• Lisa

going with the flow

Hello y’all. Things are—well, I hesitate to say improving, but sometimes, just having knowledge is an improvement over not having it.

The MRI showed that mom had a stroke. It was one of the first things I thought about when I was first notified about her sudden decline, and when I got to the ER that day after New Year’s, I did a quick and dirty bedside screening. It didn’t show the obvious indicators I was looking for, but the thing is, not all strokes present that way. The area of her brain in which the stroke took place is not associated with most functional voluntary muscles I was checking, like the ones in the mouth and tongue, so it wouldn’t show up through that means.

Unfortunately, it happened in an area that often has a significant effect on the swallow. I did some things with her in the hospital, when she was alert enough, but the results were inconsistent. Part of the reason is, of course, she has a very hard time following directions anymore. Thank heavens, the doctor treating her at the hospital, Dr. Onuorah, was wonderful, very knowledgeable and kind. (He was also pleased to find out I was a fellow health care professional, especially when his wife called him twice while we were conferring. I tried not to giggle out loud when he told her ‘I’m with a patient’s family member…no, she understands, she is one of us’.)

I had talked a good bit with aunt Peggy and uncle David, and we had come together on an idea of how to proceed, so I presented that to Dr. Onuorah. Mom’s quality of life is very important to me, and to the family, and as I said in my hasty last post, tube feeding and a slow deterioration is no quality of life. As a kid, I remember going with mom to visit her best friend’s mother in a nursing home, and how pitiful and small and alone she looked lying in bed with a feeding tube in her stomach. After we would leave, we would talk about it, and mom would often say she never wanted to end up like that. I confess, I hoped she would go the way my daddy did, quickly (the way I hope I go one of these days).

Up against that, though, I put the medical fact that a stroke is a sudden discrete event from which people can and do recover. The first sixty to ninety days is the period of most improvement; if you haven’t gotten the functions you lost back within that window, the odds are that you won’t. Knowing that, though, means that I can’t and won’t let go of that hope, and I will make certain mom has every realistic chance to get better and get back to the baseline level where she was prior to the stroke. I mean, y’all remember me talking about her right before Christmas; she had settled into Place K, was participating in activities, hanging out with her new friends, and pretty much enjoying her life—as much as it was ever possible for her to do that, considering she has always been kind of hard to please! In actuality, she was probably having as good a life as she ever has had, and maybe in some ways better.

So wrestling with the situation and trying to bring those two opposing sets of info into harmony has not been easy, but I thought we had accomplished it. I explained all this to the doctor and laid out what I was thinking: could we place a feeding tube with the understanding of giving her several weeks to heal, getting her back to her place, and referring her to therapy? Her right arm and hand were somewhat contracted due to the nerve damage from the stroke, so I really wanted the occupational therapists to check it out, not just with the hopes that she could get some use of it back, but because contracted limbs can get sores and skin breakdown in creases where the joints are being tightly held, and that stuff is really hard to treat. And of course, I wanted speech therapy to try everything they could to get her swallowing safely again if at all possible.

As I said, I want her to have every chance, but I have to be realistic. If she doesn’t make improvement, this may be her ‘new normal’, and it’s not a norm she would want. So, I asked the physician, if mom doesn’t get better (or better enough, if that makes sense), whether this alternate route, this plan B, would be feasible: transition her care to hospice, remove the tube, and let her have what she wants. That may sound harsh, but it really is often the best course of action, if a person can’t get any better, in order to preserve as much quality of life as possible. People think hospice automatically means a person is actively dying, but it doesn’t; it only means that dying is projected, as well as medical science can do that, within a given period in the future. Usually they say six months or so, which many people metaphorically blow raspberries at.

Anyway, long story short, Dr. Onuorah was in immediate agreement; he said this plan sounded perfect to him. after I left him, I went to Place K and talked with mom’s staff there to catch them up. They hated hearing she had had a stroke, but like me, they felt better just knowing what caused her to all of a sudden go down. Better yet, I found out the facility doctor, who I like and worked with closely when I worked there, also works closely with hospice, so she knows all about navigating that course of care.

If there’s anything good about this situation, it’s that I know what is going one, and I have a plan. And a plan B. That just makes me feel better. And if you believe in omens, this little guy landed on my rear view mirror when I parked at Place K to go talk to the caregivers, and sat there and sang at me.

I could not bear to open the door and scare him off! So I just sat and enjoyed him until he flew off, which was a good couple of minutes. Sometimes you have to go with the flow.

On the lighter side, I’ve been getting a good bit of extra money helping my aunt clean out my grandparents’ place, mostly from hauling books and videos to the big used store. Lots of store credit too, which keeps me in books and movies and music and such. I’m still writing, of course, but also doing more crafting. I joined a cross-stitch group on facebook and have been having fun comparing notes and learning techniques I didn’t know (and learning about tools I didn’t know, like needle minders, teeny magnetized doohickeys that hold your needle without you having to poke it through your fabric. They are so much fun, I bought one, and then made several.) Another facebook group I’m new to is Marvel fans, and after I posted my tiny Tony, I got several requests to make dolls for people, so, more fun and funds there. I could still stand to win the lottery, though. LOL. Not that y’all will ever know if I do. I’ll keep my mouth shut and continue to live cheaply.

#crafts #placement #selfcare #dementia #caregiver

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