Back to the ER

When we are sleep deprived and running at maximum capacity navigating through the days, we lose precious perspective. It’s paramount for caregivers to have some down time so they may return refreshed with clear vision.

That wasn’t happening for me; there wasn’t anyone who could come and be with Mom except briefly when I ran to get groceries or pick up prescriptions. There was a neighbor, who was also very needy in his own way, who did help by diverting Mom’s attention for periods of time. Sometimes he would take her for a drive when she would become so fixated on “going home.” While they were out, I’d hurry to clean and fix things I hadn’t had time to take care of amidst the chaos.

But, at the outset, there was Mom and me. We spent every minute of our waking day together and some were very long days. The old adage that one cannot see the forest for the trees definitely described me. I was so involved in the moment that I was missing the big picture. Finally, there was one of those “AH-HA” moments and I realized that something was really wrong.

Mom had gradually lost a lot of her stamina – yes, she was in her eighties but this was my Mom who could always run circles around me. She always had loads of energy. Now she couldn’t get up in the morning – but was going to bed later and later. Remember, this is before I learned there was such a thing as “Sun downing. “ For everything that was going on there were reasons why it could be expected. Yet, that day came when the culmination of that “whole picture” was not jiving. Something was wrong.

My brother and I discussed it and then I called her family doctor whose only response was, “If you can’t handle her, take her to the ER.” The tone of his response was rather cold and detached for a doctor who had been treating her for many years even though it was the right answer. We took her to the ER – and thank God we did.

Robert came over first thing in the morning; Mom was completely unable to motor herself. We didn’t wait to try and get breakfast or pills taken care of, we decided to head over right away. He had to carry her to the car and lift her in. When we arrived, fortunately there were wheelchairs available so he did not have to carry her from the car. We did not wait long before we were ushered back to give history and begin the tests.

It was a very good thing that she’d not had breakfast or pills. This assured that the blood work and other tests should have the most accurate results. The intake doctors immediately thought she might have an infection [upper-respiratory or bladder] going on which would cause the symptoms we described. With the surrounding AD/dementia it was hard to differentiate observations but some were grossly more exaggerated lately. The hospital stall was very thorough; running all the blood and urine tests as well as taking a chest x-ray and cat scan of her head.

We must have arrived by 9:30AM and by 11:30AM she was resting very comfortably – snoring, in fact, under several layers of heated blankets. They hooked her up with oxygen and an IV. By this time, her little body had already absorbed that enormous bag – she was definitely dehydrated. Water was never anything I was able to get her to drink – it was almost always a fight.

By flying out of the house so quickly, I didn’t have any breakfast either but did manage to grab one of Mom’s chocolate Boost drinks and I’d made a cup of coffee which I’d brought in a thermos. Those were long gone and I was hungry. My brother left to go to his bank – he could not sit and wait – and promised to bring me back a bagel and some juice.

Funny how different we two are: I prefer to be here, watching, monitoring, holding her hand, being here when she opens her eyes to find that nothing is familiar, repeatedly explaining why we are here and that she is okay. I needed to be there for me as much as for her. So, “The View” ladies kept me company while Mom rested and I read my book awaiting the results. Mom slept peacefully which was comforting.

The results came in: Mom had a blood clot pooling into the right side of her brain. They gave her something to decrease the likelihood of a seizure due to hemorrhage. They described their findings and our options. We could do nothing and I surmised that doing nothing was the same as writing her death certificate: she would go to sleep and that would be it. It wasn’t pretty.

The second and only option we really considered was to move her to a specialized hospital, one that dealt with these kinds of neurological issues. She would be evaluated there. We said, pack her up, how do we get there. They were relieved and communicated their relief by telling us that not everyone would make that choice given her age and surrounding issues, i.e. Alzheimer’s and dementia. When my brother and I looked at each other, I could see in his face that’s what he wanted but I sensed he was also relieved when I blurted out that we had to try.

If I’m being total honest, I have to admit I wondered later on when things were really tough if we’d done her a favor – or would it have been kinder to let her fall asleep and drift away. During those really difficult and brutal moments, I’d remind myself of all the other moments when she was smiling, remembering and seemed happy; no, we made the right choice for her, she would have approved.

The hospital team readied her and then a special ambulance team loaded her and headed out. We followed more leisurely because they warned us that they had settling time once she arrived, more tests and things to work out.

