Mom, 8th post

 

Yesterday was a whirlwind, and seemed very long.

 I got here late, about 1:15, the hospice LPN who does the washing arrived a short time later. Mom reacted when I told her I was here, giving a sort-of smile, could squeeze hands, would swallow if a straw or medicine was put in her mouth. All medicine had been changed to liquid, off everything except morphine for pain/difficulty breathing, or Ativan for anxiety/restlessness. It is known that a person is more able to die if they are comfortable, my feeling is that pain ties the soul to the body, keeping it from releasing. Different words, same concept.

 I woke Tuesday feeling much better after Aunt Beth tapped me out, and I had a few hours at home and full night’s sleep. Do not try to watch your mother on your own, even if you don’t have medical issues.

 The LPN was most of the way through the sponge bath when she said ‘Uhh, there’s a problem…’ My mother is pretty much skin & bones, and the lumbar part of spine had a dark red 2” diameter bed sore, with more on the left buttock. Those had been clear 2 days before, I’d seen myself, and her friend Kathy had looked yesterday and there was nothing. Bed sores are skin breakdown due to lack of circulation, and you get them on pressure points, so the back & buttocks are often the first ones, the heels & elbows can also easily get them as well. If left untreated they get worse, the skin and tissue breaks down and it becomes a decubitus ulcer. I thought back to the previous day, Tuesday, when Mom kept partially sitting up in that mid-sit-up position, and now realize she was trying to get the pressure off that area. I’m horrified, never thought of it.

 There was a blur of repositioning, bracing, pictures being sent to the RN, texting back & forth. She said that if the bedsores had formed that quickly it was a strong sign that the end was very near. She would come in the morning, Weds, with foam pads to take the pressure off. Mom was still swallowing when given her 4:00 meds, but by the time it was 7:00 she no longer could swallow, no squeeze of hand, no response when I put gel in her eyes to keep them from drying out, which means she crossed from semi-conscious to unconscious in those 3 hours.

 I was torn about staying. Mark had to go home for overnight, so if Aunt Beth was going to come over I’d have to drive 20 mins, get her, drive 20 mins back, then 20 mins back home, and then a few hours later go & pick her up. I was exhausted, and gave myself the whole caregiver speech, which boils down to ‘if you don’t take care of yourself you can’t take care of anyone else’. The frequent analogy has become the instructions on airplanes that ‘in case of emergency put the mask on your own face first before helping others’. But if she was going downhill, if she was going to die that night, shouldn’t I stay? But if I get sick it won’t do either of us any good. Believe in a previous post it says that Mom & I talked about this, she said she was fine dying alone, didn’t expect me to be sleeping over to be here when she died.

 So here’s the conundrum: my mother would forgive me if I left and she died, but could I forgive myself?

 She had gone downhill so quickly, and it happens quietly. If she continued to decline at that rate then it was entirely possible she would die over night. BUT this could also go on for several days, it usually does, where they are unconscious, unresponsive, but the body is, somehow, still going. Our bodies are designed to live, and they will do just that even when malnourished & dehydrated. If I went home and she died a few hours later I’d be castigating myself for not having stayed, but if she didn’t I’d probably get sick. With chronic health issues your body dictates what you will do, not your mind.

 My compromise was to take a nap in her chair for a couple hours, and then reassess at 9:30. If she was worse, I’d stay, if she was the same I’d go home.

 Here’s the part where you may stop reading, so just be forewarned, because if you think spirits and communication are ‘WooWoo’ stuff this is not going to sit well. But, it’s my blog and I get to write what I want. And for some people this is going to be very helpful.

 I got myself in a meditative state that I’ve rarely been able to achieve, between the worlds. I imaged walking with my mother to a river’s edge, where the shore on the opposite side could be seen. There were a lot of people there, and I recognized some of them: her Aunt Laura after whom I’m named, her husband, old college friends, other friends and relatives who had passed, and a lot of people whose faces weren’t distinct. And I tried to get my Mom’s soul to recognize that crossing that river wasn’t scary, and to look at all those loved faces who were waiting on the other side for her, waiting to welcome her. But she still held back from crossing.

 Woke with a start, feeling dramatically refreshed, which surprised me considering the above. Mom was the same. The tech & I figured out that Mom’s variable pressure mattress wasn’t working, which may have contributed to the bed sores forming so quickly. But her breathing was steady & unchanged from earlier, which convinced me to leave. My number is posted everywhere, with instructions everywhere to call me if her breathing changed dramatically. And at some point you have to accept that what’s going to happen is going to happen.

 Went home, got a solid 8 hours, then Aunt Beth & I headed over earlier than usual for the RN to arrive and assess. Mom was the same, but let me give a more detailed description, because if someone is reading this before their loved one is dying you need to brace yourself.

 Mom is emaciated at this point. Her eyes are sunken, her body with bones sharp against the skin. Her arms have veins sticking out, which is amazing for having had so little liquid, but her skin feels like tissue paper. It’s hard to look at her and realize that this has happened in under 3 weeks, and it’s even harder to look at her and remember her from 10 or 20 or 30 years ago. She is breathing through her mouth, and her teeth look even more crooked and discolored with the wasting of the gums and face. It’s her but it seems impossible that it’s her. There was fecal material yesterday, none since, and the urine catheter is in, so her bottom area is clean. Her hands are curled, and her arms lay where you place them. Every time it hits me I start to cry, but knowing that the hearing is the last sense to go I don’t want her to hear me sob, so I have to step back and collect myself. I stroke her arm, but there is no response, despite the warmth. Her breathing is deep & regular, her chest covered with a sheet and a nightgown that is cut up the back so they can assess the bed sores more easily. You can see her ribcage through the covers, the rounded prominence and then the sharp drop to the skin over the abdomen. She looks horrible. You can’t imagine that a person can look this skeletal and still be alive.

It is a HUGE comfort to me that this was her decision, and that she continued to be adamant even as she became less & less able to verbalize. I can’t imagine how much worse it would be if the circumstances were different.

 This leads to a soapbox moment: we are letting our elders down in this country, in most states. In about 10 other states there is legislation in place for MAiD: medical aid in dying. If this had been in one of those states Mom could have gone to her internist, expressed her wishes, been evaluated by another doctor to confirm she was terminal, and then given a drug cocktail which she could decide to take or not. (About a third of people who have the cocktail chose not to drink it, but it gives them comfort knowing they have the choice.) It eliminates this horrible part, the semi-conscious to unconscious, which can last for days. We are doing death wrong in this country, and my mother is the perfect example. I called her college roommate in California, same age, having more medical problems, and she said how much better she had it than Mom does, when you have to go through this torture.

Trying to get back to posting daily, so this was Tues, Oct 25, 2022