Before I get to the heart of this blog, I would like to clarify something from my last blog. My decision now would be to give Bob oral antibiotics if he needed them for an infection.  On the papers for our living wills where it asks if we want antibiotics, I put a big question mark.  If Bob was worse, and I felt he was near death, I would opt not to give antibiotics.  But right now he is in a grey area, in limbo so to speak.  He is still enjoying his food, and is very responsive to me and other people, although he cannot say who we are or carry on any conversation. (For those of you who knew Bob, this is significant...)  Thanks for asking about this, Duane Hallock.
He is becoming more immobile, although he fell out of bed the other night.  I don't know how that could happen as the hospice bed has big foam bolsters all along the edges.  He was not injured, as the bed also lowers to the floor.  Hospice has brought in a lift as he is becoming very hard to transfer, and I am afraid someone will hurt their back.  It is not a Hoyer lift that I am used to and is not ideal either, but this one uses a jacket that is put on him and then the lift hooks on to hooks on the jacket.  I am afraid this is not being used as much as it should be, as it is quite cumbersome, and time consuming.  The CRNAs at The Piper were talking to the hospice bath aide the other day when I was there.  The lift is manual and they had gotten Bob stuck up in the air and couldn't get him down.  They said they were laughing and Bob was laughing!  He must have thought he was on a carnival ride.  They have figured out you have to manually push it down as well!
I would like to address in this blog something I am very concerned about.  I cannot worry about it, as there is nothing I can do about it, so it wouldn't do any good to worry.  I don't think I am a "voice crying in the wilderness" either.  I am speaking from what I observe in this area; I welcome comments on my blog if you observe something different in your area.  THERE IS A SHORTAGE OF HEALTHCARE WORKERS OUT THERE FOLKS!!  The new facilities that are opening up in this area are HUGE, and there is a new one opening all the time.  I visited someone in one the other day, and they cannot open all the wings, as there is no staff to do it.  The turnover in all facilities is phenomenal; when another facility opens up and the pay is 50 cents more an hour, everyone flocks there.  Facilities, including hospitals, use agency nurses and pay them much more than their regular staff, which is demoralizing to the loyal employees.  And this is nothing new, but the problem seems to be increasing.  Some nurses are traveling nurses--they travel to warmer climes like Florida, California, and Arizona in the winter and like snowbirds fly home in the summer, and still work for the travel agency and get their housing (in their own home) paid for.  But I have observed the downside to this.  One traveling nurse I knew traveled to Texas.  She was put in charge the first night on a unit as she was the only one that could speak English and there had to be someone there to answer the phone if a doctor called.  That is really scary; they don't know the doctors' preferences or hospital policies.  A lot of places are staffed with nurses from foreign countries. When I worked at a hospital near Washington D.C., a lot of the staff was from India or the Philippines.  They were hard working, dedicated and competent nurses, but could only work as nurse techs, because they didn't speak English well enough to pass boards.  Another business that is booming is hospice.  There are new ones opening at a dizzying pace.  They are funded by Medicare, and the government is going to wake up to that soon.  I also want to mention VA hospitals.  Our veterans deserve the best they can get, but I am afraid that is not the case in a lot of places, with the news of the long waiting lists to get treatment.  In our area, the reports vary about the care.  I think it is pretty good here, and for that I am thankful.  I know several wonderful ED doctors from Shawnee Mission Medical Center left to go to the VA hospital where they could work for 20 more years and retire with a great pension.  Can you blame them?!  I am so thankful for the healthcare workers that are willing to do that kind of work that is so demanding both physically and emotionally.
Now people that are living in these facilities are wondering if they are going to get the tax breaks for living in them that they have in the past. There are several continuum of care facilities that you get a tax break when you live there as you pay for your health care to the end of life in the package deal.  I think I can deduct Bob's care this year, but we will have to wait and see what happens in the future.
Bottom line, I would like to die in my sleep, so I would not have to go to ANY facility.  But as we all know, we don't get a choice!
I have been making pillows for friends who have lost their spouses from the shirts and sweaters of their loved ones.  As I see them grieve, I grieve with them.  It reminds me of the grief cycle of Elisabeth Kubler-Ross.  The five stages are denial, anger, bargaining, depression and acceptance.  But they are not stops on some linear timeline in grief.  I would much prefer to leave you with this quote:
"Grief never ends.  But, it changes.  It's a passage, not a place to stay.  Grief is not a sign of weakness, nor lack of faith...It's the price of love."  from Random Thoughts n' Lotsa Coffee with J.V. Manning.  Thank you Jackie Moranville for sharing the quote.
May your cup of coffee (or tea) be bottomless and your tax return be more than you expected,
Until next time,
Betty

