A Week Went By And Now It's July...er...August

Ain't this boogie a mess!

It sure has been, for two months.  I had that triumphant return to the blog at the end of May - had finally broken that evil six month headache, was feeling great, life was good! About a week later things came crashing down around me.  I don't feel like I can go into a lot of details right now, but there was a death in my family, Z-mom went into the hospital right after the funeral, and a member of Mr. Z's family went into the hospital on the same day.  Mr. Z's family member is doing well now.  Z-mom has had a horrible medical odyssey, from hospital to a rehab place that, in my opinion, almost killed her through a combination of neglect, misunderstanding, and direct incompetence. Thus back to the hospital to be saved, then to a second rehab place where she did not thrive through a combination of grief and not liking the facility.  We finally moved her to a third facility where she is much happier, the quality of care is extremely high, and the results in just one week are amazing.  We are daring to be hopeful and happy now.

It was fortunate for me that I had just come off the week of hospitalization for migraine, and thus was as well positioned as I could hope to be to go through these last two months of intense emotional and physical stress.  So yay for that.  But the entire experience with Z-mom has only more strongly reinforced some things I already knew.

When an elderly person is in the hospital, you cannot just assume that they are being taken care of and all their needs are being met.  The nursing staff is often excellent and gives excellent care; they see more than the doctors and can tell you a lot about how your family member is doing - how they fared during the night, if there's been a change in some functioning.  But you still need to be there a lot to see what is going on - how well they are able to feed themselves, how well they are able to work with PT and what the key issues are, just in general what their mood is like, what needs they have that you could meet.  Most importantly, you need to be there early in the morning when the doctors are doing rounds, so you can speak with the doctor yourself, even if it is just for a few minutes.  This is when you can ask questions and get information about what therapies are being prescribed, or should be prescribed.  You can ask, why is my family member doing x or y, looking like this or that, acting this way?  If you aren't satisfied with the answer, push for more.  Ask them to slow down so you can write things down, and to explain words or concepts you don't understand.  If your loved one is about to be transferred to another facility, you will usually have some interaction with a social worker. They are good sources of information and are there to help you so don't feel bad about asking questions.

If your loved one is transferred to a rehab hospital, again you can't afford to take your eye off things.  You can't, of course, be there every minute they are doing therapy, nor should you, but you can sit in on some therapy sessions and interact with them and the therapist to aid in the therapy and learn what you might need to do with your loved one after the time at rehab is over.  You can get a sense of how your loved one is being treated.  After therapy is over you can see how gently (or not) staff help your loved one with activities of daily living, and how quick they are to respond to calls for assistance.  You may or may not be required to do laundry for your loved one, if the facility does not provide that service.  Sometimes this is better if you do it yourself, because things are less likely to get lost that way.  Your being there can help with your loved one's mood.  But most importantly, you can be there to monitor and catch errors or neglect.

In Z-mom's case, she had been progressing quite well and then suddenly started to decline, day by day.  No one could give me an explanation as to why.  They wrote it off to her grieving and being "too weak for the level of rehab here - she can't recover and keep up for the next day."  I would point out that she had been doing quite well and then started to decline and they would shrug their shoulders and go back to the grief excuse and say she wasn't trying.  But she was, she was trying as hard as she could.  In the end it turned out that she had a UTI and was severely dehydrated (which didn't happen overnight), to the point where she nearly died.  Neither rehab staff, nurses, nor the doctor monitoring her case noticed any of this.  I am not sure why.  And I wish I had pushed harder on all of them in the last week she was there.  A friend of ours who worked in hospice came to see mom and in fifteen minutes diagnosed what was wrong. She helped us get her moved back to the hospital, and saved her life.  Moral of the story:  pay attention, keep pushing, and call on every resource you know to help you figure out what is going on. Many people who are good at what they do are not so good at understanding how even slight imbalances can have tremendous effects on the elderly.  I did not know, but do now, that many times the only way that UTIs are diagnosed in the elderly is by display of confusion and a delirium-like state.

What this country's health care system needs (among a kazillion other things) is a good many more doctors and nurses trained in gerontology (especially to help with the death panels, amirite?).  I can't say all the things I've been watching and learning as I go along with Z-mom makes me feel good about my own approaching old age.  And don't even get me started on the insurance paperwork fallout from all of this.  I just wanna go hide.

But Z-mom, and Mr. Z, and me, and the rest of our families have made it through this far.  We are hoping for a less turbulent August and as things cool into fall, a chance to reflect, recover, and hold on dearly to those we love.

6 responses so far

  • Grant says:

    Speaking of "Making Disability Visible" (one of the themes this article has been posted under), contributions for the disability-themed Diversity in Science blog carnival later this month are welcome:

    http://sciblogs.co.nz/code-for-life/2012/07/30/blog-carnival-disability-awareness-and-the-disabled-in-the-science-community/

    You don't need to be disabled to contribute, contributions can be on any aspect of disability and any type of disability will be considered.

    Please feel free to pass on this call for contributions to others who may be interested.

  • PeggyL says:

    So sorry you've had such a rough summer! Glad to hear that Z-mom is doing better.

  • tinfoil hattie says:

    Ugh, I'm so sorry. My mom almost died from a kidney stone - they were trying to remove it, and she became septic and spent days in the ICU. It was HORRIBLE. I am SO SORRY you went through this trauma. Please send your mother good wishes from a fan.

  • anony mouse says:

    In other words, leverage your wealth to get better care than everyone else around gets.

    And what about people who don't have friends who are nurses?? Or have the opportunity to do all these things? Or can even afford to do them?

    They are just supposed to die then, in your world, hm? Useless article.

  • A. Marina Fournier says:

    You say:
    pay attention, keep pushing, and call on every resource you know to help you figure out what is going on.

    When people are dealing with a medical problem of their own, or of a loved one's, having a Patient Advocate, who doesn't have that strong an emotional bond to the issue, is a great help. I have done that for two friends facing cancer (both ovarian, coincidentally)--been there to speak up for them, to ask the questions either they don't know to ask, or can't manage to get out through distress. I'm not in the medical field, but I speak Medical Jargon, and I actually know a lot about a lot of different medical issues, because I like to read about medical developments, partially due to having been a bit of a medical miracle at birth.

    I did tell one oncologist to cut to the chase, as we had all done our basic research and were merely asking for a second opinion.

    In my sister's case, her friend is a medical social worker, and what she doesn't know about patients' rights, special programs for their particular rehab, etc., isn't worth knowing.

    Z, I'm glad that you were able to persevere and get what your mother needed. This is pretty much what my sister had to do for our mom (I'm too far away, like 500 miles) when she was at the nursing home.

    Anony Mouse, you can get awful care at expensive facilities as easily as with the less expensive ones. Paying more is not a guarantee of better care, nor is having to rely on Medicare alone a guarantee of terrible care.

  • anon says:

    "..many times the only way that UTIs are diagnosed in the elderly is by display of confusion and a delirium-like state."

    There are so many other things that can produce confusion in the elderly. Any idea how your friend narrowed it down to a UTI? Did she suggest to start with a diagnostic test of the most common cause and work down from there? Did your Mom at least have a fever? I'm glad everyone is feeling better now. Hope it stays that way.

    My husband experienced the opposite behavior when his mother was hospitalized with end-stage cancer. They kept subjecting her to test after test after test. He felt that tests were being needlessly run for the sole purpose of wracking up a bill that was expected to be paid by medicare. What she needed was hospice, and for some reason, no one had suggested this to the family (this was all before my husband and I had even started dating..). Being an advocate for a loved one, or for anyone, seems to be an acquired skill or even an art!