As many of you know I cared for my wonderful father in my home for 5 years. I found this website during that time and I thank God that I did for it got me through those years and months until my dad died in a nursing home. He was out of his mind due to hepatic encephalopathy (brain swelling related to liver failure). The last few months of my dad's life I lost 30 lbs. I couldn't sleep. My brother and I spoke by phone at least 3 times a day. I was living a level of stress I never knew existed and at the center of all of this was my brilliant, loving, funny dad who had reverted back to being a child. And I was the mom. So many times during this period I prayed for my dad to pass away. I wanted him to be out of his misery and yes, I wanted to be out of my own misery as well. I have come to believe that feeling like that is normal. How many times have we seen a post here from an adult child caregiver who wishes their parent would just pass away?
But what got me to talk about it here was a patient I had yesterday, Mr. Smith. Mr. Smith is 89 years old, he lives alone in a large house although he only occupies 2 rooms of the house now since he can barely get around. In going over his medications I noticed he had recently been prescribed a fungicide and the first thought that popped into my head was that this guy is so old he's growing mold on his body! He doesn't have dementia but is incontinent however he refuses to wear Depends. So every couple of hours he pees in his pants and his aide has to clean him up and deal with the soiled clothing. And at 89 he pees a lot. While he can eat he can't prepare food for himself because he has no balance. He has a walker and is very unsteady on his feet. He has 24/7 care and ulcers on his bottom because he sits all day. He's educated, charming, personable, a widower with 2 grown daughters. His daughters take care of his bills and his Dr.'s appointments. He shared with me that his one daughter does more than the other daughter. His house smells like urine and 'dirty body' and is shabby and in disrepair. Is this quality of life?
How about Ms. Jones: Ms. Jones lives in a broken down trailer which is situated in an adequate neighborhood. She's been there for decades. She had maggots in her food and rats in her pipes. She's caught in the middle of a family feud between her son and son-in-law. She falls frequently but has yet to sustain a serious injury. After each fall her family insists she be taken to the hospital to get checked out. Ms. Jones complains bitterly about this each time. Ms. Jones feels that she grows weaker in the hospital and can't wait to get home to continue her exercise routine which she does faithfully everyday. Ms. Jones cries. She worries that she's going to outlive her money. Her heart is broken over this feud in her family. She's lonely but she refuses to move into Assisted Living. She insists on staying at home. Part of her family pays her bills, part of her family takes care of her other business. She doesn't drive anymore and depends upon others for her groceries and transportation to Dr.'s appointments. I can almost predict that Ms. Jones will fall any day, break a hip, and spend the rest of her life in a hospital bed until she slowly drowns in fluid from her congestive heart failure or from suffocation from pneumonia which is sure to follow such a fall.
Last we have Mr. Green: A former physician, Mr. Green has lost the use of his legs due to peripheral neuropathy. He lives with his wife in a large home. Over the years they have installed 2 stair lifts, a Hoyer lift, and mechanized pulleys that carry Mr. Green all over the house including the 2nd floor. Mr. Green sleeps downstairs in a hospital bed and his wife usually sleeps in a chair beside him. She has for years. Every once in a while she'll go upstairs and sleep a while in bed. Both Mr. and Mrs. Green are in denial about their living situation. Neither one sees a Dr. Ever. Mr. Green has a catheter and very poor eyesight. He has 24/7 care that the Green's ask to sit in another part of the house, out of the way, until needed and beckoned by intercom. Mr. Green thinks that some day, when he's gone and his house goes up for sale, his house would be a wonderful find for someone who is disabled. I didn't have the heart to tell him that any real estate agent will insist that the stair lifts and pulleys be torn down. And I knew that someday it would be his adult daughter's job to put this house on the market. Having gone through that myself I knew what she was going to be in for and wondered if it had occurred to her. By the way, the daughter visits for about 30 min. a week.
These are just 3 real example of many of the patients I see. They're holding on for dear life to what little they have left. Each one has various ailments and illnesses and each one has at least a dozen of medications they take everyday. For heart failure, diabetes, high blood pressure, etc. Do we really need to live this long?