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Mother Recently Diagnosed

Mother Recently Diagnosed

Posted by DMCC on Nov 9, 2020 11:39 am

Good day,

Not sure if this is where I do this or not.  My mother was diagnosed with a brain tumour and cancer of the lungs, liver and spleen.  She has "a few months to a year" until end of life.  I am completely lost in all of this.  She is in the hospital right now and may get out at some point, we're not sure.  I am single and have my own home, she is single and has her own home.  She has been disabled for 12 years already, she could walk with a walker but not well and now she cannot walk.  I'm not sure what to do, there's so much to this and of course, no perfect solution is in the cards.  Any direction on where to obtain advice, be it legal or support or other-wise is appreciated.

Re: Mother Recently Diagnosed

Posted by Brighty on Nov 9, 2020 11:57 am

DMCC‍ welcome  and thank you for posting! So very sorry to hear about your moms diagnosis.    To start you off I'd like to bring  your attention  to the cancer  information line.  1888 939 3333.  A friendly  voice will answer,talk to you as long as you want, and refer to whatever resources  you  may need.    You may also want to check out some discussion  groups under 'forums ' we have discussions  for caregivers where caregivers  share their tips..and under 'cancer  types click under 'brain cancer'.   You may  be able to connect  with others going through  something  similar.     Hope that help a bit. 
Help is out there. All you have to do is reach out.

Re: Mother Recently Diagnosed

Posted by DMCC on Nov 9, 2020 12:31 pm

 
Thank you Brighty,  I will check out the avenues that you've suggested.

 
 

Re: Mother Recently Diagnosed

Posted by Lianne_Moderato on Nov 9, 2020 4:30 pm

DMCC‍ 

Welcome to the community though I am very sorry for the reason. How fortunate your mother is to have you in her corner.

We have a forum for caregivers here: https://cancerconnection.ca/discussions/viewcategory/35   where others who have a loved one going through cancer share their tips, coping skills and support

A resource you may find helpful, if not sometime down the line, is Canadian VIrtual Hospice  https://www.virtualhospice.ca/. There is a wealth of information there as well as on this site within all our members.

Are you her main caregiver?

Lianne


 

Re: Mother Recently Diagnosed

Posted by Wendy Tea on Nov 9, 2020 4:46 pm

DMCC‍  Welcome. You have received great advice.  With respect to the financial aspect, things to think about are: Power of attorney,  a valid will,  having stocks, bonds, bank account information including passwords,  details of life insurance policies and passwords to any other online accounts.  I hope this helps. 

Re: Mother Recently Diagnosed

Posted by Kuching on Nov 10, 2020 8:19 am

DMCC‍ , so sorry to hear about your mother, this must be an awful shock for both of you.  

You say she has cancer in various different places, but I’m wondering where it originated?  Usually, it’s just one kind of cancer that has spread to other organs, and what kind it is will make a big difference to treatment and prognosis.  

As Wendy Tea‍ said, try and get some paperwork in order, for your mother’s sake as much as yours.  For instance, Living Will, Enduring Power of Attorney, and (if she wants it) a “Do Not Resuscitate “ form, will let the medical staff know how she wants to be treated, and also let you legally make decisions if she is unable to.  I know it all sounds grim, but it’s worth having in place even if you never have to use it.

i don’t know what province you’re in, but there will also be lots of community help out there, you just have to ask for it.  Social worker, dietician, physiotherapist, visiting nurse (if she comes home again) and so on.  Maybe you could delegate a friend or neighbour to make the calls to set this up.  Are you working?  If so, you will definitely need help if she comes home.  I have found that people really want to help, you just have to give them something definite to do - shopping, phoning, driving, whatever.

You have found a good site here.  We will get through this together!

 

Re: Mother Recently Diagnosed

Posted by WestCoastSailor on Nov 10, 2020 11:53 am

DMCC‍ 

Challenging times indeed. The changing role from being the child that the parent looked after to becoming the caregiver for an elderly parent is challenging. You have laid out the challenges well. As others have intimated, get the hard conversations and paperwork out of the way.

Then do what you can do. I've heard it said that resentments are unmet expectations. And it sounds like that would be a good description of your situation. A lot of expectations that haven't been met. So many families don't manage to reconcile over these issues and it results in a huge disconnection. That you recognize them and acknowledge them would seem to be the first step in resolving them.

I have no great wisdom to share. Keep talking about the plans. Try not to let there be any surprises. Keep expectations reasonable.

I hope things go well and that these last days create great memories and not bitter resentments.

Angus
My story: http://journey.anguspratt.ca

Re: Mother Recently Diagnosed

Posted by Cynthia Mac on Nov 13, 2020 6:14 pm

DMCC‍ , I’ve read your post and hope I can help.

You’ve got great advice already from Wendy, Brighty‍, Kuching‍, and the others, and I echo what they’ve said with regard to knowing what your mother’s wishes are and having them formalized through Power of Attorney, DNR, Living Will or whatever the name of the documentation is in your province. 

