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 
www.england.nhs.uk/ourwork/qual-clin-lead/lac/
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

For further information: http://www.england.nhs.uk/ourwork/qual-clin-lead/lac/

**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

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 

Care Giving For Yourself

It was in October that my husband was diagnosed with Pulmonary Fibrosis.  Looking back at the span of his diseases progression, I realize that at that initial point the impact of the disease was primarily emotional.  Physically, the only way he was diminished was by a slight cough which sounded like he was clearing his throat.  In all other ways, physically he seemed fine.  By December the following year he had passed away from this disease.  He remained active up until the two months prior to his passing, at which point fatigue seemed to overcome him and he became weaker and weaker.  

In the October of his diagnosis, I was physically fine, too.  We both were just two normal people.  Very active and seemed to have a beautiful life ahead of us.  I was his caretaker, confidant and friend.  The initial point of his being diagnosed, it was primarily emotional for me as well.  As he progressed in his illness, I progressed in my level of care for him.  Taking care of my beautiful husband has been the most profound and rewarding experience that I have ever had.  It has also been the most difficult.

Have you heard that over long periods of time spouses start to look like one another?  Or perhaps, an owner of a dog will start to take on a resemblance of their dog?  I think it is because we grow close to the souls we love.  We empathize.  If they are happy we are happy, and if they are hurt, we are hurt.  

When someone we love feels ill, we feel ill too.  If they cannot catch their breath, we feel light headed.  If they are scared of what the future holds, we are scared.  But, here is the catch....   If we are a caregiver to that person, then in that moment, we cannot just collapse, we have to swallow it down and get it together.  After all, logically, we are not the ones that are sick, right?  Furthermore, the person that you would normally run to when you are not well, cannot deal with or accept what you may be going through.  As a caretaker, it is a scary place to be to know that there is no longer anyone left to run to.

There are moments in care giving, that when the patients back is turned that tears begin to stroll down your face.  Or, when you are sitting with them and telling them words of love, that your heart feels gripped with fear and dread.  When your partner is sleeping and you listen to the rise and fall of their breath and you lay awake, sick inside.  

When a loved one passes away, people tell you that their suffering is over.  But, you are still here.  Is your suffering over?  

When you advocate for the disease, you meet others who have the illness your spouse or loved one had.  The disease that you witnessed first hand.  The patients will tell you that because you are just a caretaker that you could never understand the frustrations of having the disease first-hand.  But, you do not say anything because you do understand.  You also understand what it is also like to see it through to the full progression.  Past the point that many patients are aware of.  You swallow this down.  Meanwhile, your husband or loved one is gone.  

As I mentioned, it was in December, almost two years ago my husband passed away.  It gets cold in the winter here.  During that time, I spent most of my time in a blanket.  My primary source of socialization, sitting at my computer.  Dark circles under the eyes, but, always putting happy-faced icons at the end of my sentences.  Everyday, a struggle just to get through.  Time passed, not in sections, but by minute.  If I could just get through the next minute, and the next...  Then, something needs tending.  I tend to it.  I feel glad I did and wait for the next minute.  Then another something needs my attention, and it goes round and round.  Until, slowly I notice what needs attention before hand.  Somewhere along the line, counting time by minutes, turned into measured days and I realized that it was time to turn my attention to me.  

Eventually, I started to see the sunlight.  I almost felt guilty about that.  At first it hurt my eyes, but then it felt good on my skin.   I began to feel proud that I had made it through and continued to take care of what needed tending.  I am surviving.  I am to the point that I have realized that this is not enough.  I have realized that I am not the one who died.  I am still alive.  I still have a purpose in my life and I want to do more than just survive.  I have also realized that Pulmonary Fibrosis has made me sick.  I had forgotten myself, physically and emotionally.  As my husband became more ill, so did I.  As he began to let go of life, so did I.  When he died, I did not.

I have to Give Care to myself now.

Tid-Bits About Pulmonary Fibrosis (Part 1)

~For all the other Supermen and Wonder Women that fight for life every day~

●  Approximately 48,000 people are diagnosed each year with Pulmonary Fibrosis

●  Pulmonary Fibrosis is 100% fatal (without a lung transplant)

●  Every 13 minutes someone dies of PF.  That's roughly 111 people each day

  

●  3,323 will die of PF by the end of this September

●  Approximately 40,000 people die each year of PF

●  Pulmonary Fibrosis means literally "of the lung Scarring"

●  It is impossible for lungs to function when they are full of scars.

Written By: ~Anonymous

**  Thank You, Anonymous, for allowing me to publish the information you have compiled regarding Pulmonary Fibrosis.  Some of the information is heart-breaking to read, although for those of us who have experienced a loved one with the disease, or have it first hand, sharing information is our most powerful tool.  ~Breathing

Twisted Knots

Hi Babe, It is me.  In December it will be nearing the 2 year anniversary when you departed my arms.  Only a few months away.  I have been working along my little path and even when I can't see where it is leading, I have been sure to stop and soak in the beauty around me.  For that alone, I know you are proud of me.  Fall is now here and the leaves on the trees are changing color.  The coolness in the air surrounds.  

I have been maintaining and managing to the best of my abilities.  The house is buttoned up with the exception of one repair that I would like to make before Winter sets in.  If I can get that completed then all my homestead goals will have been fulfilled for this year.  The garden has been the best it has ever been.  It was a record year.  I think it was because I laid straw down to keep the weeds out and it worked very well to hold the moisture in for the plants.  

