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Saturday, July 6, 2013

6 - 8 DO'S AND DON'TS when it comes to senior health care

Today is day 6 (and my 6th post) in the 30 day blog challenge I joined.  For anyone "just tuning in" this post may leave you wondering what the heck I am rambling about.  I promise it won't take too long to go back and review my first 5 posts so you can catch up with my story.  For anybody thinking there is nothing here that could affect you, I hope you're wrong.  I hope you are wrong because, not because I wish bad things for you, but because that would mean that you are truly alone in life.  You see, although my story revolves around senior care giving and health care, I believe there are lessons within my story that could be applied to ANYBODY that might EVER know someone (or be someone) who is incapacitated, no matter their age.
Thoughts keep tumbling around in my head.  I have so much I want to say and I don't know where to begin OR end!  Please bear with me if it seems a little me, I will tie it together (somehow) by the end of this 30 day blog challenge!

In an earlier post I listed some DO'S AND DON'TS as our parents age (or any senior we are likely to become a care giver for).  I would like to expand on some of those, and offer some insights.

The fact the DO NOT's are much more expansive than the DO's is no accident........those lessons took the longest and were the hardest to learn!  

I know it's long, but it's important!!!
DO NOT assume that your parents are getting the best health care from their doctor or that they are senile when they tell you things that their doctors or other health care providers may have said or done.....CHECK IT OUT FOR YOURSELF!
Certainly if they really are experiencing senility you need to know that too!

Several things have happened during this ordeal that I would not have believed if I had not witnessed them personally!  I probably would have thought mom was getting paranoid or senile had she simply told me about them.  And, looking back, I should have jumped in with both feet long before she ended up on the floor.

The one thing that stands out the most in my mind was going to the RA doctor with her following her release from rehab.  Since she had been battling a staph infection they had to stop giving her any immuno-suppressants for her RA.  She wanted to visit with her RA doc that she had been seeing for years, so we made an appointment.

When he came in to the exam room his first question was "so, why are you here", to which mom replied "to find out what the game plan is now".  His response took us both by surprise - "How do you want to die?  Slow & painful or fast & painful?"  Now, even if these were the only 2 choices, his bluntness was shocking.  Turns out these may have been the only 2 choices IN OUR SMALL COMMUNITY.

After the shock of that visit wore off a little we made another appointment to ask him about a referral to the RA department at NJH in Denver.  He became defensive and told us it wouldn't do any good an that they wouldn't tell us anything new.  He then told me to "get to the point" that he didn't have all day to mess with us (we had been in his office less than 15 minutes).  Obviously that visit did not help us any more than the one before it.  It Just left mom angry & depressed.  We haven't been back.

Again, if mom had just told me these things I likely would have thought she was blowing it out of proportion or had misunderstood.  Which, when I think about it is just silly - Mom is NOT a complainer and is always very respectful and tends to give everyone the benefit of a doubt.

DO get involved with your parents health care BEFORE YOU NEED TO BE!  I can only assume that things might have been different for us if I had established a relationship with moms Primary Care doctor before things got so bad.  He might not have thought I was taking her drugs if he had known me before I was having to call his office & beg for pain medicines for mom!  Or, I might have figured out that he really only wanted healthy patients before she was so ill that no other doctor in our area would take her on as a PC.  But, I didn't.  So, it was an uphill battle all the way!

DO NOT just blindly follow orders if you or your parents feel something is not quite right!  From
prescriptions to bandaging, if it doesn't seem right QUESTION it!  At one point mom was given a prescription with the wrong instructions, which she caught.  She called the doctors office to let them know that something was wrong & was told by the office assistant that answered the phone that she just needed to take them just like the bottle said - the woman spoke so rudely and loudly to mom that I could hear her across the room.  Now, luckily, we know what the right directions were suppose to be and mom did not take an over dose (this time), but because of the wrong directions we didn't have enough doses to follow the RIGHT directions for more than 5 days.  Which, of course, meant more time & effort trying to get them to listen & help make it right!  They were busy blaming the pharmacy, who was busy blaming the doctor.  We didn't care whose fault it was, we just wanted them to know and to make it right!

DO insist on a second opinion for serious medical issues - and if you live in a small community INSIST that the referral be for a doctor outside of that small community!  We found that the doctors in the community we live in are very reluctant to "step on toes" of other doctors in the area.  My feeling is they likely play golf together and you likely will get the same answer you got from the first doctor - even if it's not the right answer!  It took us nearly 6 months to get a referral for a doctor out of this area.  Turns out mom may have more options than just deciding how she wants to die!

DON'T assume that a 5 Star rating for an Assisted Living or Skilled Nursing Facility will live up to your expectations of a top rated facility.