My father passed away this year, and he had what was called Direction for Care document. It was something that he did when he did his will, and it was essentially a contract he made with his doctors about how he wanted them to manage the end of his life. I’m sorry, I know this is difficult for you to read, but if you don’t know what your mom wants, the decisions can be even harder.

My Dad had lung cancer, and it had spread to his liver. My situation was like yours: I had my own house, and Dad had his. Dad went into hospital about a month before he passed away, and for the first couple weeks, there was talk of sending him home. I was so scared about how I would be able to manage to care for him in his own home, with only the minimal amount of help that home care would provide. Ultimately, that ceased to be an issue, but from that experience, I realized that if Dad had needed to go into care, I might have to acknowledge my own limitations and make those arrangements.

Please feel free to reach out to me if you have any questions.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Mother Recently Diagnosed

Posted by DMCC on Nov 16, 2020 5:00 pm

 
Update:  First off, thank you all who've replied and advised.  The doctor in charge has given me dire news.  The treatments are not helping.   In fact, they are hurting her quality of life at this point, she's barely conscious most of the time, having breathing problems, severe swelling, and a lot of pain.  He has recommended palliative care where he can use narcotics etc to help with the pain etc.  It's her choice, as she is of sound enough mind to make that decision and I am supporting whatever she chooses.  I have a meeting with her and the doctor tomorrow to discuss the details.  This is tough and has gone from everything seeming to drag on as I was always awaiting results and advice etc and it always took so long to get answers... to moving so fast that it's a whirlwind.

In response to Kuching‍  it seems to have originated in the lung.  And to Cynthia Mac‍  it looks to be a similar situation/outcome, I was ready to do whatever it took to have her at home or my house but also feared I wasn't capable of the level of aid she needs.
 

Re: Mother Recently Diagnosed

Posted by Cynthia Mac on Nov 17, 2020 4:47 am

DMCC‍ Again, I am sorry that your mom’s condition has worsened. You are wise to know that this is her decision and to support her decision. It’s a sign that you truly want her to have her highest good, and that isn’t always an easy thing to accept.

I hope your appointment with the doctor goes as well as can be, under the circumstances. I hope he will explain various options including hospice. A very good friend of mine just lost her dad. His wish was to die at home, but the doctors said that his wife wouldn’t be able to manage his care. He was able to get into hospice care, and my friend pointed out that it was the next best thing to being at home, so it might be something your mom would want to know more about.

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

Re: Mother Recently Diagnosed

Posted by Trillium on Nov 18, 2020 11:50 am

DMCC‍ - My thoughts are with you during this difficult time. My mother was in palliative care in hospital with a brain infection and we respected her wish of DNR. It was difficult to witness her passing but she had the best of care even though there was no room on the palliative care ward in the hospital.

Hugs for you during this difficult time, DMCC‍ 

Re: Mother Recently Diagnosed

Posted by DMCC on Nov 20, 2020 9:48 pm



 
 
Trillium‍ , Cynthia Mac‍ 

Mom passed away this morning.  She was going to have palliative care at home but changed her mind yesterday.   We had everything in the works.  The oxygen was delivered and I took the crash course in operating it.  The bed was being readied for delivery.  I think she was being mom one last time and making it easier on me.

I'm crushed right now
 

Re: Mother Recently Diagnosed

Posted by rivers on Nov 20, 2020 10:56 pm

dear DMCC‍ 
I'm so sorry to hear of your mom's passing this morning. My partner also passed in the hospital with a bed and oxygen waiting at home, 3 weeks ago...I'm learning that even when being there through the suffering, nothing prepares us for the shock and the loss...thinking of you tonight.

I'll be here to read your messages if you want to continue to share.

I hope you have someone who can hold you at this time.

Re: Mother Recently Diagnosed

Posted by Brighty on Nov 20, 2020 11:18 pm

DMCC‍  I'm so very sorry  for  your loss.   It's heartbreaking.     If you want we have a 'coping with grief 'group on the site where people  share all their feelings as they navigate  the grief process.    It's a great bunch of people  and very supportive.     
Help is out there. All you have to do is reach out.

Re: Mother Recently Diagnosed

Posted by Cynthia Mac on Nov 20, 2020 11:42 pm

DMCC‍ , I am so sorry for your loss and thank you for taking the time to update us.

Yes, I believe our parents do their best to protect us to the end. 

That “crush” you feel will last for a few weeks, I expect, and it will pay an odd visit after that. Give yourself permission to feel it — it will help your heart to heal.

Know that you did everything you could to honour your mother’s wishes, right up to the end. I believe she’s very proud of you.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Mother Recently Diagnosed

Posted by Trillium on Nov 20, 2020 11:52 pm

DMCC‍ - I’m so sorry for your loss. 

It is crushing to lose our moms.

May you find some moments of peace in the coming days.

rivers‍ - Sorry you lost your partner 3 wks ago.

Hugs to you both.

