Caring Is Not Enough Blog

it was very helpful to me to read nytimes article “taking care: helping loved ones as they age” dated 12-18-07 and also nytimes article “choosing your own exit” dated 1-28-09, in addition to many other articles written in the new york times “new old age”. this led me to your site. ( i hope i haven’t written too much, i’m just very proud of my Mother and how she handled her own passing )

my mother passed away june 2008. she was diagnosed with liver cancer february 2008. liver cancer hits very suddenly and i only took care of her for four months, although at the time it felt like much longer.

i think my mother did everything right regarding her passing so i want to share it. first of all, she had made a health care proxy years ago, which stated that she wanted a “pain free and dignified” death; “medication for pain even if this meant shortening her life”. secondly, upon learning from a doctor that a ct scan (i think that’s the name for it) said it was cancer of her liver but that a biopsy was necessary to know for sure, she immediately said “no”. at the time i was shocked because i thought we should know for sure. afterwards i realized she was right. why should she suffer though a biopsy. she obliged me a couple of weeks later after she was home from the hospital and we went to see her doctor and he gave her a prescription for a PET scan — that told us everything we needed to know regarding the fact that she was going to die. thirdly, she decided that she wouldn’t have any treatment that could possibly extend her life. she told me that she did everything in terms of treatment ten years ago when she had cancer of the uterus because with that there was a chance of a cure. she also told me that she didn’t want to extend her life and destroy the quality of life she had left. i know that my mother thought all this out years ago — that she had decided what she would do if she was ever given an incurable diagnosis. in other words: my mother was prepared. this made things easier for me.

i didn’t really take care of my mother so much as looked after her because all i did was facilitate her. she made all decisions. that was a gift to me although that was just my mother being herself — she was always like that. she was a very independent, very strong, very determined, and very smart person.

during those four months, while i was looking after her, i used to worry that she would fall and break something and end up in a hospital and then she wouldn’t be able to be at home where she wanted to be. i slept very lightly those four months because she was always getting out of bed at night to use the bathroom. i was attached to her in a way that i would wake up when she woke up. i’ve told people that it was like having a new born but without the joy. i would go downstairs and assist her or at least just be there whenever she woke up. she didn’t want my help, at least during the first couple of months, and i was very careful to keep my distance as much as i felt possible. she would say to me “what are you doing up” and i would say “oh, the dog woke me up – i had to let her out in the yard”. i did tell her, eventually, of my concern about her falling and i know she made a concerted effort not to fall. and you know what — she got up every day of her life except the day she passed away — and she never fell.

before she left the hospital, after her diagnosis in february, a hospital staff member came to her room and asked if she wanted hospice care at home — thank goodness for that !

in june when her pain became suddenly worse and uncontrollable with the pain medications she was taking, a hospice nurse came overnight and gave her morphine. unfortunately, that did not control her pain. also, a hospice doctor came and said she needed to be in the care of a hospice hospital, and she spent 24 hrs. in a hospice floor of a hospital before she passed because she needed intravenous pain medication in order to control the pain.

i wish she could have stayed at home because it would have been easier for her. at the time, i did not know that the hospice nurses and doctors cannot give intravenous medication or even injections. if i had known that i would have made other arrangements in case her pain became uncontrollable.

there were a few other things i wish i had done differently, like being more upbeat but i was so tired and i didn’t know how long she was going to live, how long i could last in the situation; expressing my love for my mom a bit more — even though my mother didn’t like any kind of mushy stuff — i think i could have gotten away with showing more little kindnesses than i did; talking too much during her last hours in the hospice room — forgetting that one of the last senses to go on somebody who’s dying is their hearing. there’s probably a few other things i wish i had done differently, like maybe had some soothing music in the room when my mom passed away, ect…

i was given good advice from someone after i decided to “take care of” my mom and that was: a) it’s learn as you go, and b) know going into this that no matter what you do, know that there will be somethings that you will wish you had done differently. so, you know, i did okay.

when my mom passed away she had sufficient pain medication to ease her into death, which is what she wanted — i just facilitated it. even with a health care proxy and everything else i still had to advocate for her when we got to the hospice hospital. i had to get on their case to start intravenous pain medication and in a gentle way so as not to put them off when all i really wanted to do was scream at them — i’m glad that i didn’t because the doctors and nurses ended up to be very caring people — i did not scream but with my words and my passion i made two doctors and one nurse cry. which then made me cry. they then started the pain medication.

i wasn’t there when my mom passed; i didn’t feel the need. i felt the work was done. If i wasn’t so tired and strung out i would have stayed with my brother and my husband. (as it was, i took the opportunity to drive home the home health aide that was provided by the hospice program — i wanted her to get some rest in case we needed her later that night.) i left a book for my brother to read to her — my mother was in the middle of re-reading an agatha Christie book (her favorite author, a hercule peroit book) before she went into the hospice hospital.

my brother told me that after he was reading to her for about an hour and a half a nurse came in to moisturize my mother’s lips and my mother smacked her lips together like a person would after applying lipstick. So the nurse asked her to smack her lips together again if she hears her, and my mother did. my brother, being the beautiful person that he is, said “let me try that” and he swabbed my mother’s lips and she smacked her lips together again. then my brother took the opportunity to tell her that he, myself and our two sisters would all look after and take care of each other. he kissed her on the forehead and she had one tear come out of her eye and she passed. the pain medication eased my mother’s pain and my brother’s words eased her mind. i told my brother it was like that song by simon and garfunkel “like a bridge over troubled waters i will ease your mind”.

my mother made all her decisions, I looked after her for four months at home, my sister stayed overnight with her during that 24 hour period she spent in the hospice floor of the hospital, my brother was there when she passed. we each shared what needed to be done, and we are all looking after and taking care of each other.

— Claire Ann

thank you. good luck to you and continued sucess with “caring is not enough”!