Hospice Day 11


 

Last night was an absolute night out of hell.

The subcutaneous syringe driver was halted as Vic’s tissue is so bad.  Vic is now on 100mg Durogesic patches and morphine syrup.  Initially it appeared to be an okay solution.  Then the nausea started…. The pain steadily increased to absolute intolerable levels by last night.

Yesterday morning Vic was great!  She obviously still has some of the intravenous morphine in her system.  (I also gave her extra morphine syrup as a precaution).  She went to breakfast with her friend Angela and had a wonderful time.  She glowed when she got back.  Gill, my BFF, popped in for a cup of tea and was amazed (once again) at how well Vic was looking.  Madam was even wearing a shoe with a little heel (which we made her take off).

In the afternoon Vic started looking grim.  She was nauseous and suffering from abdominal cramping.  Her tummy was distending.

By 10pm last night Vicky was sobbing with pain.  By 11pm she was vomiting uncontrollably.  She has severe intestinal pain and I believe she fractured a vertebra with the vomiting.

This morning I had an early meeting.  Half an hour into the meeting Vic phoned sobbing uncontrollably.  I was unable to hear what she was saying through her sobs.  I just said “Baby, I am on my way…”

When I arrived at home Sr Ciza from Hospice was here.  She had given Vic a morphine injection and an additional 25mg Durogesic patch.  Vic was already looking so much better.  Ciza encouraged me to get a night nurse to assist me… She had written a motivational letter to the medical aid without my knowledge.  I don’t think I am ready for that yet.

Whilst she was vomiting last night I thought of how quickly she “crashes” and how the good times have almost disappeared.  Yesterday morning Angela actually looked at me with a question mark in her eyes when Vic said she wanted to go out for breakfast.  I nodded my “consent”.  You see I had just read a comment from an incredible brave lady.

my husband has expressed the same concerns you have over your daughter pushing too hard when she does feel better. it is so important to me when i do have a good day to get out or make dinner, even doing laundry makes me happy. it is a reminder that i am still me. while i see your point and his, i know how vic feels and know that for me it is worth the price i pay afterward to have that time where i feel like the old me. the me before.  My heart goes out to you all and say a little prayer for your continued wisdom and love. http://thedrsays.org/” 

Today I would also like to quote my “mentor into the world of pain” Tracy Rydzy   http://ohwhatapain.wordpress.com/author/ohwhatapain

The concept of illness as a way of telling you to slow down is frustrating, as I have always lived life in the proverbial fast lane.  Since my first surgery, my life has basically come to a screeching halt.  Any living I do is now in the slow lane, sometimes I never even make it off the shoulder.  I think one of the most difficult aspects of pain, especially during a flare, is the comorbid (I have to use my expensive Master’s Degree vocabulary sometimes) depression and mood swings. 

It’s hard to deal with the slow down.  I mean, generally, this is something that comes with age and is a natural part of life, but when it happens at 33, how the heck do you reconcile that?  Before “all this” I felt so strong.  I felt like I could take on the world.  I used to be busy everyday, all day and the craziness of my schedule was like a high.  Now, I have maybe a quarter of that activity, some days, I have none.  The worst part about slowing down is that the pain slows down my body, but not my mind (thankfully), so in my head I still feel like the woman who can go all day, do it all, run around all day and still have energy left to cook dinner and clean the house.  Nowadays I get up at 1030am on a good day, workout and do maybe one chore, and by the time I am done I want to cry from pain and exhaustion.  But I am still me.  I refuse to let the pain change who I am.

I still feel like I can do it all, but I can’t. The constant drive to push and do more is, at times, a gift and a curse.  I still push  myself to do more, even if it comes with the cost of a day in bed.  When it comes to physical therapy (and the accompanying weight loss), I know that I push myself too far, too often.  That part of my brain that refuses to accept this “new normal” can’t give up certain things.  One thing I can do is physical therapy, so I will do it as hard as I can and push myself, regardless of the cost to my body.  A couple of weeks ago I hurt my back (more) while driving and the surgical nurse, who knows me well by this point, actually said, “I tell most patients to slow down for a little while, but I won’t bother telling you that, I know you won’t.”

