Archive for July, 2015|Monthly archive page

‘Going downhill so fast’

I got a sense today of how stressed I really am, presumably as a result of Mom’s disease progression. I was walking my dogs and came upon a young couple at the end of my street with their newly adopted dog. All the dogs said hi, and we chatted and walked in the same direction down the street. I was having trouble placing them, and I asked if they lived in the house Amy used to live in. And the husband said, “We live right next door.” They were my next-door neighbors, and they have lived there for months. I apologized about 10 times. They were very cool about it, but I just took them a bottle of wine to try to explain that I’m obviously having trouble with focus and attention. That it was not them; it was me. It has been a long time since I’ve been that embarrassed.

Sundays are bound to have that effect on me for as long as Mom survives, because I am committed to feeding her lunch. I did today. I had a hard time waking her up when I arrived, and I asked an aide what the secret was to waking her for her meal. “Cold water first,” she said. Sure enough, having a glass of water lifted to her lips prompted Mom to wake up and prepare to eat. She had a couple of coughing episodes while eating, and the aide said there’s a chance Mom’s diet will be changed to soft foods that are easier to swallow. She was able to eat today, but it did take her a long time to clear each bite. She was serene most of the time, but knitted her brows from time to time when she tried to talk. I spoke in assuring tones and showered her with compliments and kisses. I took her hand at one point and she smiled and gave it a slight squeeze. I told her she can relax. She should not have a care in the world.

When I popped in on the program area Thursday before my quarterly care conference, I found Mom asleep and covered with a blanket. The aide currently assigned to Mom – they rotate every few months – said hello, and said, “She’s just going downhill so fast.” She has seen a lot. I wondered if this is a rare way for the disease to progress.

Mom, unresponsive whenI stopped in for a brief visit.

Mom, unresponsive when I stopped in for a brief visit.

At the care conference, I finally got some information about what’s going on with Mom’s changes. I had received a call a week or so ago about a blister on Mom’s foot – it turns out it was a vascular blister, meaning Mom’s poor circulation led to a wound, essentially. While she had been placed in a traditional wheelchair when she became a fall risk, she had trouble staying upright. So the staff put her in a chair that can tilt backward, started Mom on the diuretic Lasix and padded her legs and feet to support better circulation. I could feel the difference in her calves – her skin is less taut. I did mention that no one had ever called me about the transition to a wheelchair and the nursing director apologized.

She has lost 7 pounds, probably mostly fluid from her legs and feet. She is very withdrawn and has her eyes closed most of the time. She may or may not be sleeping. The activities director said she had spent about half an hour with Mom recently, and Mom did open her eyes. Mom also seems to respond to having lotion applied to her hands and arms. I said that sometimes I feel like I annoy Mom by constantly touching her, but the lotion can soothe the nature of the touch as well as provide a pleasant smell for the patient. Something to consider for future visits. Everyone agrees that Mom is a good eater, and they said that’s a good thing. “Is it, really?” I asked. They knew what I meant. But for patients at this advanced stage, the nutrients can be helpful in sustaining the quality of the skin.

Mom is now screaming again when the aides are giving her care – a shower, or changing her disposable underwear. But based on how little she moves when I spend time with her, I assume that’s the only way she can fight back. She can’t take a swing or kick anyone. And she doesn’t seem to have any words. She used to say “I hate you” to staff.

I asked if a rapid transition like this means progression will continue to be rapid. Not necessarily, the nursing director said. She has transitioned from one stage to another. How long she remains in this stage is anyone’s guess. I said I’m worried that she is fretting or in some distress. The staff members don’t think so. She may express what looks like frustration, but it’s likely that she has no awareness of actual emotions. That is comforting because I really don’t want her to fret. I just want her to be able to rest, and feel at ease, and not have a care in the world.

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