This blog entry was originally written on September 10th and never posted. I thought I would post it now after the fact, more for historical purposes. Close to a month ago already...
I work, head straight to the hospital as soon as I clock out, and alternate supper prep nights with my husband. We usually eat at 7:30pm or 8:00pm instead of our usual 6:00pm these days, because life has changed seemingly overnight. I'm usually exhausted and can't really muster more energy than it takes to turn on my phone and scroll mindlessly through social media until my eyes are heavy and I shut the light to sleep. That is pretty much a summary of the blur of the past 2 weeks since my family returned from vacations.
We have little family time. The kids being teenagers, don't seem to mind a great deal. Yet, I still want to be here for them if they want to talk, show me silly TikTok vids, play the occasional board game, or just hang on the couch. I don't want to be insensitive to their needs, no matter how small. Time with them at home is slowly running out, and I'm having difficulty wrapping my brain around how grown up they are!
Sleep is steadier and more peaceful thanks to the steady presence of Mark. He keeps me grounded and calm. I spend a few minutes before bedtime every night telling him about that night's hospital visit, and he keeps track of the updates I recount. I haven't gone to bed after 1:00am since the family has returned. I can breathe more easily and dream freely again.
While we all grow accustomed to the newly changed schedule, I feel the urgency to have more answers from the hospital. The medical team hasn't called me all week, so I'm getting anxious. I can't follow up on assisted living residences, because in order to place my mother on a waiting list for admission, I need to submit reports from the physiotherapist, occupational therapist, neurologist, and possibly others. Even my mother is growing impatient. Each visit begins with her affirmation that nothing is wrong with her, so can she leave now? She is walking well, using the toilet on her own, seemingly taking her meds (unless she is angry or frustrated, during which times she has been known to pinch the nursing staff; oh my!). Her memory on the other hand, is failing in greater strides. There seems to be a 20 year gap where she remembers little, and what she does remember is not in the correct sequence or location. I will often ask her questions to test her memory a bit.
Mom: I want to go home. There's nothing wrong with me. Can I go home tomorrow morning?
Me: Mama, do you remember why you're here?
Mom: No... (pause)... Did I fall?
Me: Yes. Mama, do you remember the illness I told you about? The diagnosis?
Mom: Alzheimer's? (50% of the time she remembers. The other half of the time she looks lost or asks again if she fell)
Me: Yes, mama. Remember, you have to take your medication to keep it slowed down in progression.
Mom: I always take my meds. Unless it's too big and difficult to swallow. Or unless it's liquid medicine in juice. I don't like the juice. It's bitter.
Me: Mama, always take your meds please. Onegai.
Mom: I don't think too much medication is good for you. I don't think I need it always, not all the time.
Me: If you don't take it all the time when asked, you won't be able to live on your own, mama. You have to trust the medications. They're important.
Mom: But are they really necessary? Why do I have to take them all?
Me: If they're Tylenol and you're not in pain, you can say no. But everything else is super important, mama. One of the pills is for your hormone balance. One of the pills is for your thyroid. One of them is for your blood sugar levels. One is for your blood pressure. They're all important, mama. Are you listening to me? (she looks forlorn...)
Mom: I want to go home.
Mom: I want to go home.
Me: Where is home, mama? Where do you want to go?
Mom: Do I still have an apartment? Is someone living there? I had a dream that 2 men, strangers, were living in my apartment. Is that true?
Me: No, mama. That was a dream. Your apartment is waiting for you. But I want you to know that when the hospital releases you, you might not be able to go back there. You might have to move to a different apartment where you can have more help to make sure you take your meds, help to walk, maybe even help to cook.
Mom: Can you just ask nicely at the reception if I can leave in the morning? I think one of the nice nurses will say yes. But the cranky ones will say no. Can you just ask, Hisako?
Me: Mama, you can't leave until we get those reports. The physiotherapist has to write a report. The occupational therapist has to check what you can do and write a report. The neurologist needs to do some more tests with you and write a report. And the social worker will help us find the best placement for you according to all of those needs.
Mom: Ok. But there's nothing wrong with me, really.
This conversation will then circle back to the beginning or a variation of it, and it will seem like an entirely new conversation to my mother. We repeat the same questions / responses a number of times until she has to go to the bathroom or there is another interruption. Then, an entirely new conversation with new information / stories / questions / responses asked / told repeatedly in sequence. I've learned to tell her the same information multiple times, each time as if it's the first time.
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