About 3 weeks after my mother was hospitalized with debilitating lower back pain complicated by a severe staph infection she was deemed "stable enough for a SNF".  As a family we didn't necessarily agree with that but we didn't really understand that we could object.  There were things we had pointed out as being not quite right, that had been ignored or passed off as RA (more on that soon!).  But, again, we didn't know we had a choice!

We toured the facility that had been touted as the "only 5 Star" facility in the area and were sufficiently impressed with what we were shown and told.  It sure sounded like mom was going to be on the road to recovery in no time at all with these folks at the helm!

Well, that ship started rocking quickly!  Mom was immediately put in quarantine and had only one or 2 physical therapy sessions outside of her room during the nearly 3 weeks she was there.  We were all made to "gown up", or not, depending on who was on duty at any given time.  Within a few days it was apparent that mom was not doing well physically and depression was setting in QUICK!

 Then we were told she had C-diff, which they had no cultures of, only the fact that she was "experiencing episodes of diarrhea" after being on antibiotics.  Now, call me crazy, but if a person tells you they have to use the restroom at 6AM and they are not allowed to get there until an hour or 2 later, I don't believe that constitutes diarrhea!  More on this dilemma later!

DO speak up and be assertive!  We've all heard the term "the squeaky wheel gets the grease".  This is certainly true in the health care world.  Many of us worry that we will be deemed a "complainer" or worse, a "hypochondriac", so we tend to down play our aches & pains.  Worry not about what others think!!  Speak LOUD and speak OFTEN.........don't stop until someone listens!

DON'T back down if you really feel you are right & might know something the doctors don't about your parents!  My problem was I kept second guessing myself.  They spoke down to me and made me think that I was wrong for evening questioning them.  It was an awful feeling and had dire consequences!  Don't let them bully you!!!

DO be prepared to spend an exhaustive amount of time dealing with a myriad of things that you likely never even thought about before!  Who knew that an act as simple as getting a prescription filled could take so much time?!  Who knew that it would be so difficult and time consuming just to coordinate appointments......this often took more time that actually going to the appointments.  Who knew that even coordinating your schedule to even find time to make it to the grocery store could be such a challenge?!  I can tell you who didn't know........ME!

I am hopeful that by telling our story others will be more prepared and better armed in their health care battles!

I'm also hopeful that our story will encourage others to be proactive.

Thanks for hanging in here with me!

Go see or call your parents & just tell them you are thinking of them!

Have a great day!


Kat Simpson said...

I am so happy you are sharing your experiences. I learned many of these lessons as a military spouse finding my way through that system.

Keep talking until someone listens - perfectly said!

healthcare hostages said...

Thank you Kat! I decided when I started this blog challenge that I might be the only one that found any value in my posts. That was OK because I was finding it very therapeutic to get it out there.

Thanks for reminding us that it's not only seniors that need a health care advocate.......WE ALL DO!

Edward said...

Thanks for the tips. As I am now 40 and my parents are in their 60s and in-laws approaching their 70s this is very helpful to be reminded of how to care for them at many levels. What a blessing it is to care for others. Thanks for sharing.

healthcare hostages said...

Thanks for your comments!

Trust me, it's never too early to start thinking about this stuff!

Leanne Chesser said...

Luckily my parents are in good health and I haven't experienced this yet. They also live in different cities than I do. However, I appreciate reading this so I can be more aware if the need arises!

healthcare hostages said...

I am so glad to hear that your parents are in good health! That will give you the opportunity to arm your self with the information you need to help then WHEN the need arises....Not IF! The fact that you are in different cities won't erase the need, it may make it a little MORE challenging.

Since you don't live close, maybe there is a sibling that does? Even if you won't be the PRIMARY care giver I believe you'll sleep better at night if you are involved and know that the person (or people) who will be caring for them when the time does come is the RIGHT person for the job!

Robert McGuire33 said...

Brenda. thank you for all of your heartfelt insight and instruction. With a 93 year old mother, this is very meaningful and helpful. We went through your trial with my mother-in-law in her sixties who had over 30 major surgeries be for she passed away at about 65. Once she complained of pain in her stomach so much the doctors said she is basically psychotic and a drug addict. They sent her to a psychiatrist. During her nest surgery they found that the previous surgeon had left the sutures in and that was causing the pain. N real apologies given. Doctors said here we are now, lets just move on. My wife's grandmother passed away last summer at 106. A whole other set of stories there. Keep up the good work Brenda and thank you. You should be compiling these post to write a book. Robert...

healthcare hostages said...

Thanks for your encouragement Robert! Wow, 93! Good for her and for you!

I'm sorry you had such an experience with your mother-in-law. It's a strain on every body.