Tuesday, April 18, 2017

Grief And The Could-Haves And Should-Haves

My dad passed away at 2:26 AM, Wednesday, April 12th. I received the phone call telling me this at 3am. His passing was not a surprise; my sister and I lingered at his hospital until late into the night expecting that he would go at any minute. We didn’t want him to be alone. Eventually exhaustion won out and we left him in the care of the wonderful night shift nurse who set up her little computer station right outside his door.

To be honest, that’s the way it’s been with my dad and his illness. I have felt like I missed the mark by just a little bit in almost every way. He slipped into Alzheimer’s disease before any of us really noticed. Dad was always a very independent man who took care of his own things. He came down to visit from Kansas a couple of times a year, then once a year, then his visits stopped altogether. We all assumed it was because his eyesight was getting bad and he didn’t want to drive anymore. That’s what he told us. In reality I think Alzheimer’s was already starting to do its insidious, destructive work in his brain.

We still talked on the phone regularly and he seemed okay. My family went and visited him in KS a couple of times. It was difficult because his house was very small so we could not stay there and hotels were expensive. We didn’t go as much as we should have.

We all started to notice he was asking the same questions over and over on the phone. We began to worry. Then the phone calls started; from his brother who lives near-by, worried he was no longer leaving the house, from my brother worried he was not acting right, and then finally the car accident where he ran a stop sign and hit someone. We knew it was time. In fact, we’d waited too long.

My sister, mom, and myself went up to take him to the VA doctor, and to try and see a lawyer and find out how to get the ball rolling to get him some help. It was such a strange trip because it was not quite what we expected. Things actually seemed okay. The house was clean, my dad looked good, he didn’t seem too confused that day, at least not to the degree I’d expected. We must have hit on a good week. We got some of the appointments done and had a fairly nice time with my dad. It was an odd day to be sure.

We didn’t get everything accomplished that day that we needed to so Dave and I went back up a couple of weeks later. This is a trip I will never forget. Dave and I showed up that morning after getting up at 4am to make the 6 hour drive. We told Dad we were coming to help him get some paperwork done. Our goal that day was to get my name on his bank account and legal documents, to see an Elder Care lawyer (our first trip to the lawyer had not gone well), and to take him to a doctor’s appointment at the VA.

When Dave and I came in the door he was sharply dressed, just like he always had been. He was a Marine after-all. His dress pants were nicely creased. His collar shirt was properly tucked in and his pants were belted with the same quality leather belt that matched his favorite loafers. However, his clothes were stained and had clearly not been washed in some time, he had not shaved or bathed in a while either. I was looking right into the face of Alzheimer’s and it was like a punch to the gut. It was so very clear my dad needed help and where had I been? I didn’t go visit him enough. I could have gone more.

Thus began the new normal with my dad. With the help of a very good Elder Care Lawyer here in DFW we managed to get all of his affairs in order and get him moved to DFW and into a Memory Care unit. He was in three different facilities while he was here. The first was a wonderful place that I wish we could have left him but he ran out of money for it. We knew that would be the case eventually as it is with all long-term care patients. While he was there I would go visit him pretty regularly. Friday they had ice cream and dad really liked that so my girls and I, or sometimes just myself would go there and sit with him and eat ice cream. I tried to make my way there at random intervals and times. I didn’t go visit him there enough. I could have gone more.

In his second home I visited him even less. It was over an hour away from my house. We moved him to a facility up nearer my mom and sister. It promised to be a good place and when we moved him in, it seemed to be. It seemed like a happy place with lots of activities and kind people. My mom had a little more time on her hands then and my sister was nearby and they were able to spend more time with him there. While he was in this place he got an infection, which is common in the elderly, and lost a many abilities. He lost most of his language, going down to about 5 or 10 phrases. He lost his ability to walk, and I don’t think he recognized any of his family after that infection. Unfortunately, his level of care also declined in the year he was there. I’m not sure what happened. I suspect a change in management because I noticed the amount of people there, staff and residents, began to dwindle. Eventually it became clear he was not getting proper care so we began the search for a better place. I did not go visit him there enough. I could have gone more.

We moved him to a place near me and I am happy to report that his care there was excellent. I got to know the people there by name and they knew mime. I brought them treats and said thank you repeatedly for all the work they were doing for my dad. They were on top of his health and called me every time there was even the slightest problem. He was happy there. My mom worked hard to get him a specially made wheelchair and it was very fancy. He received it shortly after he arrived in this new facility and the workers there called it his Bentley. He was ‘Donald, the man in the Bentley’. That made me happy. They never left dad in his room but got him up every day and put him in his Bentley and put him out in the main area where all the action was. He seemed to like to be a part of the action. The Activities Coordinator always took him in the room when they were doing the various activities that she’d planned even though he could not participate. It was good for him to be near the action. I’m grateful for the loving care they gave him there.

