Here There Be Monsters

When I was a little girl, the space underneath my bed was rotten with monsters.

I had to take a running start to make the three-foot leap into bed, so that a scaly hand or tentacle would not snake out and snag me, dragging me into the dark waiting maw, where they would all fight over my little body, tearing it to shreds, and that would be the end of me.

Now I’m finding that that leap is impossible; it’s futile; the waiting monsters are licking their chops.

My dad is declining rapidly.  He’s been hallucinating, confusing familiar sights and sounds with threatening nebulous images.  Well, he IS an artist, and my favorite show of his was called “Fantasies and Daydreams.”  And now his imagination creeps up on him from behind, casting veils of illusion over his senses.  He dozes, and sudden terrors trigger his fight-or-flight response: he flails with hands and feet, and today twice pitched forward, and would have launched himself out of his wheelchair face-first on the floor, had I not been right there to lay a reassuring hand on his shoulder and tell him it’s OK, nothing is going to harm him.  He wakes from these fits, thank God, when someone intervenes.

The hospice nurse brought up the possibility of giving him a small dose of Haldol, a major tranquilizer and antipsychotic, but my mother voted it down.  She’s worked with the elderly for most of her life, and seen Haldol used as a way of drugging “problem residents” in nursing homes, so that they cease to be a trouble to the nurses.  I’ve tried to explain that the idea here is not to drug him into a zombie, but to relieve him of horrible experiences that are eroding the little quality of life he has left by transforming the music he loves into threatening voices, and the beautiful forest where they live, which has always been an inspiration to him, into a hall of shifting and changing faces, leering with evil eyes and gaping mouths.

I think she will reconsider the Haldol shortly, if for no other reason than to relieve herself of the exhaustion of constant vigilance.

Last week he even got out of his hospital bed somehow, in the middle of the night, and must have wriggled across the floor–he can no longer walk, and he can’t control his arms and legs enough to crawl–and ended up wedged between the sofa and a chair.  The only reason my mom found him at six in the morning is that the upstairs bathroom was being worked on and she had to go downstairs to use that one.  And she heard him moaning, and there he was on the floor.

The drill now is that when he ends up on the floor, we call Hospice and they decide whether to send over a nurse, or to call the First Responders to look him over and get him back into bed.  That is what happened in this case, and my mom said they were very rough and literally dropped him on the bed, didn’t bother to get him pulled up onto the head of the bed but left him with his feet hanging over the foot of the bed.  Mom tried to shift him up, but couldn’t do it, so there he lay until the morning attendant arrived.  Dad was so worn out by the whole process that he was unable to even sit propped up that whole day, and besides, he had hit his head again and was really “out of it.”

In the past, when those scenarios occurred, we would call the ambulance and he would be taken to the hospital, and we would spend an anxious and exhausting eight hours waiting for the CT scan and all that to be done, and he would either be discharged home or admitted for observation.  Now that we’re on Hospice, we don’t go to the hospital any more.  We’ve all agreed that we are at the end of Dad’s life, and the aim is to make him as comfortable as possible as we wait for the end.

It’s devastating to see the man to whom I have compared all other men, and found them all wanting, wasting away before my eyes.  I know I’m not the only one to have this experience; and compared to many others, his deterioration is blessedly mild.  He is not in some hospital hooked up to machines.  He is in pain, but it’s controllable, and he’s able to sleep most of the time, day or night.  He still recognizes me, and we still have our “le’chaims” every afternoon.

Today was different, somehow.  I think he was exhausted by the hallucinations and terrors.  He had trouble holding his little whiskey cup, one he had made himself (we always have our whiskey out of these cups), and the liquid didn’t always make it exactly into his mouth.  The right side of his mouth droops from a stroke he had early on in this process, and his food and drink often make their way down the resulting crease into his beard.  My little dog Noga loves to clean his face, if the opportunity arises and no one intervenes–just the way she loves babies, because they usually wear most of their meals on their faces and hands.

Mom has been sick for months.  She’s been very short of breath, breathing at a rate of around 30 breaths per minute.  Normal is 12-14 for an adult.  I’ve been hounding her for months to go get a chest x-ray and pulmonary function testing.  Finally she started wheezing badly and her girlfriends began to make comments, so that propelled her to make an appointment with the “doctor.”  I put that word in quotes because the person who wears this particular MD is, in my experience, completely incompetent.

True to form, the “doctor” ignored the fact that my mother told her (at least, she SAID she told her) that this has been going on for months and months, and possibly over a year; that she has lost weight, and has trouble sleeping because of shortness of breath.  She even has to stop halfway up one flight of stairs to catch her breath.

So she did get an x-ray, results to follow, but was denied the pulmonary function testing that I feel is mandatory under these conditions.  Instead she came home with a prescription for an antibiotic and a course of steroids.

