What’s next? (part I)

Monday night rolled around and Jamie called me to tell me the report from Mom going to her doctor.  Mom really liked this doctor, and she suggested Mom not get the feeding tube or the trach.  She suggested Mom go through Hospice.

Angie, the Hospice nurse, came by and evaluated Mom.  She told us the options Mom had.  They did not have someone from Hospice which could come home with Mom and take care of her.  Our family was to be the caregiver.  We knew Dad could not handle taking care of her anymore and was not an option.  An option was for her to be admitted into the Hospice facility which has twelve beds.  There are two nurses on staff and two helpers which would mean if Mom needed to use the restroom she may have to wait before someone could help her.  She pretty much needs someone with her at all times.

U  Are there suggestions your health care provider can give you concerning negative events/things they know will probably happen to better prepare you?  U

After she got out of the hospital, she could be admitted to the Hospice facility, or get care at home.  If Dad needed temporary help, they could admit her for five days to give Dad a rest, or if she did not like the facility, she could go back home.

At first, Mom did not want anything to do with a trach or a feeding tube.  She did not want any outside help to prolong her life.  Then after the visit to the doctor and getting evaluated by Hospice, she has decided to get both the trach and the feeding tube.  Dad called the doctors from Mayo and now something needed to be done immediately.

Jennifer stayed with Mom this past weekend, February 27^th, to let Dad rest during the night; she stayed up with Mom.  She told me the most Mom slept was about thirty minutes.  The doctor put Mom on a patch to help dry up her secretions so she would not choke.  Since she was on this patch, they did not put her on the medicine that helps her not go to the bathroom as much.  They were up a lot of the night going to the bathroom, sometimes every fifteen minutes.

Jennifer told me Mom is talking a lot in her sleep now.  Joan, Mom’s friend in her Sunday school class, had been trained with Hospice up North.  She gave Jennifer a book called, Final Gifts.  It spoke of things patients go through when they are near death. 

Jennifer told me Mom woke up during the night and with a blank stare looked at her.  She knew Mom was still asleep.  Mom talked in her sleep about the conversation she had with Angie.  One of the things she said in her sleep that disturbed me was, “Stop breathing.”  Since Mom does not share her feelings with us, I did not know if she had already given up. 

Her quality of life right now is not much.  She truly is suffering.  She even struggles to say a few words.  I called her last night to talk to her.  Dad answered the phone, and I talked with him for a few minutes.  He said he was resting for a little while.  I told him I knew it must be hard on him and he replied, “You have no idea, no idea.”  I told him I wanted to talk to Mom.  Mom got on the phone, and I told her I loved her and was praying for her.  She said a few words I could not understand.  I did not ask her what she said but commented I knew she could not talk very well.  She said she loved me and then we hung up the phone.  It was a very brief conversation, but I wanted to talk with her because tomorrow she would go into the hospital.  Dad had gotten in touch with the doctors at Mayo.  They decided to admit her to get a feeding tube at 7:00 a.m. the next day, which was March 2^nd, 2004.

A blanket of snow

The following day, a beautiful blanket of snow fell to the ground.  Lauren and Ashton were looking forward to a snow day and having a snowball fight.  We spent the morning making snowmen and playing in the snow.  I called Mom to let them tell her we had snow.  No one answered.  A few, very rough days would start today.

Jennifer called me on the phone and asked me if I had read Dad’s e-mail.  I had not.  Dad wrote this e-mail on January 16, 2004.  Also in the e-mail it talked about Mom needing a wheelchair soon.  It read, “Girls, Elaine is getting worse every day.  She is choking, real bad, on her drainage, it’s real scary.  I talked with a doctor from Mayo tonight.  He is recommending a tracheostomy (trach) at the same time as they put in the feeding tube, and the BIPAP machine.  They will probably do it late next week, if they can get a bed at the hospital.  We will see a local heart doctor tomorrow at 8:15 a.m.  I will discuss all this with her.  I’ll try to send another message tomorrow night.  There is a lot going on.  I’ll try to keep you posted.  Love, Dad.”

Dad had called Mom’s doctor and the doctor’s recommendation was not to get a trach or feeding tube but to go through Hospice.  Here are a few important terms:

*A tracheostomy (trach) is an artificial airway that is surgically placed in the lower neck area to ease breathing and clear secretions. 

*A feeding tube is a temporary or permanent tube surgically placed through the abdomen usually through the stomach to provide nutrition. 

*The BIPAP machine is used to aide breathing in order to help the patient get a bigger volume of air in their lungs. 

*The Hospice Foundation of America helps patients and their families that are going through a life-limiting illness.