Sometimes the slow down causes resentment.  I get angry that those around me have a life and are busy and that adds to the mood swings and depression.  The weekends are the hardest because I want to do so much more than I realistically can, yet I watch friends and family run from event to event with no need to stop and rest.  For me, a trip to Wal-mart requires a rest.

Flares do bring up an interesting realization, though.  Until things get as bad as they are right now, I didn’t realize that I was in less pain before.  So, in essence, flares tell your body to slow down and take it easy, but at the same time, for me at least, it takes something bad to make me realize that before this, I was feeling a little better, at least by comparison.  Now if only I could return to feeling like crap instead of complete crap…

So, the bottom line is, what do you do when life slows you down?  http://ohwhatapain.wordpress.com/2012/09/26/flares

I wish I had understood Vic’s pain-filled world earlier.  I am so sorry for getting angry with her for trying to live.  I wish we had more time.

Thank you God! 20.7.2012


Thank you God! 20.7.2012.

Thank you God! 20.7.2012


Vic and her big sister Esther

It was with fear and trepidation that I gave Vic her medication last night.  Esther, (Vic’s big sister and a pharmacist) asked me whether the Jurnista replaced the morphine and was just a little surprised that it was in addition to the Morphine, Neurontin, Degrenol and Stilpayne.   My research really scared me yet strangely I was at peace.

By 24:00 Vic felt no difference and her pain was at a solid 9.  By 02:00 her pain was a little easier.  Vic had a fairly good night.  But she is having a very good day!!!  The Jurnista appears to be working!  Vic rested well this morning and went out for coffee with Tracey!  How absolutely amazing is that!

Last Sunday, Frik, a Christian colleague phoned me after church and asked me to give Vic a message.  “Please tell Vicky that God wants me to tell her that He loves her”…   She was too ill and I only told her on Tuesday.  I missed the Tuesday Pain Clinic appointment… On Thursday the Pain Clinic doctor is a wonderful, compassionate, young Muslim man who showed mercy and compassion …

My faith has often wavered over the past ten years.  Not in God but in a God of Mercy.  The actions of the church, Christians, doctors, nursing staff, radiologists, Hospice, family and friends, mostly reflected a cold, loveless society that does not begin to understand what compassion means

When we first received Vic’s death sentence there was an absolute outpouring of love.  But I suppose she did not die soon enough and people slowly and discreetly disappeared out of our lives.  My blog is three months old and most of you too may get tired of the waiting game and stop reading it and disappear into cyberspace.  Well, this time you cannot hurt us because you are faceless.

I am digressing.  This week we were reminded that there are still angels around.   A compassionate man who prays for pain relief of a young woman he has never met, a doctor who prescribes palliative care medication…  The Jurnista could hasten Vic’s imminent demise but I don’t care.  I would rather she spend one pain free day with her boys and family than a lifetime in the pain that she lives with.

Many people have left wonderful caring messages on my email, comments on the blog and Facebook.  Thank you!  It really does mean a lot to us.   Vic does not read my blog neither do her boys.  But Vic has truly appreciated the contact some of her old school friends have made.  As I said before, dying is a lonely business!

But today we celebrate the wonderful new drug!  I thank God for sending angels along our way.  I thank God for His message through Frik, when I was at the lowest low in my life!!  I thank God for Dr Jaffer Hussain!  I thank God for your messages of encouragement and above all I thank God for Vic’s good day!  Thank you, thank you, thank you God!  Even if it is only one good day!

I am dying 9.7.2012


Vic and JD. (JD = Jared’s Dog)

It is 20:00 and Vic has been fed, changed, powdered and medicated.  She screamed with pain when I changed her.  Seeing my child sick and in pain, every day of her life , kills me.  I am dying, painfully slowly from my child’s pain.

I don’t know how much longer I can handle this.  The chronic pain I am used to but this new pain is pushing all of us over the edge.

Esther called today and wants Danie and I to go to a Spa, close by, and she and Tracey will take turns in looking after Vic…  How nice is that!!  But I cannot.  I cannot leave Vic now.  Nobody knows her body the way I do.   It is too big a responsibility to hand over to anyone.    She needs lots of personal help.  Vic needs pain meds’ every four hours, day and night.  If she misses med’s she breaks through her pain levels and then it is disastrous.  What if she needs help during the night as she so often does?  What if she vomits and needs me?  No can do!!  I cannot desert Vic.  Until she breathes her last breath I will be by her side.  No matter how long it takes.

