My sister had told me to "look for the light" when I went to the nursing home. She said that when there is something to hide, it will be dark. And in addition, to look for natural light, which is healing.
When I arrived, the young woman who showed me around was very nice. I got to look at everything - except the kitchen, didn't really think to ask about that. I got to see all the rooms - there are only about 40, it's a small place. There are 2 wings on the building - and a courtyard in the middle - so that every room has a big window, and most are sliding glass doors, so there is lots of natural light available when the drapes are open.
So that takes care of the literal search for light. My sister said I'd be able to "feel" if the place was right - or more specifically, I'd know if the place was WRONG. I didn't get a bad feeling about the place, so I figured that was a good place to start. I spoke to Mom's friend who is there for rehab, and she spoke very highly of all aspects of it.
And I saw light in the smiles and attitudes of the staff I met, at least on that first day - and with some of them, that continued. "This little light of mine, I'm gonna let it shine" And they did.
Looking for the light
My experience with my mother and end of life (Hospice) care.
Wednesday, November 6, 2013
Tuesday, November 5, 2013
Decisions
I always thought my mother would live well into her 90's. Her mother was 94 when she died, even though she'd had a bout with colon cancer at age 72 (in those days, they'd remove a gallbladder by opening up the whole abdominal cavity and look to see what else was going on - they found the small tumors in the colon, removed them, and she was fine for another 20+ years). Mom's father lived to age 88; his sister died in her 90's. But Mom is only 82.
She'd been complaining, over the summer, of abdominal pain, constipation, lack of appetite. The doctors worked on adjusting her high blood pressure medications. Finally last month, the pain was so bad, she decided to call the ambulance and go to the ER (a patient coming in by ambulance gets attended to faster than one who is brought in by others). She spoke to her doctor, then made an appointment for Thursday of the coming week, thinking she could hold out until then. But on Wednesday, she couldn't take the pain anymore and called the ambulance. The ER doctors did a CT scan and found masses in her colon, pancreas and liver. They sent her home, and she came back the next day for a biopsy - which didn't happen until Friday.
To me, the length of time consumed by each stage of the diagnosis and prognosis and the decisions about treatment, is fascinating mostly in the negative. Things are happening so fast, it's mind boggling when you look at it week to week. Some days though, like today - the day we transfer from hospital to hospice - seems like one of the longest I've ever experienced.
At any rate, the diagnosis was stage 4 cancer, spread to the colon, pancreas and liver. Chemo and radiation would extend her life by only weeks, if at all, and come with side effects that would wreak havoc with her quality of life. So my mom, raised on herbs and homeopathics, DO's rather than DM's, and embracing a more natural approach to health, decided that no treatment was in order. To let nature take its course while controlling the pain as best we could, and hopefully to enjoy life as much as possible with trips to the beach and eating foods she loved but wasn't supposed to have due to her high blood pressure - this was her choice. A choice I respect completely, by the way. My mother respected the choices I made in my life, and i was determined to return the favor.
That was the plan. Ah the best laid plans of mice and women - obviously the universe had a plan of its own. Mom went downhill quickly. The weekend after the biopsy (8 days later) I took her to lunch at Coco's, one of our traditions. A couple days later, her ankles had swelled, and she found it more and more difficult to get around her apartment, even with her walker. On Vicodin for the pain, she'd find herself standing in the middle of the room unable get the proper signals from brain to feet. She was getting really frustrated. She tripped over the cat - luckily didn't fall. Soiled herself frequently even though she wore "protection." And the Vicodin made the constipation worse, so she took stool softeners, which started a vicious cycle of constipation and sudden release.
She couldn't come stay with me - I'm on the second floor and she'd never make it up the stairs. Plus I have my own cats for her to trip over, and a full time job that I really need to keep. So less than 2 weeks after the biopsy, I get a call from her friend and neighbor who has been checking up on her daily - she'd gone to the apartment, and Mom was gone and her bedding was soiled. 35 miles away at work, I call the ER - they of course would tell me only that, yes, she was there, and she was "fine." I really wanted to slap that nurse - whatever else she was, Mom will never be "fine" again. But, there's a law preventing them from giving out information over the phone.
By the time I arrived, it was late afternoon. I'd spoken to her neighbor, who with another friend had actually visited her in the ER twice by then. The hospital was going to admit her overnight, but she would either have to have hospice care, or - well, I'm not sure what the "or" was. Take care of herself? Out of the question at this point. She had a choice of 3 places she could go - nursing homes essentially, places that provided 24 hour nursing care, where a Hospice organization would come in and manage her care. As the staff moved her from the ER to a hospital room (12 hours after arrival), we discussed the options. She was supposed to decide in the morning. Luckily, she was admitted on Friday so I had the weekend to try to deal with these issues.
