So, last Wednesday was my mother-in-law, Bev's, 79th birthday, and with her Alzheimer's and other health issues, it felt like a blessing to have her so present and happy and enjoying her cake and family purposefully serenading her out of tune. I was at work on her actual birthday, but there was a plan to get the whole family together on the Saturday for more cake, more bad singing.
Then on Friday evening, Bev collapsed getting out of the car, and as the evening wore on, she was squirming in discomfort, not really able to tell her daughter Rudy where she hurt or what was wrong. As she obviously grew even more uncomfortable, Rudy called 911, and by the time the paramedics arrived, Bev was squirming with her eyes squeezed shut. The Paramedics forced her eyes open to assess her, and when they pointed at Rudy and asked, "Do you know who this is?", Bev answered, "That's my daughter"; and that's the last thing she said.
When they arrived at hospital, the ambulance was in a queue with ten others, and despite Bev's now semi-conscious state, she and Rudy spent hours on a stretcher in the hallway (it's apparently a rule that the paramedics need to stay with their charges until handed over to hospital staff, so Rudy marvelled at all of the paramedics sitting around the hallway, chatting and laughing and playing on their phones while who knows how many people were out there still dialling 911). It took until around 11 o'clock to get in to the emerg, and until around 4 before they had their own curtained-off area. Tests were conducted, Rudy attempted to snooze on the chair that was found for her, but eventually, Dave went over to keep their Mom company while Rudy went home to shower and change.
Dave hadn't been there long before a doctor came to him with some news: enzymes showed that Bev had had a heart "event", the true severity of which couldn't be determined without invasive tests, but in her weak state, it was unlikely that she would survive anything drastic. The team was willing to proceed with whatever course of action the family wanted, but to be clear, "she is very, very ill and it's unlikely she will recover to even where she was before". Dave called me with this news, so I rushed to the hospital so he could go and talk to his father and sister in person. When they all returned, it was clear that putting Bev's DNR - which she signed off on as her final wishes years ago - into effect was the compassionate course of action: by now, Bev was tightly curled into a fetal position, with her hands clamped into claws, and her toes splayed unnaturally; her rolling and moaning but not conscious. I asked the doctor exactly what state she was in - is this a coma? - and he explained that because of her Alzheimer's, Bev's brain didn't know how to deal with the insult to her body and went into a hypoactive delirium state; she was basically asleep and would likely never wake up. The doctor ordered "comfort only" - pain relief, but no nutrition or hydration - and we settled in to wait for nature to take its course; which this doctor said could take hours or days. As the day went on, we were admitted to a hospital room, family began to visit to say their goodbyes, and more than one person commented that there ought to be a kinder end than waiting for the body to starve and dehydrate.
Sunday was much the same - with more family and friends coming through - and it began to wear on us that we were in a shared room (with a sick old man in the next bed, of all things), and the whole situation seemed to lack dignity. We waited all day for a doctor to come around, and eventually, Zach overheard an exasperated doctor asking a nurse out in the hallway why we were asking to see him. When Dave heard that, he went out and insisted on seeing the doctor, and he came in to give us a rather condescending lecture on our situation - we had chosen comfort only, there was no medical intervention taking place, so we weren't in need of a medical team. By this time, Bev had opened her eyes, but the doctor explained that "the body will do what it will do but the basic facts have not changed". She was out of the hypoactive delirium state, but her body was still failing. When he said that she could last like that for a week or more, I asked if there wasn't a more dignified situation - no possibility of a private room? A transfer to hospice? He agreed that hospice would be a better setting, and said he would put in an order to get things rolling the next morning when the appropriate staff arrived.
Dave spent Sunday night at the hospital by his mother's side, and Monday proceeded much the same way. Family and friends came by to say their goodbyes, but as Bev was now looking at people and answering yes and no to questions, it felt even more brutal that we were withholding food and water; yet, we were cautioned not to have false hope - Bev's body could not survive the heart attack without a massive intervention, and she couldn't possibly survive the intervention. Even so, this no longer looked like passing peacefully in her sleep.
