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Reply by Marymary
08 Dec 2016, 6:39 PM

Hi Cherel - how are things?  I hope this message finds that things are bit lighter in regards to outside sources.  

Thinking of you and if and when you have a moment if you could give a quick message and let us all know how things are going for you.

My ex went to the dr yesterday (ENT) and didn't tell me til the night before and in the morning said well I am not coming home after appointment so no you can't come with me.  My son also had an ultrasound appointment at the same time, I landed up NOT going to either.  

But I did write out a list of questions for the doctor and told him he better ask him.  

I haven't gone to any of his appointments since March of this year, I just got to the point because they were not saying anything nor him saying anything to them.  I swear he told them no talking too much details in front of Mary, because I would ask a question and they would look at him first and then basically talk around the question, so yes I just was fed up, they were not saying anything in front of me.  

But since I hadn't gone in so long I did want to go and see what was up.  NO difference whatsoever, throat still inflamed, still like ground round, his thyroid will always be that way period due to all being burned during readiation as dr states.  No progress,  not better not worse, they are just monitoring him now.  So he sees ENT then 2 months later cancer dr then inbetween those times he sees his dr and the thyroid dr.  So every month he has appointments with dr's just looking at him saying how you feeling.  ya ok whatever

I get it's inoperable and nothing can be done now but its just frustrating.  His son and I noticed in law few weeks he is coughing a lot more in the morning when he gets up and especially after he eats breakfast.  He says no it's no different he's always coughed and NO we are imagining it and dr said that was normal 

He loses his temper alot, always criping and bitching about something.  He forgets things so much and then gets PO'd at himself well we are here so we hear and live with the constant criping.  He has to stay busy, he has to do something or gets even bitchier if that makes sense.  Told him to take up a hobby he's like what - what the hell can I do, tell me.  So I gave up on that part.  He likes watching football and hockey, so he does that but bitches through out that too. 

One bonus thing is he enjoys xmas decorating so that has been a uplifting aspect which is good.  

But one day at a time - today is a good day so far.  Hope you send a quick message to us
Talk to you later Hugs mary 
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Reply by Cherel33
09 Dec 2016, 11:37 AM

Dear Mary,

Thanks for asking about our situation. Life is difficult and I run the gamut from anger to sadness. Anger for the doctors’ lack of compassion, anger for my husband Dave’s denial and sadness that we’re coming to the end. I am frustrated with our health system. Frustrated that there isn’t one medical person overseeing Dave with his various co-morbidities. Untrained I have overseen his care. I believe a lot of the responsibility lies with his denial. I am his personal care giver. I am exhausted and becoming spent emotionally.

 


Last week I took Dave for a CT scan at the hospital and managed to convince him to visit Emerge for his incredibly swollen legs with weeping sores due to the advanced peripheral vascular disease. Nine hours after being at the hospital with testing and difficulties in finding a bed we finally saw the doctor. Knowing in essence there was nothing to be done, I had thought maybe I could get care for him. Maybe he could be transitioned into some type of Hospice care. After wheeling Dave into the care unit, he saw the doctor. He refused to stay and just requested someone to fix his legs. Given pain medication, I brought him home.


With all of the doctors for his Bladder Cancer, Chronic Kidney Disease and Vascular Disease, not once have we been asked about palliative care.


In the week since, the kids have been phoning and visiting. Our oldest will be flying in next week from the Oil Sands, hoping and praying she has the opportunity to visit one last time.


In the last few days, when he has been relatively lucid he has spoken individually to me and the kids saying, he doesn’t think he’ll be here for Christmas.


He is rapidly declining. I attempted to speak with someone from a Hospice facility close by, looking for help. I had thought if we became affiliated with hospice, when he goes he could be pronounced here rather than having to call 911. There is no DNR in place. The offer was for someone to come in and speak to Dave about his legs which may have led to hospice. Unfortunately, Dave doesn’t want someone to come in, nor does he want to leave here. Although, he hasn’t said it, he wants to die here in our home.


After 45 years with this man, I will do this for him.

Cherel 

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Reply by Cherel33
22 Dec 2016, 12:03 PM

Hello All,

With no medical person overseeing my husband’s care, I have managed to refer him to Community Care Access Centre (CCAC). They have stepped up to the plate and have been a tremendous help providing; daily nursing care, an occupational therapist for medical equipment, several hours of personal care and a palliative care coordinator.

Going through the list of Dave’s associated doctors, with a bit of arm twisting of the urologist, I received a referral for an absolutely wonderful palliative care doctor. With a DNR in place and access 24/7 to the home visiting doctor my husband’s goal of dying at home is coming to fruition.

There will be no loud clamoring of an ambulance, no heroic efforts by the paramedics and no laying in a hospital bed in some secluded hallway.

He will pass in his own home surrounded by family.


 


Cherel

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Reply by Nouce
22 Dec 2016, 12:45 PM

Well done, Cheryl! You are a woman of valor.

Nouce 
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Reply by Marymary
28 Dec 2016, 8:05 PM

Hi CHERYL - Thank god for the little things eh.  Good job on your part, I so get it I do.

