Expert: Mary Gordon - 2/18/2011

Question
QUESTION: Hi Mary,

I wanted to ask an expert like you on a few issues that we've had with my Dad.  My Father was diagnosed with Dementia many years ago and was being treated with taking Galantime, and a pill for depression, along with other issues of prostate.   His health began to decline several years ago when he had to stop driving.   He was always so tired and wanted to sleep all the time.  He got progressively worse as they years went on, and he could no longer bath himself, was incontinent, short on breath when he walked, and very fatigued.  All his doctors said this was the progression of the disease.  We slowly watched this disease take my Dads energy away all together.  It was before Xmas when Dad was acting and talking very oddly,and at this time Mom and I took him to see a new primary care doctor, and they found a UTI and so antibiotics were prescribed..   Basic Blood test showed his blood to be fine, however they did not do anything more and should checked nutrition in an 88 yr man so weak.  When we explained he was not eating, sleeping all the time, and could barely get out of bed on his own, no energy to lift his head, or even take 2 steps to try to walk.. He was so weak, he couldn't sit up for more than 2 or 3 minutes.   He had problems walking and moving his limbs, and it was bad.  The doc kept saying these were all signs of Dementia.   He was having episode of falling out of bed, and we were concerned.   Several weeks later, we tried a respite care at a nursing facility, and Dad would barely eat there too.  They tried to get him in a sitting position and begin from there, but he couldn't.  They took a blood test at this facility found that Dad's prealbium level was at a 3 and very malnutrition..The normal is 17-34.  He wouldn't drink much and would cough when he did, and would only take a few bites and he wanted no more.   So a day later, he falls out of bed at the nursing facility, and they rush him to the ER where they did a head scan and they revealed he had lots of fluid in his left lung, and possible nodules of cancer surrounding.  Once at the ER, his breathing changed and he began to breath very loud and rapid. They day they performed a thoracocentesis and drained the fluid.  The next day his breathing seemed much better. They said he was aspirating and no food or drink or it woulkd fill up the lungs. I know they had IV drips going,but wasnt he starving, I kept asking.  This man loved to eat, but you would think they would try to nurse his nutrition level back and let the body try to fight back on it's own.   He could barley eat and swallow on his own, and he would choke a little, but he told me in his hushed words, he was hungry, but he also told me he was ready to die. We asked to try a feeding tube to get his nutrients up. After 4 attempts of putting the tube in his stomach,I watched the nurse pour 2 large clear glasses of fluid down the gtube and I asked what it was for , and she said this was for a scan they were doing to attempt to do a biopsy on the nodules in a few days.  Later that night, they called us and said that they found that he had a hiatal hernia from the xray and they couldn't get the tube in the stomach to feed him.  Where did this fluid go?  Did it fill up my Dad's lungs, as his breathing changed back to worse again, and you could hear gurgling coming from his mouth. They could not feed my Dad by the feeding tube, they couldn't remove the fluid in the lungs so he could breath, and they couldn't keep the fluid from re-entering the lungs, or did the nurse put in the fluid in the lungs by mistake.  I don't know.  They called and said Dad had was having congestive heart failure, pleural effusions, respiratory.. That night they explained they also found Cancer cells and diagnosed him with cancer lymphoma diagnosed from the fluid in the lungs drained earlier.  He died the next dad when his breathing was very slow.  They removed the IV's as his body was swelling, and he took his last breath 3 hours after   I know this was long, but I still cannot get my mind off that they could of done more, or did they cause his death earlier than it should of.   Did he die of starvation because of his low prealbuim levels. Did they let him die because he was old?  We asked them to help, but we didnt want breathing machines.  I know my Dad was a very sick man, and many doctors failed to diagnose him correcly and that angers me about our health care system. I know the dementia played a big role in this and slowing my fathers body down, and if he didn't have dementia, would he of been better off, and is dementia hereditary.   I just want to reach out to you and get your thoughts.  Thank you for your time, Stevie

ANSWER: Hi Stevie,

I know it is heartbreaking, but you shouldn't torture yourself.