Many years ago I promised Vic that I would not let her die alone.

When Jesus was praying  in Gethsemane his disciples fell asleep on Him.  I am so scared that I will fall asleep on Vic in her final hour.  I don’t think Vic is near the end.  I have been around dying people enough to know the signs.  But she needs me now.

Chronic Illness versus Terminal Illness


Chronic Illness versus Terminal Illness.

Who is taking care of the caregiver? 5.7.2012


Who is taking care of the caregiver? 5.7.2012.

Who is taking care of the caregiver? 5.7.2012


When my Dad was ill with Alzheimer’s, I subscribed to two forums/support groups.  I suppose I am not good at letting go because I have not left the groups despite the fact that my dad lost his fight against AD on the 20th of May 2011.  On the other hand Alzheimer’s is a terminal illness and there is a lot of synergy between my Dad and Vicky’s journeys.  I don’t think I would have gotten through my Dad’s journey if it had not been for the Caring.com group.  http://www.caring.com/home-care.  The practical advice of caring for an AD patient was of immeasurable help.  The members support helped us as a family in understanding the destruction of Alzheimer’s and recognizing the stages of the disease.

So when I received the latest post: “Who is Taking Care of the Caregiver While the Caregiver is Taking Care?” written By Carol Blackwell Alzheimer’s Reading Room, I was delighted.  I am in such a depression and totally at a lost as how to get out of it. http://www.alzheimersreadingroom.com/2010/05/whos-taking-care-of-caregiver-while.html

I just knew there would be solid, practical advice in the article.

Carol Blackwell’s opening question is: “Are you taking care of yourself? You can’t be there for them if you aren’t there for ‘you.’ Your mood and stress affects their mood. It surely isn’t easy and life is sometimes stressful and difficult. Here are some things that helped me—you can decide if they will work for you.”

Exercise

Carol Blackwell wrote “I know you may be thinking you have no time to exercise because you are so busy taking care of your loved one and too tired at the end of the day. I say, that is exactly why we need to exercise.”

Right on Carol.  I don’t have time.  My days are very long and I don’t get a lot of off-time.  Last year Danie and I went for a walk every night.  Sometimes the boys joined us.  It was great and I miss it.  But I have decided that I will start exercising today!

Volunteer for service to others.
Carol Blackwell wrote:  “I imagine you are now thinking I am really weird. How can we find time to work for others when we are struggling ourselves? For me, initially, I found it was easy to sit in the house and feel sorry for us. We didn’t sign up for this disease invading our lives, we had just had gotten to the point where we could be free from work constraints, etc. Etc. Unfortunately, sitting in the house feeling sorry for us didn’t help much. It wasn’t fun and served no purpose except to make me crabby and Bob depressed. No one wants to be around crabby people.”

Carol you are weird.  I don’t have time to sit and do anything.  I have a career, a household to run, two grandsons to fetch and carry, Vic to take care of…  For many years I was very involved in working with the less fortunate.  I however believe that in the Chinese Proverb “Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime.”  Done and dusted.  One day I would love to do some community work again but for the time being I have to concentrate on my family and their survival.  Selfish – maybe…  For now that is the way it has to be.

Do things you enjoy—you deserve it. 
Carol Blackburn wrote:  “What do you find fun and what gives you pleasure? It is different for all of us. I enjoy Wii games—I love the Wii Fitness Plus activities. They are fun. “

Tick.  I love my Children and grandchildren.  I love the patter of little children’s feet in the passages of our home, the sound of children’s laughter, and their little arms around my neck.  I desperately miss my UK grandchildren.  I am permanently miserable when I think of them.  I miss them with every fiber of my body.  Sometimes I am so weepy that I cannot even Skype with them.

I am so happy that Lanie and Tom have moved to Johannesburg.  Now we see them and the girls on a regular basis.  We spend a lot of quality time together.

