Saturday, January 30, 2010
It's one thing to take responsibility for our own end-of-life decisions, and we all must, but it is a more difficult task to take responsibility for someone else's. Many of us have found or will find ourselves in that very situation. When a loved one is seriously ill or incapacitated there are choices and decisions to make. In the midst of sorrow and grief we are thrust into the seemingly impossible end of life decisions.
There are so many factors that come together ranging from the emotional to the practical to the ethical. In many cases there is no absolute right or wrong but only what is right for you , your loved one and your family.
What would the patient want?
First we have to deal with the sadness at the immanent loss of a loved one. Then we have to deal with the enormity of the decisions we are being asked to make. This is an overwhelming sense of responsibility.
Comfort, love and the minimization of pain are at the top of the list of concerns. How much extraordinary medical measures are we willing to have performed and to what benefit. What is the patient's "quality of life"? Are we sacrificing comfort for negligible gain?
Beyond "extraordinary" measures, how much "ordinary" measures are we willing to have withheld? There can be questions of feeding tubes, antibiotics, IV nutrition and even fluids. These are questions that need to be fully discussed with the doctor and family members. There are differing opinions as to what is needed for the most comfortable passing.
Why the Republican "death panel" myth is cruel
During the course of the Healthcare Reform debates of the past year one of the most irresponsible false issues raised was the allegations of so called "death panels" to force end of life decisions. This is not only nonsense but hurtful. The truth is that this portion of the bill dealt with insurance paying for the doctor consultation visit regarding end of life decisions. It is imperative that we discuss these decisions with medical professionals in order to make the most informed, humane decisions. The doctors do not make these decisions. They offer the choices and discuss the prognosis with the loved one who is responsible for making the decisions. It is criminal to think that anyone should be asked to make life's most important decisions without the benefit of being as well informed as possible.
Tough decisions are easier in good times ....
Don't wait until the dreaded time arrives. Have discussions with loved ones while they are well and able to make their wishes known. Discuss your own end of life philosophy and wishes with your loved ones to spare them from having to wonder. Consult a legal professional, fill out healthcare proxies and make a living will. No one wants to deny his own immortality but doing so now will alleviate some stress later.
With decisions made you can spend your energy and focus on the patient. Give your comfort, love and support. I held the hand of a loved one and spoke to him and comforted him while he passed from this life. I know this helped to make his final moments peaceful for him but also made his passing easier for me to accept as well.
Death is one of the few experiences that we all have in common and yet it is one of the most difficult and least discussed topics in our modern civilization.
Monday, January 25, 2010
Friday, January 22, 2010
1 quart of half & half**
1 large package frozen chopped or 1 pound fresh spinach
1 large white onion sliced
2 stalks celery chopped
1/4 cup flour
1 stick butter
1 tablespoon olive oil
1 teaspoon dried parsley flakes
1/4 teaspoon dried thyme
1 teaspoon salt
1/4 teaspoon fresh ground black pepper
1 pinch cayenne pepper
1 pinch fresh grated nutmeg
3 tablespoons grated Romano or Parmesan cheese
Wednesday, January 20, 2010
Monday, January 18, 2010
Parents have the luxury of embracing every day with the knowledge that life is getting easier. Infants slowly become little people. They begin to recognize faces, they find language and they get potty trained. The timeless miracle of life brings the awesome joy of a developing personality.
The caregiver of an Alzheimer's patient has to memorize every moment and be grateful for another day of speech or one more day of being recognized by the woman who gave you life. We have to witness all the characteristics of adulthood disappearing one at a time.
Most importantly is that I talk to her constantly. I talk about current events. I reminisce about our many travels. I gossip about the family and I complain to her. I also have a TV on for her during waking hours for stimulation.
The point is that no one knows how much she comprehends. No one knows what she's thinking [except when she gives her disapproving "teacher" face] or what she would like to be saying.
Evidence has proven that even patients in coma hear and understand some of what the outside world is communicating.
Nothing annoys me more than ignoring or discounting my mother. Most of the doctors, nurses and aides that we have dealt with have been terrific. Then there are the others. I have witnessed nurses entering her hospital room and proceeding to stick her with needles or poke or move her without even acknowledging her. They could be tending to a stone for all the humanity they exhibited.
The best of the home health workers that we have had, and there has been a parade of them over the past 10 years, treat their patients as I do. That is a gift.
This failure to acknowledge is not limited to strangers or professionals. It is most difficult to understand when this behavior is shared by the occasional friend or family member. I know we all have are own way of handling difficult and uncomfortable circumstance but sometimes I just want to yell
Saturday, January 16, 2010
- a computer and an internet connection
- Tivo or some such DVR
Friday, January 15, 2010
Thursday, January 14, 2010
The doctors said Adelaide had clinical depression. That’s not too hard to understand or accept. After all she had dealt with so much with her husband dying so young and now she was retired from her beloved teaching. A lot of people get depressed when they retire. Don’t they? Well at least there were medicines to try. And try we did…for years with no improvement. Finally there was a new doctor who introduced a new phrase to the family: Alzheimer’s disease.
That’s a pretty ugly phrase.
I am the youngest of her children and have been her main caregiver for the past 10 years. She lives with me and I wouldn't have it any other way.
I have become a very strong, loving manager. I have found hidden inner strength, both physical and emotional, to cope with becoming the “parent” to my mother with all that is implied. There have been so many “firsts” along the way and every one of them has made us stronger. From the first time my mother forgot a familiar face to the first time we faced incontinence I had a private cry followed by resolve to work though the challenge.
I, like Gloria Gaynor, will survive!
I'm fortunate to have great friends and an amazingly strong family. I still have a great, interesting and rich life. I have learned a great deal about caring for an Alzheimer's patient and mostly I have learned a great deal about myself.