This blog is boring until you need info... Two Quick Tips...

A couple quick tips...

If your parent or loved one needs to go to the ER and you have a preference regarding a hospital and your loved one is stable and not in a dire circumstance, take them yourself as opposed to transporting them in an ambulance.  If your loved one goes by ambulance and your preferred hospital is on divert, he or she will be transported to the nearest hospital that is NOT on divert.  

This could be across town and your loved one's doctor may or may not be on the medical staff there.  Potential Train Wreck. 

If you transport them yourself, your preferred hospital cannot refuse them, even if they are on divert.

Ignore this advice completely if your parent or loved one is in a potentially fatal situation.  Rely on the ambulance and Paramedics.   Don't try to take them to the hospital on your own.  Let the paramedics do their job!

 Tip #2

If you have a hospital in your area like the Oklahoma Heart Hospital, take your loved one there. This hospital is a joint venture, majority owned by a renowned group of cardiologists and co-owned by Mercy.  The average wait time for patients in their ER is around 7 minutes.....  No kidding...

Their ER is fully accredited to treat any and everything...  Sprained ankles, fractures, heart attacks, puke bug, ingrown toenails, gallbladders, strokes, you name it....

These folks are on your loved one like ants at a picnic...  My mom's been there several times..  They aren't interested in the goofy insurance/Medicare forms.  It's all about taking care of the patient regardless of their problem.

Should your loved one require hospitalization after evaluation, treatment, stabilization and they do not have a heart-related problem, they are transported via The Mercy Tornado Alley Tunnel to the Mercy Health Center.  They will be admitted there to a private room.

How do I know this you ask?  Well I'm a volunteer lobby pianist and I had to go through the entire employee orientation, TB test and all..    It was like summer camp...   The Oklahoma Heart Hospital was the first All Digital Heart Hospital in the USA.  I hope you have something this fabulous in your area...

BTW, the food's great too!

End of Life Fantasy

Disclaimer:  Don't read this unless you can take a joke and are weary with this end of life thing. This post will likely be irreverent to some or most.

Try to imagine if we could engineer our own end of life journey...  I know it's not possible, but still fun to think and dream about, especially after my ten year odyssey with middle of the night fall calls, ER's, perpetual moving, pneumonia, fractures, cardiac arrest, hospitals, nursing homes, assisted living facilities, skilled nursing facilities, ad nauseum....  

My dream is totally preposterous and outrageous...  

What if we could create a new cruise line and call it "Sunset Cruises"?  We'd market it to "end of lifers" like us, in a few years...  What if we could create a business plan such that the 5K+ a month, the going rate for current end of life care, could be traded in for the Penthouse Suite on a luxurious cruise ship? This is so much better than the 5K plus a month we'd be paying for the ASS-isted Living Facility, Long Term Care facility with one person taking care of 12 or 15...  Many of these places smell bad too..

Instead of understaffed facilities, charging us out the wazoo, we'd have our own private 24/7 butler, catering to every possible need, 24 hour room service, housekeeping, entertainment, pool with swim up bar, shipboard doctor, an actual MD a CASINO, gift shops, fitness center, and beauty shop on board.  Oh, and there might even be a grand piano in the Penthouse...  We'd book the ship that's in the Caribbean during winter...  Great weather... Shuffleboard too!

And, if you're in the Penthouse, you get to have dinner with the captain every night.  Whoo Hoo.

 Honestly,  this is the kind of service you receive when you book the Penthouse Suite on a cruise ship   We've never had the pleasure or financial opportunity to occupy such rarefied space, but we've been on enough cruises to know that this is how these people live....  The 5K monthly price point is not unrealistic for such luxury.  

Here's where my thoughts might offend someone.  When you croak with your private butler at your side, wouldn't you rather be tossed overboard and fed to the sharks than forking over thousands more to the funeral home, casket maker and cemetery people?   Just think.  Your burial is totally "green".  You're being recycled as food for the sharks... Maybe there will still be something left for your heirs, if you still like them...

We'd probably need to register the ship in China...Human life, rights, and waste aren't such big deals over there.

Want to book a cruise on "Sunset Cruises"?   Investors anyone? 

I'm an irreverent bad girl trying to make fun of a bad, sad situation....Sleep tight...  Hope you don't get a Fall Call tonight!

Don't Be Afraid of Hospice!

When your parent or loved one has a diagnosis that meets the criteria for hospice care please don't shut down this possibility out of fear or denial.   I know a physician has to actually say that they have six months or less to live to receive this benefit.  (At least in our state)  Don't be afraid of this.  I know it's a hard thing to hear that your parent or loved one has only six months to live...  Keep an open mind.    Please don't deny your parent or loved one this benevolent benefit.  Try to remember that we're all in the waiting room.  Nobody gets to stay here forever... You will find peace in making your parent or loved one's last days as comfortable and easy as possible.

 Hospice provides a wonderful benefit for people in the terminal stages of many diseases and conditions.  They also care for the family and loved ones during the difficult period of end of life.

