Quality of life?

Dear Ma,

What kind of life is it to lie in a bed day after day with only the television for company and the occasional visitor?  Your daily highlights consist of dressing changes; personal care and meal delivery and me.  They wanted to place you in a ‘comfort chair’ so you could be wheeled around and get you some social contact but they deemed it unsafe when you tried to get out of bed because you thought you could stand and walk.

What life is it to have no real awareness of what’s going on around you?  Sometimes I understand what you’re trying to tell me but more and more often I can’t translate.  You sometimes see things on the television you think are real and can no longer read your beloved books.  Leo, the snow leopard, your cat blanket, and blue ‘blankey’ are now your biggest comforts.

What kind of life is it when you are given pain every time you are moved and you yell and scream?  The pressure sores on your bottom have nearly healed but they no longer want you to sit in a chair for fear of a reoccurrence.  They also don’t think you can ‘cope’ in a chair.  Your left leg has suffered from another infection but is slowly improving but still looks nasty.  Your right ulcer is holding its own.

What kind of life is it when every pleasure you once enjoyed is taken away from you?  I sit with you and sometimes you cry and I stroke your face telling you everything is alright. But it’s not.  My heart is breaking and I wish you’d find peace.  Sometimes you tell me you want to go.  You tell me you’re tired and I wish you sleep.

Today I broke down with staff after trying to fight battles that have already been lost.  I’ve become close to these people and I know they try their best for you.  I know that you will no longer be able to go out with me.  I know that you probably won’t feel the sun and breeze on your face any more.  I hate that every thing that once gave you pleasure has been taken away from you.  When they started the morphine it was to give you quality of life.  A life without pain.

I will continue to do my best for you and will hold you close to me until your time comes.

Your loving daughter,

Jennifer

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