Re: Mother Recently Diagnosed

Posted by MCoaster on Nov 21, 2020 12:11 am

DMCC‍   I am so sorry that your mother passed away.  Even though a person tries to prepare themselves the shock and grief hits very hard and I hope you have caring support there with you.

Your comment about your mom choosing her time reminds me of my time as a hospice volunteer when it sometimes seemed that a person chose the time to leave.  A sign as you said of how much your mom cared.

Please be gentle with yourself and know that we are all here for you.

Healing thoughts.

MCoaster

Re: Mother Recently Diagnosed

Posted by Kims1961 on Nov 21, 2020 10:03 am

DMCC‍ Thank you for trusting us with the news of your mother. 

Your comment “ she was being a mom one last time” is powerful. Such a beautiful gift for her and you. 

We are here for you. Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Mother Recently Diagnosed

Posted by rivers on Nov 21, 2020 6:29 pm

thank you Trillium‍ 

Re: Mother Recently Diagnosed

Posted by DMCC on Nov 21, 2020 10:38 pm

Thank you all.  rivers‍  ,  I am sorry to hear about your loss, I really am.   I've definitely been beating myself up for all the things I think I should have done during this and before this and it's terrible that it takes this to realize that.  My mother was going through some things before this that she never told me about (I won't get into details) but even the things that I did know about... I wish I'd done more.  

Some good happens once in a while...  My mother took her wallet to the hospital when she went in and told me to take it as she thought it'd get lost or stolen and then she asked for it back at one point and then told me to take it again.  This happened a few times and yesterday when the worst day of my life happened, I realized that I couldn't find the wallet and I couldn't remember whether I'd had it last or whether it was at the hospital last and it wasn't in her room when we took her belongings home.  I spent a good deal of my near-sleepless night searching everywhere for it, I dumped out my recycling bin in case it had fallen off of the shelf next to the bin, I was searching in and around my car with a flashlight at 2am in case it'd fallen out of the car etc.  I was worried about the contents but more worried that I'd been so irresponsible with her possessions.  I called the hospital today to have them take another look at the rooms she'd been in, and then I got a call from a man about 2 hours away from here whose mother had passed the same night.  Apparently, the wallet had ended up on his mother's table and he'd taken it as her belongings... as one would.  He's mailing it to me on Monday.  We had a short discussion and a little cry together and I know that any decent human being would have done what he did but he didn't just ship it back to the hospital, he called and went out of his way.  Anyway, I thought that was nice and wanted to share that. 

Re: Mother Recently Diagnosed

Posted by rivers on Nov 22, 2020 10:24 pm

DMCC‍ that's a beautiful story about finding your mom's wallet. some light through the pain

It seems like most of us have these feelings of guilt...I am still grappling with this, but I think I can see the way out eventually...this thread that Brighty‍ started helped me start to work through this, at the very least finding out it's really common https://cancerconnection.ca/groups/forums/viewtopic/82/12209/61167 But from here it sounds like you did everything you could with the information you had, and especially respecting your mother's wishes all the way through. What more can we do? (is what I'm trying to ask myself every day...)

Re: Mother Recently Diagnosed

Posted by Missy8 on Nov 22, 2020 11:58 pm

DMCC‍ 

I am very sorry to hear about the loss of your Mum. It is such a hard part of life to cope with,  no matter our age. Our Mum’s are our Mum’s. It is very hard to lose the connection that they have provided for us our whole life. 
The most important thing is she knows she was loved, and vica versa, and she knew you were there for her. 
Sending you love and healing hugs...

Re: Mother Recently Diagnosed

Posted by Cynthia Mac on Nov 23, 2020 10:29 am

While guilt is not listed as one of the 5 stages of grief (denial, anger, bargaining, depression and acceptance), survivor guilt is, indeed, a “thing,” yet, those of us who had a caregiving role, invariably search our minds and our souls to try and make sure we did everything we could.

The short answer to that question is: WE DID.

For some reason, though, we still second-guess ourselves. Whether it was being forced to stay away because of lockdown (one of the reasons in my own case), or a wayward wallet, or not getting them to hospice (or getting them to hospice), we look for ways to find fault with what we did, or search for something that we maybe could have done so we can find fault for not doing it.

As Missy8‍ pointed out, though, the most important thing is that our loved one *KNEW* we loved them and they *KNEW* we did everything we could for them. It really isn’t necessary for us to keep searching beyond that (or to listen to any criticism that may arise from others. They don’t know what we did, so they don’t have the right.)

We did the best we could. Our loved one knew that and that we loved them enough to give them the care we did. 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Mother Recently Diagnosed

Posted by Lianne_Moderato on Nov 23, 2020 12:32 pm

DMCC‍  - I am so very sorry to hear of your mom's passing.  Your story of the wallet and connecting with a stranger over your shared grief was quite moving. Thank you for sharing that.

rivers‍  very sorry about your loss as well. I am glad you found that post helpful to you. That is the magic of a community like this. To share with one another and know we are never alone with our thoughts and experiences.


Holding you both in my thoughts in the days and weeks ahead.

Take care
Lianne