It's possible the last four weeks have been the busiest of my life so far. After this, having two little kids instead of one is going to seem like a simple little walk in the park, I think.
It began with Grandma Lila going to the hospital for the first time since she's been with us. That was March 18th, a whole month ago now (hard to believe that's all it's been). She had a whole bunch of odd little things going on and the doctor finally told us to take her to the hospital because it was hard to get a handle on what was happening. The hospital misdiagnosed her with two infections she didn't have before settling on one she did; but the hospital stay included a lot of antibiotics, which Grandma doesn't tolerate well. When she got home, she seemed to be having a lot of trouble recovering, especially eating.
She has a hiatal hernia that has made food a challenge for most of her life here with us, but especially the past year. I told people I felt like a food Nazi when it came to Grandma because I was always trying to make sure she got food that was good for her and didn't include any of the things that would make her choke or would irritate her stomach. Since the list included some of her favorite things, this hasn't been easy - especially when we realized chocolate bothered her stomach so badly it would get swollen and she would choke on her food for two or three days after having as small an amount as a few M&Ms. Other foods, like pasta of any kind, would make her choke to the point of getting sick, so noodles have been off the menu for over a year now.
After the onslaught of antibiotics, I thought we were dealing with another big stomach flareup when Grandma began to have a lot of trouble eating. In an effort to let her heal, we began feeding her only very soft foods like strawberry nutrient shakes and dairy-free custard (dairy often irritated her stomach also). She couldn't swallow her pills, so we were crushing them and putting them in applesauce (which she really detested). After a few days of this she seemed to be doing much better and we thought all was well, the infection was licked, her stomach was healing, and we'd be back to our usual Grandma Lila any time. When she spent seven hours practicing piano one day after being able to get herself dressed again and getting up at a normal time in the morning, I was pretty sure we were back to normal.
What I didn't realize at the time was the little "incidents" we were seeing that we kept attributing to other things turns out to have been TIAs. A TIA is also known as a "mini-stroke". The difference between it and a real stroke is that a real stroke kills part of the brain involved and a TIA resolves so quickly that while the brain may swell, it doesn't actually die so the affected person becomes symptom-free again within 24 hours of the mini stroke with no lasting effects.
Except Grandma Lila wasn't becoming totally symptom free. Her ability to swallow properly was being damaged; and more importantly, the small flap at the back of the throat that normally closes off the lungs when a person swallows was becoming paralyzed and no longer doing it's job.
Looking back, I believe I can identify three TIAs before Grandma's ability to swallow became so damaged that she began pretty much swallowing anything thinner than pudding directly into her lungs instead of her stomach. She had one Tuesday evening, March 25th; another seems to have been during the night or early morning of Friday March 28th; then a third on Saturday 5th.
By Sunday afternoon, it became apparent something was really wrong. Grandma stayed up all night trying to clear her throat because she insisted something was in it. Ben convinced her to stop, but it seemed like she kept panicking about things and she was back to not being able to swallow her pills. By that afternoon she couldn't swallow water either. It's a pretty scary thing when you have someone not able to swallow.
We considered taking her to the emergency room then, but Grandma was so terrified last time she was in the hospital we decided to wait until morning and do things in as laid-back a way as possible. After all, anything that was happening or could happen was likely not something we were going to be able to do a lot about. If she was having another TIA, which seemed likely, there wasn't anything to be done that night that couldn't be done in the morning; and if it was a full stroke, there wasn't much we could do either considering Grandma's age and what would have to be done to help her. So we put her to bed and slept with our door and hers open to hear if anything went on in the night. She slept straight through, but at 6 in the morning when Ben got up to check on her, it became clear that though she was awake, she couldn't seem to talk or say more than a word or two together in a very difficult to understand way.
It was when I heard her from the other room that I began crying. Because I think I knew then we were ultimately losing her.
After a week in the hospital having tests to determine that Grandma's ability to swallow is so impaired that everything pretty much goes to her lungs instead of her stomach, we had to make what turns out to be a very, very difficult choice: try to bypass Grandma's throat and put food in her stomach by a tube, or recognize that even if we do that, we aren't going to be able to return Grandma to health. Her throat is unlikely to heal. Putting a tube in her stomach actually won't stop the aspiration and she would continue to get pneumonia worse and worse. I felt as though one of my babies was sick and there was nothing I could do to help.
Grandma isn't my baby, of course, and ultimately the decision wasn't mine to make. My job was to stand by and offer whatever encouragement I could and help to ask questions and gather facts to make that decision and to do whatever I could for Grandma and for Mom: but it wasn't my decision to make. I'm not sure if that made it harder or easier
While this was going on, our entire house was being torn apart and worked on very hard by the rest of my family who wanted to finish the addition as fast as possible so Grandma could actually get to see it and enjoy it regardless of the outcome of the tests and decisions. This definitely added a surreal element to things as our kitchen disappeared and then all our household furnishings were packed up and moved as well. Abigail got a little confused after spending a week with my family and then having our house be so different when we were at home!
In the end, we knocked off all work, put the house back together as best we could, and brought Grandma home. She has always been afraid we were going to put her in an institution somewhere and leave her there to die and one thing we knew we absolutely had to do if we could feasibly manage it was get her home. Mom was very worried about us at first because she said it was a lot to place on us and she thought maybe the hospital was a better place to stay; but after a few days spent just sitting at the hospital I think we were all ready to get out of there. At least at home we can open the windows if it's warm outside and do the laundry and eat meals without racing around like crazy people in the hour or two we're not at the hospital. And there are certainly a lot less germs.
So here we are. For the first week Grandma was not very cognizant as we had to take her off all her familiar medication and switch over to the closest equivalent we could get that could be administered as a tiny amount of liquid or as a skin patch. We thought we were seeing a decline since Grandma hadn't been able to eat or drink, but as of two days ago her mind has cleared considerably and for the first time since I've known her, she even has times when she is speaking and processing conversations at a normal rate of speed. It's a little bizarre because it's like seeing Grandma without the fog or veil she's been behind since I've known her.
It's so strange to care for someone who doesn't eat, but thankfully she is not hungry or thirsty and pretty much asks for tastes of things that she really likes, being very content with a little chocolate pudding or a little water on a special sponge that she sucks on. She hasn't had chocolate for a year since it caused her stomach and throat so much trouble, but at this point there's nothing it's going to do to her and she's been greatly enjoying her tastes of chocolate. We've gone through a lot of chocolate ice cream because the rest of us keep eating a spoonful when we feed some to Grandma.
It's been a very odd time and it may even get odder. But we're all glad to be home and every day is definitely a "don't borrow tomorrow's troubles" kind of experience. Abigail has learned to run in our new big house and is enjoying having her aunts taking turns staying here to lend an extra hand. Ben and I are back on a newborn's schedule at night even though our newborn still has a few months to go before birth. Mom and Dad are usually here keeping Grandma company in the afternoon. And our family has been keeping our refrigerator full of meals, so I'm not even cooking like usual. We feel very loved and cared for and I think Grandma does too. Pretty much all we can do is take care of each small thing as it arises and wait.
So we wait.
4/21/2014 01:34:50 pm
4/27/2014 08:50:39 am
Thank you so much for thinking and praying!
4/23/2014 12:04:03 am
Sorry this has been such a crazy, strange time for you. It is hard to do the right thing but you are doing it. Love - Aunt rosie
4/27/2014 08:54:26 am
Thanks for the encouragement!
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Wife of Benjamin and mother to two wonderful little girls who are getting bigger every day. Enjoys writing down thoughts and discussions we are having within the family and sharing them with whoever is interested in reading.
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