The steroids will make her feel better regardless of the cause of the chest issues, but will not address the underlying pathology.  And it will increase her baseline irritability and labile behavior–not good.

In medicine we have this thing called “differential diagnosis.”  It’s a way of sifting through all the things an illness could possibly be, first casting a wide net and then crossing things off the list as they are ruled out, either by the process of logic or by test results, and hopefully a combination of these, along with a dose of clinical know-how, and the faculty of observation.

So in the years that I have been observing the evolution of this process, I have whittled the possibilities down to two:

1. Cancer

2. Cancer

3. Restrictive lung disease

I’ve ruled out COPD (Chronic Obstructive Pulmonary Disease) because that is always accompanied by cough, usually productive of sputum, which she does not have.

She did smoke in the past, approximately 40 pack-years (the number of years smoking times the number of packs per day), but quit about 40 years ago, so smoking-related lung cancer is unlikely.  However, there are lung cancers that have nothing to do with smoking, or are made more likely by a person having been a smoker in the past.  I know the common wisdom is that after a person has stopped smoking for a certain number of years, their risk of cancer is as if they had never smoked, but I have never believed that, having seen otherwise in clinical practice.

Restrictive lung disease happens when, for some reason, the lungs become stiff and cannot move oxygen into the blood.  The late Ralph Nelson, MD, a brilliant physician who devoted himself to medical illustration, dubbed people with restrictive lung disease “Pink Puffers” because they manage to make up for the stiffness of their lungs by breathing faster: therefore they don’t turn blue the way people with other lung diseases do.  My mother is a classic Pink Puffer.

But restrictive lung disease can result from certain cancers that infiltrate the walls of the lung tissue, making the lungs stiff, necessitating an increase in the respiratory rate, and hugely increasing the work of breathing.

I’m feeling sorry for my mom, even though I don’t love her.  I hate to see anyone, any creature, suffer.  I suspect that the process of definitive diagnosis will be a long and unpleasant one.  Believe me, if I were still in medical practice, she’d have her diagnostic workup done, not yesterday, but a year ago.  And then….what would happen to them?  I can’t even take care of my dad alone, due to my own health issues, let alone the two of them.

Tonight I feel as if I’m looking right down the throat of the monster that takes lucky people with two living parents and makes them suddenly into orphans.

 

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22 Comments

  1. im sorry your dad is getting worse, but like you said, he is not on tubes, unresponsive, in a bed. but as for your mom and your observation that after so many years of not smoking after having been a smoker, your risk of getting smoking related lung cancers is supposed to drop to almost zero. you are right to have never believed that particular ‘fact’ that is quite often thrown around.

    my dad smoked from age 11 to 40, when he quit. he never smoked anything again. he was diagnosed with stage 4 non small cell carcinoma when he was 59. it had already metastasized to his shoulder, spine, hip, calf. after diagnosis (for 3 yrs he had sought help for the symptoms he was having, but was continually turned away by his docs as an ‘elderly drug seeker’.) so when they diagnosed this at 59, he was already quite ill. he underwent two rounds of IV chemo, had his hip replaced 3 times because it kept ‘sliding’. went thru pt for walking, developed blood clots that had all clotted together to each other from his ankle to his hip, and on his 3rd round of IV chemo, he died. and he was at home, in a hospital bed, with IV morphine (no limits–any time he made a sound, he got more) with a catheter because he couldnt make it to a bedside commode, or roll over (due to his painful hip) for a bedpan. he was lucid the first few days, and still believed he could beat it. then he began hallucinating, and was scared, and panicked and could not be calmed. after 3 more days, he passed. he never even made it to 60.

    im sorry, that went on longer than i intended initially. but it is an absolute lie that quitting smoking reduces your chance of smoking related cancers. he had gone without almost 20 yrs and it made no difference. neither did the docs who failed to diagnose him for 3 yrs until he was very ill. any my dad was also a health nut. practically a vegetarian, worked out every day, had all his blood work done at least 2x/yr, always walked to work, had his cholesterol in perfect shape.

    one thing we can never be sure of, is what illness we might get and when. i think it is disgusting how they publish all the supposed ‘facts’ when there is nothing to support them directly. anyone can find an association, but it requires a correlation. again, sorry for my rant. the topics you brought up really strike a chord in me.

    Reply
    • Yikes, Kat, your poor father. Your poor family! And it seems as if so many people who take meticulously good care of themselves get whacked. My dad too–his whole life, up a six, work out for an hour, breakfast of home-made whole-grain something-or-other, etc. etc. and now to die wasting away. I always hoped he would fall face down into the pot he was spinning on the wheel–plop–and that would be it. Messy, but quick! But that was not to be. And your dad, suffering all those years because he didn’t “fit the mold” of a person with cancer, until it was way, way too late…..I just don’t have any confidence in Western medicine whatsoever, anymore. I am going to have to write a post about how I happened to get these letters after my name, from a factual standpoint. Love you! Your story has helped me.