As dementia progresses, it doesn't just affect the mind and memory. It affects everything - the person loses the ability to use their muscles and coordinate movement. They start to shuffle when they walk, and they can't do anything that requires fine coordination, like doing up buttons. The brain damage causes them to sleep more and more and be less and less interested in their surroundings. They start to fall because they have no sense of balance and their depth perception is impaired. They can't chew and swallow properly. They loose a lot of their sense of smell and taste, so food is not appealing. They also lose their appetite. It is as though they don't feel hunger or thirst like a healthy person - or if they do feel those sensations, they don't know what they mean or what they should do about them. Eating seems like more of a bother to them than a pleasure. It is part of the disease. As they get worse and worse, they also start to get infections, as their immune systems start to fail. Minor things like a cold or a urinary tract infection that would not affect a healthy person much, can really cause them to deteriorate, because they can't fight them off.

A lot of your father's weakness probably came from his heart failure as well, as this causes exhaustion and breathlessness. Heart failure also causes the lungs to fill up with fluid - and then he had cancer as well. Here is an article about heart failure
http://en.wikipedia.org/wiki/Heart_failure

It is very common for their weight to spiral down no matter what anyone does. High calorie diets, careful hand feeding and even feeding tubes don't stop the process. Feeding tubes can in themselves cause a lot of suffering and there is no evidence tubes prolong their lives.
Here is an article about feeding tubes
http://www.medicalnewstoday.com/articles/146034.php

Low prealbumin levels can also happen from cancer alone.

I know this is so hard to watch, but what you saw was not at all unusual. I don't think there was any more any doctor could have done. In fact, many doctors would not have recommended diagnostic tests and procedures for your father. The dementia alone is considered a terminal illness. As you know, it is incurable, it is relentlessly progressive, and it leads to death.
Although you are having trouble with his last days now, in some ways it is a kindness that he developed another illness that mercifully carried him off before the natural end of the dementia, which can be brutal. My mother in law died from the dementia itself, from end stage Alzheimer's. She survived a full two years, bedridden, incontinent and completely helpless - sleeping all the time, unable to talk, not knowing anyone, oblivious to where she was or who she was with. She had no quality of life at all, and it was her very worst nightmare to live on like that - but live on she did. She was as thin as a skeleton, no matter what anyone tried. It was just awful for everyone who loved her. There wasn't anything that could be done for her. We actually prayed for her release, which sounds dreadful, but we knew she would not have wanted to be that condition.

In our culture, we fear death, and we want to fight for life as long as there is breath. If there is a chance to restore the person to health, and a good quality of life, I would agree with there being a purpose to the fight. However, when all you are doing with the fight is making the person uncomfortable, confused and frightened, or even causing them pain, and there is no hope of them getting well again, I don't think it is kind at all.

Your father was a very, very sick, elderly man, with many, many health problems that were contributing to a truly dire condition. It was his time. Everything was falling apart physically, and even with aggressive measures, they might have been able to prolong his life only a very short time -  during which, instead of being surrounded by love, and peace and comfort, he would have been subjected to all kinds of invasive and miserable interventions.

What should have happened was they help you to cope, and perhaps called in some hospice workers to support your family through the dying process. It sounds like you all needed more information about his condition and prognosis, so you were more comfortable with what was going on, and felt more reassured that there was nothing left for medical science to offer.

Even if he had not had dementia, he had heart failure and cancer, and was 88 years old. The outcome would have been the same - heart failure can't be cured and it gets worse and worse and leads to death, and any treatments for his cancer would have been truly horrible for him to go through. Can you imagine putting a man his age through surgeries, chemotherapy or radiation treatment? He would not have been strong enough to handle any of it and he would have been in terrible pain and feeling miserable - and even if they could have beaten the cancer back, the heart failure would have gotten him.  

They didn't "let" him die. There really was nothing more to be done.

People who are lucky enough to live to your father's age, have a 50-50 chance of having some form of dementia. The brain is very delicate and there are many causes of cognitive impairment, such as Alzheimer's disease, strokes, Lewy Body dementia and many, many more. This is true for all of us, not matter what our family history. Late onset Alzheimer's, which is probably what your dad had, does have some genetic risk factors, but they are not well understood. Sometimes people who carry the risky genes get dementia and sometimes they don't. Exactly what sets it off is not really known.

