A Rougher Patch

My mom passed away early last Thursday morning. March 19th 2020.

If you read my last post you know that it’s been a difficult time and since then things have only gotten worse. Although, for a time, things were getting better. Susie, the best wife a man could ask for, had given up her job and dedicated herself to taking care of my mother full time. And slowly mom seemed to be improving. She was never really able to get to the point where her eyes wouldn’t close involuntarily, but her speech had improved to the point that she no longer needed to use her letter board or the app I wrote for her to be able to communicate. In the meantime I had returned to work with only slightly reduced hours. My son, Aaron, and I spent a few nights each week in La Vergne as he returned to school and I tried to get that home ready to sell so we could all be in Smithville full time after the semester wrapped up. Things had started to settle into something of a routine.

In early March my sister, Roxanne, came out from New Mexico for a week long visit and I was just beginning to become concerned about the virus after reading reports out of Italy. On that day they had a total of 3,089 cases while here we had 153. I mentioned to her and Roxanne that I would be curious to know what steps hospice would be taking now to insure that it didn’t spread to those vulnerable patients that they care for. During the nurse’s visit the following day I was surprised to hear her say that they are taking extra precautions but it’s basically like the flu. The nurse was concerned, but not alarmed by mom’s health. She seemed to not be doing quite as well as the week before though her blood pressure had improved and her heart rate was steady and strong. But the pain in her legs and her anxiety had been increasing. Italy ended that day with 4,636 cases and 278 in the US. The first case in Tennessee was reported the day before.

The following day Susie took her first real break from taking care of mom since her stay with us began back in December. Friends of ours had planned a day for us to get away and try to leave our cares behind for a bit. It was hard to do with the thoughts of the virus in the back of my mind and seeing firsthand some of the destruction of the tornadoes from earlier that week. It’s amazing as I look back on the last few weeks that those tornadoes which brought so much death and destructions are almost an afterthought.

On Sunday we returned to Smithville to find that mom’s pain had not improved and now she was beginning to have trouble drinking on her own. The next day was, I believe, the first where she started saying things that didn’t make much sense like “I want to go home to Tennessee”. On Tuesday her nurse visited again. Her vitals improved again from the last visit. She experienced first hand some of the strange things mom had started saying and suggested that dementia might be settling in, perhaps in part due to the changes in routine and that maybe as things got settled it would get better. There was also a noticeable change in how much more careful the nurse was with sanitization. By the end of the day, as my sister and I drove back to La Vergne so she could catch an early flight home the next morning, Italy had 10,149 cases. The US had 959 with 7 in Tennessee.

I started talking to Susie about the need to stock up on groceries so we could cut down on the number of trips we had been making to the store. I didn’t want to risk us bringing anything back home and infecting mom with her health as precarious as it was. On Thursday Susie went shopping and tried to get two weeks worth of groceries. The pain in mom’s legs and her confusion continued to worsen but we believe that it’s still a problem that we can solve with help from hospice. By Saturday mom has lost the ability to communicate except to answer “uh huh” and “uh uh”. She does manage a couple of times to say “help me” while rubbing her legs. Hospice says this can happen where they have several bad days of pain then it eases up. We’re starting to become alarmed.

Sunday morning comes and mom is very groggy and not very responsive. Susie and I wonder if perhaps a shower could help. As I’m getting her out of her wheelchair for the shower I hug her and tell her I love her. She says “I love…”. I didn’t realize at the time that would be the last thing she would say to me.

The shower doesn’t really help. Mom no longer opens her eyes. We open them for her and ask her to look at each of us in turn. She is able to do that somewhat. We call hospice and ask that they please send someone to look at her. The on call nurse comes and tells us he believes that she is now actively dying and it could be hours or weeks.

Over the following days she is visited by her other children. My sister and brother who live in Chattanooga. Roxanne is back in New Mexico trying to decide what to do. By the end of the day on Monday there are 27,980 COVID-19 cases in Italy, 4,632 in the US and 52 in Tennessee. I still hold on to a sliver of hope that she might recover and ask if everyone could stay away. I relay messages to mom from friends and family but I’m not sure if she hears me. I try and keep her hydrated by wetting a sponge and placing it in her mouth. At first she would suck water from the sponge but gradually her ability to do that lessens. Each night I roll the trundle bed next to hers and sleep. I listen to her breathing which is sometimes interrupted by a long deep breath followed by a long pause before she begins breathing regularly again.

