Monday, November 25, 2013

Get Over "It"

Soon it will be coming up on the two-year anniversary that my husband passed away.  Recently, a person told me that I should 'Get Over It' and to move on with my life.  The person also indicated that, we all lose people and I should not allow memories to control my actions.  

As a widow, I have heard that this type of thing happens.  Friends or family indicating their opinions of how long grief should last.  It had not happened to me directly within the last two years and I considered myself lucky.  But now, there it was, somebody said it.  How did I respond to that person?  I didn't respond to them at all.  After all, when I look into the mirror, I see my own eyes everyday and I know myself better than anyone else could.  

How did I feel about what was said?  Well, that part was what surprised me.  I actually felt a twinge of anger throughout the day.  What should "moving on" look like?  Is there a standard of moving on that I am unaware of?  I thought of all the things that I did after my husband's funeral.  
I continued to work full time.  I made improvements to the much ignored house.  I made friends.  I gave my children things to smile about and to continue to work towards.  I strengthened my relationship with my children and let them know that everything will be okay, that I am still here for them.  We went on family trips, to the ocean, to the mountains.  I continued to be creative and did things with my hands that make me happy.  I write and maintain a blog to help raise awareness for Pulmonary Fibrosis.  I realized that I need to care for myself and started to exercise and eat a bit better.  I contemplate what direction my life will go and explore the things that interest me.  I planted a garden.  I read books.  I swam in the river.  I hugged, smiled, and laughed.  Yes, I still keep my loved one's memory alive.  Hmmmm.... not bad for less than two years of losing a spouse, in my opinion.  What was making me angry?  Perhaps the feeling that I needed to defend and itemize my accomplishments toward growth.  Sorry, if it seems like I am not advancing fast enough for you.

I am not one who enjoys feeling anger, I reached out to a friend to see what her standpoint was.  As a matter of fact, she is Annie, my co-host on Breathing's Face Book page.  She, too, lost a loved one to Pulmonary Fibrosis.  She also experienced similar input from a friend, to just Get Over 'It.'  Annie indicated that 'it' is her lovely mother.  'It' is my beloved husband.  'It' was a father, a brother, a son, a friend.  'It' is not an it, It is a person.  A person that we care for and love.  She is right.  

As for not allowing memories to control my actions, that is true if the actions are negative and destructive. What if the actions are of kindness or advocacy?  If we do not allow our memories to shape us or control our actions how is it that we ever learn and grow?  I am glad I am not the person I was at 14.  I am glad I am not the person I was at 24 or 34.  This is because I experienced things that allowed me to reflect, learn and grow.  It is my belief that certain things happen to all of us that cause a struggle or a look within.  This is what life is!  There is a beauty in life because of these experiences.  Love, grief, happiness, mistakes, and success do become part of our memories for a purpose.  So that we can evolve in our thinking.  These are our own personal life's experiences that began from the moment we were born and shape us into the unique beings that we are.  To turn my back on the life's events that shape me would be turning my back on myself.  


Thursday, November 14, 2013

We Should All Have This Discussion ~Malcolm Weallans

It seems that being semi-retired is a misnomer, or at least it is in my case. I seem to have less time now than I used to. Besides helping NICE to train other Guideline Development Group members I also seem to have got involved with the Patient Voices part of NHS England. I think it was because of this that I heard of a conference that I attended today. The subject of the conference "The Leadership Alliance for the Care of Dying People" engagement.

This conference was one of a series of 12 being run in 12 different locations in England. The basic concept is that they are looking at how to replace the Liverpool Care Pathway and are looking for the views of patients, care-givers, care workers, and professionals as to what next. The conferences are being facilitated by a number of organizations including MacMillan, Marie Curie, help the hospices, and most of the locations are hospices so obviously they weren't expecting a large turnout.

But the subject is of great importance to all patients with a terminal condition. They really want to know what patients feel about these plans but as yet they don't know how to get patients to attend. I was appalled by the document that I received telling me about the events and I couldn't forward that to this group as I felt it gave a wrong impression. The thing I found most difficult was the title which referred to "for people at the end of life" and accompanied this by pictures of geriatrics. As we know from this group end of life is not confined to geriatrics.

