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Reply by Plum1
10 Jan 2013, 3:47 PM

Dear TrueHeart,
I can hear the weariness and struggle in all your words. Yes, quantity but diminished quality. Very painful.
As my time is spent mostly with the elderly, the diminishment which affects quality of life is a constant reality. It is good that human beings seem to be blessed with a capacity for adaptation, once they can accept change. But losses are keenly painful.
My uncle, who was a professor of literature, and an avid reader all of his life, was robbed of vision as Parkinson's Disease progressed in him. Thank God for CBC radio and its excellent programs on literature. He loved listening. And it was only after his death that I learned that my cousin, who used to vsiit with him almost every morning, was reading to him a book that my uncle had asked me to order. Other elderly persons close to me who suffer from macular degeneration catch on to the "talking books" at the library, or provided by CNIB. 
I visit an elderly woman who suffers from blindness. She was so sad that she could not really see the faces of her little twin granddaughters.
And your Mom can no longer enjoy watching the activitives of her grandchildren.
It just does not seem fair! All we can do is show compassion and understanding. But do try the "talking books" - and CBC, if your Mom is not already hooked on it.

I do feel concerned about your energy. When you are in such a journey for the long haul it is so critical to pace your self as much as you can. You really sound as though you could do with some hired help if you can at all afford it.

I hope that the Palliative Care doctor will give some info, and perhaps offer some suggestions for extra help.

In the meanitime stay in touch. I am holding you in prayer that you continue to have the strength you need, And I will send along healing energy.

Love,   Plum1
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Reply by Brayden
13 Jan 2013, 2:50 AM

Dear Trueheart,

I like what the others have said to you and I too know the long hard struggle that you have been thru. You have given so much of yourself and that is probably why you would like to see a timeline on things. That can be difficult to get as the medical people can only know so much. I liken it to a weather forecast, after two or three days they call it the weather trend and not a forcast. It is their best educated guess because variable can always throw their guess off. Doctors too normally talk only in general terms. I often feel that the best person to know is the patient themselves. I have had a good number that have told me when it would be over and they were right within days. 

I too just hope that you will find the energy somehow to keep going as you appear to be getting to the final stage. We here all care deeply for you as you have shared so open and honestly with us.
You are our star. Peace,
Brayden      
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Reply by TrueHeart
02 Feb 2013, 10:42 AM

Hi Everyone,


It has been quite a while since my last post. January was a challenging month. It started off with mom being completely depressed...which we addressed with a lot of talk therapy...mostly between her and I. We did meet with a palliative doctor - who was very honest and frank with us. It was such a relief to speak with someone who gave us a dose of reality. Both mom and I appreciated the candor.

Now, let me share with you the discoveries I made about dexamethasone. The palliative doctor told us that the dex was only prolonging mom's suffering and that it was masking her symptoms and delaying the inevitable. Mom's family doc prescribed 4 mg daily back in August. Since then, we had increased the dosage by December to 8 mg daily. After our visit to the palliative doctor, mom wanted to stop the dex.  I went to work,doing my research, and discovered that there are a lot of ethical questions surrounding her decision. Some were of the opinion that dex should not be used long term and rather for pre and post op surgery. Using dex is quite like "taking extraordinary measures" to prevent death. So, once on dex, stopping it suddenly becomes like taking someone off life support. Mom had signed a DNR back in August. So, upon an emergency where death resulted, no one is to take extraordinary measures to bring her back.
So, dex is not a cure, but it is considered a treatment....which mom had refused immediately upon hearing the news of her condition. She only wanted to die naturally.
We know now that mom has Central Nervous System Primary Lymphoma - or CNSPL - and while this cancer does not spread to other parts of the body, it does invade the spinal fluid and spine. Gratefully, mom's mind has not been severely compromised by her illness. She is still of sound mind.
Taking someone off a steroid suddenly can be so very dangerous. This is because the drug has replaced the normal biological production of certain hormones. An artificial supply / process that turns off the body's natural behaviour. A sudden flip of the switch can throw the system into erratic behaviour that can be life threatening. So, the process is to ensure a gentle weaning of the drug.    

