmonary arteries.
So John is home with Hospice nurse coming in 3 times a week, as well as a Home Health Aid 3 times a week. I have about 4 days a week I need help in the mornings with. When he had his hospitalization in November I heard about a resource center that had grants to hire caregivers, and I never took advantage of. A chaplain came in yesterday, talked to John briefly and then motioned for me to come out in the other room. He said that I needed to hire help NOW, no looking around, just hire someone to come in the other 4 days. Most agencies want a minimum of 4 hours, but the social worker found one that will come in for 2 hours. We are supposed to be evaluated on Monday to see if we qualify. If we do, we have enough funds to last for 44 two hour visits.
He also gave me a little booklet that lays out what happens months before death, weeks before death, days before death which is very informative
We are taking it day by day. I am not able to be able to think about anything, have not sewn anything for 2-1/2 weeks now. I usually sit by his bedside and read or play my word games.
He is barely eating anything, or drinking. His oldest daughter from another marriage came in today and is visiting for several days. We have been estranged from her for a number of years because of a miscommunication. She used to just drop by (She lives about 6 hours away). The last time John saw her he told her to give us some notice she was coming. She and I talked tonight and she thought he said never come again. So at least that has been mended somewhat. She talked to him tonight, and talks about what she always loved doing with him and happier times. I met John when she was 6 years old, her parents were waiting for the final divorce decree and her mother had moved another guy in.
John's brother Roger will be flying in on Wednesday. Our girls are visiting almost every day and spending a few hours.
So I just wanted everyone to know what I have been up to. I just can't think about much of anything right now except caring for John and spending time with him. I'll pop in when I can think straight.
Below are a few pictures of when I met John, and a few from recent years.
Thanks for stopping by~!