Mom had a decision to make.  Live a while, maybe a couple of years on a feeding tube and a machine to help her breathe, or to do nothing and live a much shorter life.

U   Have you sought out resources available to you such as Hospice? (A doctor’s referral is necessary to enter Hospice care but can be initiated by anyone.   Most Hospices accept patients with six months left to live or less.)  U

Tonight’s devotion was a doozie!  The title was “Recognizing God’s Presence.”  It spoke of how we focus on miraculous events instead of looking at God’s presence and Jesus Himself.  It even spoke of a wheel-chair-bound person getting up to walk again.

The scripture was Mark 8:11-13.  “When the local Jewish leaders learned of his arrival they came to argue with him.  ‘Do a miracle for us,’ they said.  ‘Make something happen in the sky.  Then we will believe in you.’  “He sighed deeply when he heard this and he said, ‘Certainly not.  How many more miracles do you people need?’  “So he got back into the boat and left them, and crossed to the other side of the lake.”

The prayer at the bottom of the page was very relevant, “Dear Lord, forgive me when I demand evidence of your working and power instead of thanking you for all you do.  Please open my eyes to be aware of your presence, to sense your nearness, and to see the works of your hand everywhere I look.  With all my heart I welcome your presence today, however you choose to reveal yourself to me.  And don’t let me forget to thank you.”

 Fuller, Cheri. The One Year Book of Praying through the Bible. Wheaton:        Tyndale House Publishers, Inc., 2003. February 26.

Not knowing

Ever since Mom has been diagnosed, she has not wanted to read up on the disease because she would rather not know.  She had a doctor’s visit coming up at the Mayo Clinic (they help diagnose and treat difficult medical problems) and did not want to go, but Dad made her.  These visits are very important because they can give her imformation about the necessary equipment she currently needs or will need in the future.

During one of these visits, Joann, and Jennifer went with her.  Jennifer was very helpful because she knew certain questions to ask and issues to bring up.  One of the things we wanted the doctor to bring up was Mom’s wishes as to whether or not she wanted to be placed on a ventilator and other medical issues.  They did not want to bring it up in front of Mom, so they made up an excuse to go to the bathroom while at the doctor’s office.  While the doctor was in the hall, they asked her to bring up the issues.  Someone had told Joann that you don’t want to bring certain issues up because the person will hold it against you.

U      Are there sensitive issues or questions you can get medical personnel to bring up?  U

Mom had a will but not a living will.  She told the doctor and my sisters she knew where she was going when she died (to Heaven) and did not want to be placed on a ventilator.  This is another difficult decision Mom had to make.  They even discussed issues about her being in a car wreck and whether or not she wanted medical help.  When we put her in the car, she would blow off wearing her seatbelt.  I don’t know if it is because she did not care if she died, or she thought it did not matter anymore.  It bothered me, and I would still make her wear it by strapping her in.  

I think she was headed in the direction of Do Not Resuscitate (DNR).  At the last visit, we wanted to ask how much time she had left to live.   At this point they told us six months to a year, but there was no guarantee.  Mom still does not know we are aware of the shorter time frame nor does she.

U      Does your loved one have a will and where is it located? U

U      Is the will updated to their current wishes? (I know of a lady whose father passed away from cancer.  He only lived six months after diagnoses.  He wanted to give his daughters money for their retirement.  One week he was fine, and the next week he was being air lifted to a hospital and put on a ventilator.  He never changed his will, and their step-mom got all the money.  Time is of essence because people do not know when their last day will be.)  U

Discussion of a few important terms is needed here.  A living will is a document that lists medical and life sustaining treatments the seriously ill or terminally ill person desires.

U   Does your loved one have a living will?   U

The executor of the will is the person that legally must follow the wishes of the deceased listed in the will and settles their estate.  They deal with issues such as paying taxes, settling debts, and distributing assets.

U      Who is the executor of the will and have they been explained their duty as to what they need to do when the loved one passes away?  U

Five Wishes is a living will that deals with issues such as:  the person they want to make decisions for them when they can’t make it for themselves, medical treatment, how they wish to be treated, and other important wishes.

U      Do you know their Five Wishes?  U

U      Has your loved one considered giving the gift of life by being an organ donor? (Some medical conditions will prevent organ donations but donation is still a possibility for other chronic medical conditions or diseases.)  U

U      Have they considered an advance directive or a durable power of attorney for health care?  U

An advance directive is a legal document that allows one to express their wishes if they are too hurt or ill to do so.  A durable power of attorney (DPA) for health care is a document that names the person to make health decisions if they are unable to do so.

U  Have you considered going to an attorney to find out what you need to know and what your rights are concerning a DPA for health care?  U