As I left the hospital, I called my sister. She lives about 1000 miles away. She can't help - not because she doesn't WANT to, but because she's trying to raise her grandchildren because HER daughter is extremely ill. Still, it's good to have another brain to bounce ideas off of. She suggested I visit our first choice - a place nearby where Mom had a friend in rehab for a hip replacement. She'd get to visit with this friend. And her senior friends from the apartment building, could visit both of them in the same day, easier for all.
My sister also said, "look for the light." She meant that figuratively as well as literally.
She'd been complaining, over the summer, of abdominal pain, constipation, lack of appetite. The doctors worked on adjusting her high blood pressure medications. Finally last month, the pain was so bad, she decided to call the ambulance and go to the ER (a patient coming in by ambulance gets attended to faster than one who is brought in by others). She spoke to her doctor, then made an appointment for Thursday of the coming week, thinking she could hold out until then. But on Wednesday, she couldn't take the pain anymore and called the ambulance. The ER doctors did a CT scan and found masses in her colon, pancreas and liver. They sent her home, and she came back the next day for a biopsy - which didn't happen until Friday.
To me, the length of time consumed by each stage of the diagnosis and prognosis and the decisions about treatment, is fascinating mostly in the negative. Things are happening so fast, it's mind boggling when you look at it week to week. Some days though, like today - the day we transfer from hospital to hospice - seems like one of the longest I've ever experienced.
At any rate, the diagnosis was stage 4 cancer, spread to the colon, pancreas and liver. Chemo and radiation would extend her life by only weeks, if at all, and come with side effects that would wreak havoc with her quality of life. So my mom, raised on herbs and homeopathics, DO's rather than DM's, and embracing a more natural approach to health, decided that no treatment was in order. To let nature take its course while controlling the pain as best we could, and hopefully to enjoy life as much as possible with trips to the beach and eating foods she loved but wasn't supposed to have due to her high blood pressure - this was her choice. A choice I respect completely, by the way. My mother respected the choices I made in my life, and i was determined to return the favor.
That was the plan. Ah the best laid plans of mice and women - obviously the universe had a plan of its own. Mom went downhill quickly. The weekend after the biopsy (8 days later) I took her to lunch at Coco's, one of our traditions. A couple days later, her ankles had swelled, and she found it more and more difficult to get around her apartment, even with her walker. On Vicodin for the pain, she'd find herself standing in the middle of the room unable get the proper signals from brain to feet. She was getting really frustrated. She tripped over the cat - luckily didn't fall. Soiled herself frequently even though she wore "protection." And the Vicodin made the constipation worse, so she took stool softeners, which started a vicious cycle of constipation and sudden release.
She couldn't come stay with me - I'm on the second floor and she'd never make it up the stairs. Plus I have my own cats for her to trip over, and a full time job that I really need to keep. So less than 2 weeks after the biopsy, I get a call from her friend and neighbor who has been checking up on her daily - she'd gone to the apartment, and Mom was gone and her bedding was soiled. 35 miles away at work, I call the ER - they of course would tell me only that, yes, she was there, and she was "fine." I really wanted to slap that nurse - whatever else she was, Mom will never be "fine" again. But, there's a law preventing them from giving out information over the phone.
By the time I arrived, it was late afternoon. I'd spoken to her neighbor, who with another friend had actually visited her in the ER twice by then. The hospital was going to admit her overnight, but she would either have to have hospice care, or - well, I'm not sure what the "or" was. Take care of herself? Out of the question at this point. She had a choice of 3 places she could go - nursing homes essentially, places that provided 24 hour nursing care, where a Hospice organization would come in and manage her care. As the staff moved her from the ER to a hospital room (12 hours after arrival), we discussed the options. She was supposed to decide in the morning. Luckily, she was admitted on Friday so I had the weekend to try to deal with these issues.
As I left the hospital, I called my sister. She lives about 1000 miles away. She can't help - not because she doesn't WANT to, but because she's trying to raise her grandchildren because HER daughter is extremely ill. Still, it's good to have another brain to bounce ideas off of. She suggested I visit our first choice - a place nearby where Mom had a friend in rehab for a hip replacement. She'd get to visit with this friend. And her senior friends from the apartment building, could visit both of them in the same day, easier for all.
My sister also said, "look for the light." She meant that figuratively as well as literally.
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