Sad Days Ahead

Friday, January 18, 2014, 2 pm.  Walmart.  Maneuvering the shopping cart (or “buggy,” as they call it here in Western North Carolina) around the place packed with people gathering supplies for what was supposed to be a blizzard, luckily turned out to be flurries.  I was picking up a few things to top off my Shabbat preparations: mineral water, blue corn chips, orange-and-red striped tulips, and cheesecake.  My phone rang: my mom.  Her cell phone, which was odd at that time of day.  Alarms go off in my head.

Dad has fallen again–the second time this week.  The many-th of this year.  Falls are increasing in frequency, varying in severity, but always accompanied by a decrease in function afterward.  He has a dementia that is not Alzheimer’s.  He’s had many small strokes.  And he’s got a narrowing of his spinal canal that causes him to have to wear diapers because it’s pressing on the nerves that control his body functions.  And to make things even better, his vertebrae–all of them–have been slowly but progressively disintegrating so that he’s bent over in a “C” shape when he walks–if he is able to walk, which is sometimes, with difficulty, with a cane or pushing his wheelchair, which is where he is parked most of the time.

So far he’s managed by sheer force of will to do his shower by himself.  But this time he fell right over on his back, hitting his head for the millionth time on the hard tiled floor, and my mom was not able to get him up; so she did the right thing and called the ambulance.  As of the time she called me they had still not shown up and Dad was still lying prostrate on the floor naked as a jaybird and twice as wet.

It took them a good twenty minutes to arrive.  Good thing there was nothing life-threatening.  And when they finally got there, they came in such hordes that there was nowhere to park both the First Responders van and the Ambulance, which couldn’t even get into the tiny parking spot at the end of the long dirt road where they built their home 40 years ago.  They couldn’t figure out how they were going to backboard him out, given that my parents built their house into the side of a cliff and there is very limited access.  My mother said it was like the Keystone Cops.

After I got her call I put the cheesecake back in the freezer and just left my cart where it was, and drove the ten minutes to the hospital, thinking surely they must have arrived at the ER by then.  But no.  I waited a good half hour.  My mom arrived in her car, and it took the ambulance another fifteen minutes to get around to unloading poor Dad, who was immobilized on a backboard.

CT scan of head and neck were fine, but he had a new compression fracture of L1, the first vertebra below the thoracic (chest part) spine.  And as I gazed at the cardiac monitor, I noticed a very strange rhythm, or dysrhythmia really.  It looked to me (and it has been a very long time since I read EKGs) that he has a partial or intermittent block in the electrical system that runs the heart.  It happened in “runs:”  the pattern would get normal for a minute or so, and then pop back into the abnormal rhythm.  I observed that his level of consciousness varied with the rhythm.  When it was weird, he would get confused and less conscious; when the rhythm was normal, he was more aware and oriented.  That explains a lot, because he’s been “going in and out” a lot lately.  Surely when his rhythm is weird, his heart is not pumping normally and his brain, already battered, is not getting enough blood.

As if that is not enough, he has a urinary tract infection–probably the same one he had about a month ago that was inadequately treated with the wrong antibiotic and no follow-up culture to see if it had cleared.  I was furious then and I’m furious now.

Thankfully, he was admitted to the inpatient service.  The last many times he has fallen and hit his head, they have sent him home, even when he injured himself badly enough to need stitches.  But this time, with the combination of the fall and the dysrhythmia and the kidney infection and the broken back, for heaven’s sake, they kept him.

Today, Saturday, January 18, my mother, the doctor, and I, unanimously made the decision that he will go to a nursing home for “rehabilitation” after his hospital stay.  This is a very sad state of affairs.  In all my years of doctoring, and in all my mother’s years of being a geriatric social worker, neither of us has ever seen an 89 year old person who is sent to a nursing home for “rehab,” be discharged from there to come home, because by that point the person is really not “rehabilitatable.”   If my dad makes it out of that nursing home I will be very surprised and very elated.  But I don’t think he will.

He’s been through at least four six-week courses of twice weekly physical therapy to try to improve his balance and ambulation.  All that’s accomplished is to cause him great pain and distress, but he’s soldiered on with it because he’s not a quitter.  In fact, the main reason for most of his falls is that he’s trying like hell to be independent.

