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checking in during holidays

checking in during holidays

Posted by Vox on Dec 31, 2019 7:14 am

Hi
I’m just checking in.  frankly l don’t remember what I have posted and what I haven’t posted so please forgive me if I repeat myself

Its almost 7am. We are at our country home. We have family and friends who live here and have been spending time with them. Hubby needs in his own way, say good bye. There was nasty weather here for the last few days, which allows me to do a lot of cooking and baking... I love to cook.  So, there is always leftovers for when people drop in.
Hubby has been in really good spirits, playing pool downstairs, watching the raptors and eating!!!
I have a nephew (12 years old and has autism) staying for a sleep over.  He can be very demanding which sometimes gets on hubby’s nerves, but for me, he is a good distraction (I’m sorry if I offend anyone by that statement) my nephew and I are very close and have always spent a lot of time together when we are here.  He likes to give hugs and I need them, lots and lots of them – so I try to balance hubby and nephews needs equally.
It funny thou, I cry on a dime.  I can be thinking of something, a song playing, or a memory and the tears come – not for long, maybe a minute or two.
I don’t want this holiday season to end – there have been no doctors app’ts, no visits to hospitals etc.  but I know that starting next week reality once again will slap us in the face.
Hubby talks about his feelings but only in tiny spurts, maybe a sentence or two, then changes the subject. I never have time to turn on my phone recorder to record what he says... but I do try to remember it and keep it in a journal that I am keeping.
Its new years eve day, I am hoping that lots of people will be here tonight.  I also hope to have a campfire under the stars with music playing and making s ’mores with the kids and hey the adults too.
I want to say happy new year, but it won’t be a happy new year.  I struggle with hubby’s health, I go in a check to see if he is still breathing, or is he warm enough, is he hungry…but I try not to smother him, although as I have said from the beginning I just want to lay down beside him forever.
He doesn’t want to sleep.  But his disease cause’s extreme tiredness.  The nurse came in last week… and I am the type of person who asks lots of questions – I want to know the who what where when and why of this disease.  Hubby ha started the process of MAID as I had posted a bit ago.  But you see I thought that the only reason he would go to that hospital was to have this procedure – so I asked the nurse where does hubby go when I can no longer look after him, or he decides that he doesn’t want to be at home….. I thought, he would go to a hospice or something, and then if he wants MAID he would be transferred to the hospital. But that is incorrect apparently.  When its time for hubby to leave the home he will go to the hospital.  So my point is I didn’t know this and asked the nurse who explained it… but then she said…. She doesn’t want any more conversation of his end of life…. WTF… if I don’t ask questions to her.. then who the hell am I to ask them too.  I have to tell you that comment really pissed me off, and I will probably address it the next time we see her.
We also met the palliative dr.  hubby likes him, but again I had to tell him that I had difficulties with his practice or lack there of – of not being able to perform MAIDs.  He openly admitted to us that although he believed that it should be the person’s choice, - he wasn’t emotionally able to perform the procedure even if he was allowed.
I don’t get it… but that is life.
Anyway I need to start making breakfast for when people start to wake up.

Enjoy yourselves tonight, have fun, make memories and be safe

Vox
 

Re: checking in during holidays

Posted by Brighty on Dec 31, 2019 2:14 pm

Vox‍  thank you for checking  in with us.    I'm glad you are with your family  at your country  home and get to share some special  moments  and make memories .    Enjoy every minute  of it .  You certainly  deserve it.     Live in the moment  for now,  .. the break from hospitals and  doctors.   when the holidays are over and reality sinks in, we will be here to support you every step of the way.   You won't have to go through  this alone.     Keep us posted.    Log in whenever  you need.     Let us know both the happy and the sad of your experiences.     We are here to listen to both.   
Help is out there. All you have to do is reach out.

Re: checking in during holidays

Posted by Cynthia Mac on Jan 1, 2020 9:11 am

Vox‍ What a lovely update! With the exception of the nurse, it sounds as though you have found some peace in all that is going on in your world.