Wednesday evening I wake up around 11:30PM and go to the bathroom. Mom is still here. Her breathing is more shallow. I wet her mouth again, hold her hand and drift back to sleep. I wake again around 1:00AM and listen for her breathing but it’s silent.

I wait a few moments before I wake Susie and let her know. She calls hospice and they call the funeral home. Both are a long way away. The nurse arrives around three. The people from the funeral home, from mom’s hometown of Dunlap, have a hard time finding the place. They arrive an hour or so later to take her away.

On Friday we drive to Dunlap to make arrangements. It’s the first time I’ve been away from the house in over a week and it’s a bit unnerving. As we talk with the funeral director I can see that she is preparing to explain to us the restrictions that they have in place regarding visitation and services, but I’ve already decided that I’m reluctant to gather a large group of people together at this time and she is relieved that she doesn’t have to convince me to take precautions. The funeral will be private with only immediate family for the visitation and a short graveside service. As we are making arrangements mom’s pastor calls the funeral home to let them know the church is shutting everything down and they will no longer allow funeral services to be held there. 47,021 cases in Italy now. 19,101 / 233 in the US / Tennessee.

After a long struggle my sister in New Mexico finally decides that she and her family will not make the trip back here for the funeral. I am 100% supportive of this decision and tell her that mom would be proud of her and understand. We talk about plans to have a big memorial of some kind for mom after the threat of the virus subsides. We also talk about how we can convince my dad, who lives in Michigan, to stay home. There are 788 cases in Michigan on that day.

It’s been raining hard again and as we drive to Dunlap on Monday morning. The owner of the funeral home calls to let us know that the grave site is too muddy to get the vault in place. He tells us that he’d like to use a steel vault instead which is lighter but costs more. Before I can agree he explains that the funeral home wil absorb the extra cost. They’ve already gone above in beyond in reducing costs explaining that we’ve all got to pull together while this is going on.

Mom’s visitation begins with just a handful of people. The funeral home says we can combine visitation and the service in the chapel since it is such a small group and they will take her to the cemetery, which is very muddy, afterwards if we would like. By the time the service starts there are a total of 15 people including the two from mom’s church. I have mixed emotions about the turnout. Relieved that people agreed with my request to not gather but at the same time thinking that mom deserved, and would have had, so many more had these been better times. As the service is about to start I hear someone from the funeral home saying something about “short and sweet”. Later I find out that some funeral directors association has called just before we began telling them to shut everything down but they allowed us to proceed. My understanding is that mom was last person to be able to use the chapel and perhaps have visitation there.

As the service ended my brother and sister decided they wanted to go to the cemetery for mom’s burial and I stayed behind to talk with my step-brother and his family. Afterwards I decided to head down to the cemetery and see if I could catch up with them. My siblings were gone by the time I arrive but they had not yet laid her to rest. As I talked with the gentlemen from the funeral home they explained that they decided to call the sheriff’s department for help. They soon arrived and members of the Sequatchie County Sheriff’s department served as mom’s pall bearers. As this was going on a couple of mom’s cousins from the valley arrived and we spoke with them for a bit before eventually making our way back home. The day ends with 63,927, 43,667, and 614 cases in Italy, the US, and Tennessee.

On Wednesday tried to turn my attention back to the things I need to do as the pandemic rages on and returned to work. I’ve been thinking about writing this post for awhile but everything’s been too raw. On Thursday a reporter emailed me asking if I would talk to him about, as near as I could gather, our experience with all of this. I was very tired Thursday and emailed him back yesterday to let him know I was ready but, as of this morning, haven’t heard back. As I thought about that I decided that I would go ahead and put my thoughts down here. The whole thing has been surreal. It doesn’t seem possible how drastically my life has changed over the last few months. I really hope there is good news on the horizon soon.