So the four sisters attended a meeting with the hospital to review our mother’s status and provide their opinion. We were told that our mother is suffering from Apraxia which causes impairment involved in the planning, executing and sequencing of motor movements. We were told that she had difficulty swallowing, food and liquid was getting into her lungs and that she had frequent bouts of choking. We were told that she could not do for herself. That she could not handle any deviation from the straight forward simple tasks. Things like finding an obstacle in her way from getting up from her bed to the bathroom would be a problem. It was recommended because of her age and condition that we place her in a public long term care facility. They were of the opinion that she needed 24hr care to help her eat, get to the bathroom, make sure she doesn’t choke when she eats.
Not the news we wanted to hear. And, not the things I’ve seen in her progress over the last weeks. Not even the things my sisters have seen in the last few days. We were pretty much devastated with the news.
So with this, we went to sit with her. She was having lunch. Eating on her own. Slow but no hesitation on things, no choking. She told me to clean her spoon so she could eat her dessert. After dessert she fiddled with the containers putting them all in her plate so she could put the plate cover on them to cover the clutter. My mother is a neat freak. She doesn’t like clutter. Clutter irritates and depresses her, always has, always will. Hospital trays full of food containers are clutter, all those little containers and covers – no wonder she hesitates, there’s no place to put anything. I can see her looking around wondering where to put the cover so it’s out of the way and looks presentable. It’s a good thing my mother doesn’t run a hospital, she’d be a terror but things would be neat…
Then she decided she had to go to the bathroom. We told her to wait for someone to come and help her but anyone knowing our mother, knows how stubborn and hard-headed she can be. The call light was on and my sisters were lookng up and down the hall but no one was available. Our mom told us to open the bathroom door so she manoeuvre her walker (meanwhile the sisters are freaking out because everyone is busy down the hall). She proceeded to get up on her own – it took three tries but she did it unassisted. Then she started to push her walker but suddenly stop, look down, then unlocked the walker brakes on her own. Then she shuffled to the bathroom, turn the walker around so she can walk in backwards, take a hold of the bathroom railing and tell us to close the door. An orderly showed up to help her get back to bed. Our mother is also a very prim and properly little old lady. Last year she broke her ribs running to the bathroom. So when she wants to go, she wants to go…
She then complained about the towels, complained about the fact that the staff doesn’t know how to fold things properly, complained about the fly on the wall and peeling paint. She was clear, not muddled. Yes she tripped on words at time but she knew. She’s extremely hard of hearing and sometimes she answers the wrong question but is that because she’s muddled or misunderstood the question – she does tend to try and answer what she thinks she was asked. When she gets tired she gets mixed up but she knows it. She is quite aware of her surroundings.
After seeing this none of us feel she’s ready to be institutionalized. We all agree that quality of life is much preferable that quantity. We would all prefer to have her choke to death in her own place than break her spirit by putting her into a long-care facility at this time. Besides we all have bouts of choking every now and then, it doesn’t mean we have to be institutionalized. Also after spending almost every Friday for the last nine years having lunch with her I know what’s going on her her mind: she’s hurrying up to drink and eat before they come take the food away – and we all know what happens when we eat and drink too fast. She’s not done progressing and I don’t say that looking at this through wishful thinking eyes. I’m looking at this through my observations seeing her twice a week since the stroke happen. It would be much cheaper and yes safer to put her in long-term care but our primary interest is that she have a quality of life, not just a quantity of life.
So we’re not going to give up on her.
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