At the appointment with the palliative doctor, we were told that the cancer was in her spinal fluid now and that she has been in stage 4 since her diagnosis. Because she had developed a DVT (deep vein thrombosis - a blood clot) and PE - a pulmonary embolism - blood clots in the lungs and was on fragmin, that mom was most likely to go suddenly. She explained to us that even though she was on fragmin, she could still develop a fatal blood clot - and/or a sudden bleed triggered by a seizure. Despite having been on a therapeutic dose of anti seizure medication, mom continued to have seizures regularly. They changed as her illness progressed. Her blood levels showed excellent levels of dilantin, and the 8 mg of dex did little to prevent the seizures.  Mom never had a grandmal - but she did have tremors. At the beginning she could communicate vocally that she was having a seizure. By December, she lost the ability to speak or make any vocal sounds at all during a seizure. Now, she is having seizures without being aware of them - which cause her to collapse, or go blank suddenly for 40-60 seconds, and yesterday, I observed a violent right sided seizure that yanked her neck  to one side for about 25 seconds.
Yesterday, wheels were put in motion to do the paperwork and search for a hospice for mom's end of life. After the morning seizure that caused her to collapse, she seemed to have lost a large portion of leftsided mobility. She became a dead weight. Dad was with her - he's 80,and stressing - my sister was on the phone when mom had collapsed and she realized that my dad was huffing and puffing - that he was a wreck.
The day before, mom told me that it was time to get into a higher level of medical care because we wouldn't be able to lift her anymore. Yesterday, she told me that she feels everything changing inside of her and that she needs too much help to stay home.
I called in the nurse for an extra appointment. Upon seeing my mom, she put the wheels in motion. She called the case manager. It will take minimum three days and up to one week to get her a bed at a small 10 bed facility. Mostly for paperwork, as there is a space. Miraculously! 
She enjoyed the past 3 weeks and entertained three separate times with her hiking girlfriends and she went out with one of her girlfriends to a French group social. Her mood has been mostly light and even humourous - exept the last week. Things dramatically changed progressively all week...and as it did, mom's mood changed too - this time her mood felt more like a peaceful resignation and acceptance of her impending death. Always practical and pragmatic, mom is preparing to leave us - gently, and lovingly.
So, yes here I am at 5 am - rolled out of bed at 333 am because I couldn't sleep. Mom is with the PSW now - a woman I had the pleasure to guide to mom's condo that she couldn't find. She was in her car driving around the retirement village where mom lives...we were on the phone at least 10 minutes. For a moment, she sounded just like my dear friend who passed at the end of August. I took comfort in that moment. It felt divine. I feel like my mother is in the hands of a real Earth Angel and that she is in the best of hands. 

The journey is nearing its inevitable end....still taking it one treasured day at a time. The appointment with the palliative doctor was cathartic for mom. Things have been flowing very naturally since then. As we journey along together, we all make the necessary adjustments.      We all do the best we can with what we have. Our best changes as the tide does, and then the professionals step up and do what they do best better  than loved ones. There comes a time in this journey when all we are is mother/daughter/son/spouse/grandchild/friend 
and the care giver gloves are tucked away with a heart full of the relief that we can just be connected for what and who we really are now as the final miles of the journey is before us.

Again, let me express my gratitude for this wonderful and highly therapeutic space and to all of you here at the virtual hospice.
Love and Peace TrueHeart xo 
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Reply by NatR
02 Feb 2013, 2:17 PM

Dear Trueheart,

thank you for your inspired note this morning.  It's good to know everything you shared - so helpful to others travelling the same journey.

i sense the peace you seem to have now, concentrating on your moms comfort , relishing the times together and letting each day unfold.

The information you shared about the drugs and how complicated it is to use or not use, will be very helpful to others reading this.
It certainly was something I didn't know

caregiving and decision making for the best outcome is complicated as you said.  Thanks for taking time to share it with us all.

its good to know that you and your mom are working it all out step by step keeping comfort and quality of life front and centre.

my best wishes to you today and the coming week that both you and your mom have some quality times together 
sincerely,
NatR 
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Reply by Tian
02 Feb 2013, 4:14 PM

Dear TrueHeart

What has remained constant is that you have been a wonderful, devoted daughter. You may be the biggest factor in your mother living longer than expected with many very positive positive experiences as she was coping with terrible symptoms. However at this point I wonder if you may be overanalyzing some aspects of the situation. Dexamethasone is a version of a natural hormone with wide-ranging actions and is frequently used to ease symptoms in people with cancer and as a volunteer in a palliative care ward I have seen many patients who have been treated with it. I very much doubt that your mother's family doctor saw it as a cure or an extraordinary measure (nor would her oncologist) but prescribed it to make her more comfortable. As the palliative care doctor said it could well have masked her symptoms and delayed the inevitable. But is that really bad? It follows that in living longer her suffering was prolonged but as you have written to us so beautifully she was able to share sublime moments with friends and family including a last Christmas that you will always treasure. Would things have worked out better had your mother not taken dex and already passed away? It's likely her alarming symptoms would have become worse whenever the end approached.

But meanwhile the disease has continued to take its frightening toll and the opportunty to have a good quality of life is rapidly vanishing. Thankfully your mother will spend her final days in a hospice where providing comfort is the overriding priority. May the journey for you all be as tranquil as possible. Through it all you have been a shining star but we have seen that you come by that honestly through your mother.

Peace

Tian 
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Reply by Brayden
02 Feb 2013, 6:49 PM

Dear Trueheart,

I cannot help but feel the journey that you have been on since you first posted on Sept. 27th. I am sure that a number of us feel like we have been walking closely with you because of the open and honest feelings you have been posting. You have and are one caring and courageous woman. You will always be able to reflect on this journey and take comfort in the fact that you gave it all you got. There is nothing anyone could or should question you on. It will sure help later in your grieving process. I hope that you mother gets into a paliative ward soon and that will hopefully give you more peace of mind. Thank-you so much for being so kind to us and keeping us all in the picture in the midst of your hectic agenda.  Please keep in touch.
Most sincerely,

Brayden   
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Reply by Plum1
19 Feb 2013, 4:49 PM

Dear Trueheart,

Just to let you know that my heart is with you on this day, wondering how your heart is today. You have been so open and generous in sharing with us here. February is the month we think of hearts and love. Your heart has been stretched in ways you could never have imagined. I have great admiration for you, and beleive I have been enriched by your sharing.

