DIFFICULT DECISIONS - AN UNPLEASANT TOPIC

It is widely believed that one of the most unique characteristics that distinguishes the human race is the knowledge of our own mortality.  We're all going to die and no matter how well we deny it death is the "gorilla in the room" of each of our lives.

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.

CREAMY MACARONI & CHEESE

I thought some good old comfort food was in order for all my Jets fan friends out there. This is for you Joey! 

Ingredients: 

1 pound small shell pasta [or your favorite]

1 pound shredded cheddar cheese

1 tablespoon grated Parmesan cheese

1 stick butter

2 cups milk

1 cup sour cream

1 can cream of cheddar soup

2 eggs

½ teaspoon onion powder

¼ teaspoon dry mustard powder

¼ teaspoon cayenne pepper

¼ teaspoon ground nutmeg

½ teaspoon salt

½ cup plain bread crumbs + 2 tablespoons butter melted

Method:

Bring pan of water to boil and cook pasta as directed on package leaving firm [al dente].

While the pasta is boiling, preheat oven to 400* and prepare the cheese sauce.

Combine the can of soup, milk, butter in an microwave safe bowl and cook on 80% power for 4 minutes. Remove from microwave and stir in cheeses and spices and stir. Then add 2 eggs [slightly beaten] to the mixture.

Spray a casserole dish with non-stick cooking spray.

Drain the pasta and pour into the casserole dish. Pour in the cheese sauce and mix to combine.

In a small dish combine breadcrumbs and melted butter and sprinkle on top of casserole. Bake in preheated oven for approximately 40 minutes or until the top is golden brown.

Let sit for 5 minutes after removing from oven.

Serve with white wine or sweat tea and salad and you'll be feeling better in no time.

Go Saints!

FOODIE FRIDAY RECIPE

SUPER SIMPLE CREAM OF SPINACH SOUP

Here is my recipe for a rich and delicious soup.  This is very flexible because you can make it healthy or vegetarian with simple substitutions.  You can also use this basic method for other cream soups by changing the vegetable.  Go ahead and experiment!

Ingredients:

       1 quart of quality chicken* stock. I prefer the organic boxed ones.
            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

Method

In a   4 quart saucepan combine butter and olive oil and melt over medium heat.  Add onion and celery and sauté until transparent while stirring occasionally.  Stir in salt, pepper, cayenne pepper, parsley and thyme.  Remove from heat and stir in flour to form a light roux but do not let get any darker than pale peanut butter.  Add the stock and stir to combine.  Return to medium heat, add spinach and let simmer for 30 minutes. After 30 minutes check to see that all vegetables are soft.

Remove from heat and let cool for about 10 minutes.  Blend the soup.  I prefer to use an immersion [stick] blender in the pot but you can blend batches in a regular blender.  Just be careful not to fill the blender pitcher more than 1/2 full and put a dish towel over the top so the hot liquid won't spatter and burn you!

Return the soup to the stove and add the half & half.  Heat slowly until just before the boil.  Remove from heat, add grated nutmeg and grated cheese.

Serve with extra grated cheese at the table and enjoy!

* substitute vegetable stock for vegetarian 

** substitute fat free half & half for healthier soup

    

WHAT THE HECK IS A DECUBITUS?

Decubitus or pressure ulcers are more commonly known as bedsores. Whether you have or have not yet had experience with this problem there are facts you should know to help prevent sores from developing. They are easier to prevent than to treat.

 interview with a specialist

Daniel J. Bonomo, MD, CWS is a Board Certified Mobile Wound Care Physician.  Yes, he's a specialist who actually makes house-calls!

Christopher

Thank you for agreeing to this interview for my blog.  Maybe we can be of some help to my readers.  Let's begin with "what is a bedsore?".

Dr. B.

A pressure ulcer is a lesion of the skin due to sustained, unrelieved pressure.  They are usually on a bony prominence which causes a break in the skin.  They're very difficult to heal.

Christopher

Where do they occur?

Dr. B.

They can happen to any part of the body but sacral [tail bone]is most common then scapula [shoulder blade], hips and feet but anywhere that there is prolonged contact pressure.

Christopher

Are there common contributing factors?

Dr. B.

Yes.  There are several factors.  Nutrition, contact with urine or feces are both factors but remaining in a position for a period of time is the most dangerous.

Christopher

What is the general course of treatment after a sore has developed?

Dr. B.

Debridement*, cleaning the wound to prevent infection, protection, maintaining moisture balance [not too wet, not too dry] and bandaging.  Most important is to keep pressure off the wound because the main reason that the wound happens is pressure so you want to make sure that you remove that one offense.

*Debridement: The act of debriding (removing dead, contaminated or adherent tissue or foreign material)

according to medicine.net

Christopher

What are the mistakes that people make?

Dr. B.

The most important mistake is not realizing how fast a wound can develop. A wound can develop in less that two hours of direct pressure from sitting in a wheelchair or lying in bed where there is pressure on one of those bony prominences where there is very little padding of fat, skin or muscle.

Christopher

Besides being away of pressure points what else can we do to help prevent a wound from developing?