I spent Monday night at the hospital by Bev's side, and as Tuesday morning dawned, she began speaking in longer and longer sentences. A social worker and representatives of the hospice came by, and Bev was so alert that they asked her if she would be able to sign the transfer request papers - which so appalled me: Bev hasn't signed anything important in years, and I didn't want her to be told that she was going to die. The only good part of Alzheimer's is that she has never understood when she's been sick - from general frailty to cancer, she worries about nothing. After they left, Bev turned to me and, smacking her lips together, said, "Boy, it's funny, but I sure could use a drink." No doubt! No food or water, not even an IV, for three days - but there I was, alone, and had no idea what was allowed; would a glass of water needlessly prolong the inevitable? I did have the sponge and jar of liquid (water with glycerin?) that we used to swab her mouth, so I ran that over her tongue and lips until she said she felt better. Soon after, the social worker returned and took me out in the hallway to say that the talk of hospice might be premature; Bev might not be that sick. She said, "I know the family has an end of life plan that you're trying to put into effect..." And I interrupted, starting crying, and said, "We don't have a plan. We're tying to respect her wishes. If she's dying, we want something better for her than this crappy room. But if she's not, then we want to know what the next steps are." She nodded and said that she'd meet with yet another doctor. I quickly called Dave to let him know that the situation might be changing, and he rushed back to the hospital with his father and sister.
When we met with the new doctor, she explained that while Bev had definitely had a heart "event", there was no reason to believe that it had irreparably damaged the heart. And if she began to ask for food and drink, no matter what the ultimate outcome, providing both is part of the comfort care plan that we had requested. And, since hospice can only accept patients with a prognosis of less than three months, a transfer would be premature. I asked, "Are you saying she has at least three months left?" All I could think of was the fact that we had been starving her for four days at that point; speeding up what we had been told was the inevitable; half wishing that there was a kinder way to let someone go than watching them waste away. The doctor replied, "The body will do what it will do and we can only reassess day by day".
They sent in a speech pathologist to test Bev's swallow - which worked perfectly - so she was immediately put on a liquid diet and began to drink juice and water, eat custard and yogurt. They sent in a physiotherapist to get Bev walking around a bit again. Bev began to improve.
Wednesday saw Bev getting stronger, and on Thursday the doctor came in to say they were sending her down for a CT scan - just to rule out any kind of stroke. Within a half hour or so, Bev turned to me and said, "You know, I keep wondering if I maybe had a stroke. I sure would hate for anything to happen to my memory." I smiled and said that maybe she heard the doctor use the word stroke and we would be going down for a CT scan to make sure she hadn't. That was also the day that I had seen a flock of swans flying across the sky on my way to the hospital, and when I told Bev about it and remarked that it really must be spring, she said, "That's right. You always know it's spring when the swans return from Capistrano." That simply made me smile - I see no reason to ever correct the odd misrememberings that Bev comes up with, so I just replied, "That's what they say."
Friday morning, the doctor came in to say that the CT scan showed nothing, the echocardiogram showed no massive damage to the heart, and with Bev eating and mobile and not suffering any apparent effects from the "event", she would be ready to go home within a few days. Stunning. The speech pathologist came in to see her, the physiotherapist came to take her for a walk, nurses who had watched us say goodbye to her the previous weekend came in to hug her and call her the miracle lady (to Bev's bewilderment), and suddenly, word came that she could be released that day. Rudy eventually had to go to work for a late appointment, so Dave came to help me, and by five o'clock, we were wheeling the mother-in-law whose funeral we had all but finished planning out to my car and I drove her home.
We had previous dinner plans, but afterwards, we all went back to my inlaws' house and had another birthday cake, accompanied by terrible singing.
Bev obviously doesn't consciously know what happened to her over the last week, but I think that deeper down she might. I spent a lot of time just sitting beside her hospital bed this week, and many times she would get into a loop (as Alzheimer's has crafted her speech and thoughts) about gratitude and not taking any of our days for granted and being so happy to be surrounded by family, which is all that matters in the end. I just smiled and agreed and tried not to cry. A week ago we had my lovely mother-in-law dead and buried, and while that day will come, it's not here yet. What a difference a week makes.