It sounds as though you are experiencing some anticipatory grief, when you say you cry at the drop of a hat, but it might also be some nostalgia or melancholy, which are also apt to creep in at this point.

One of my best friends lost her son to cancer last month. On one of my check-ins with her toward the end stages of his disease (around the time he went to hospice), she said, “I know he is at peace with this now, and that has made it a little easier for me to be at peace with it.” From what you’ve written, your husband is dealing with his situation a little differently these days, and it seems to be reflected in you, too.

Thank you for checking in. I’ll keep you in my thoughts.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: checking in during holidays

Posted by Elsie13 on Jan 1, 2020 5:53 pm

Vox‍ , I hope I understand this correctly - your husband has started officially the process to find out if he's eligible for MAID? I don't really know much about this, except that it is legal in Canada, and health professionals who don't or won't do it, are required to give you a referral.  In your case, I think you and your husband likely need to follow up with whoever you sent the MAID application to. 
https://www.dyingwithdignity.ca/get_the_facts_assisted_dying_law_in_canada#providers

"Are doctors and nurse practitioners able to refuse to participate in MAID?

Bill C-14 does not compel physicians or nurse practitioners to assist a patient in dying or to refer a patient to another medical practitioner. However, a number of provincial regulatory authorities have issued guidelines that strongly encourage medical practitioners who are unwilling or unable to provide MAID to refer their patients to other institutions or providers. Others require a transfer of care or referral. In Ontario, for example, objecting providers must make an “effective referral” to an available, accessible physician or agency that is willing to facilitate a request for assisted dying."

In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: checking in during holidays

Posted by Essjay on Jan 2, 2020 2:33 pm

Hi Vox‍ I know in Manitoba there is a dedicated MAID team, so I checked out Ontario services looking for similar...

http://health.gov.on.ca/en/pro/programs/maid/#accessing

Looks like you have a MAID Care Coordination Service, and so I would encourage you and your husband to reach out to them for guidance. You are clearly being turned around in circles by the nursing staff and your palliative care doctor, but hopefully this team can help you through the process and making the right decisions for you.

Your time at the cottage sounds wonderful - full of pace and love, and just what you needed. Essjay xx
Triple Negative Breast Cancer survivor since July 2018

Re: checking in during holidays

Posted by Clarke on Jan 3, 2020 6:02 am

 The holiday period has hi-lighted for me, a Cancer Survivor, an overwhelming thankfulness for

-  my wife and chief caregiver
-  the doctors who led me from panic to surgery
-  my surgical teams
-  all the doctors, nurses, therapists and hospital staff who helped in my treatment and care
-  family and friends who dropped or shuffled other things to provide help and support when we needed it
-  folk who supported us with visits, phone calls, emails, cards and prayers
-  whatever god or supreme power is guiding our universe

Now, as I recuperate at home and get back into things, I need to not try to pick up my old life, but to build a new style, more aware of the needs of others and of how I can leave someone or something better than I found them.  It’s payback time.

Clarke

Re: checking in during holidays

Posted by CentralAB on Jan 3, 2020 11:13 am

Vox:

He doesn’t want to sleep.  But his disease cause’s extreme tiredness.  The nurse came in last week… and I am the type of person who asks lots of questions – I want to know the who what where when and why of this disease.  Hubby ha started the process of MAID as I had posted a bit ago.  But you see I thought that the only reason he would go to that hospital was to have this procedure – so I asked the nurse where does hubby go when I can no longer look after him, or he decides that he doesn’t want to be at home….. I thought, he would go to a hospice or something, and then if he wants MAID he would be transferred to the hospital. But that is incorrect apparently.  When its time for hubby to leave the home he will go to the hospital.  So my point is I didn’t know this and asked the nurse who explained it… but then she said…. She doesn’t want any more conversation of his end of life…. WTF… if I don’t ask questions to her.. then who the hell am I to ask them too.  I have to tell you that comment really pissed me off, and I will probably address it the next time we see her.
We also met the palliative dr.  hubby likes him, but again I had to tell him that I had difficulties with his practice or lack there of – of not being able to perform MAIDs.  He openly admitted to us that although he believed that it should be the person’s choice, - he wasn’t emotionally able to perform the procedure even if he was allowed.
I don’t get it… but that is life.
 