Dr. B.

Nutrition is very important.  Where there is malnutrition, which is very common in the elderly, a would is 10 times more likely [because]the skin becomes thin and there is no fat to cushion.  Without proper nutrition the skin can't grow.  Protein is how the skin stays intact so we recommend a high protein / high calorie diet.

Christopher

What about nutritional supplements? 

Dr. B.

Yes.  Whey protein supplement twice a day.  Also Vitamin C [500 mg/twice a day] and zInc sulfate [50 mg/once a day].

Christopher

Thank you for sharing your knowledge with us.

I have been dealing with this problem for over two years.  My mother returned home from a short hospital stay with a sore on her tailbone.  With all the attention of Dr. Bonoma, wound care nurses and me the sore is, at best, managed.  At times it looks as though the sore is going to completely heal and then without warning opens again.  There is a weekly visit from the good doctor and I tend to the wound daily.  

Some information that we didn't get to in the interview is more detail on preventing pressure points.  They are not restricted to skin against chair or mattress.  In fact you have to be very careful of skin to skin points of contact.  This is accomplished with small pillows between the knees and ankles and anywhere else there might be a problem depending on the patients position.  Also, you have to make sure the bed-bound person is turned, frequently, from side to side to side.  This is usually done on a 2 hour schedule but you need to discuss this with your health care provider.

We are lucky enough to have a special computer controlled air mattress which provides comfort and cushioning.  It also mechanically turns my mother by inflating and deflating air chambers.  This high tech mattress is a help but does not replace repositioning by hand.

R-E-S-P-E-C-T

As a first generation Italian American my mother was the first in her family to go to college which is even more impressive for a female in 1938.  She always intended to be a teacher. While her sisters played "wife" or "mommy", Adelaide always played "teacher".  She reached her goal and lived out her ambition as a much-loved and widely respected educator for more than 40 years before retiring.

Along the way she also married, had three children and was very involved in clubs, organizations, politics and her church.  This was not a woman to be ignored nor to be taken lightly and she never was.  My mother had the gift of what we now call "people skills".

ADELAIDE HAS ALWAYS BEEN AND REMAINS A VERY STRONG WOMAN

It has been a long, slow and depressingly steady downward progression of symptoms.  I liken the position of caregiver to that of a stay-at-home mom but with a very distinct difference.  It's all in reverse.  We have all the same duties and responsibilities of a soul totally dependent upon us for all of life's essentials.

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.

DO NOT FORGET 

I have found it most helpful and comforting to remember the woman that my mother has always been.  Adelaide no longer speaks intelligible words although she often tries to communicate in her made-up language of sounds and intonation.  She smiles when she sees people.  I see the remains of the wonderful personality that she had.  I tease her and joke with her and sometimes she rewards me with a belly laugh.  That's the best gift.  


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.   

WE TALK TO OUR PETS.  WHY WOULDN'T WE TALK TO OUR LOVED ONES?

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 

"SHE'S STILL ALIVE.  SHE'S STILL HAS FEELINGS". 

 Not only only is it the right thing to do but it will make you feel better.  Facing this situation we all need comforting.

EVEN CAREGIVERS GET THE BLUES

The sun is shining brightly on this average January Saturday morning here in suburban New York. My morning chores are done. My mother has been bathed and fed and is resting comfortably. She's feeling well as is evident by her abundant and generous smiles. My old “man” Mickey [golden retriever]has actually gotten off the bed and out the door before noon. He has had his morning cookies and his ritual roll around the carpet in the den.

It's a good day because I have been invited to a friend's house for dinner this evening. Anytime I get to be out of the house and enjoying the company of dear friends is a welcome change from my usual 24/7 stay-at-home duties. Monotony is difficult. The day in and day out repetition of chores combined with looking at the same walls and furniture and colors takes it's toll on even the cheeriest of dispositions.

tools of the trade

Here is a "must have" list to make it possible to stay sane at home:

• a computer and an internet connection
• Tivo or some such DVR
• Netflix
• hobbies
• friends
• dreams

The computer is the lifeline connection to the outside world. You can stay in touch with news, pop culture, trends and friends. Of course you can also use it for necessities such as ordering groceries and medical supplies to be delivered to your door and for finding answers and support when you need them.

The DVR may at first seem superfluous for someone who doesn't go out very much but that's not the case. Firstly, you can record extra TV shows and movies to watch when there's nothing on at the oddest hours when you have to stay awake to tend to an ailing patient. Secondly, you can pause a live TV show if you suddenly have to drop everything without warning. This saves quite a bit of frustration and allays resentment.

Netflix just because it is delightful to have rental movies delivered directly to your door.

The electronic book is a luxury that I have only recently discovered thanks to some dear friends. The beauty of it is that you can sample and buy books and periodicals and have them instantly downloaded to your device. Once again this gives you choices without having to leave home.

.

Having hobbies and interests is vital to keeping your mind and spirit intact as well as providing topics for conversations with your friends. I'm fortunate that I have always had a lot interests. Cooking, photography, writing, gardening and pottery are a few of the ones that take up a lot of my spare time. Putting your hands in the soil or the clay takes all your cares away for a while. I keep several flowering plants indoors so that I have color and cheer in the bleak winter months.

