Saturday, April 17, 2021

Slow Sunday Stitching, My News

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~!

19 comments:

CathieJ said...

Oh Karrin, my heart is heavy for you. I will keep you, John and your family in my prayers.

julieQ said...

OH Karrin. I am so, so very sorry about your news. Hugs and you are in my thoughts, and I am glad you shared, and please keep on sharing as you can; it can help.

Sarah said...

Karrin I'm so sorry to hear about your poor husbands worsening condition. I'm sending heartfelt hugs from across the pond.

LIttle Penguin Quilts said...

Dear Karrin, I'm so sorry to hear all of this. I've been thinking about you since you hadn't posted in awhile. Thanks for letting us all know how things are going. I hope you get the help and support you need to weather these next weeks and months. Sending you and your family lots of love.

Karla (ThreadBndr) said...

My heart hurts for you. I have been where you are with hospice more than once and please, please remember to take care of yourself and get all the help you can.

I won't say any of the platitudes, they don't help, but do know that I'm thinking of you and your husband.

Ivani said...

Oh Karrin, I am so sorry.
Sending prayers for you and John, during this hard time.

R's Rue said...

Beautiful photos.
www.rsrue.blogspot.com

The Cozy Quilter said...

I’m so sorry that John’s condition is worsening. It sounds like you have lots of support. When my dad was dying of cancer, i sat beside his bed and read or did cross-stitch as he slept. Just do whatever you need to do to get through this difficult time, and know that you are in my prayers. Sending a hug. Take care of yourself.

Cathy said...

Dear Karrin, my heart goes out to you, John and your entire family. The most important thing you can do is exactly what you’re doing - being there for John. Take care of yourself too! You’re in our thoughts... xoxo

QUILTING IS BLISSFUL, DI said...

I agree with Cathy above--and I am praying for you both and your family--
luv and hugs, di

Nancy said...

Oh, Karrin, what a hard, sad time--for both you and John. It's good you're taking time to just sit and be with him. He may not seem to notice but I'm sure his spirit does. Prayers for both of you whenever I think about you (which is probably more often than you might imagine).

Deb A said...

Big hugs to you! You are with him and that is the most important thing right now. I hope that you are able to get some outside help besides family so you are able to get some rest and some time to get out to take care of yourself. That is wonderful that fences were mended. Sending prayers to all of you.

nwpaintedlady said...

Hi Karrin ~ may thoughts and prayers are with you and your family. This has been a tough road with lots of bumps but sounds like you have done the best you can and have some more support now. One day at a time ~ hugs ~ lean on your family!

Kim said...

Lovely Karrin, as you sit with John and care for him, I will be thinking of you and your family, and sending many prayerful thoughts filled with much love. Xx

Jenny said...

So sad to read about your beloved husbands deteriorating condition. But he is home with you now, and please do get the help you need and are entitled to. Guess you can only take it one day at a time, spending your time being with him and making him comfortable. So sad, and I'm sending a big cyber hug from across the ocean to you both.

tubakk said...

So sad to read about this. Sometimes life is hard. Hope the best for you and your family. I recently noticed that you won a prize from Inflorescence blog. Please visit that blog to give her your address.

Gretchen Weaver said...

I'm sorry about your husband, it's good he can spend his last days at home. You need the help. Praying for you and your husband, God bless all your family!

Danice G said...

So sorry to hear of this Karrin, Praying for you all. Blessings.

Sue D said...

So sorry about everything you are going through.