Happy Groundhog day!  I understand that he saw his shadow, so there will be 6 more weeks of winter.  But as I saw on Facebook, he is a rodent, not a meteorologist.  I intensely dislike winter and would love to go back to sleep and wake up and find that it was Spring!  I am well, but trying to dodge these cold and flu germs.
Bob is doing well also.  His mobility is decreasing, and hospice brought in a lift to help transfer him.  I know he has the strength to stand, but when they ask him to, his brain just won't connect with his muscles to perform the function.  I certainly don't want the staff to hurt their backs lifting him.  So far, he hasn't had the flu.  One day when I was out to see him I noticed what sounded like the beginnings of bronchitis.  He was coughing, and there was audible wheezing that anyone could hear without a stethoscope.  I went home and spent a sleepless night going through different scenarios.  If he got worse, would I ask for antibiotics?  I finally came to the conclusion that I would allow oral (p.o.) antibiotics, maybe intramuscular (IM) and certainly not intravenous (IV) as that would entail going to the hospital where the germs are even more lethal.  It ended up that he recovered on his own, and I didn't have to make that decision.  We discussed this at the Alzheimer's support group which happened to be right at the same time (a wonderful blessing).  Another lady in the group was faced with the same decision.  So saying, I am well aware that the flu could sweep through the patient population at The Piper, even though they all had flu shots, and in their compromised state, many might succumb.    The decision would be made for me, as antibiotics would not help.  There is a sweet resident there that I really love.  She went to the hospital for pneumonia, came back, and I thought she was rallying to recover.  But when I saw he yesterday, she was obviously declining, and it breaks my heart.  I know hospice would have helped walk and talk me through it and be there for me if it happens again, so that is comforting to know.  The timing might weigh in on the decision, but is there ever a good time?
My daughter sent the following to me, and I hope you will read it carefully, and maybe it will help you in difficult choices you may have to make someday.  It is written by Kimberly Callinan, who is chief program officer of Compassion and Choices, the nation's largest end-of-life choice advocacy organization.  Also by Brad Stuart who has been an internal medicine, palliative care and hospice physician for almost 40 years.  They wrote this for American Forum.

                                    5 questions to ask about end-of-life care:

By 2030, and estimated 72 million American, one-fifth of the U.S. population, will by 65 or older, according to Kaiser Health News.  Yet while three out of four doctors believe it's their responsibility to talk with patient about their end-of-life care goals, only one out of seven actually held these conversations, according to a recent survey by the John A. Hartford Foundation, California Health Care Foundation and Cambia Foundation.
The reason?  Nearly half of doctors said they don't know what to say, and less than a third are trained to talk with patients and their families about the end of life.  When doctors don't know how to balance their patients' quality of life with its length, it's only too easy to resort to tests and treatments.  As a result, many people spend their final days shuttling in and out of the hospital instead of enjoying all the precious moments they can.
Patients can change this dynamic just by asking the right questions.  This gives their doctors permission to talk about the benefits and risks of treatment and outline all care options including hospice.  Only then can doctor and patient make treatment decisions together to match the patient's personal goals, priorities and values.
These questions cover five major areas:

MY CONDITION:  Is my disease curable?  Will it shorten my life?  By how much?  What's likely to happen as it progresses?
BENEFITS OF TREATMENT:  How will this treatment help my condition?  Will I be cured or will the disease come back?  What are the odds either way?  Will treatment return me to normal function?
BURDENS OF TREATMENT:  Does this treatment have side effects?  What will my quality of life be like during treatment?  What activities will I have to give up?  How much time will I spend in the hospital or going to doctors' appointments?
OTHER TREATMENT OPTIONS: What are my other treatment options?  What happens if we focus on slowing the disease without going for a cure?  Or focus on comfort rather than fighting the disease?  Or do nothing?  What about hospice?
DOCTORS PERSONAL VIEW:  A 2014 study by physicians affiliated with the Stanford University School of Medicine, Stanford Hospital and Clinics, and Veterans Affair Palo Alto Health Care System showed that almost 90 percent of doctors would choose to forgo aggressive treatment at the end of their own lives.   Most would want to die gently with few interventions.  So patients should also ask their doctors:  "What would you do if you had my diagnosis and prognosis?"

By asking these questions early in the course of illness, patients can empower themselves to write their own end-of-life story and have more control over their last years, months and days of life.

                                                          *****************************

I wish families would read this as well as the patients.  People's decisions will be different, depending on their age, and certainly dependent on the ages of their children.  I have seen patients opt for treatment to get to a life celebration, such as a wedding, but then discontinue treatment.  I wish that families would allow their loved one to make the decision, and then respect that decision.  End of life often brings on family conflicts that have been buried for years and should certainly not be brought up at this time.  They spend precious time fighting instead of loving.  Focus on the memories, the good times, and give yourselves that gift.

The other day I was cleaning out a drawer.  I came across a note on an index card from Bob that he had written and put on the counter for me to read when I came home from working the night shift.  I am sure the house was spotless, as he would clean the house thoroughly before going to work.  It read:
Good Morning Betty.  I love you.  Have a good rest.  Love, Rob xxxooo

That is the man I know and love!  I am so glad he is content now, and looks like he is at peace.

Betty