Yuri, our youngest grandson asks his Mom whether he can’t come visit his Oumie every day before school…

Liza (the youngest daughter) and her husband have finished sailing around the world.  I look forward to flying down to Cape Town to visit with them.  As soon as Vic is able to cope without me we will fly off…

Vic finds the noise a little distressing.  But the little ones know Aunty Vic is ill and are so good!

Carol is right.   I enjoy having the grandchildren around and I deserve to have my grandchildren around me.  Grandchildren are the joy of my life!  And I love playing Cityville on Facebook.

Consider meditation/yoga.
Carol wrote:  “Research has found that taking time to meditate and to engage in yoga is beneficial in reducing stress.”

Maybe one day when I have time… and the energy.

Don’t be a martyr.
Carol wrote:  “Martyrs may be noble, but they really aren’t much fun. You can’t do it all and you shouldn’t have to. Find help if you need it.  Are you in a support group? Check the Alzheimer’s Association link to fine one near you. Join it—it will help to find others who are going through what you are. “

“Is there someone who can come in for a few hours and let you take a break? Someone from church?  A friend? There are people who would love to help us, but we don’t ask. Ask. You owe it to yourself and your loved ones!”

My dearest friend, Gillian, wrote:”I would like to half your work and cares.  Put you in a bed for sleep therapy.  But I know you won’t trust a soul with your family”.  Few people know me as well as Gillian does.  I cannot leave Vic.  There is that beautiful John Lennon song “He ain’t heavy, he’s my brother”.  Vic ain’t heavy she is my baby.

I am trying to get Hospice involved.  Danie does help a lot and so do the boys.  Esther bathed Vic on Tuesday whilst I was at a meeting.  The church and I deserted one another some time back.  I don’t have many friends.

People have their own lives.  We live in a world where we don’t have time for other people’s problems.

Only a mother who has watched her child suffer will understand the despair of another mother.  Will understand how difficult it is to face every day, the depth of despair when you cradle your vomiting child in your arms….to say “Just one more hour baby” when she begs you for pain medication…

Smile or laugh each day.
Carol Blackwell wrote:  

We do.  Today I watched Rango with the boys.  It was so funny.

Cut yourself some slack.
The wise Carol Blackwell wrote:  “Everyone has ‘blue’ days. It’s OK to have a ‘pity party’ once in a while. It just doesn’t help to let those days happen too frequently. Also, don’t beat yourself up. We can’t always be calm, patient, understanding and saint-like. We are all just doing the best we can. Wallowing in guilt for occasional impatience won’t help either.”

This week I am truly wallowing in self-pity.  I have been guilty of impatience, I have lacked understanding.  I am petrified that Vic’s pain and suffering will continue for many more years.  It is strange that Vic is having a better week than she has had in three months.  As Esther said, her eyes are bright and she has mobilised pretty well.  She is less tired… What if this vicious cycle of pain and suffering continues?

Don’t lose hope.
Carol Blackwell wrote:  “There IS a cure for this awful disease. Out there—somewhere, someone is working on it. We just don’t know it yet. It will come. Keep the faith, baby!”

Just as there is no cure for Alzheimer’s at this stage there is no cure for Osteogenesis Imperfecta.  But there may just be a cure for the adhesions that I believe will ultimately cause a fatal obstruction.  Today I found a website where a doctor who claims great success with the treatment of frozen abdomens.  On the surface it seems very positive.  http://www.prweb.com/releases/2012/5/prweb9432209.htm

Anyone who has ever wrestled with God can understand the bargaining prayer. I have bargained with God all of Vic’s life.  If there is a cure I will do this or that…. For MANY years I have put the Church and God ahead of Vic and my family and yet all my love and commitment has resulted in further pain and suffering.  I know this paragraph will result in many emails or comments but I ask of you “Do not judge me if you have not walked ten miles in my moccasins!”

So for today and maybe the rest of the week I will hold onto my new hope.  “Hope removes the blinders of fear and despair. Hope opens up our minds and allows us to think positive under dire circumstances.”  Until I receive a reply to my enquiries…

To all my friends, cyber friends and family thank you for your support and love!  Yesterday I considered stopping the blog as it has opened up fears that I have suppressed for so many years. I however think it is something I must do – for myself.