What you are about to read is not for sympathy, because I don't need or want it. It's a way for me to put into words, the things people might like to know about that is going on in my life.
It all started on a Friday in March, 2007. I was at work so I don't really know exactly what happened. I can only go by what Chuck told me. When I got home from work that afternoon, Chuck was sitting on the sofa in his usual place, but I could tell something wasn't quite right. He said he had fallen in the living room and hit his left hip on the edge of the coffee table. (note to self: never have another coffee table) He said he hit his head on the laminate wood floor and really hurt his lower back. He actually couldn't walk without me helping him. He wouldn't agree to go to the hospital and I knew we couldn't get into our chiropractor till Monday. So, I helped him walk in the house by having his hands on my shoulders, my hands on his waste, while I walked backwards. We did that all weekend going to the bathroom and to bed and back to the sofa.
On Sunday morning before we got out of bed, I noticed he was slurring his words just slightly and using words that didn't fit the sentence. I didn't think that much of it, just racked it up to not being fully awake yet. But, when I helped him walk to the sofa in the living room and sat him down, I noticed the droop on the left side of his face. Oh no! I told him I thought he had had a stroke. Of course, and no offense to all the men out there but, men are the world's worst about being in denial. Chuck asked for a mirror and could see the droop but still didn't want to admit it. I really didn't blame him. I went to take a shower because I knew that we were going to have to go to the hospital and I didn't know how long we would be there. Once I was dressed, he had decided that he was ok with going to the hospital. I drove him myself instead of an ambulance.
Of course, the hospital ran all the test and sure enough he had had a mild stroke on the right side of his brain. But, the issue was the staff at the hospital didn't get him up much because of the lower back injury. He was there a few days and the doc came in and tried to get Chuck up out of bed and couldn't. But he had no idea how to properly get him out of bed either. His suggestion was to put him in a nursing home because he thought if I took him home, he would just lay in bed and die. Well, I knew my sweet hubby better than anyone. I knew that after a stroke you are in what's called a stroke fog, where you don't think just right. Sometimes it takes a little while to come out of it. So, I said no, I'll take him home with me. I knew that if he came out of that fog and realized he was in a nursing home, he would curl up and die. If I could get him in his recliner, with his puppy dogs with him and the remote control in his hand he would be just fine. He did stay in bed and shut the world out for a couple of weeks, then ventured out to get back into the real world. He just about fully recovered from that stroke. The only issue was short term memory loss. With a lot of help from our physicians, we were able to get enough test done and documentation to get his disability. A God send.
We went along fine until December of 2014, when he had another stroke. This one was worse. He had to go through rehab and was able to come home walking with a walker but not comfortable enough to be by his self while I worked. So, I quit my job and stayed home with him. He did pretty good with getting around and we went to Church and out to dinner some.
Then, October 2015 came around and another stroke, again on the right side of his brain. He again went through rehab and came home able to walk with a walker and get around pretty good.
And, we move to January 12, 2016. A red spot showed up on the left side of his abdomen with a little spot that looked like a spider bite. So, I cleaned it and applied antibiotic ointment. The next day he was a little weak and the red spot was bigger. I suggested the hospital, but he said no. The next day, January 14, 2016 was our 38th anniversary and he was a little weaker. I needed to run to walmart to get something for him and when I came back in the door, Chuck said I think we need to go to the hospital. So we did by ambulance this time.
He hadn't had a stroke or a heart attack, but was in renal failure and they weren't sure what the red spot was. Upon admission, his kidney function was 13% At 15% they put you on dialysis for life. But the doctor said let's not go that way just yet because all of his electrolytes were in the perfect range. So they put him on some super strong antibiotics and flushed his kidneys with mega IV fluids. It worked, in four days he was at 69% functioning. They were thrilled. They had also done two CT's two different days, to see if there was an abscess under the skin that was causing the red area. Nothing showed up either time. So, they wanted to send him to a nursing home just to do rehab as they are a little less strenuous and it would be better for him. He was transferred to New Horizons on a Wednesday evening. He did ok, but not as good as I thought they would do with him. On Tuesday, three small white dots showed up in the middle of the red area on his abdomen. The nurse took a pic and sent it to the doc so he would know what it looked like. He was due in the next day to visit. I got there Wednesday morning and the area had come open and was draining. When the doc came in right after me, he told his nurse, to transfer to the hospital as Chuck needed emergency surgery. So off we went flying. They did surgery in the middle of the night and I did get to see him afterward to make sure he was ok. His bandage was huge, which meant the surgeon had to cut a very large incision.