Keep in touch when and if if is helpful for you. We will be here!

All love and prayer for whatever your needs are at this time.
Plum1

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19 Mar 2013, 7:15 PM

Dearest Trueheart,

We haven't heard from you in such a long time. We continue to think about you and send you peace and strength for everything that you are facing. I hope you can feel our support when you need it most.

With love from,
Colleen and everyone in the Virtual Hospice community.
 
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Reply by TrueHeart
20 Mar 2013, 11:51 AM

Good morning Colleen and thank you for the nudge. Greetings to all.

Mom passed away on the 1st of March. She died surrounded by her three children, peacefully and painlessly.
Indeed, it has been awhile since my last post here. Things got pretty intense as we rolled in 2013. By the beginning of February, mom's mobility became much more of a concern and challenge. With her left side so compromised, she became (half) a dead weight. My dad, who had been doing the night shift with her, was no longer able to manage her care.   The decision to bring her to hospice became evident to us all, but in the end, it was mom's decision. 
It is an emotional struggle to revisit the events of the hospice experience at this moment, but let's just say it was a mixed bag of frustration and gratitude. For the most part, the staff was exemplary and treated mom with compassionate care - however, the administration was a nightmare, full of contradictions and way too much ego.   When she was 'actively dying', I realized how difficult the end would have been if we had attempted to let her stay home until the end.
On the day before she died, I arrived at the hospice around 12:30 in the afternoon. My dad had spent the morning there and a priest came to visit mom and give her the last rights. My sister had spoken with her around noon. I arrived to a closed door, and gently slipped in and approached her bed. She looked at me and said "I'm busy"...she was on the bed pan. I smiled and said, ok mom, I will give you a minute, to which she replied "give me five". I stepped out of her room and went and sat in the chapel. I gave her ten minutes. During that time, she finished with the bed pan, the personal support workers had removed it and cleaned her up. When I came back in however, she was in full seizure - so I called the nurse. Mom slipped into a semi comatose state and was no longer able to swallow, or speak. Her breathing changed to a horrid rattle which signaled that she was actively dying.
I called the family and within hours most of us were there. Several of us spent the night at hospice, by her side. The next morning, her condition was the same. We took turns going home to eat and shower and then my brother, my sister and I decided to spend the night again.
I got there and had some time alone with her. I took the moment to express my heart to her, because even though she could no longer talk, she could hear me. I told her what an honour and privilige it had been to spend the past year caring for her, getting to know her more deeply and how grateful I was for her. I thanked her for being such a great mom, amazing woman and how very much I loved her. By this time, her right side was as limp as her left side, and she could no longer squeeze my hand to let me know that she heard me, but in my heart, I know that she did.
 For the next couple of hours, it was just me and her and the staff. My brother arrived first, then my sister got there around 9:15 pm. I was in the room with mom, and they were settling in on the cozy chairs in the living room....just around the corner from mom's room. Just after 9:30, my mom's breathing changed. I hit the call button, and shouted to my siblings - they heard the urgency in my voice and came running. She took her last breath about twenty minutes later.
:-(    
Phone calls were made and the rest of the family made their way to the hospice to be together. By midnight, she was transported to the funeral home and we quickly packed up her things and vacated the hospice.

We celebrated mom's life on the 9th of March. It was a cherished experience. Between her death and her celebration of life, we teamed up and organized photos for a memorial CD, made calls and visits to family, friends and acquaintances to let them know.   
On Sunday, the family came around her place and gathered up some of her things to remember her by. The whole process has been amicable and peaceful....because I am the one with the most freedom of time right now, I'm organizing and packing up,making arrangements to disperse, throw away and donate all her things. My sister is taking care of the legal and financial details.
 We hope to be finished by the end of this month and we will consecrate her ashes on the 6th of April.
We began to grieve for mom the moment she was diagnosed as terminal, but the grief seems to be just beginning afterall.

Thank you all who supported this journey with me. My gratitude is infinite. May you all be blessed with God's grace.

Sincerely, TrueHeart xoxo       
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20 Mar 2013, 12:05 PM

Dear Trueheart,

My sincere condolences. Thank you for taking the time to share the events leading up to your mom's passing. 

There are multiple stages of the grief process. As you mentioned anticipatory grief starts at the time of diagnosis. Now you enter a new phase of emotions that will meander, come and go like waves and greet you unexpectedly with pain and comfort. I hope that you know you are not alone during this time. Your friends here in the Virtual Hospice community are at your side and ready to listen any time you wish to share.

I send you a virtual hug, peace and strength.
Colleen 
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