On the other hand, there are people on hospice who linger a while longer.  In these cases hospice provides a very effective non-invasive comfort care support team without the disruptive and difficult intervention of multiple, scary, hospitalizations.

Hospice provides my mother with a wonderful registered nurse who checks on her multiple times a week.  They provide her with in-room oxygen.  They provide a hospital bed, bedside commode, and bedside table.   They provide her medication in conjunction with her qualifying diagnosis.  Whenever she falls or has breathing issues, the on call RN will come over and check on her.

Hospice is a wonderful thing.  If your family member qualifies, embrace it! 

Ninety-One and Having Fun!

Tonight we celebrated my mother's 91st birthday.  She's still getting dressed up, getting her hair and nails done and having fun...  This is in spite of her being on hospice for two years and seven months with end stage heart failure.  She has other issues unrelated to her hospice diagnosis including COPD, immobility, and short term memory failure.

No matter.  She rocked in her tiara, beneath her plethora of Mylar balloons.  She ate like a lumberjack.

A good time was had by all..  Her smile says it all.  

Enjoy every minute with your parent or loved one.

Finding the Right Doctor

When your parent or loved one develops multiple serious medical conditions that require frequent monitoring and/or periodic hospitalization you should consider choosing a doctor who follows his or her patients while they are in the hospital.  I know that might sound crazy but in today's health care environment, most hospital patients are assigned to and followed by a "Hospitalist".  These doctors are very qualified, licensed physicians but they most likely have never even met your parent or loved one. This is especially disconcerting for an elderly person who is frightened by change or for someone with a complicated medical history.

Try to find a good internist who makes rounds on his or her patients while they are in the hospital and doesn't delegate their care to the hospitalist.  The difference can be night and day.  Fortunately, there are still doctors out there who follow their patients while in the hospital but they are getting harder to find.  You may have to look into the various "boutique medicine" models.  It's likely you will have to pay an upfront out of pocket annual fee to access this kind of care but in my experience, it is worth its weight in gold.  My mother's physician not only follows her while she's in the hospital but he or she, or the call partner is available pretty much 24/7 when she needs an antibiotic, puke bug medicine or more breathing treatments for her COPD.  We have the meds or treatments within a couple of hours, even on weekends and evenings.   We no longer have to take her to his office and expose her to more germs...  He comes to the house once a month or more, if necessary, and performs the old fashioned "house call"...

As much as the health care environment has changed for the worse, I'm thrilled to see more physicians embracing this "Marcus Welby" boutique model.  Why not pay extra to obtain the care our parents need and deserve?  Some people go into debt and spend ridiculous fortunes on automobiles, homes, and vacations.  Why should superior health care be any different?  This is especially true if proactive health care can prevent a hospitalization...

Hospital Hints -

Welcome to those of you who have an elderly parent or loved one in the hospital due to a fracture, infection, pneumonia, bronchitis, cardiac problem, or the many chronic illnesses and issues I haven't thought of or experienced.  Maybe it's your first experience with your parent or loved one in the hospital for something really serious.  

• Your parent or loved one may have been living independently at home or at an independent living facility, inpatient rehabilitation facility, skilled nursing facility, assisted living facility, or long term care...  These stages along with your parent's condition can become like the game "checkers"..  Your parent can double jump surprisingly from one stage to two or three stages ahead.  They can go from living independently in their home to requiring skilled nursing, rehabilitation, or assisted living....
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• Don't be caught off guard regarding this reality.   Use the time you have now, while your loved one is in the hospital, to research the next step.   First of all, make it your business to "make friends" with the discharge planner for your loved one.  This person is GOD and more important than the doctor.  He or she will know how long your loved one is approved to stay in the hospital.  It is his or her job to find a "place" for them...  Your loved one or parent is one more name to check off of their clip board.    If you aren't proactive about this, your parent or loved one could end up in a really bad, stinky place, sharing a room with a stranger....  Don't leave this decision up to the "Discharge Person"...  Be involved and proactive...  Research these places and request a specific facility.
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• In my experience, my parents received the best care and rehabilitation post discharge in an inpatient rehabilitation facility.  The one we utilized was connected to the hospital.  My parents were "frequent flyers" in this facility.  The physical rehabilitation is intense and extremely effective. Medicare has really cut back on the availability of this for seniors.  In any case, you have every right to demand that your loved one be assessed for this level of care.  Hope and pray for the best that they will be accepted.
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• In any case, research Medicare approved Skilled Nursing Facilities and have a preferred option.  Try to find facilities with private rooms.  These are few and far between.  These places are funded by Medicare and terribly understaffed.  Just the reality.  None are great.  Try to find the best physical rehabilitation situation.  How many physical therapists do they have?  How much rehab will your loved one receive?  How many times a day?
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• Research Assisted Living Facilities and have a preferred option.  Always ask about the ratio of caregiver to patient.  Nobody wants to talk about this...  You'll have a hard time getting a straight answer.   Most of the "Big Box" Corporate America places have pathetic ratios..  I'm talking about 1 caregiver to 12 or even 15 patients.  Really???   Do you think your parent's going to get any help.  You'll be getting the "FALL CALL" in the middle of the night...  They really shut down the ratio of caregiver to patient during the night.  This is when most falls happen in my experience.  
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• Try to find a "boutique" assisted living facility in your area..  These are usually private homes in nice neighborhoods, managed by an individual owner with a vested interest in good care.  If you have a relationship with your church, that's a great place to start.  That's how I found the best place for my mom.  Yes, the "boutique" places might seem to be more expensive but do the math...  The Corporate Big Box Places quote you a base price and keep adding on for stuff like tying their shoes, changing their diaper, wheeling them up for Bingo....  It all adds up and the total increases substantially.  Don't go there..  There's no help there.   My experience with the "boutique facility" has been one price... There's no extra charge for shoe laces or tying them.   Wheeling them up for Bingo is free!   It might seem like a lot but after you make the comparison, you'll see the difference.
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• Research Long Term Care Facilities and have a preferred option.  If you don't do this yourself, it will be done for you and you won't like the result...  My father spent the last years and 2 months of his life in a VA facility.  If your parent is a Veteran and a male person, this might be a good option but check out your local facility.   My dad made the D-Day Landings.  The Veterans Home in our area treated him with dignity and great respect.  Please check out your local VA Longterm Care Facility.  Our experience was very good but they may not all be the same.    
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• I hope this helps someone.  I wish I had had someone to help me ten years ago.  Please reach out if you need to vent.  I understand.  