Your best odds to live a long healthy life is to do all the things your doctor has probably nagged you about before! Take good care of yourself. Look after your blood pressure and keep your cholesterol down. Watch your blood sugar. Keep your weight under control. Get enough sleep. Exercise. Eat well. Avoid stress. Don't smoke. Don't drink too much. Get regular checkups. Follow medical advice and take medications as directed. Very few of us do those things, even though we all know they will help us stay healthy and active, which in turn ups the odds for a healthy brain.

I know you are grieving. You did the best you could. You loved him, and he loved you back, and wherever he is, he knows you all tried to do the best for him, and he's proud of you.

Thinking of you.

Mary



---------- FOLLOW-UP ----------

QUESTION: HI Mary,
and thank you so much for your all feedback. You have given me a lot of great peace and comfort and it's much appreciated.  There is one thing that still bothers me about the fluid in his lungs.  Iknow there were so many factors on how he got the fluid there in the first place, but as I mentioned above in my previous message. His breathing seemed to return to normal after they drained the fluid, which was a little sign of hope.  I know they had IV's hook up, and they said he was aspirating and no food or drink or it would fill up the lungs or he would choke.  however they poured 2 glasses through the tube of some clear liquid, maybe a dye of some sort to do a scan, and later discovered the hiatal hernia and that the tube was not in the stomach after doing an Xray. Where did this fluid go?  Did it go in his lungs and fill them with fluid again? His breathing changed back to worse again, and you could hear gurgling coming from his mouth that we didnt hear much before.  It was distinct sound. He was hooked up to a cath and I notice that he was still urinating.  His breathng was very very bad, and he died the next day, but showed no signs of pain.  His last day of life, he was in an unconscious state, as the days before he could still communicate with yes, no, hello, and a few names of his grandkids. Was it the dementia that caused him to be in the state, or from the lack of oxygen getting through to his lungs to replenish the blood of oxygen.  So many factors I know..and
I know I should just let it go, but he was my Dad/ you have helped me previously with such kind words and great words of wisdom of hope, and that we did the best for him. He was also a World War II Veteran, and I know he went with dignity and respect, and with all of us surrounding him, which is a blessing..   Thank you so much, Stevie

Answer
Hi Stevie, I don't know what the fluid they poured in was, or what it was for.

A hiatal hernia means that some of the stomach is coming up through the hole in the diaphram where the esophogus goes into the stomach. Fluids going down would still go into the stomach, although there can still be reflux. Here is a picture
http://www.mayoclinic.com/health/medical/IM01191

You know he had heart failure - and that not only causes fluid in the lungs to build up, but also puffiness and edema elsewhere. Right sided heart failure results in fluid build up in the body and legs, causing swelling and puffiness. Left sided heart failure causes fluid to build up in the lungs - pleural effusion is when fluid builds up in the pleural space, which is the space between the membranes around the lungs. Usually in cases of heart failure, this is treated with medications to help the heart.

You can also get fluid build up in the abdomen that can push on the lungs from cancer - it's called ascites, and the heart failure can also cause it.

What you may have been hearing was a death rattle - it's the term that describes the sound produced by someone who is near death when saliva accumulates in the throat. Those who are dying may lose their ability to swallow, resulting in such an accumulation. While death rattle is a strong indication that someone is near death, it can also be produced by other problems that cause interference with the swallowing reflex, for instance, brain injuries and dementia. It is sometimes misinterpreted as the sound of the person choking to death.

If you have questions about the tube and tests that were carried out in his final days, you should speak to his doctor, who can explain the specifics of your dad's condition and treatment to you.

Honestly, it truly sounds like your poor dad was at the end of his days, and perhaps they should have done a better job at being honest with you. He had a quadrupal whammy with his dementia, his age and frailty, cancer and heart failure. I know you wanted him to get well and that you were not ready to lose him, but I truly think that nothing on earth could have accomplished getting him well again. Medical science is limited when it comes to many things. It's not just that we can't always extend life - it's also that sometimes we should not try, because we're really just extending suffering.

I think he was ready to go, and that he told you that should be a great comfort - he didn't want any more fuss. He just wanted to be with you and let the tide go out. He had a long life, and it sounds like it was wonderful, worthwhile, full of love, laughter and adventure.

If you are still struggling, I would talk to his doctor. You were so lucky to be able to be with your dad at the end.

Thinking of you.

Mary