I've had to do same getting tests, wouldn't have happened if it were not for me telling dr's to do so., weird so weird they put everything to the cancer & don't look into anythiong else - they just say its normal after treatment - ya ok whatever just do the tests for thyroid an kidney.  Ya sure enough he's got problems with both - drives me nuts.

He's as good as he will ever get so they say now, throat is rawm inflamed, like ground round they say.  The polyps at back of nostrils are smaller now then they were in sept. not that they tested for cancer they just let it play out.  oh well....now its weight that is a major problem.  

But we had a real great xmas & it was just so relaxing and fun an quality time.

Hope you found some time in there for yourself Cheryl.   Thanks for sharing an good job for you stepping up an finding a solution to your situation.  Take care
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Reply by Cherel33
29 Dec 2016, 3:32 PM

Hi Mary,

I'm really glad you had a good Christmas, treasure these moments. Good for you for pushing the doctors. They are not infallible. They don't know your husband like you do.

Throughout the last two incredibly difficult years, I have come to the realization you are responsible for your health and you chose to help your loved ones. You choose to make the decisions and you choose to follow through. I chose to accept the responsibility for my husband’s health. He chose to remain in denial and to place his care in my hands.

 


Would I do this again if I had a choice?  I don't know. To fly in the face of such negativity, to have my strength chipped away, to run the continual gamut from anger to sadness, I just don't know. Is it love? Is it loyalty? What is it? Why did I accept this responsibility?


I am physically and emotionally exhausted.


I have him set up in a hospital bed in the living room facing a large picture window to the street, with a television to one side and the Christmas tree to the other. I have him hooked up to a pain pump, oxygen generator and a catheter.


He is in the active phase of dying. His organs are shutting down. I spent last night sitting by his side, unable to hold his pain filled hand, lightly touching, watching his labored breathing, the sweat beading on his brow and the facial muscles gradually relaxing.


The DNR and Death at Home papers are pinned to the refrigerator right beside his palliative care doctor’s 24/7 pager number.


Now we wait……  

Cherel 



 
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Reply by Marymary
29 Dec 2016, 8:00 PM

cherel - love your words well how you exoress them - I am sure you are not the olky one who feels the same.  

As for th exhaustion, hope you can take the time to go for walks an a nap during days, someone coming in an helping you in that way.  For you - for your own sanity (lack of better word sorry) a nurse or aide or relative/friends can sit with him while you take your time for you.  I pray that you do.  I hope you realize you do NOT have to do it all on your own ok your choice may be to do that but I hope in all hopes you do not do all on own, like I say for your state of mind, for tiredness etc., ok

Sorry not telling you what to do just sharing my hopes for you.  You know what you wrote " now we wait" made me think of....

How ironic, you wait 9 months for your baby to be born - birth...hmmm?

I am sending you positive energy your way an wish I could help you out some way I do, but sharing not only helps us but in a sense you too, by releasing, letting go - you know.

Big hugs to you 
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Reply by Cherel33
31 Dec 2016, 12:46 PM

Hi Mary,

Thanks for your kind words. Dave passed the night of December 29th at home as he wanted surrounded by family. He remained in denial almost to the end. Christmas morning as we were holding hands looking at the Christmas tree, I singing along and him attempting to tap his toes he asked me to let him die. I told him, “I couldn’t let him go today it was Christmas morning”. The next morning, he said to me he had to get ready and go. I said, okay if you want to go, you can and know that I love you”.

I am so incredibly thankful that I had the fortitude to make all of the arrangements before his passing from meeting with the funeral director and minister to choosing and designing the headstone, the memorial card and DVD.

Everything fell into place from calling the doctor to come and pronounce to having him picked up by the funeral home.

Yesterday was spent finalizing the arrangements and sharing the news with family and friends. Last night was the first time in a long time, I slept for 7 solid hours. I am sad, but relieved his struggles are finally over. I helped a loved one pass in comfort and I found an incredible wall of strength in myself.

Would I do this again? I don’t know. I just don’t know….


 


Cherel

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Reply by Marymary
02 Jan 2017, 7:35 PM

Cherel - thank you for sharing with us all.  I am sorry for your loss and what a gift you gave him the most wonderful gift anyone could ask for, love and time & caring and you gave him his self respect and what he wanted to be at home.  what a great wonderful person you are Cherel.  Not too many out there like you.

Hopefully you never have to make the choice again (I hope) but your body is now in a state of rest so yes do catch up on all the sleep you need.  

As for others, worrrying about you and asking how you doing due to grieving/mourning just let them know you are doing and if you need anything you will ask.  For now you know to ask for help and you of all people will NOT be in denial for you know how that feels.  You of all people know - denial is not the answer.  Maybe that is the lesson we all have to realize?  Not jusst you but others as well.  

Be safe, get rest and allow whatever emotions come to come and just be.  Hugs to you
 
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Reply by Nouce
02 Jan 2017, 8:01 PM

Dear Cherel,


I'm sorry for your loss, and so moved and inspired by your account. I pray for continuing rest for you even as you grieve


 


Nouce

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