Don't force the shower or tub.... No matter how nice and perfectly handicapped...

When your parent or loved one can't walk and is scared of getting into the shower or tub, even with help, they are really frightened of falling while standing...  It's just a bad idea to force the issue, even when the bathroom is beautifully handicapped equipped...   My suggestion to you is Sponge Bath Only, SBO..... Hospice or Home Health or loved ones can easily comply with this...

I spent 2 hours on the phone tonight with my mom trying to calm her down after a hospice bath aid tried to convince her to get into the shower...  It's just not worth it or a good idea.  My husband's on the phone with her trying to calm her down...  At this stage, everything is a BIG DEAL.    It takes a lot to calm them down when this happens..

In my experience, it's just best to go along and try to fix things and comply with their wishes....  Just say "yes" and don't argue....  Make it happen...  At this stage, just try to make your own "Make a Wish Foundation"....  Ice Cream works for my mom.  Getting dressed up and getting her hair done works... Going out to eat at nice restaurants is all good...  Going to the dentist and having him brag about how she has all her own teeth is totally huge....  Discussing her Navy Nurse Days during WWII is always a great re-direct...  I hope this helps somebody...   Sorry to go on too long.  It's been a long day...

Money Matters

I had lunch today with three delightful ladies who have all been profoundly touched by end of life and caregiving, both personally and professionally.  One is a Registered Nurse who just lost her dear mother.  Another is the owner of 3 spectacular "boutique" assisted living facilities and the third is a caregiver extraordinaire.  I had the good fortune to find them during my own mother's end of life journey.

During our lively discussion, the topic of money came up in regards to adult children trying to preserve their parents' or relative's estate at the EXPENSE of providing the best care for them.  I find it disgusting and immoral.  I simply don't understand how they sleep at night knowing that their loved one is not getting the care they clearly deserve because of their selfishness and greed.   Can there be a greater betrayal?   It's one thing if the money is not there to begin with and an entirely different thing when it is, but the child or relative isn't willing to use it for its intended purpose.  Personally, I equate it with stealing.

My parents worked very hard and saved every dime.  They educated me.  They exposed me to music, dance, art etc.  They supported me in every way.  They never spent anything on themselves.  By God, the money they saved is THEIRS!  I don't deserve any of it.   That money is strictly for their comfort and care.  I am tasked with being a good steward and making sure they get the very best of care.  I owe them this and much MORE...  I am not here to "inherit" their money.

The values and morals they taught me have shaped my life.  They are worth far more than any inheritance.

Thoughts anyone?

Dental Decay at Age 91

My mother's candy stash finally caught up with her!  An arduous trip to the dentist this morning revealed decay in several teeth.  BTW, she's 91 and still has all her teeth...  Too bad her heart and lungs didn't get the "let's stay healthy" memo..     She's in no pain or discomfort with this decay.  Extraction and root canal came up as options.  I think I'd rather see her hung by her toenails than put her through that.   I made the executive decision after consulting with her internist and dentist to wait and watch.   Hopefully, she'll continue to have no pain or discomfort.  I've placed her hospice nurse "on abscess alert".  We'll have antibiotics at the ready should the situation change.  That's another post..

From now on it's just sugar-free candies for this dear lady.

Introduction to End of Life Blog Questionnaire

Do you have a loved one or a parent dealing with end of life issues?  This theme has defined the last decade of my life.  The purpose of this blog is to share what I have learned and to help others who are dealing with these issues.    I'm not trying to make money or achieve celebrity.   I'm just wondering if there is any interest in this topic before I over share.....There's a lot of "over-sharing" going on and I don't want to contribute to the on-line diarrhea.  I'd appreciate your comments.