It sounds like a lot on your plate to deal with, for sure. Im glad to hear your holiday was a happy one. I'm sorry you are having difficulty with the nursing/medical staff in communicating your husbands needs, and your's. MAID legislation is still very new, and as a former nurse, it wasn't even in place during my career. What that nurse should have done was to allow/encourage you to talk about it, so that they could actually give you an "effective" referral. I have had to do this with a few things,  especially "maternity" stuff. I had zero training in it, and it was just one of those things I had trouble doing. So I would always pass those things on to other staff who could handle what I could not. I would always just tell the patient that I will refer them to another person who could help, and I would not discuss my beliefs at all with them, in an effort to lay on the guilt or to criticize. They should not be "explaining" their own beliefs in such a way as to make you feel guilty about your's. Many health care workers have not yet had training re MAID, and that is part of the problem with some. Others can't/won't do it for "moral" or "religious" reasons, and while their rights to that should be respected, it goes two ways. They should always avoid making a patient feel guilty about their beliefs or customs. In the nurse-training, its called "listening and attending" skills. Its going to take time for everyone to sort this out, Some staff will not be able to do it. If you are having troubles discussing with some, find others who can & will discuss. As long as your husband is able to make his own choices, he should be able to access this service. If he is unable to make his own choices, then I don't know what happens there. best to get it written into a living will/advance directives, asap.

Re: checking in during holidays

Posted by Tiggrrrz on Jan 4, 2020 6:32 am

Hey Vox‍ .
Your story touched a nerve. So many doctors and nurses are unwilling to speak about the worst case scenario which, in your hubby’s case, sounds like this is where you’re at.
I don’t know why, especially in your case when it’s imminent. I think we’ve swung too far to the right or left where we only want to put a positive spin on cancer treatment and survival statistics. In reality, all this does is make us feel frustrated and diminutive. As if we’re not smart enough or knowledgeable enough to ask these questions. Bottom line, it’s our life or our loved ones life that makes it necessary to ask these questions in order to make an informed decision. I’m glad you’re going to confront this because if the care team you’ve been assigned can’t help you, you need to kick them to the curb ASAP so you and hubby can get back on track to enjoy each other for the remainder of his life. To me, it sounds like this is essential for you.
Your nephew sounds adorable and you’re right....you need as many hugs right now as you can get. Does hubby know this? Perhaps if he realized the importance of this in your life right now he might have more patience? I don’t know.....just thinking out loud here.
Crying is not a bad thing....it helps us to relieve the grief. Never feel sorry about crying. I’m not a huge fan of “therapy” groups because a good one is so very hard to find but, do you have someone you can sit down with and really discuss your feelings? Sounds like you need someone to be your person. If not, then this site is the next best thing.
Journalling is also a great outlet as you mention.
Living in the moment is crucial for you right now so, the sooner you can straighten out your care team with regards MAID the sooner you can live in the moment as I’m sure you can’t have peace of mind to live in the moment until this resolved. Calling the MAID coordinator is an excellent first step.
Hoping this message finds you a little bit better and Vox.....keep posting here so we can offer what little we have for your support.
Regards and best wishes.
TïGž

Re: checking in during holidays

Posted by Cynthia Mac on Jan 4, 2020 10:23 am

Clarke‍ , that’s a lovely post, and the only addition I would make is that sometimes we don’t get the opportunity to pay it back, but we can still pay it forward!

Vox‍ ,thinking of you today!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: checking in during holidays

Posted by Lianne_adminCCS on Jan 10, 2020 12:18 pm

Vox‍ 

Your description of your country home sounds so lovely and peaceful.
I wanted to check in with you and see how you are doing now that you are back into "reality" as you say.

Thinking of you

Lianne