The neurologist confirmed there was a hemorrhage on the right side of her brain. Of any of their solutions, one again being do nothing, the only action she felt fit Mom best – given her comprehensive condition, and the one she recommended was that a small burr hole be drilled into the side of her skull. They would insert a tube to removed and relieve the fluid inside her brain cavity. This is the lay-version, the way I remember it, but I’m sure there were a lot more medical and technical details that swam over my head.

They assured us that they could do this at her bedside. This was the simplest and least invasive procedure. The neurologist had enough time right then before having other procedures on her docket so she proposed our making our decision quickly and she’d fit us in right away. Robert and I again agreed that we needed to give her the best chance she had to recover so they set to work while we waited in the little waiting room.

The idea was for the tube to remain in, draining the fluid for 1-2 days. The goal was to get her back to her current baseline. An 86 year old brain was not expected to return too quickly or as well as a younger brain. But, this was the only viable option.

When we left, we were full of hope and questions and, as for myself, fear. My Mom held a lot of fear during her life and she transferred this fear to her children – me more than my siblings, I think. I was as afraid for how she’d react to her situation as much as I was afraid of the dire consequences if this procedure didn’t work. I did my best to blank out that avenue and concentrated on doing what I could to make her comfortable and reassure her.

We headed back up the next day. There was supposed to be a number we could call for updates but after searching through their brochure I was not able to find it. We couldn’t even find when visiting hours were so we just drove up. We were a bit early so we were asked to wait in their waiting room/lounge. They told us where the vending machines were. My brother’s ex-wife and her Mom came up so when the visiting time finally came, we needed to take turns since only two people at a time were allowed to be with her.

We learned when we arrived that she had ripped the tube out of her skull and she’d kept trying to get up and move around. They had to tether her arms because she would not stay still. She had an attendant with her 24/7, watching and monitoring her activity. The neurologist was not happy that the tube was removed prematurely; it could not be put back in at this point but she was still appeared hopeful – or she presented an upbeat front for our sakes.

Mom spent a full week at their facility. My brother went back to work but I drove up daily and spent as much time with Mom as they allowed. These were very long days filled with a lot of repetition. She ate better there than I’d seen her eat for a while. She also ate things, for example, grits, which we never had eaten before. When I made them at home, they didn’t go over so well.

The day she came home, they spoke with me on the phone before I went up but they were unsure of when she would be released. As soon as I arrived [it was not a short ride] they informed me that she was being released that afternoon. The attendant suggested I could buy her some running clothes for her wear just to get her home since I’d taken the clothes she’d worn there home earlier that week. She didn’t have shoes or a jacket or anything. I drove home, got all her things and drove back.

Over the course of the week, the difference was like night and day from how she was just prior to our ER visit. We were all so ecstatic at the significant change and had high, high hopes for her recovery. The decline in her locomotor activity was a direct result of the pressure that blood clot had been exerting on her brain. We were optimistic that she would recover all her physical capabilities from prior to this incident – which was precipitated by some sort of fall where she had to have struck her head on something. One of those many nights when she’d get back up out of bed and wander about the house without my knowing must have included such a fall.

Just a few weeks before this, we were out in the yard and she was raking; doing all the activities she loved. Our long-term goal was for her to be able to get back to being physically strong enough to walk and do things she loved. For the time being, we were concentrating on keeping her safe and more sedentary giving her head time to heal and her body to get stronger.

The problem was how to achieve this when she was so head strong and anxious to get everything done right away. This turned out to be a big transition in our lives; one which required the steady help from people who knew the road we were on. Fortunately the Hospital protocol included a home follow up for their released patients. The visiting nurse told us she would recommend Hospice.

At that time, I had no idea what that meant but later would be so very grateful for their intervention, their expertise and support. With their steady supervision and some time, her locomotive abilities were back to normal or close to it. However, I mark this as a definite new plateau on the AD front. No doubt, we were beginning a new journey, it would prove to be rocky, difficult, and scary but not without little pockets of sweet, sweet cherished moments – fleeting though they may have been, they were the buoys that kept me renewing my commitment to her each day.

Those of you who are in the bunker right now – be ever vigilant for those rays of sunshine to keep you grounded and remind and reward you for being the love “that” person in your life desperately needs.