But I still decided that this was worth me spending a few hours at showing people that there are significant other groups of people who should be considered in this context. I know that many of the group members will need to think about these issues and would want to make sure that they and/or their loved ones would be getting the best possible care at end of life.

The afternoon centered on discussing a document that has been produced by the Leadership Alliance for the care of Dying People. This was in response to the report produced by Julia Neuberger into what was wrong with the Liverpool Care Pathway. Basically they have decided to throw away the Liverpool Care Pathway and replace it with something else and they want to know what else. They have produced a discussion document which can be downloaded from
and you can also comment on this. The discussions from the 12 conferences will be discussed to make sure that whatever happens there will be no repeat of the Liverpool Care Pathway debacle.

What I found most surprising this afternoon was that there were only 3 or 4 patients and there were 30-40 others. These others were representatives from hospices and care organizations, many of whom have been trained as nurses but have chosen to give up their vocation in favor of an office job. How significant is that? The other thing that I found surprising was that they all talked about how many of the proposals in the document were covered by advance care directives and the fact that this plan does not really cover what as wrong with the LCP. As they all seemed to agree the Liverpool Care pathway was not a bad idea, it had just been misused by a number of medics who seemed to forget that there is a need for compassion towards the patient and the family and instead concentrated on making sure that they ticked all the boxes so that they would not be penalized financially.  But there was also a group who had read the document and felt that this was merely another way of explaining Advanced care Directives/Plans. I don't know about you but I have never been asked about my preferences for end of life care, and that is despite having a long term terminal condition, and having spent 5 days in a coronary care unit. And I don't recall many people mentioning such directives or plans. Surely we should all have this discussion. 

Please take some time to get involved in this process and make your views heard. It is very important that patients and carers should make their feelings known.
Written By:  Malcolm Weallans

**Thank You Malcolm for sharing this fantastic information! This particular link is for those in the United Kingdom, although the concept is sound, no matter where we live. ~Breathing

Monday, November 11, 2013

My Donor, My Hero ~Pamela De Loach

It was November 10th 2011: It was a normal day for the De Loach’s (expect for me who has IPF and has to wear oxygen 24/7, this is as normal as it get for us). Bob and Rob were off to New York and I’m off to work thinking about the day and the long weekend with my girlfriend who is staying with me while Bob is away. It was a normal day at work as I ate my lunch in my office because I do not have the energy to walk to the staff lunch room. Back in the classroom we start lunch breaks for everyone else, one of the students’ needs to go to the nurse for a procedure so the other aide leaves.

Whoever said your life can change in a second was right. The phone rings, it’s the office, Tampa General Hospital (TGH) is on the phone they want to speak to you. I politely ask if I can call them back; the voice on the other end says "No, I’m coming to stay with your kids and you have walk to the nearest phone with an outside line." It finally dawns on me what it was- “the call”.

I thought about “the family plan” developed for when the call came, but I was so excited and I couldn’t drive home. Some of the school folks offer to drive me to TGH. The new “family plan” is quickly developed: Rachel, Joshua, and Angela would meet me at TGH and my school buddies would stay with me until my family arrived. I arrived at TGH and the testing began to see if the donor and I were "the perfect match".
As we waited for the test results to come in, the doctors and I spoke to Bob and the rest of the family in upstate New York via Skype. Everyone was in a good mood and when my coordinator announces “IT’S A GO” the room breaks out in cheers and tears as our prayers have been answered.

The next hour is a blur, the family walks with me to the OR and we say goodbye. I really got scared in that second. The surgery started shortly after that and my new lungs are in on November 11th 2011.

My donor and their family are my heroes. In their grief they honor the request of their loved one and gave me a chance to continue on with my life. As we celebrate this second year, we have to remember my donor’s family. Please remember to check off that donor box on your driver’s license and tell your family your wishes.

**Thank You, Pamela for sharing your story with us!  What a beautiful gift that has been given. ~Breathing