Because this place was so near me and on a main street I passed several times a week I was able to see him more. I had a set time, Thursday mornings, when I would go visit him. I would take him to a quiet corner or outside if the weather was nice, or sometimes if I were a bit later I’d sit and eat lunch with him and a couple of other residents. At first we’d talk, or rather I’d talk at him. He never really responded but he seemed to like to the company. Eventually I started reading to him. It felt awkward for me to always say the same things to him, or to talk and talk with no input from him, so I began reading him The Lion The Witch and The Wardrobe by C.S. Lewis. I never read these as a child (I KNOW!) so I thought it would be nice to do with dad. He seemed to enjoy me reading to him. He would calm down and not fidget. He would still his hands and seemed to just listen to me read. I did voices and everything. Sometimes I’d get odd looks from passers-by until they got close enough to see I was reading, but I didn’t much care. Dad seemed to like it. Even though I was able to see dad much more at this place it still did not feel like enough. I could have gone more.

I was on the way to teach my classes when I got the call from the nursing home saying he was being taken via ambulance to the ER for breathing problems. Turns out, his nurse noticed he was aspirating and had begun coughing. She did not even call the doctor as is policy, but instead called 911 to come get him right away, then called the doctor. I called my administrator and asked her to cover for me at school, that I wasn’t coming that day…15 minutes before I was due to teach. I’m so thankful for understanding friends who covered for me for two weeks so I could be there for my dad!

When I got to the ER there were a lot of people in the room and a lot going on. I’ll spare you all the medical details, but to say he was altered would be an understatement. I had been to see him on Monday and it was Thursday and he was so different. It happened so fast. He was mostly unresponsive, he was only responding to pain stimuli, (grabbing at them when they gave him IVs etc).

Once they got him stable they got him up to a room. I stayed very late that first night then ran home to sleep for a few hours when the nurse said he was stable and it’d be okay to do that. I got back up there on Friday early so I would be sure not to miss his doctor. Friday was The Day Of Tests. Poor dad. So many tests; sonograms, EKGs, CTs, blood tests, Swallow tests, and on and on it went. On Friday night when Dave and I were there his heart did some odd things and it initiated a Rapid Response. Kind of like what you see on TV. Suddenly the nurse came in and turned on the lights and said their monitors out at the desk were indicating his heart was struggling and they needed to respond. I reminded her that he had a DNR and she said they were aware. They would not re-start it if it stopped.

Dave and I sat back and watched as the room quickly filled with about 10 to 12 people and they hooked him up to an EKG machine and pushed various medications to get his heart back into a proper rhythm. Eventually they got it back but the whole experience left me feeling uncomfortable. Why did we just do all that? Was there even any hope of him getting better? Knowing what I know now and knowing my dad and what he would want, I wish I’d stopped them. He didn’t need to go through that.

Saturday all the test results started to trickle in and none of it was good. He had several health issues going on in addition to the aspiration pneumonia that brought him to the hospital and none of them were really treatable. He’d been on several very heavy antibiotics to fight the pneumonia and instead of helping he became septic. Even if we could somehow manage to make those antibiotics work on the sepsis and pneumonia, he had some newly discovered issues that were unfixable. He was not a candidate for surgery. After talking to the family we decided to discontinue treatment and put him on hospice. That was one of the hardest, right decisions I’ve ever made.

By Saturday night we had him off of all the medicines they were giving him. They were now focusing on helping him to stay comfortable.  The hospice people told us that he would likely go quickly, probably Sunday. Dad was never one to do as he was told so he managed to hang around for 3 more days. During those three days all the family came up to say their good-byes. My mom and sister and I spent a lot of time just talking and laughing around his bed. Maybe he lingered because he enjoyed our conversation. 

Eventually, on Tuesday night it became clear it would be imminent. His heart beat was very, very slow and erratic. My sister and I lingered late that night. We didn’t want him to be alone. It was a more subdued evening. Not as much laughing and joking. We were so very tired, and we both knew in our spirits that this would be our last hours with dad. When we finally decided to go home and rest, we said our goodbyes. They were simple, not drawn out. Every time we’d left his hospital room we knew it could be the last, but something was different about this time and I think we both felt it. He passed that night at 2:26 am. I wish I would have stayed. I wish I would have been there when he passed to hold his hand and say comforting words to him, but my timing was off, as it feels like it has been during this entire process.

Losing a loved one seems chock full of could-haves and should-haves. I think those feelings are part of grief itself. I could have had my dad move in with me, quit all my other responsibilities, and never left his side and I can almost guarantee you I would still be wading my way through the could-haves and should-haves. I am grateful for the last year I had with him. I am grateful he was close and I was able to not only have my scheduled time, but also pop in for 5 or 10 minute visits here and there throughout the week. I am going to focus on that, what I did do and what I did have and try to learn from it and let go of the could-haves and the should-haves.

I’ll miss you dad. I am so glad you are at peace and your mind and body are once again whole.

He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away. Revelations 21:4 

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