      Reply
  2. You are dealing with so much, Laura…I’m so sorry….You and your parents are in my thoughts

    Reply
  3. I’m so sorry, sweet Laura. I can’t think of what to say, except all that I can ever say, which is that I send you so much love.

    Reply
  4. I know it’s said often but old age is so cruel… on everyone. Hugs.

    Reply
    • It is, and it just seems so unfair. Why should people have to suffer so on their way out? Different religions have their own explanations for it, but who really knows, until it’s over? Hugs appreciated 🙂

      Reply
  5. This is such a prolonged period of caretaking for you. I wish there were some way to alleviate the seriousness of it all if only for a couple hours. Take care of yourself.

    Reply
    • Thanks so much, Anne. As a matter of fact, I decided a while ago that I need some “comic relief,” so I’ve started a few little projects here and there, and now it’s gardening season and that is always a blessing. For some reason, when I get in the garden I am unconscious of anything else! Maybe that is why gardening is so popular. Now if I can get my arthritic hands to cooperate……….

      Reply
  6. Hi Laura,
    I’m so sorry to hear of your parents’ decline, especially your dad whom you love so much. Unfortunately for me, my dad sexually abused me as a child and I have broken off contact or communication with him for a couple of years now. I think his overall health is still good, but I don’t know this for a fact. In many ways, I wish that I still had my Dad in my life, but it’s just not possible right now. It remains to be seen if I will find a way to forgive him before he passes. Best wishes for you and your Dad. I hope it all goes peacefully and gently. Doc.

    Reply
    • Hi Doc, nice to hear from you. Thanks so much for your well wishes.

      I know that feeling of longing to forgive the abuser. You must have a big empty space where you should have had a Dad, and that’s so sad….and you didn’t cause it, and you can’t do a thing about it except for taking care of yourself and mourning the fact that you don’t have a Dad.

      There’s a lot of pressure from outside to forgive an abuser–believe me, I’ve been given all sorts of talkings-to by well meaning people, that I should forgive my mother for abusing me. It wasn’t until my therapist helped me understand that I never did have a real mother, that I was able to have closure. I mourned the fact that I was and still am a motherless child. That has helped me immeasurably, especially since I still have to have contact with her because of my dad.

      I hope you’re able to come to some kind of closure before, or even after, your dad passes. I’m glad you’ve had the wisdom and strength to go No Contact with him–such a healthy gift to yourself, but so sad to have to do.

      I’ll be keeping you in my thoughts…..

      Laura

      Reply
  7. Oh Laura, this is terrible. I am praying for him.

    Reply
  8. savemefrombpd

     /  May 14, 2014

    Tough times my friend. I’m sorry. I just wish the least of suffering for everyone in all regards. I hope that your father can perhaps take the medication to ease the intensiveness of the hallucinations and keep him calm and that your mother can get some answers or at least right now, something that can help her suffer less too.

    In turn, I therefore hope that you can suffer less too because they will be suffering less. Your mitzvot are very big indeed. And I wish health for you L.

    Take care.

    Reply
    • Thank you, darling. My mother has finally agreed to give him a tiny dose of Haldol at bedtime, since he spent all evening last night hallucinating that he saw dogs in the yard and heard them barking. Scared her to death, which is a good thing for him. I will make sure she does it–actually I will administer it myself. We have a box provided by Hospice that contains medicines to ease the suffering of dying people, and Haldol is in it. Bless Hospice! And I’m doing my best to stay healthy, too….finally the sun has come out here, and it is lovely. The weather affects my mood and my arthritis, so the sun is a blessing.

      Blessings right back atcha for refua shaleima, and I mean REALLY shaleima, maheir, maheir, maheir. I pray for you all the time. If I had your Hebrew name, I would have your address in Shamayim, but I’m sure He knows who I’m talking about 🙂

      Reply
  9. Has anyone prayed over your father?

    Reply
    • Yes, three times a day. We are Jewish, and our prayers are different than Christians, but we believe that everything is in G-d’s hands. There are reasons for everything, and we will know when we get to the Other Side. For now, on this earth, all we can do is pray, and take the best care of him that we can! Thank you for your support!

      Reply
  10. Reblogged this on Expresiond14.

    Reply
  11. I’m very saddened to hear that you are facing these issues with your parents. I do understand as I’ve lost my dad seven years ago and my mom is in late stage Alzheimer’s and a very different person than she used to be. Just know that you are not alone and you will get through this time. My prayers and thoughts are with you. Peace to your heart

    Reply
    • Thank you, Sara. Thoughts and prayers right back. It’s so sad to see the people who gave us life disintegrate before our eyes. I just pray to be taken before I get to that point.

      Reply

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