The river bank?  It is still the same river bank, growing as wild as ever.  Although two trees, the same ones you kept cutting down so it would not obstruct our view, came back. They were growing big!  So big, in fact, I knew it was something that I had ignored and once they began to take over, I contemplated just letting them grow.  I wondered if I should just let them grow and tried to imagine not seeing the water from the house anymore.  I thought it might be a blessing as a windbreak.  But, deep down I knew I was just justifying keeping those big weeds around because I didn't know how to remove them.  So, I made a phone call and had someone cut them and immediately was glad I did.  I vow to catch them early next Spring so that they will not grow out of control anymore.

You have really changed my life.  Given me the opportunity to see what my own capabilities are.  I am even thinking about my future.  Trying to imagine in a very real way what I would want the second half of my life to look like.  I can only see a foggy outline.  Snippets of things like me still living and taking care of our home, River-Rose.  Each year living more simply and naturally.  I realized that I only envision myself doing tasks that make me extremely happy- only have to do with the family we once had.  Now, our immediate family has dwindled as my oldest has left the nest and our youngest has just become a legitimate teen at 13 years old.  I try to imagine what the house will sound like when there is no one to call out to.  What type of thoughts will roam through my brain as I live my existence alone?  Will I be comfortable with the stillness?

I realize that you and I had an age difference and that is why we joked you were the geezer.  Still, your life ended too short from Pulmonary Fibrosis at age 50.  Which is an age that I think is still very young.  When I transfer that to being a widow at my age, it seems I have a long road to walk down in solitary.  This is not how I pictured things would be for me when you and I were healthy, before this disease came into our lives. At the same time, the idea of being alone does not cause me enough discomfort to want to be with anyone else.  To the contrary, it actually prompts me to discover how I can be more at peace with myself.  To perhaps imagine finding a different kind of joy in my journey.  And that is why I contemplate.  I realize that I must imagine what things I want to bring into my life that will fill my future days.  I cannot be complacent in a comfortable area.  If I would like my life to be a journey of joy, I cannot wait for joy to knock at my door, I have to reach out and work for it.  

Money, travel, clothing, things, may bring a little better sense of security to ones mind, but it doesn't change what lives in our mind and soul.  I have picked up and left and driven for days.  I have found the most beautiful, exciting, and serine places.  In the wrong frame of mind, none of it filled me.  I could have the ocean outside my window, sitting in a beautiful room, and still be filled with twisted knots.  

Just a thought, My Love.  Thank You for bringing me to a moment in time that I have been forced to be truly honest with myself.  Even though I have not discovered the answers, the period of discovering purpose is a gift in itself.

With All My Love....

Sounds of IPF Mini-mentary

Global Pulmonary Fibrosis Awareness Day *Labor of Love by ~Jamie Messer

Beautiful labor of love for Global Pulmonary Fibrosis Awareness Day by Jamie Messer!

Please take the time to watch! 

Love, 

~Breathing

Doodles From Grief Counseling

 I look at my spirit like a garden.  There have many days I have been cultivating my garden, and there have been times that the wind and storms have ripped it to shreds.  There have been times that I have ignored the weeds and there have been times I have been on my knees, picking each one out.  I have introduced new plants to my garden and I have learned which plants are not suited to grow there.  Loving and kind friends have suggested that I may be spending too much time on my garden alone.  I should enjoy sharing my garden with others.  

Just over a year and a half after my husband's passing from Pulmonary Fibrosis, I decided to go to a grief counseling group.  Although, I feel that my understanding of my husband's death has been fairly healthy and I can look back over the year and see the ways that I have grown as a person, I also know that it is good to push myself out of my comfort zone.  Often it is under these circumstances that I have grown the most.  

It was a very small group and ice-breakers were in order to get us acquainted.  A small envelope was handed to us and inside the envelope were many words cut into small squares.  We were told to pick one word that best described our last week.  I poured the words on the table before me and sifted through each one.  Words were spread out before me such as Anger, Isolation, Bitter, and Sad.  I searched, but could not find one nice word.  I did want to say something, maybe all my nice words fell out or was given to someone else in the group.  But, I do not like confrontation and I didn't feel like defending my standpoint, that while, Yes, I did feel some of those negative words last week, I also felt Love, Laughter, and moments of Joy. Perhaps in haste, I decided this was not where I needed to be.  It's one of those things when you just need to listen to your inner-voice. 

 I did stay the rest of the meeting and most of my time was spent with ears open, and hands on paper, doodling.  I still wanted the discussion to flow through me and to absorb what I could, when another exercise seemed quite fitting.  It was explained that grief is not just one big thing but a series of small things over a period of time.  For instance, yes, I miss my husband and learn to deal with that everyday- although why is it that when I have a problem with the plumbing, I unexpectedly break into tears and sadness for a whole day? It is because our loved ones are made up of many components and our love has many facets.  We not only miss that person, but a million tiny things that remind us of them and grief is mourning each and every one of those things individually.  

So, as I listened to this, I began to add to my doodle some of the ways I missed my husband and acknowledge that I will need to mourn these things as well....

Understanding

Love

Togetherness

Your Eyes

Holding Hands

Your Smell

Our Music

Making Love

Security

Dreams

Our Travels

Companionship

Your Hair

Annoying You

Arguments

Making Up

Talking

Laughing

Your Eyes

Partnership

Advice

Safety

Guidance

Your Coffee

Sharing

Parenting

Trust

Comfort

Our Plans

*What I miss most of all and really can't be replaced is 

Our Chemistry

Love, 

~Breathing~