Although having friends is self-explanatory and necessary for everyone whether or not you stay at home, it is particularly priceless for the caregiver. Company and human interaction cannot be left out of your daily life. Having a support structure is indispensable and irreplaceable. Nurture and cherish your friendships. It is so enriching to keep in touch with your friends and also important for when you have time to leave the house.

Finally, remember that your situation is temporary. It may be for a week or a month or years but it is finite. Hold onto your dreams and aspirations. Work on fulfilling them. Make plans for your days or hours off and for the future. Use your time at home to your advantage.

T95UFMHJH2M7

Recipe: Super Simple and Delicious Pasta Fagioli

Sauce Ingredients:

(1) 12 oz. can tomato paste

(1) small onion

(2) tablespoons extra virgin olive oil

(1) teaspoon salt

(1/4) teaspoon freshly ground black pepper

3 or 4 fresh basil leaves

(1/4) teaspoon dried oregano flakes

Other Ingredients:

(1) pound small elbow or similar pasta.

(1) 12 ounce [approximate] can of white kidney beans

red pepper flakes [optional to taste]

Method:

Dice onion into fairly small pieces and sauté in olive oil over medium heat until just lightly colored. Put all ingredients into a 1 quart oven-save pan along with

2 cups of water. Cover and cook in the center of a 330* oven for approximately 1 hour.

Cook pasta as directed on the package. When pasta is nearly done add the beans to the boiling pasta. Drain pasta reserving about 1/2 cup of the cooking water. In a nice serving bowl combine the pasta/beans with the sauce. Add some of the cooking water back in as desired. There should be a rather soupy consistency to this finished dish.

Add a loaf of good Italian or garlic bread and your favorite Chianti and mangia!

FRIDAY NIGHT MEANS FAMILY NIGHT

As long as I can remember Friday nights have always been family night. When I was young it wasn't uncommon for 10 or more extended family members to join us at the kitchen table. My mother's sister Gloria [who lived with mom and me] would put on a feast. More friends and family would usually drop in later for coffee, dessert, gossip and nostalgia.

I loved Friday nights. The house was filled with love and fun and cousins to play with. The aroma of tomato sauce was inescapable. When you were there you knew you belonged. That's where and when I developed my loving relationship with food and cooking. I watched Gloria cook. I pitched in. I saw the look on everyone's faces as the food was being served.

Family night was always a deleted scene from MOONSTRUCK

Sure there was love and food and fun and strong ties to the past but don't think it was all smooth and congenial. Italian families, my family, don't work that way. Along with the niceties were the arguments, temperaments, gossip and scandals. No quiet bunch, this Clemente-Lanni clan!

And then there was the humor

Larger-than-life personalities seems to be genetic. When uncle George [Orlando] and his wife were in the house you knew there were going to be laughs. As a kid I had to miss a great deal of George's humor because I was sent out of the room with the other kids. I could hear the laughter coming from the kitchen and I sorely wanted to be in with the "grow-ups". George had colorful language. This was long before political correctness. George was our very own Richard Pryor or Red Foxx. There's a lot of George in me, at least my sense of humor.

Times change and family shrinks

Family members have fallen by the wayside and my generation is spread all over the place with kids of their own but I have continued the Friday family tradition. Sure most weeks there are only 4 or 5 of us but I cook family favorites and we sit around the table and yell and argue and reminisce.

Tonight's menu:

Pasta Fagioli [we say pasta "fazool"] *

Breaded chicken cutlet

Salad

Italian cheesecake

*recipe to follow

"Please allow me to introduce myself"

This is a milestone year for me. I turned 50. "Middle age" is a misnomer. I don't plan on living to 100 although I'll leave that up to genetics. That's a toss-up because my father died at age 50 but my mother is nearly 90 and has three surviving siblings all over the age of 80.

My early adult years were carefree and exciting. I was an actor, producer, director and at various times in my life I was also a caterer and antiques dealer. I had my hand in a lot of things. I spent all my free time traveling the world seeking adventure, culture and cuisine.

Life Changes Unexpectedly

It's good that I did my roaming when I was younger. Although I'm the same guy I was back then, my circumstances are not. These were great times but unfortunately every time I would return home I would notice that my mother was crying a little more, becoming reclusive and increasingly forgetful. This got pretty hard to ignore, no matter how hard I tried.

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.

That was 20 years ago.

Family and life choices

I have watched my mother descend through so many unpleasant phases of this ravaging illness. Now this formerly articulate woman has arrived back in "infanthood" totally dependent on others for her daily survival. Her journey has also been my journey. Now I want to take others along with us.

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.

Why blog?

What can you expect to find here?

I plan on sharing amusing stories of family and friends.

I hope to give practical tips and advice for other caregivers.

You can be sure to hear a lot about food and theater. I'm going to share recipes, menus and cooking stories.

When I get the chance to travel you are surely going to hear all about my trips.

Join me

Please feel free to contact me with any questions. Tell me about your experiences as a caregiver. Or just introduce yourself to me.