I’m terrified to think of him in a nursing home with a broken back, because I know what they will do: they will leave him lying in the bed, with the excuse that it’s not safe to get him up in a chair, much less walking with assistance, and neglecting to turn him every two hours like they’re supposed to.  I’m terrified that he will develop bed sores.  Maybe I’m just, just, just overthinking….but this is what I’ve seen.  And if he develops a bed sore, he’s gone, because he’s diabetic and his immune system can’t take it.

So I know where I will be spending most of my time, making sure that he’s properly cared for.  It’s a sad time, a time we’ve all seen coming, and now it’s upon us.

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36 Comments

  1. Laura, I am sorry to read this. Best wishes to you and your family.

    Reply
  2. i do understand where you are coming from. my only family is a couple of cousins (gramma-like) who live on their own in a teeny tiny itsy bitsy rural town. they are 87 and 86. just the last 2 months, one was hospitalized for sores that were caused by extreme dependent edema, and the other for a mastectomy. after, they were sent to the nursing home for ‘rehab’–where they truly did ‘rehab’, and have just returned to their own home this week.

    just saying, no matter what we’ve seen, there are always the exceptions that prove the rule. here’s hoping your dad’s one of them!

    Reply
  3. D'Alta

     /  January 18, 2014

    I am so sorry, Laura. C talked with his dad, so we knew it was just a matter of time until something like this happened…but very sad to hear. We are holding your dad, your mom, and you in our hearts. Let us know if there is anything else we can do!!! You and they are very dear to us.

    Reply
    • Thanks, Dorothy. As of this time I have not told C anything so please hold off until I’ve spoken with him, which I will do tomorrow. Thoughts and prayers are appreciated, thanks.

      Reply
  4. Hugs to you.

    Reply
  5. annesspirit

     /  January 18, 2014

    God bless, Laura. Keep me in the loop. Anne

    On Sat, Jan 18, 2014 at 5:57 PM, Bipolar For Life wrote:

    > Laura P. Schulman, MD, MA posted: “Friday, January 18, 2014, 2 pm. > Walmart. Maneuvering the shopping cart (or “buggy,” as they call it here > in Western North Carolina) around the place packed with people gathering > supplies for what was supposed to be a blizzard, luckily turned out to be > f”

    Reply
    • Thanks, Anne…guess I won’t see you tomorrow. I’ll be sure to keep you posted! Saw your email, very interesting. There is a theory (mine) regarding Hindu/Hebrew parallels…we’ll discuss it one day soon. Take care!

      Reply
  6. I am so very sorry, Laura, that this is happening to you and your family. I know how awful it is to have a loved one in a nursing home after a fall from which they won’t recover. I know how awful it is to go every single day, stay there all day long, attend to their needs b/c no one else will and watch them slowly waste away. I know how it’s like after so many weeks of endless torture for everyone to find yourself praying to God to take them Home and end their suffering as well as the suffering of your loved ones and yourself.

    I’ve been there. I’ve gone through that. My heart hurts for you and your family!! 😦

    God bless and keep you all and get you through this as painlessly as possible. May His comforting arms surround each one of you. May He reassure you as often as possible that He will never leave you nor forsake you and that He hurts even more than you to see the pain He never created, never wanted for us, to attack in the way that He is.

    These are my beliefs and my prayer tonight for you and your parents.

    Love and prayers, thoughts and hugs are with you and will continue to be so!!
    Kathy

    Reply
    • Oops!! Sorry!! I meant, ” . . . in the way that it is.” Haven’t had a lot of sleep and my brain’s kinda foggy.

      Reply
    • Thank you so much for this comment, Kathy. It’s so REAL. It hit me right in the gut and I had to stop doing what I was doing and just bawl for half an hour. I see him fading hour by hour. I was with him most of the day, went home to eat and came back. He was hallucinating about the voices coming from the hallway.He’s a potter, sculptor and painter, and has an out-of-this-world imagination, so everything he heard or felt or saw, got conflated into some outlandish and possibly dangerous thing. At one point there were spies out there. I couldn’t figure out how much I should be trying to reorient him or how much just get into his fantasy with him and steer it in a good direction, which is what I ended up doing. More effective. The hospital he’s in right now takes excellent care of him. It’s the nursing home I dread, knowing as we do what goes on/does not go on in those places. The hospital food is actually good. The nursing home, I will probably be the chef. At least I will feel like I’m doing something for him then.