Once I got to see the surgeon the next day, I found out they did a 13" incision and took out a quart of stuff from the cavity. He left the incision open because of Chuck being a diabetic and diabetics don't always heal that great. His thought was if he left it open, it would heal from the inside out and just in case more infection showed up inside, they wouldn't have to operate again. And infection did show up again, so it's a good thing he made the choice he did. On Thursday and Friday, they had to unpack and repack the incision three times a day. On Saturday and Sunday, only twice a day. Monday came and they packed the incision with a sponge material and attached a wound vac. It was awesome! That meant, it only had to be changed on Monday, Wednesday and Friday. Much less pain for Chuck. But on Sunday morning before the wound vac was put on, I got a call from the hospital needing permission to do some test on Chuck because they believed he had had a stroke. Once all the results were in, it was determined that he had had two small ones on the left side of his brain that affected his speech and a major one on the right side of his brain. Oh no, here we go again.
But, the hardest day was on Thursday of the same week when the docs came in and said there was nothing else they could do for Chuck. I had the option of putting him in a nursing home or taking him home with hospice. But, I said he's not dying, they said technically he is. Every vessel from the neck up was just about 100% blocked and his heart was only functioning at 25%. Talk about shock! I still can't get my mind totally around all of it. My decision was of course to bring him home. My youngest son and I talked to Chuck and gave him a say in the decision. He wanted nothing more than to come home, so home it was.
A hospital bed and accessories were delivered on Friday night and Chuck was delivered by ambulance on Saturday afternoon. It was so nice to have him home after being in the hospital for a solid month. Even with the circumstances, it was nice. I didn't have to be at the hospital before daylight and then not get home till after dark every night. The hospice admission nurse came in and got every thing set up with meds and supplies to change his bandage dressings twice a day. Yes, I am doing that, no big deal, nothing grosses me out. lol
I told everyone that if they wanted to see Chuck, they needed to do it now, because with the vessel blockages and his heart not working properly, he could have a massive stroke or a massive heart attack at any time. So, we have had lots of visits from old friends and lots of family. It has been really nice to see everyone. Our Church friends come by too, they are super.
Everyday is a regression for him, which is to be expected. He has stopped eating, but still drinks liquids. All his meds have to be crushed and given with a bite of pudding. He has a foley cath, so it's easier to keep his bed linens clean. I do have a home aide that comes in three times a week to bathe him and to change the sheets for me. She is an angel! The nurse, social worker and chaplain come by too, which is nice.
I get to spend all day with Chuck but when I need to go outside for some fresh air, I have a baby monitor so I can hear if he calls my name. He really doesn't need a lot of hands on care, but trust me, I keep my hands on him.
With him home, it gives me time to do my freelance writing work, which I will continue even after Chuck passes on. I really don't want to go back into the corporate world to work. I have other options here in my neighborhood that will be work related too. Part time of course.
So, for now, I just live day by day and watch my sweet hubby drift farther and farther away from me. I have had a hole in my heart since that Thursday in the hospital, knowing that his life would end sooner than either of us thought it would. We all know that everyone will die at some time, but you are never prepared for it to be your spouse, especially at such a young age. How do you say goodbye? Will I remember how his touch and kisses felt? What will I do with myself? I know I have my puppies, cats and other pets that will need my attention, but it's just not the same, as you can well imagine.
This journey has been 9 long years and still going. Today is six weeks from the time he went into the hospital on our anniversary. He has been home from the hospital now 12 days. We keep counting and enjoying each day, no matter how hard it is. Most nights I don't sleep because he don't sleep, but I can't really sleep during the day, as I want every moment I can get with him. He sleeps a lot but that's ok, He's still here with me for now. I cry at the drop of a hat, shoot, you don't even have to drop a hat, I just cry most of the day and night. I know when the day comes, I'll crash and burn and hopefully get some much needed sleep. I think my ADD keeps me going most of all. My brain never stops thinking of things to do and keeps me awake. I never thought that would be a blessing.
So, cherish every moment God gives you with your loved one. You never know when that time will come to an end.