      Reply
  7. savemefrombpd

     /  January 18, 2014

    Oh I’m sorry Laura. Things like this are very difficult to go through. To see both your family member suffer and for you to be involved in his suffering too.

    But you are doing a massive mitzvah by looking after your parents and you will be rewarded for that.

    I wish your father well and hope his condition improves.

    Lotsa love to you and your family. 💗

    Reply
  8. I’m so sorry for your trials. It sounds very difficult. I pray for you and your parents.

    Reply
  9. You are in my thoughts. Please take care.

    Reply
  10. Laura, I am so sorry that your family has this tsuris. May your father be blessed with nurses and caretakers who will give him the support he needs, and be a comfort to you and your mother.

    Reply
  11. Hi doll! I call you this because I feel you are my sister. May no distance separate the prays and love I send to you from Louisville, KY and my computer. I truly do not like to even think I could not be there to give you a hug physically but in one mind and accord, I do send you love. Keep writing and letting us low how things are. Your creative writing will help. If it be ok, my other blog KentuckyStorycrafter may have some exciting things to share with you. Just stories, to whisk us away when we are in trying places. Nothing more….As I have begun to write more, I think of you like my pen pal cheering me on to follow my heart so I believe you will enjoy what is there. Also, I think of you as I drive down busy streets and wonder what Dr. Laura would say about this or that. And seeing you bare your heart, knowing your friends here love you, I commend you to keep pressing on. Having a deep understanding of the mind with people such as ourselves here who support you, who take great care in loving existence, we can find it hard to keep our chin up, but I KNOW you will. Love your dad while he is with us on earth and just keep the eye contact strong with him, for it is the window of his soul. Blessings and magical love be sent to you in the form of this letter. Write, to us all Dr. Laura. Write lots.
    Holly

    Reply
    • Thank you, Holly-Ding (there is a wonderful old-time fiddle tune called Holly-Ding, I bet you would love it!). I think he is on his way Home. Last night he asked me “Are you going to be where I am going?” And I said “Yes, I will be there.” And of course I will, but I don’t know when. No one knows when, until one day you are there! I stayed late at the hospital last night, and he was “in and out” but my mother is there this morning and she says he is really disoriented and his face has changed. I think he probably has a slow bleed inside his head. It kind of–not kind of, it DOESN’T, matter because we would not operate to get the blood out anyway, at this point, both because it is his wish not to have life-prolonging procedures and because he would not survive surgery anyway. So it is just a matter of time now, watching and waiting and trying to fill the room with good energy so that he can go in peace. I am finding comfort in my Jewish prayers, and he and I had conversation about his happiness that his mother kept Kosher all his childhood life. That, until he lost contact with reality and started asking me if he was in the basement, and if there was a saw running somewhere (it was the sound of the air pump for his pneumatic stockings that sparked that idea), and was I a part of this spy movie conspiracy, and other things that would have been amusing if they were not so sad. Thanks for your good thoughts…

      Reply
  12. I’m sorry to hear about this Laura. Wishing your Dad and the rest of your family well.

    Reply
  13. Stay strong! Stay positive!

    Reply
  14. You are right, they are too busy and understaffed. I know I used to work in one as a nursing student. If he could get home nursing that would be so much better for him and all of you. That is what we were going to do if dad survived.

    Reply
    • Well, I’ll be there every day. We don’t have the resources for home care, and it’s no longer safe for any of us. My mom and I together can’t transfer him, and he’s no longer ambulatory. So it’s our only choice. Luckily my mom was once the social worker there, so maybe we’ll get better care, and I have no qualms about making a pain in the ass of myself demanding that he be kept clean etc.

      Reply
  15. PsiFiGal

     /  January 20, 2014

    I am so sorry, I don’t know what to say other than that I am thinking of you and your family, sending prayers for you to find comfort in each other, that he is not in pain and that you remember to take care of yourself also.

    Mary

    Reply
  16. There really is not much I can say, Laura, that seems appropriate. So, here are some (((hugs))) Peace to your heart, Sara

    Reply

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